# Any Cerebral Palsy parents out there :)



## essie0828

Hello :hi:

My 18 month old daughter has just been diagnosed with diplegic cerebral palsy. She has Global Developmental Delay as well. We are just beginning our journey of specialists and therapies. I would like to hear experiences from other parents of kids with CP, no matter the type or age of the child. What I don't know about CP could fill an ocean but I will try to answer any questions you have.


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## essie0828

Surely I can't be the only CP mama in here ;)


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## helloeveryone

Hi my daughter is 10 years old my daughter has cp we found out when she was 2 years old..xxx
So no you are not the only cp mummy out there..


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## essie0828

:hi: Helloeveryone. I was getting a bit lonely in here. Thank you for your reply!
May I ask about your daughter? What type of CP does she have? Do you mind to explain a typical day? Therapies, exercises, stretches, school? And of course silliness :). 

For us Hayley is still very much a baby and her CP is starting to evolve some. She started out hypotonic but is starting to develop tightness in her hamstrings and calves. Her Achilles tendons are tight as well and every step she takes (assisted by me) is on her toes. She also stands on the insides of her ankles a lot. We are still in the beginning processes of therapy, PT, OT and Speech. I'm very inexperienced with CP but I read every thing I find about it. 

DD is such a great little girl. She's super sweet and laughs at just about everything. Gives lots of cuddles and loves to try and feed everyone. I usually end up getting a drool covered pacifier shoved in my mouth at least once a day :haha:


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## helloeveryone

essie0828 said:


> :hi: Helloeveryone. I was getting a bit lonely in here. Thank you for your reply!
> May I ask about your daughter? What type of CP does she have? Do you mind to explain a typical day? Therapies, exercises, stretches, school? And of course silliness :).
> 
> For us Hayley is still very much a baby and her CP is starting to evolve some. She started out hypotonic but is starting to develop tightness in her hamstrings and calves. Her Achilles tendons are tight as well and every step she takes (assisted by me) is on her toes. She also stands on the insides of her ankles a lot. We are still in the beginning processes of therapy, PT, OT and Speech. I'm very inexperienced with CP but I read every thing I find about it.
> 
> DD is such a great little girl. She's super sweet and laughs at just about everything. Gives lots of cuddles and loves to try and feed everyone. I usually end up getting a drool covered pacifier shoved in my mouth at least once a day :haha:

Hi my daughter Amy is a lovely girl she copes with things well,not sure what her cp is called maybe you can tell me ?? her cp mainly affects her legs but on one leg her left it is worse it does affect her hands but Not as bad as her legs...
She wears casts one big one on her left leg and a little one on her right side..
She has had a few operations including her Achilles' tendons cut and lengthened ..because they were getting tight..but I think she was about 7 before they did that..(it did work for a while but it wears off when they grow )
She has had lots of Botox in her ankles and hips..this relaxes the muscles so they can put their heels down a bit more..(but these injections only last for a few months and they can only do them ...(well for. Us every year or two.) 
Amy has exercises to do every day...
When did you find out about your daughter having cp ??
She sounds a happy little girl..
.anyway better go now I have 5 other children so always loads for me to do with all Amy's appointments and kids clubs and 3 different school runs..washing clothes etc......
But I love it really.....speak soon..xxx


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## essie0828

Oh my you are a busy busy mama. :hugs: Wow, Amy sounds a lot like Hayley :). Hayley was diagnosed on Aug 19, just a week before she turned 18 months old. According to the neurologist her arms were largely unaffected but she couldn't get a good exam on her arms at the time. When they have high tone (tightness) and only 2 limbs are involved, legs or arms it's considered ******* diplegia. If all limbs are affected it's ******* quadriplegia. There are also combinations or mixed CP. And tons of varying degrees of severity. My best guess is Amy may be ******* quadriplegic or have mixed CP. Do her arms move in slow, uncontrolled "writhing" movements? If so she may have atheoid cp involvement in her arms and ******* diplegia in her legs. It's all super confusing. I have a good link to a website that describes the different types of CP. I'll post it in a bit so you can try and match up Amy's symptoms to a type. 

I just knew Hayley had CP when she was about 12-14 months old. I could just tell. Her feet always gave it away. Not to mention she had lots of risk factors for developing CP. I had a history of miscarriage, thyroid disease, and she had a very traumatic birth. She was born via c-section, breech, and her head was stuck inside for some time. She was born blue and not breathing. :( We thought she was a still birth but after the longest few min of my life we finally heard a tiny weak cry. She rallied after that and we got to take her home after 2 days. 

Gosh helloeveryone, you have to be super woman! I can't fathom how you get everything done without a cape and super hero powers :haha: Six kiddos! But you are right. It's the best job in the world :hugs:


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## essie0828

Ughh B&B censors the word [email protected] So all those little stars in my post are the word [email protected] ;)


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## essie0828

https://emedicine.medscape.com/article/1179555-overview#1


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## essie0828

https://www.moveforwardpt.com/symptomsconditionsdetail.aspx?cid=29dfec56-f6ff-4609-a92b-8626c9e544c0


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## essie0828

The last link is the better one ;)


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## lilesMom

Hi I was coming on here to make a post pretty much exact same as it initial one . My son is 15 weeks. He has mild cp. He has hemiplegia on right side. He had a large stroke soon after birth. He is very good though. Have been doing physio with him since a few days old and am starting proper appointments now really. He is a little sweet heart . We r hoping with all the help he will be getting he will do really well.


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## essie0828

Hi lilesmom :hi: 

It's great that you have been getting therapy for your LO since birth. I'm sure it will help him so much. He's sooo young. Makes me miss when Hayley was just a little squish ball ;) 

We are just beginning PT and speech therapy for Hayley. We met her therapist and scheduled times to meet yesterday. :) I'm excited to try and help her walk. She really wants to :) 

How is you little man about feeding? We used to have trouble with DD. She ate 2oz every 2hrs until she was 4mos old. Whew! Thinking back now, I think she was tiring out because of the CP but we didn't know it.


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## lilesMom

Aw that's great she will be getting help to walk. Therapy will do her so much good. X 
They reckon cos Simon can bear weight on both legs that heveill crawl and walk too. He might be later but I dont care so long as he can. ;-) 
Simon is a little milky guzzler thank god. He has silent reflux which we r just getting a handle on with zantac and carobel. They've gonna check his swallow too just in case he has a problem with it. 
He does tire pretty fast. It never dawned on me he prob gets more tired cos he has to pur more effort into moving . 
Hope ur therapy app goes really well x


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## mummytobe_93

i'm not a parent to a cp child but i have a family member with sp*stic quadraplegic cerebral palsy that i also care for.

He is 13 and cannot talk or walk, and also has the mind set of a two year old- he is very loving and laughs a lot, he is also fed by gastro tube and is on lots of medication.

he has lots of therapy physically and also speech therapy so he has learnt to make more noises which occasionally sound like words. its crazy how cp sufferers (if you can call them that?) range so much physically and mentally!


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## lilesMom

Hi mummytobe. 
Cp does have a massive range doesn't it. 
No wonder I didnt really know what to expect when we were told ;-)
Do u care for him on ur own hon ? Xx


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## essie0828

mummytobe_93 said:


> i'm not a parent to a cp child but i have a family member with sp*stic quadraplegic cerebral palsy that i also care for.
> 
> He is 13 and cannot talk or walk, and also has the mind set of a two year old- he is very loving and laughs a lot, he is also fed by gastro tube and is on lots of medication.
> 
> he has lots of therapy physically and also speech therapy so he has learnt to make more noises which occasionally sound like words. its crazy how cp sufferers (if you can call them that?) range so much physically and mentally!


The range is baffling! And the combinations, and types :wacko: It's very confusing. 

It's like now that my daughter has been diagnosed, I see CP everywhere. Kids at DDs appointments and out in public and each one is different. The brain is such a complex organ.... It really makes getting an accurate prognosis difficult. Especially for the younger kiddos like my DD. We really don't know what to expect with her. The not knowing is hard.


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## essie0828

Mummytobe it's funny you say that your family member with CP is very loving and sweet! That is the one and only consistent thing I've seen in people with CP. Their smiles, (my DD included ;) :cloud9: ) are amazing. Not fake at allLll


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## essie0828

Lilesmom, we still don't know what to expect with DD as well, because she is still quite young. :hugs: The uncertainty is scary.


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## essie0828

Hey helloeveryone :hi: How's it going? Hope things are well :hugs:


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## lilesMom

essie0828 said:


> Lilesmom, we still don't know what to expect with DD as well, because she is still quite young. :hugs: The uncertainty is scary.


I try not to get ahead of myself and just enjoy now. But is hard sometimes. 
He is doing great now and im hoping he continues it ;-) 
Xxx


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## helloeveryone

essie0828 said:


> Hey helloeveryone :hi: How's it going? Hope things are well :hugs:

Hi yes things are well here, had a busy day trying to catch up with all the washing and ironing my lot make..
We got a dishwasher so kids are well pleased they don't have to wash up so much...
We also have got Amy a bath lift because she was getting to heavy to lift in and out of the bath...( she loves it ,,,we should of got it years ago ) 
Anyway take care speak soon. Xxx


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## lilesMom

hi helloeveryone, 
i thought we had lots of washing but theres only 3 of us :) 
glad amy likes the lift xx save ur back too x
no news here really, we r off to simons first appoinmnt at place that speacialises in disabilities, im a bit nervous for no reason :) 
hi to all xxx


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## ladyluck8181

Hellloooo, my youngest son (he's 6) has ******* diplegic CP mainly affecting his lower limbs, he cannot walk and uses an electric wheelchair to get around and for very short distances like 10m he can use a K walker. 

His CP was caused by a haemorrage I had at 12 weeks pregnant, the dr's were amazed to find he was still alive as there was blood everywhere, I spent a month in hospital and 3 months of my pregnancy on bed rest.

I bled right upto 22 weeks and they wanted to deliver me at 28 weeks due to this but thankfully they let me be once it stopped. I went into labour at 32 weeks and he was born screaming with no breathing issues, we spent 18 days on NICU.

At 5 months he caught viral meningitis so quite honestly the kiddo has had it tough since conception :rofl: but he is the most amazing strong willed little boy anyone could ever have the pleasure of meeting!

He is attending a main stream school and he has lots of friends :thumbup:

Looking forward to getting know y'all xxx


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## lilesMom

Hi ladyluck welcome xx
Ur boy sounds amazing xx
A right little fighter x
My little dote is only 4 months. 
He has right side hemiplegia.
He had a stroke and secondary seizures the day he was born. 
They broke his shoulder delivering him.
He also had flow murmur waiting to be checked out and silent reflux. 
But also is really cuddly and smiley ;-) 
Welcome to the thread xx


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## essie0828

Hi ladies! :hi:

Welcome ladyluck :hugs: What a little miracle you have. And what a fighter! It's great he's in mainstream school with his pals. :happydance: We hope DD will be able to do the same. She's trying so hard to walk on her own right now that we are hopefull she will be able to walk with some assistance. She's still so young though and I have noticed more and more tone issues. Did your little man get progressivly worse with high tone (stiffness) as he got older? I will be asking you lots of questions since our kiddos have the same diagnosis. ;)

Helloeveryone :happydance: and Yay! For dishwashers and bath lift. I know they are such a help. I grew up without a dishwasher and now I LOVE mine :haha: Hope things are well. How's Amy and the rest of your herd :haha: My DH grew up in a family with 4 kiddos, he said it was a madhouse most of the time. Update when you can. :hugs: Girl I still don't know how you do it all.

Lilesmom, oh my. Your poor little guys' shoulder. He's a tough cookie as well :hugs: How's he been doing? Hope he's doing great :hugs: 

DD's therapy schedule is starting to explode! We have 3days of outpatient therapy at a nearby rehabilitation hospital and 2 days of therapy at home with a PT and a speech therapist. :wacko: She has just had tubes put in her ears this past Wednesday and she has been really vocal since. I'm hopefull that at least some of her speech difficulties were related to fluid on her ears. Next week we see the plastic surgeon about getting a remoulding helmet. She has mild plagiocephaly and her right ear is anterior because of it. The way she headbutts us sometimes I wonder if we will survive it. :haha:


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## ladyluck8181

essie0828 said:


> Hi ladies! :hi:
> 
> Welcome ladyluck :hugs: What a little miracle you have. And what a fighter! It's great he's in mainstream school with his pals. :happydance: We hope DD will be able to do the same. She's trying so hard to walk on her own right now that we are hopefull she will be able to walk with some assistance. She's still so young though and I have noticed more and more tone issues. Did your little man get progressivly worse with high tone (stiffness) as he got older? I will be asking you lots of questions since our kiddos have the same


Jack is very tight on his left leg, we have already had 3 lots of Botox in his calves and hamstrings, last lot they put him in casts for a month afterwards to give it the best chance to work. He also wears day AFO's and tomorrow he's being measured for calipers in a joint physio orthotics appt.

His left leg turn in is so bad that the orthopaedic surgeon is now looking at a surgery that he wanted to originally put off until he was about 12 but he now feels it would be in jacks best interests to bring it forward. It involves breaking both the thigh bones and resetting them to lengthen the muscles :cry: breaks my heart to think he will have to suffer that one day. The turn in is causing his hips to displace though so I understand why he wants to bring it forward.

We give Jack very intensive physio, mainly my hubby as he is a qualified physiotherapist but we try to give jack as much exercise as he will allow us.quite honestly he'd be happy just exercising his damn thumbs on that flipping xbox!


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## lilesMom

Hi girls xx

Essie Simons tone is a 1 now they said but theu warned it can getvworse as he grows. 
I'm glad ur getting lots of help now. She will be walking in no timr xxx
They cancelled my app last week. Someone rang n sick so first app at new olace is now tomoro 
What is plagiocephaly? They hve concerns about my ds slower head growth so im curious. X


Ladyluck hugs. So hard to see um suffer even when u know its for their good xx


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## ladyluck8181

Well we went to physio/orthotics today and instead of calipers he has been measured for cables??? Anyone heard of these? He will wear a belt around his waist under his clothing which has a cable running parallel with his leg on the outside of his leg. It will stop his leg turning in as it will hold it in a forward facing position, he will still have free movement backwards and forwards but it completely stops it moving sideways/twisting. 

Was very surprised at this as we were told calipers originally xx


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## ladyluck8181

Forgot to add the other end if the cable is attached to a bracket on his AFO's


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## lilesMom

That sounds more comfortable than calipers doesn't it? 
I guess they r coming up with new stuff all the time. 
Im totally green so I haven't heard of it. 
DS is only 4 months so any of that stuff he may need is ahead of us xx
Hope they help him hon. 
Sounds like he should hve much freer movement while still doing the job intended. .


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## lilesMom

Sorry dumbie here but what are afo ?


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## ladyluck8181

AFO's are splints, kind of half a plastic boot that he wears to keep his foot in the right place xxx


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## stick2000

hi, my daughter has just turned 4 and has right sided hemiplegia, along with global development delay, mild scoliosis, and a gastrostomy feeding tube. Not walking yet, so we use wheelchair, but she has just got a JCM Trekker walker. I'll post some more later when I've got some more time (at work at the moment) xx


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## lilesMom

Welcome hon xx


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## essie0828

Hi stick200p :hi: Welcome. 

Girls I have been lazy with my B&B time. I've been popping on to read but not taking time to reply :nope: As you all know very well, things are busy with therapy and appointments. We're getting fitted for AFO's next Wednesday :happydance: My baby girl wants to walk so bad, I'm desperate for these to help her. So we saw the plastic surgeon Wednesday and NO remoulding helmet :happydance: she does have a bit of a flat spot but the results wouldn't be great at her age and I think it's best to just leave it be. She's already doing so much why stress her out with a helmet for aesthetic purposes. She has her first cold since the tubes were put in her ears and I must say so far it's been much more mild. But she's still grumpy and not sleeping well so we're all wore out.

Gosh I feel like such a wuss saying that knowing that helloeveryone has 6 to nurse through flu season :wacko: Hope all is well momma :hugs: 

Lilesmum how's the little squish doing? :) Hope he is great. Go little milk monster! ;)


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## lilesMom

Hey hon. Glad she is getting her help to walk xxx 
Fx she be up and about soon. 
Simon is alright. They r thinking his reflux may ne swallow issue. 
I really hope not. 
I blame his medication but I don't know. He will be checked on 21 next month.
Hoping it's ok.
He also is getting his eyes checked . They reckon his left eye unturned out.
I stupidly thought the weakness on his right side was it but I guess not. 
Bit bummed. It's really hard to do his physio cos he keeps choking when he lies down. Anyone got any tips?


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## essie0828

Oh dear :hugs: lilesmom. Omg what you just said brought back memories..... DD was the same at that age. Seriously. She choked so easily lying flat that we constantly had to keep her propped up. We tried everything and eventually started her on solids a little early. I found that giving her a thicker meal kept it down. We went slowly with cereal at first giving her some by spoon before her bottle. It helped. Honestly though, even though everyone said don't put cereals in her bottle, I did, and it worked for us. Along with small meals very often. Hayley ate 2oz every 2 hours until she was almost 6 months. :hugs: it was a tough time for us. I never seemed to sleep because I was terrified she would choke in her sleep. And she did. Several times, and each time was terrifying. Finally we figured out that having her sleep with her head elevated and making sure her food was thickened nearly cured the reflux. We didn't have medication to contend with though. If his meds make it worse I would mention it to his docs.


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## essie0828

stick2000 said:


> hi, my daughter has just turned 4 and has right sided hemiplegia, along with global development delay, mild scoliosis, and a gastrostomy feeding tube. Not walking yet, so we use wheelchair, but she has just got a JCM Trekker walker. I'll post some more later when I've got some more time (at work at the moment) xx

Yay for the new walker :happydance: How long has your DD had the gastrostomy feeding tube? Does she have problems with swallowing? I know that can sometimes come along with CP. :hugs:


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## essie0828

Oh and lilesmom I almost forgot! DD eyes turn out some to. Amblyopia. It's very treatable and associated with hypotonia. DD wears a patch over one eye for 1hr a day. So Monday, Wednesday, Friday we patch her left eye and Tuesday, Thursday, Saturday we patch her right. She gets Sunday off. This strengthens her eye muscles and has helped her a lot. We've been doing it for almost 3 months now. Hopefully his case will be similar :hugs:


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## essie0828

ladyluck8181 said:


> Well we went to physio/orthotics today and instead of calipers he has been measured for cables??? Anyone heard of these? He will wear a belt around his waist under his clothing which has a cable running parallel with his leg on the outside of his leg. It will stop his leg turning in as it will hold it in a forward facing position, he will still have free movement backwards and forwards but it completely stops it moving sideways/twisting.
> 
> Was very surprised at this as we were told calipers originally xx

I have never seen these! DD also has issues with her hips wanting to turn out. She "W" sits at every possible opportunity and for now we're really working on "ring" sitting to stretch her hips. I'm very curious about these cables. I really hope he can postpone surgery some by wearing these. That surgery sounds terrible :cry: Wtg momma for having live in physio for him :haha: It's really neat that his dad can do his therapy. And as far as the Xbox goes...your DS has good taste:haha: I would much rather play mine than work as well ;) so I can see his point of view there. Lol. :dohh:


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## lilesMom

essie0828 said:


> Oh dear :hugs: lilesmom. Omg what you just said brought back memories..... DD was the same at that age. Seriously. She choked so easily lying flat that we constantly had to keep her propped up. We tried everything and eventually started her on solids a little early. I found that giving her a thicker meal kept it down. We went slowly with cereal at first giving her some by spoon before her bottle. It helped. Honestly though, even though everyone said don't put cereals in her bottle, I did, and it worked for us. Along with small meals very often. Hayley ate 2oz every 2 hours until she was almost 6 months. :hugs: it was a tough time for us. I never seemed to sleep because I was terrified she would choke in her sleep. And she did. Several times, and each time was terrifying. Finally we figured out that having her sleep with her head elevated and making sure her food was thickened nearly cured the reflux. We didn't have medication to contend with though. If his meds make it worse I would mention it to his docs.

Thanks hon. Xx
Im ok again today. Just had to readjust ;-)
We tried solids . First day he loved it. 
Next 2 days he choked so it's safer to wait till swallow is checked
Little man awake. Il be back ;-)


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## essie0828

I agree lilesmom. If he's still having trouble even with solids it's better to wait. :hugs: So sorry it didn't work for him. The downside to solids is if they do choke it's harder to clear :nope:


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## lilesMom

If the barium test turns out ok then cereal in uis bottle is a good idea.
Carobel made his reflux so much better but his nappies awfull and tummy pain. 
He is in his cot now. ;-) we got a smaller one so I can hve it right byme in bed. 
Im gonna finish reading now . Xx


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## lilesMom

Thanks essie. Fx something like that for Simons eye too x
I know he can see us and his toys and all so should be fine. 
How's the starting to walk going? Good I hope x 

Hi to everyone xx


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## essie0828

lilesMom said:


> Thanks essie. Fx something like that for Simons eye too x
> I know he can see us and his toys and all so should be fine.
> How's the starting to walk going? Good I hope x
> 
> Hi to everyone xx

Hayley got fitted for AFOs today :happydance: So hopefully the walking will soon follow ;)
She is getting a new 2 stage AFO system that's like a tiny boot that snaps inside another taller boot. When she crawls we leave her in the tiny boots and when she is trying to walk we snap her into the taller boot. Can't wait to get them. 

I'm sure Simons eyes will be fine. Just ask his eye docs about it :hugs: He's so little they may need to wait a bit. 

How is everyone doing?! :hi: How are the kiddos?


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## lilesMom

Thats great hon. Will ye be long waiting fir them ? 
It's great we can get so much to help los now ;-) xx
Simon hasn't seen the eye doc yet. Just referred.
Prob take a bit cos they prob can't do much for him yet. 
Nor much goin on here
Goin to cranial osteopath tomoro. Hope it helps.
He gotta letter for eeg for 22 of this month which is great.
Might mean coming off the seizure med. 
Which I think aggravates if not causes his reflux 
That will be a busy week.
Swallow check day before and heart echo day after.
We should get a lot if answers from those 3 days. 
Good I hope ;-)
Hi to all xx


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## essie0828

Oh wow that will be a busy week lilesmom. I hope you get good news to :hugs: Does he have seizures often? Hopefully the eeg will be good and he will come off the medicine well. FX'd for y'all.


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## lilesMom

Hey xx
No thank god. He hasn't had um since he was 2 days old.
But they found it hard to control um in hosp. Had to try 3 dif drugs and keep him sedated for 3 days.
They said it was safer to be on it and not need it than not on it and need it ;-)
I'm hoping that eeg is clear . They were looking at taking him off it at 6 months if all was well.
So fx ;-) 
How r things with u hon ? Xx


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## essie0828

Awww poor lil guy. :hugs: That must have been so scary for you. It's great he hasn't had one since though :happydance: How has his reflux been lately? 

Hayley is doing good despite a nasty cold. Her therapists are falling in love with her and she them. I'm sure she would go home with her physical therapist :haha: She's making new friends, giving away all my hugs and just being super sweet. She's up on her feet a lot more at play and is managing to stand for a few seconds at a time on her own. :happydance:


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## lilesMom

Wow hayley sounds like she is coming on super fast. 
Well done hayley.
Thank god she likes her physio. Wont be a chore for her so. 
She really will hve u chasing her in no time. Hee hee

Simon is doin pretty ggood.
It still bothers him but we hve both learnt how to make the best of things for him.
He is sitting up more which is helping. 
Osteopath is helping slowly I think
But only 2 sessions yet so I'm not sure how much ;-)
Not much news here at mo really


Hi to all xx


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## essie0828

What does the osteopath do? 

DD was in therapy with a little man about the age of your lil guy. What a cutie! They were helping him learn to roll on a wiggly board. Pretty neat to watch. He was babbling up a storm. :) He had right side involvement but no diagnosis of CP yet. He was a chub to. Milk monster for sure :haha:

No therapy today :happydance: Got rescheduled for next week and that's fine by me ;) Gonna take DD to feed the ducks! :)


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## lilesMom

Hope u enjoyed tge duck feeding ;-)
Part of me is looking forward to when Simon can do stuff Like that
But part of me wants to keep my huggy baby ;-)
Simon s physio is rolling and stuff too. 
He loves it now. He laughs when he knows it's about to happen ;-) 
The osteopath doesn't look like she does anything barr put her hands on various parts of his head. Neck and tummy. Its very gentle manipulation I think.
It def freed up his tummy and gave him a great sleep last nt


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## essie0828

That's neat! I've never heard of an osteopath. :dohh: Good that it helped lil squish to sleep.


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## lilesMom

Full nt in cot again. Woohoo ;-)


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## essie0828

lilesMom said:


> Full nt in cot again. Woohoo ;-)

DD still doesn't do this :haha: Wtg!


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## lilesMom

Thanks im very happy . He loves his cot now ;-)


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## essie0828

Had DD's PT assessment and was told she is about 10 months behind in gross motor and fine motor skills. That was a little hard to swallow. I was hoping that the improvement that she has made would put her a little farther ahead. Probably best not to dwell on the numbers I suppose.


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## nearlythere38

Hello ladies

My daughter Ava doesnt have a diagnosis at present, but i think shes poasibly showing signs of CP. She has small optic nerves, and possibly Cortical Visual Impairment. She has mainly hypotonia, particularly in her trunk and neck, but changeable tone in her limbs. They have been noted to be hypertonic at times. She has a protruding tongue, open mouth posture. She has significant reflux and cows milk intolerance. Shes developmentally delayed and shes now presentinh with abnormal movements, including throwing herself backwards, jerky arms, hitting herself in the face, only able to lift both legs together briefly.

Shes due an MRI scan in 2 weeks time which i am anxious about but i know we really need to see whats going on. Im having good days and bad days, im worrying a lot about her future and i know i should concentrate on the here and now but the uncertainty is frightening


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## lilesMom

essie0828 said:


> Had DD's PT assessment and was told she is about 10 months behind in gross motor and fine motor skills. That was a little hard to swallow. I was hoping that the improvement that she has made would put her a little farther ahead. Probably best not to dwell on the numbers I suppose.

Forget other kids. Forget timing.
Important thing is progress and that she is coming on all the time xxx


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## lilesMom

Ava s mom welcome and hugs xx
Hope MRI goes well for ye and ye get answers soon.
Answersmean u will get more professional help fir ava 
nAnd u can start to get ur head round it all. Xx
Keep us updated please xx
We r always here to chat.
Ava sounds quite like Simon. My ds.
He had a stroke on his first day of life and has cp.
I'm not saying I think ava has either but just that they sound very similar xx

Hi to allxxx


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## nearlythere38

Thank you. Did they know at the time that he had a stroke or was that something you found out later?

I had a c section and something went wront with the spinal block and i passed out. I was later told thag i had almost had no pulse and ny blood pressure went very low. Sincr reading up on cp i am concerned this has deprived her of oxygen


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## lilesMom

My little guy was having seizures they were finding hard to suppress.
They tried 2 drugs that didnt work. Third one did thank god.
They had 2 theories at the time. 
Infection or stroke. 
He was treated for infection while waiting for MRI.
He was on anti virals and a few kinds of antibiotics.
After MRI they knew it was a stroke.
Theu coyld tell how large it was and what body functions it was likely to affect.
Simon has right side hemiplegia . Hypo muscles. 
Left eye turned out. Also bad reflux (is getting swallow checked soon )
Also gets over stimulated easily. 
Plus he has a heart murmur and possible epilepsy thrown in for good measure ;-)
He is also highly intelligent. Really sweet and super cuddly ;-) 
We r lucky he is with us and so good.
They said his stroke was very big.
Hope u get good news hon. Xx
It is nice to hve a name for it and then a plan of action xx


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## nearlythere38

Aww bless him so much to deal. Must have been very hard for u going through that. Im glad to hear hes doing well. Ava had a swallow done too it was fine, just confirmed reflux. 

We dont really get much interaction from ava. I think thats mostly down to her visual impairment though. She didnt smile until 4 months. And now we have to work hard blowing raspberries on her face to get a smile lol. She doesnt reach for anything or hold anything. No rolling over, unable to sit up even in a bumbo o jumperoo. Were working on a sensory box to use with her and the occupational therapist has just started coming so im hoping it may help.


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## essie0828

Nearly there. :hi: welcome :hugs: Hope you find out some answers soon hun. In the mean time you will love what the occupational therapist will do for her. It's my favorite kind of therapy for DD, she responds so well to it. I'm sure your little squish will benefit:)


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## lilesMom

nearlythere38 said:


> Aww bless him so much to deal. Must have been very hard for u going through that. Im glad to hear hes doing well. Ava had a swallow done too it was fine, just confirmed reflux.
> 
> We dont really get much interaction from ava. I think thats mostly down to her visual impairment though. She didnt smile until 4 months. And now we have to work hard blowing raspberries on her face to get a smile lol. She doesnt reach for anything or hold anything. No rolling over, unable to sit up even in a bumbo o jumperoo. Were working on a sensory box to use with her and the occupational therapist has just started coming so im hoping it may help.

I'm hoping test goes well for simin too. 
Glad it went well for ava xx
Did they say anything about when reflux may end? 
Having crappy reflux dsy here x
Therapy will def help her x
Thats tough she is finding it hard to interact. Hugs xx


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## essie0828

Poor Simon :hugs: Hope his reflux calms soon.


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## lilesMom

How are ye essie x


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## essie0828

:hi: hun, we're doing pretty good today :hugs: how's the little milk monsters' reflux doing?


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## lilesMom

Glad it's a good day. Xx
Better day today. Reflux still crappy but less so than yest ;-) 
Least it isn't worse ;-) 
No.news really here. 
Looking toward to and dreading tests next week..
Looking forward to answers but nervous I'm case not the news we want to hear ;-) xx

Hi to all xxx


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## nearlythere38

Lilesmun they said we would see an improvement once she started solids. We have seen an inprovemdnt but it hasnt gone away altogether. No medication works for her, i guess because its related to low tone i her trunk, so i expect she will continue with some reflux until her tone improves.

My baby girl was baptised today  such a lovely special day


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## lilesMom

Thanks hon. If swallow goes ok Mon week.we will ne starting solids. ;-)
Thanks.
Aw that's lovely. We had my son's christening a few weeks ago.
Was a really lovely day too.
So nice to hve fun for a change ;-) xxx


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## lilesMom

Ps they said same to me at last visit. 
That rwflux is prob due to low tone.
I'm learning so much. Just wish it was for a different reason. ;-) 
Xxx


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## nearlythere38

Ah fingers crossed! She sleeps better on a night now with having solids at supper time.

Yes it was a nice change to have something positive to think about. She looked beautiful in her dress, she cried all the way through church lol


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## lilesMom

Hee hee Simon started giving out a bit halfway through.
He bawled for water ;-) id say it was cold


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## essie0828

Constipation. Do your kiddos have trouble with BMs?


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## essie0828

Hayley has been having trouble lately. She's cutting her canine teeth and has been a very picky eater so we have been giving her an osmotic laxative and in dire straights using liquid glycerine suppositories. 

What remedies do you use if your kiddos are constipated?


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## lilesMom

essie0828 said:


> Constipation. Do your kiddos have trouble with BMs?

Yes and no. 
He would hve way worse trouble but he is on comfort milk for constipation
And I give him 4 oz half strength bottle every day. Ie. 4 water to 2 scoops.
Plus osteopath works on his tummy and I give him massages.
He goes at least once a day with all these.
The reflux and constipation are all most likely a result of his low tone.
Muscles in his gut are weaker too.
Poor lo s hve so much to deal with. Boo to cp . Xxx


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## lilesMom

Hayley is old enough for diluted pure prune juice now.
I used to hve it while preg and on iron. I can guarantee it works ;-) 
What foods does hayley mostly eat. Carrots are a good cleanser.
Lots of fluids is most important to soften poo.
Sorry tmi ;-) 

Good day here today. ;-) 
Simon really is the best sweetest baby. 
Hope everyone is well x


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## essie0828

Lol, no tmi here. I think I have the only LO in the world that hates juice :haha: She will not touch it in any form but will eat fruit. It was a nightmare when she was younger and less mobile but now she only has trouble from time to time. I can't wait till these teeth finally pop through.


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## essie0828

Just wanted to brag on DD a little. She has been doing so well with physical therapy, and it shows. She was all over the house today pulling things outta drawers and cabinets, playing in the dog bowl, and having me chase her everywhere. Her crawling is very good now and she's standing flat footed more on her own. It's such an improvement :cloud9:


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## lilesMom

That's great hon.
She must be delighted with herself being more mobile x
I'm looking forward to the chasing stage here too ;-)
If essie likes fruit would she drink smoothies? 
U can sneak some juice in ;-) 
I'm so glad therapy is doing her so much good xx


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## ladyluck8181

Heeeey!! I've been gone for a while so I'm gonna try and reply to some points over the last 14 days that were raised so sorry if anyone wonders why the heck am I ragging up old posts!!! 




essie0828 said:


> ladyluck8181 said:
> 
> 
> Well we went to physio/orthotics today and instead of calipers he has been measured for cables??? Anyone heard of these? He will wear a belt around his waist under his clothing which has a cable running parallel with his leg on the outside of his leg. It will stop his leg turning in as it will hold it in a forward facing position, he will still have free movement backwards and forwards but it completely stops it moving sideways/twisting.
> 
> Was very surprised at this as we were told calipers originally xx
> 
> I have never seen these! DD also has issues with her hips wanting to turn out. She "W" sits at every possible opportunity and for now we're really working on "ring" sitting to stretch her hips. I'm very curious about these cables. I really hope he can postpone surgery some by wearing these. That surgery sounds terrible :cry: Wtg momma for having live in physio for him :haha: It's really neat that his dad can do his therapy. And as far as the Xbox goes...your DS has good taste:haha: I would much rather play mine than work as well ;) so I can see his point of view there. Lol. :dohh:Click to expand...

We saw Ortho surgeon last week and they have decided that now is not the right time for the hard tissue surgery, so no bone breaking! Buuuut they are going ahead with soft tissue surgery, it involves cutting some muscles in various places, groin, hamstrings etc. Whilst I know this is the kinder of the two surgeries I am still gutted that we have reached this point already, Jack is, of course, not bothered. His only response to the whole thing was want present can he have for going into hospital. It will be a 5 days stay in hospital and 2 weeks off school after that, we are looking at early new year for it to take place.




essie0828 said:


> Hayley got fitted for AFOs today :happydance: So hopefully the walking will soon follow ;)
> She is getting a new 2 stage AFO system that's like a tiny boot that snaps inside another taller boot. When she crawls we leave her in the tiny boots and when she is trying to walk we snap her into the taller boot. Can't wait to get them.
> 
> I'm sure Simons eyes will be fine. Just ask his eye docs about it :hugs: He's so little they may need to wait a bit.
> 
> How is everyone doing?! :hi: How are the kiddos?

Have you got Hayley's AFO's yet? We found these had such a huge impact on Jack's life and changed everything very quickly, good luck Hayley!!! 



essie0828 said:


> Hayley has been having trouble lately. She's cutting her canine teeth and has been a very picky eater so we have been giving her an osmotic laxative and in dire straights using liquid glycerine suppositories.
> 
> What remedies do you use if your kiddos are constipated?

Do you have something like weetabix in the states? When Jack's bowel's were bad, they have fixed themselves as he's got older, we used to give this to him every morning for breakfast and it really helped. We noticed a huge difference if we did not give it to him.

And I thought I would show my little handsome man off, here he is waiting to go on his first ever plane ride in August, he was stupid hyper lol it was 5am!! :happydance:
 



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## essie0828

Hi :hi: lady luck! 

Jack is adorable! Ha! Cheeky guy. I cracked up at him only being concerned about what present he gets for being in hospital :haha: Their strength amazes me :cry:

No AFO's yet. But they should be here soon. She's doing really good with physical therapy, she likes it and I do to. :) I'm getting better at incorporating it into her everyday routine. :happydance: along with the Speech and OT :wacko:


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## lilesMom

Hey 
I had a message typed earlier but my comp froze and wouldn't postfix.

Sorry for surgery lady luck. Hope it does him lot of good and he recovers fast.
He does look soo excited . I was like that too for my first flight but I was 17.
He has a lovely smile xx

Essie it helps Simon nd me too to turn his therapy into games.
Lots of tickling and singing here for um.
He doesn't mind um at all then.
I'm sure u hve it well sorted by now anyway ;-)

Hi to all xx


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## essie0828

When we stretch DDs' legs and do the bicycle motions I sing the song "Bicycle" by Queen :haha: I'm no Eddie Mercury but DD loves it!


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## essie0828

We do have a cereal similar to Weetabix here. I think.....well it's the closest we can find anyway. Frosted Shredded Mini Wheats. They're like bite size Weetabix with frosting. Getting her to eat them regularly will be the trick. Toddlers :nope: If they don't want it, they won't eat it.


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## essie0828

Btw on the topic of juice and trying to get bowel habits healthy. DD hates fruit juices. Well I didn't think to try tomato juice. Gave her a cup yesterday and she drank it straight down :haha: I never would have thought she would like that :haha: and she had a good poo afterwards.


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## lilesMom

Hey.

It's funny what they take to.
I wouldn't hve thought of tomato juice either
But hurray for finding something she likes that works 
She looks adorable in ur profile pic. 

Had my nieces and new god daughter christening yest. Was lovely
Simon was so good for it. He is the best. 
Barium swallow test in morn. Fx ;-) 

Hi and hugs to all. Xx


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## lilesMom

Hey 
Hope everyone is well xx
Just changing little guys nappy and he started kicking halfway up in tge ar 
So happy . His low muscle tone means he always kicks low.
Physio is working. Hurray ;-)
Love to all xx


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## Foogirl

:hi: 

Our Daughter is 4 years old and was diagnosed with spa-stic (crazy that's a banned word!!) Dipegic Cerebral Palsy when she was two.

I think I've just about got my head around it now......


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## lilesMom

Hi foo girl welcome xxx

App went well today ;-)
She said as far as she coyld see today. 
Looked like just reflux.
No gross abnormalities ;-)
Hurray. Reflux we can and do handle ;-) 
Hve to wait for full report but all good so far. 
Eeg tomoro and echo wed. 
Fx for all goid results ;-) 

Hi and hugs to all xxx


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## essie0828

Foogirl said:


> :hi:
> 
> Our Daughter is 4 years old and was diagnosed with spa-stic (crazy that's a banned word!!) Dipegic Cerebral Palsy when she was two.
> 
> I think I've just about got my head around it now......

Hello and welcome :hugs:


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## essie0828

lilesMom said:


> Hi foo girl welcome xxx
> 
> App went well today ;-)
> She said as far as she coyld see today.
> Looked like just reflux.
> No gross abnormalities ;-)
> Hurray. Reflux we can and do handle ;-)
> Hve to wait for full report but all good so far.
> Eeg tomoro and echo wed.
> Fx for all goid results ;-)
> 
> Hi and hugs to all xxx

Hope his eeg went well today. And hooray for the good swallow test :happydance: As he gets a little older and stronger the reflux will fade. As he gets accustomed to solids he may have flare ups of it from time to time though. Hope his echo goes well to.


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## essie0828

lilesMom said:


> Hey
> Hope everyone is well xx
> Just changing little guys nappy and he started kicking halfway up in tge ar
> So happy . His low muscle tone means he always kicks low.
> Physio is working. Hurray ;-)
> Love to all xx

:happydance: Kick away little squishy man! Yay!


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## essie0828

Foogirl little Abby is beautiful. What a darling! My little Hayley has the same diagnosis. :hugs: I have no where near wrapped my head around it. Still don't know what to expect with her development really. If you don't mind me asking, how has Abbys' development gone? Surgeries? Adaptive equipment? And while your at it tell us a little about your family and daily life. :haha: Gosh I sound like I'm asking for an essay.


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## essie0828

Since I'm asking, I'll share to ;)

I'm 31, a SAHM married to the post man;) We have been together 12 yrs and have one rainbow baby girl with CP. Prior to her birth we had 3 losses (one 2nd trimester loss) so my pregnancy withDD was high risk. I have thyroid problems that required high doses of synthroid as well. DD had a traumatic birth and was born with an apgar score of 2, blue and not breathing. Scary day :( but she rallied and came home with us in 2 days. No one ever suspected CP. She was always a little behind on some milestones but none of her doctors indicated that was abnormal. She went undiagnosed until she was 18 months old. I knew she had CP when she was about 12-13 months old but was in denial until she was almost 15 months old. I had to chase a diagnosis for 6 months. I've learned a lot but have tons more to learn. I love people taking time to share about their kiddos, navigating health care, and in general dealing with life with CP. 

Thanks to everyone for your experiences and for sharing. Forums just like this one helped me to find out what was going on with my baby girl. Hopefully this one will help others. :hugs:


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## lilesMom

Hey xx 
Too tired for proper post.
No result for todays test fir a month. 
So slow!! Oh well .

Hi to all x


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## essie0828

lilesMom said:


> Hey xx
> Too tired for proper post.
> No result for todays test fir a month.
> So slow!! Oh well .
> 
> Hi to all x

A month! Well that's miserable! Get some rest hun :hugs:


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## Foogirl

It probably will turn into an essay but I'll try not to ramble!

Abby was born April 2009. She was 11 weeks early due to me having three massive bleeds in three weeks. They went in to get her out for both our sakes. She spent 6 weeks in neonatal growing from a teeny (but big for her gestation) 3lbs 7oz to just over 6lbs. On her third brain scan (they scan preemies regularly for the first few weeks to check for brain bleeds) they noted she had some cysts. No biggie, a LOT of people have brain cysts but because most babies aren't scanned they are not known about unless a problem occurs. We were told to take her home and enjoy her as what will be will be. It would be unlikely we would know if there was a problem until she was a year old. 

As she reached a year we had a few concerns about her not sitting up properly. Her gross motor skills were a wee bit behind and after her 12 month follow up with the NNICU consultant we were referred to physiotherapy. For a year we just kept doing the same thing but obviously as she got bigger and wasn't crawling, still struggled with sitting, was walking with support but showing no signs of taking her own steps, we were coming to the realisation we had a problem. I say "we" Mr Foo was in full on denial (but I blame MIL for that!!!) At her 24 month follow up we discussed the next stage with the consultant and decided to go for an MRI. I was quite against it as it would only slap a label on her, not change her therapy et. To me is was all about being able to explain her problems to other people. Mr Foo was really keen to do it so in the end we agreed to and of course it showed there was a problem. After a couple of really bad appointments with a really bad consultant (and a lot of things happening in that time) we stamped our feet to see one of the Country's top Neurologists and things have improved immensely from there. She began to crawl when she was about 2 and a half.

Abby's CP affects mainly her ankles / lower leg where she is hyper-tonic. She is hypotonic at her waist which affects her balance so as yet still cannot walk without support. She now uses a Kaye Walker. Its taken us a long time (and a lot of tears) to get her to use it but finally now she is happy with it. She wears AFOs for support and gets 6 monthly botox injections. So far there have been no surgeries and we are hopeful for the future as we've started with the Botox and splints early enough to avoid any shortening of her muscles. Other equipment - she has had (and still has) a plethora of seating solutions. She's had supportive chairs and theraputic benches and has a Trip Trapp chair for sitting at the table. We have a wheelchair now for her for longer journeys or when she is tired, she's had it since she was three.

We've looked into SDR surgery but have decided its not for her. Or for us. I have a lot of misgivings about it but given I know many people are all for it I will keep them to myself as it is a very personal choice to make.

We are hopeful for her future. She will probably always need some support for walking but hopefully it will be with sticks. She will probably need to move on to Baclofen which I'm not looking forward to but if needs must......

She starts school in August and we've had a lot of support from the local authority's children with disability team and have found the perfect school for her. I'm far more relaxed about her going to school than I have been previously.

In every other way Abby is doing great. "All there and then some" is what we hear most often. She spoke incredibly early, speaking full sentences by two years old. Her education advisor reckons she has the speech and cognition of a child of 6. In that way we have very few fears for her future. Our daily life is fairly average, we just have to add in a bunch more health appointments. She has fortnightly physio, 6 monthly consultant appointments followed by botox appointments, she sees an opthalmologist every couple of months as she has a squint and is long sighted. The only difference I think is, we have to be creative to find ways to help her do stuff. And be aware of her limitations but still push her to try and adapt or improve. The diagnosis hit us hard but once we realised there was nothing we could change we just set about finding out how we could help her be the best Abby she could be. Time will tell how well we've done!

I'll stop there! But I could go on. I've used a lot of terminology and stuff in the post but feel free to ask me what any of it is. This whole thing is a big learning curve!


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## Foogirl

Abby's first steps with her walker

https://www.youtube.com/watch?v=Pslm-7HGdZc

And about a year later

https://www.youtube.com/watch?v=yMCjAkh0YBk

And jumping in puddles :happydance:

https://www.youtube.com/watch?v=Eqw08Lr8szs


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## essie0828

Aww she is so precious, and I really appreciate the videos. She is very motivated by chocolate. :haha: What a beautiful little girl and so smart. You should be very proud. :hugs:

What is SDR surgery? 

My little girl is hyper-mobile in her ankles and knees with varying tone. Every step is on her toes. We've had sucess with verbal ques to remind her to put her heels down. Lol, I say "Hayley put your heels down.", at least a hundred times a day. She cruises and crawls very well and can stand unassisted for about a minute. No baclofin or anything needed yet. Lots of massage, warm water and stretching for now with Tylenol on rough days. Her communication and cognitive abilities worry me. She doesn't have very many words that she uses well, but she follows some simple instructions. She's learned how to open doors with a smile, literally. :haha: She is very expressive with her face and with gestures but has trouble with coordination of mouth muscles. She drools quite a bit if we don't promt her to swallow and has some trouble eating. We have not had the MRI yet. I'm waiting because of the sedation and because we already know what her diagnosis is. Mabey after she is 2. 

Isn't it strange how 2 little girls with the same diagnosis can be opposite in their development. Whereas my DD is coming along with gross motor, your little one is very smart and chatty.


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## lilesMom

Hey guys xx
We r in hospital and hve been since wed.
Little man's eeg was bad. Turns out he has a bad epilepsy called west syndrome.
Trying a different drug to control it. So fingers crossed.
They hvevonly had 4 or 5 patients in this hospital with it sincepilepsy nurse has worked here.
He likes beating the odds in a bad way.
First his stroke. Now this.
His swallow and heart r fine on the plus side. 
Hope everyone is well xx


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## essie0828

Lilesmom :hugs: I hope little squishy man is doing ok. Our prayers are with you.


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## ladyluck8181

I hope Simon is doing ok, sending you :hugs:


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## Foogirl

essie0828 said:


> Aww she is so precious, and I really appreciate the videos. She is very motivated by chocolate. :haha: What a beautiful little girl and so smart. You should be very proud. :hugs:
> 
> What is SDR surgery?
> 
> My little girl is hyper-mobile in her ankles and knees with varying tone. Every step is on her toes. We've had sucess with verbal ques to remind her to put her heels down. Lol, I say "Hayley put your heels down.", at least a hundred times a day. She cruises and crawls very well and can stand unassisted for about a minute. No baclofin or anything needed yet. Lots of massage, warm water and stretching for now with Tylenol on rough days. Her communication and cognitive abilities worry me. She doesn't have very many words that she uses well, but she follows some simple instructions. She's learned how to open doors with a smile, literally. :haha: She is very expressive with her face and with gestures but has trouble with coordination of mouth muscles. She drools quite a bit if we don't promt her to swallow and has some trouble eating. We have not had the MRI yet. I'm waiting because of the sedation and because we already know what her diagnosis is. Mabey after she is 2.
> 
> Isn't it strange how 2 little girls with the same diagnosis can be opposite in their development. Whereas my DD is coming along with gross motor, your little one is very smart and chatty.

SDR is "Selective Dorsal Rhizotomy" surgery. It involves cutting nerves in the spine which feed the tight muscles.

Same thing that botox does, but botox wears off after 6 months, SDR is permanent.

I guess that's the nature of CP - it can be so many different things to so many people!


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## lilesMom

Thanks guys. He is doing good now again. 
36 hrs + seizure free so fingers crossed stays that way.
Still in hosp. Il be on properly when we get out x
Hope everyone is well x


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## essie0828

Lilesmom :hugs: Good to hear he has been seizure free for a little while. Poor little man. Thinking about you guys and sending up lots of prayers.


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## essie0828

Thanks Foogirl. 

SDR doesn't sound like something I would consider for DD unless there was no other option and the pain was to great to cope with. It sounds like a very tricky procedure.


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## lilesMom

Thanks essie. 
50 hrs now ;-) hoping they hve it under controls


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## essie0828

Go Simon! Glad to hear he is doing better. Poor mum :hugs: hospital life is harsh. Hang in there hun. :hugs:


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## ladyluck8181

Fab news!!

SDR is not something we would go for, we did consider it and dh looked into it extensively and with his knowledge he decided the risks far outweighed the pros for us. We are not willing to play russian roulette on a chance it could work when it could make things 100 times worse.


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## essie0828

Just spotted the ticker ladyluck. Congrats! :)


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## ladyluck8181

Thanks hun, I'm so freaking scared, I had an ectopic in July and a 5wk mc on the 29th Sept. Trying to stay positive but it's just not happening lol.


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## lilesMom

ladyluck congrats xxx
fingers crossed for u hon xxx

hi to all x
we r home from hosp,sleeping in a bed is fab :)


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## essie0828

Ladyluck it's really hard not to be scared when you have suffered a loss. :hugs: Been there myself and every pregnancy was terrifying. Hang in there lil bean! 

Lilesmom glad you are finally home with him..That's a long stay in an uncomfortable place. Cuddle the lil squish an extra time for me. :hugs:

Happy Halloween! DD has a pageant today at the rehabilitation hospital. Gonna be lots of cute little spooks there. :)


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## essie0828

Has anyone used "chewy tubes" with their kiddos? DD's ST recommended them to help her strengthen her mouth muscles and help with her need to orally explore things still. She still puts everything in her mouth and it's getting impossible to stop sometimes. Poor little girl keeps getting colds every few weeks. Anyone had experience with these?


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## Foogirl

ladyluck8181 said:


> Fab news!!
> 
> SDR is not something we would go for, we did consider it and dh looked into it extensively and with his knowledge he decided the risks far outweighed the pros for us. We are not willing to play russian roulette on a chance it could work when it could make things 100 times worse.

Yep, that's pretty much where we were with it. Not only that, our consultant explained that in some cases getting your child on their feet before their body is ready for it can come at a long term price. She might walk easier at 4 but by 40 not be walking at all. Whereas keeping her off her feet more at the moment can help protect her future posture. According to the blurb from the main hospital which does the surgery, Abby probably wouldn't been accepted because of her hypotonia and again this is something her neurologist wasn't happy about. There isn't actually any medical reason for not doing the surgery where the hypotonia isn't affecting the legs. His argument was the reason seems to be more because there is a good chance that she won't walk unaided anyway which means the "results" of the surgery are less visible. He offered to send us to be assessed in the UK and was happy to recommend a referral to the place in Bristol which does it, if that was what we wanted. 

We decided against it but it did mean we had to change our mindset quite a bit. We had to take of the "must get her walking" head and get comfy with the "we'll let her go at her own pace" way of thinking. She has come on so well in the past 18 months we're kind of glad we didn't jump in to it. So many things we thought she would never do, all of a sudden she could. It's quite amazing.

That said, every single child and every single family is totally different and I can really understand why so many people push to get the surgery done. I think if we'd not had the consultant we have, a top neurologist who specialises in botox and who is more interested in family centred care than anyone we've ever seen, we may well have been looking to SDR to get us some results.

Has anyone else here been to a Bobath therapy centre?


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## nearlythere38

Hi all, 

Just catching up with this thread.....feel like a bit if a fraud as ava has not been diagnosed with cp (yet?) but she does have similar issues so i hope u dont mind me eavesdropping 

Ava had her MRI on 24th october, and we were told the results should be back by the end of this week. I feel like i am waiting for exam results all over again except ten times worse. There is very little change. She is still gaining weight at a scarily fast rate. Approx 1lb per week. And way off the top of the 99th centile on the growth charts. She doesnt reach for anything, hold anything, take particular interest in anything. She tends to just lay there, hands fisted, arms on the floor near her head and legs like frog legs. Still no laughing or vocalising really.

She is also now having some kind of seizures. They are like vacant spells, followed by a jerk and eyes move upwards. They are only small but very frequent. Shes having another eeg done and will be starting treatment


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## essie0828

Nearlythere you are welcome here no matter what your little one is diagnosed with :hugs: I don't understand her weight gain myself. I hope her MRI and eeg shed some light on whats going on. Does her appetite reflect her weight gain? Is she hungry a lot?

With DD it was a struggle to keep her fed. She ate tiny amounts several times a day and still does. I hope they find out what is going on with your little girl :hugs: I know you have to be worried sick.


----------



## lilesMom

Nearly there hugs hon . 
Hope u get answrs soon xxx
Waiting sucks xx
My little fella has just been changed from kepprA to sabril to control seizures. 
He was having a different type of seizures called infantile spasms.
KepprA never suited his tummy but he is quite happy now n sabril.
He was very sleepy for a week ish but it has settled. 
Eeg next week to ensure its working. 
Any qs il answer if I know ;-) xxx 

Hey to alp xxx


----------



## lilesMom

Oh and with weight gain.
My lo has low tone which caused silent reflux which caused comfort drinking ;-)


----------



## nearlythere38

Thanks girls. The weight gain was not reflective of her intake. She has 6 x 6oz bottles, but she has reflux so vomits a fair bit back up as well. She has some solids as well now, we aim for three meals a day - porridge, fruit and veg purees. Limited in what she can have as she is dairy intolerant. The hope was that she would reduce her milk intake once solids were started but it hasnt, she still wants a bottle after 4 hours. But now im wondering if she is needing the amount of milk to keep up with her weight, so a viciouscircle. 

Lilesmum i think they are querying infantile spasms with ava. What are they like for your lo?? Xx


----------



## essie0828

Nearlythere it seems that she eats a fairly typical amount. I hope they can shed some light on what's causing her seizures and weight gain and treat them effectively. :hugs:


----------



## lilesMom

Nearly there xx
Infantile spasms are when all 4 limbs stretch out in a fluid motion and kind of go up at the end.
He also bowed his head at same time. They usually occur in clusters with regular gaps. 
Keep a note of when theu occur and how long the cluster lasts. 
Also take a vid if u can. 
Simon eyes looked startled too but in between spasms he would chat AMD smile.
Lots of lo get distressed but simin didnt


----------



## lilesMom

Cont.....
I posted cos my phone keeps switching internet off and I lose typing 
They often occur on waking but don't hve to be limited to it.
Keep a diary of. Um.
Note if any warning signs and how she is before during and after.
It may save time ti diagnose xxx


----------



## lilesMom

Hey essie xxx 
How y doin ? Xxx

36 is quite a lot. 
We were told around 30 for simin who is close in age and 20 pounds.
But he goes over this moat days and sometimes by a lot. Doh.
We are hopung food helps him too xx


----------



## nearlythere38

Thanks hun. There sounds to be some similarities, they occur in clusters and often after waking. Her head dips down and her eyes look startled. She appear normal in between and they dont usually bother her, but sometimes do. 

But all her limbs dont stretch out. Its like her head and shoulders mainly and often accompanied by jerky arms. Legs dont usually seem involved, although it sometimes looks like a startle


----------



## nearlythere38

From reading up on seizures i think it sounds like shes having myoclonic seizures


----------



## lilesMom

our consultant seemed fairly certain its all limbs and head too but all people differ so dont take that as gospel xx
hope u get ur answers soon xx
no answers suck x
those seizures arent dangerous are they? 
i remember reading bits on um, but i read lots :)
xxxx


----------



## lilesMom

um could be beggining of infantile spasms?
the literature i got in hosp said they r more subtle at first ,
so maybe they change :)


----------



## nearlythere38

I am wondering if it could be the beginning of infantile spasms. Although i read that infantile spasms has a very characteristic EEG, so if it is normal again this time, who knows? I expect that whatever they are, they are a symptom of whatever condition she has.....we just need to know what is! Bloody hate waiting for results im the most impatient person ever


----------



## essie0828

Hi ladies :hi: 

Hope the kiddos are doing ok. Nearlythere anyone would be impatient waiting for those results :hugs: but I'm with you. I am so impatient with everything except DD anymore. DH bears the brunt of that mostly.

How's Simon doing on the new meds? Still seizure free? How about the reflux? 

DD's braces won't be here until Nov 27. I was hoping it would be sooner. I'd love for her to be walking in them for Christmas :cloud9:


----------



## lilesMom

nearlythere38 said:


> I am wondering if it could be the beginning of infantile spasms. Although i read that infantile spasms has a very characteristic EEG, so if it is normal again this time, who knows? I expect that whatever they are, they are a symptom of whatever condition she has.....we just need to know what is! Bloody hate waiting for results im the most impatient person ever

Def very distinctive eeg.
Its very chaotic eeg. 
Consultant said back ground eeg is very chaotic all the time
Not just during spasms. 
Xxx 
Does sound much more like myoclonic seizure xx
Isn't that a kind of less dangerous version of the spasms ? 
Xxx 
think I remember reading they r like benign version.


----------



## lilesMom

Essie isn't it weird how anything bar lo ceases yo matter ;-)
Dd looks gorgeous in pic xx 
Simon is good 10 days spasm free. 
Fx it continues ;-) 
<3 to all x


----------



## essie0828

Yay for no spasms! :happydance: 

Hope everyone is well :hugs:


----------



## essie0828

Nearlythere how's your little girl doing? Praying that she is doing better and spasm free :hugs:


----------



## nearlythere38

Hiya shes good thank you. Shes been started on sodium valproate for the seizures but starting on a low dose and to increase over the next 8 weeks. Ive seen a slight reduction in the frequency but they havent stopped. 

She has a sleep EEG on thursday. Her MRI results cane back grossly normal which is great so we can rule out cerebral palsy now. There was something suggestive of a metabolic disorder on the mri, and her urine metabolic screen was abnormal. Thryve retested it and i am currently awaiting the results of that. 

Were innundated with appointments lately. There is something every day almost, physio, ot etc. Hard to keep track of it all!!

I hope you and your lovely little ones are well  xx


----------



## lilesMom

Nearly there that's great xx
If reduced already. Great sign they should work at full dose xx
Thank god a step closer yo an answer. Xx
I'm starting to dread postman ;-) seems like new app most days here too.
But great to hve the help ;-)
Simin is great ay the mo. Hope it lasts xx
<3 to all. Xx


----------



## lilesMom

Nearly there just to let u know.
Simin has improved vastly since meds. 
Seizures were interfering more than I thought with his development.
Fx same happens for ava when under control x


----------



## nearlythere38

I actually like all the appointments because it feels like were being proactive and it keeps me doing something other than dwelling and worrying. Next week she has a hearing test as there are concerns over her hearing and the all important appointment with a geneticist.

Thats great that the meds are helpiny Simon. I hope that they do the same for Ava. Her development is very behind xx


----------



## lilesMom

I like them most of the time too but after our recent hospital stay.
I love days we get to stay home and play ;-)
Simon has come on in bursts with his therapies. 
Il think he stays same fir a bit and then all of a sudden something clicks and starts working fir him.
Its great to see.
Ava will come on loads too hon. 
She is soo cute in her pics ;-) xx 

I'm majorly broody today. 
Common.sense is trying to desert me.
I wanna TTC now!! 
Shut up hormones ;-)


----------



## lilesMom

Just wondering when or if ye hve lo in own room.
No plans of the sort yet but just wondering ;-)


----------



## nearlythere38

Aww when r u planning on ttc??? 

Ive just decorated avas room, its beautiful. But i cant bare to let her go i yet. So ive moved her from a crib to cotbed at the side of me. 

The paed phoned me today saying avas urine retest was ok. But that theyve all had a meeting about her this morni g, doctors, physio, OT etc. And they want her to be referred to a neurologist for further brain tests. Im really confused by why. I think they have a suspicion of something


----------



## lilesMom

Thats where Simon sleeps too or in our bed ;-)
I'm gonna wait till Simon is 1 I think. 
Gonna focus on Simon and losing weight till then. 


Maybe they just wanna be sure they don't miss something ?
But ur gut is usually right x 
There has to be a reason for her seizures and delay.
I'm sure they r just being thorough to find reason.
Bwtter to do all tests in case ava needs somemedical help.
But they r most likely just playing safe xxx
It's tough to be in the middle of it all though xx
Ye will come out the other end too hon. Xx

Essie how u do? 

Hey to all xxx


----------



## nearlythere38

Hey all, hope we are all well 

Ava had her hearing test at the hospital this morning and pretty much failed. Firstly they used the same technique as they do at birth, they got a clear response from her right ear but none from the left. Then they played a variety of pitched noises at either side of her head to entice her to look but she didnt. Then one lady sat in front of her with a toy for a few minutes while the other one shouted very loudly to try and elicit a startle, and she didnt flinch at all....the next step is for her to be put under general anaesthetic for some much more detailed tests to try and establish what, if anything, she can hear.

Its just one thing after another :'-(


----------



## lilesMom

Aw hugs honey. Xxx 
Does she respond to ur voice? 
Or ur play on either side? Hopefully it's one sided and she can hear ? 
Xxxhugs hon. 

Simon is going to hve his eyes checked tomoro.
His vision is fine but he seems to hve a bit of eye motor problem.
So we will see what she says tomoro. 
He also had to stop food again!!
Sucks .his reflux was worse and he was coughing
And choking. 
Plus my liver is acting up again too.
Double sucky!! 

But at this stage it can all f off ;-
Simon did a rolltonight and is in great form again. 

<3 to all xx


----------



## essie0828

nearlythere38 said:


> Hiya shes good thank you. Shes been started on sodium valproate for the seizures but starting on a low dose and to increase over the next 8 weeks. Ive seen a slight reduction in the frequency but they havent stopped.
> 
> She has a sleep EEG on thursday. Her MRI results cane back grossly normal which is great so we can rule out cerebral palsy now. There was something suggestive of a metabolic disorder on the mri, and her urine metabolic screen was abnormal. Thryve retested it and i am currently awaiting the results of that.
> 
> Were innundated with appointments lately. There is something every day almost, physio, ot etc. Hard to keep track of it all!!
> 
> I hope you and your lovely little ones are well  xx

Oh my, you poor dear, you are in the thick of it. :hugs: Glad to hear that her MRI was normal. Do you think they are suspecting a pituitary disorder? That usually causes rapid growth, but I don't know how that would tie into her developmental delays. I hope you get some answers soon. The appointments tapered off for us after we finallyhad a diagnosis. I'm sorry to hear that she failed her hearing test. Does she have fluid on her ears? Tubes? My kiddo had troubles with fluid retention and ear infections. She also had almost no hearing on the right side but after getting tubes put in there was a vast improvement. One of the best things to happen to us besides the loads of therapy, pt, ot, and speech. 

I am really dreading DDs MRI. I haven't even scheduled it but I am obsessing about it. :wacko: I had a horrible about the results and it's paralyzing me with fear. Ugh! How silly is that!? In our case the MRI won't change anything medically, but it might legally.

Really hope the meds stop her seizures :hugs: You're being an amazingly strong mama for your family. Wtg hun. ;)


----------



## essie0828

Hi lilesmom :hi: 

How's little squish doing? Reflux still acting up or has it passed? It would come and go with DD until eventually the episodes were fewer and farther spaced. Boo for liver troubles hun. Ouch. :hugs: I have gallbladder problems and as minor as they are, it's still painful. Ha! Good to hear squishy man rolled over. :happydance: That's awesome! :)


----------



## lilesMom

Hi hon. Xx
When is MRI. Did ye get a date. Xx
Simon is good but reflux is bad. 
He had to stop food agaun. 
He is still young though so we can wait.
Not much new here. 
Eye person is referring him on but says all we can do is monitor him.

Xx to all


----------



## lilesMom

Hey 
Simin haf his eeg today
It was much better.
Looks luje drugs are working 
Hurray. 
How is everyone
Xx


----------



## nearlythere38

Great about his eeg!! Bet you are relieved. Still not had results from avas recent eeg so guessing its normal.

Im a little stressed i wont lie! We has Ava's first genetics appointment yestrerday. The doctor told me that she has a syndrome in mind for Ava, but she wouldnt say what it was because she wasnt 100% and she needed to consult the literature and present ava to her colleagues in a meeting to see if they concur. Its a bit of a nightmare cos we have up to 6 weeks to wait now before finding out. She did say its rare

In terms of avas hearing im really unsure. Sometimez i think she hears me, but ivr been testing her a bit since thsn. I put the vacuum at the side of her head when she was looking thr other way and turned it on and she never moved or gave any sign of hearing it. I just dont know


----------



## essie0828

nearlythere38 said:


> Great about his eeg!! Bet you are relieved. Still not had results from avas recent eeg so guessing its normal.
> 
> Im a little stressed i wont lie! We has Ava's first genetics appointment yestrerday. The doctor told me that she has a syndrome in mind for Ava, but she wouldnt say what it was because she wasnt 100% and she needed to consult the literature and present ava to her colleagues in a meeting to see if they concur. Its a bit of a nightmare cos we have up to 6 weeks to wait now before finding out. She did say its rare
> 
> In terms of avas hearing im really unsure. Sometimez i think she hears me, but ivr been testing her a bit since thsn. I put the vacuum at the side of her head when she was looking thr other way and turned it on and she never moved or gave any sign of hearing it. I just dont know

I hope they get back with you before 6 weeks. Waiting that long would drive me nuts. :hugs: As for her hearing, where she is so young it's hard to tell exactly what she can hear. I hope she only has fluid on her ears and it can be treated easily. All you can do is take one day at a time hun. You have a right to be stressed. :hugs:


----------



## essie0828

lilesMom said:


> Hey
> Simin haf his eeg today
> It was much better.
> Looks luje drugs are working
> Hurray.
> How is everyone
> Xx

Yay! Glad he is taking to the new meds and the eeg was good. :happydance: The new meds may make his reflux worse, that's probably why you've had to stop food for a while. Hope he gets a break from it soon. :hugs: 

Hayley has been accepted into a CP clinic at a large regional children's hospital in a neighboring state. It's the #3 children's hospital in the nation :happydance: We go January 27th. Exactly one month before her 2nd birthday :thumbup: They will coordinate her care and will probably do the MRI shortly thereafter. We will see a neurologist, a CP pediatric specialist, an orthopedic specialist, a nutritionist, a physical therapist, an occupational therapist and a speech therapist. All at the same time! That's a little intimidating. Mama is going to have to study up and be prepared. :ha:


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## lilesMom

Nearly there. Yucky on 6 week wait but good hthey think they hve ananswet xxx
Try put it out of urind a bit. Impossible I know xxx

Essie that's fab news.
We had same for Simon at the centre he goes to.
I wad writing qs for about 2 weeks before it ;-)
Yeah I think it is tge new meds driving his reflux bananas. 
Food was getting stuck then.
Fx it calms down for him.

No enews here xx


----------



## lilesMom

Sorry for typos. On phone and it deletes things if I try to correct ;-)


----------



## essie0828

Hi ladies :hi: 

I hope everyone is doing well. We had a great holiday and Hayleys braces are here! :happydance: She is already making heel to toe steps in them :cloud9: Her standing is so much better and honestly she helped me put them on this morning. I was so shocked when she offered me her feet when she saw the SMOs. I think she feels stable in them and she likes it. Soooooo incredibly excited! All I want for Christmas is to see my baby girl take those first steps.


----------



## lilesMom

Aw thats fab hon.
Fx u get ur brilliant xmas pressie xxx


----------



## lilesMom

Long time no post. ;-) how is everyone. X
Had neurologist app today. 
Hyps arrhythmia on eeg is gone. 
Drugs are working hurray .


----------



## essie0828

lilesMom said:


> Long time no post. ;-) how is everyone. X
> Had neurologist app today.
> Hyps arrhythmia on eeg is gone.
> Drugs are working hurray .

Awesome news! How has the little guy been doing? Reflux getting any better? 

Hayley has a sinus infection and her bottom canine teeth are just poking through the gums. She's quite miserable and it's tantrums galore but the meds are helping and I think she will feel 100% soon. I'm wore out and my period is late :dohh: was thinking we were careful enough not to catch. Took a cheap pregnancy test Tuesday and had a BFN..............stuck in limbo. :shrug:


----------



## lilesMom

My phone sucks. Third tine typing this.
Hope she ua better soon x 
I skipped 2 af before nd doc found no reason.
I wasn't preg. 4 bfn ;-)
Just skipped um.
Hope u get result u want xxx


----------



## essie0828

AF showed up fashionably (5 days) late. Whew! Not ready, oh so not ready for that. Really want a big fat baby boy or girl to squish up, but not for a while. :haha: Hayley has been in her braces for about 2 weeks now and she is making her first heal to toe steps in the gait trainer :cloud9: She's no where near unassisted walking yet but she is making progress in a walker, cruising, and walking with hands held :happydance: Finding motivation that she will work hard for is eluding me. She changes what she likes so much. My back and knees are killing me from all this walking practice. I can tell DD is a little stiff and sore as well, although she doesn't complain a quarter of what I do. Lol. Love my strong baby girl, so proud of her. Her receptive language is getting better and she is starting to follow simple commands consistently :happydance: ROM in her upper body is better so she is exploring more and becoming a packrat. She steals the dogs toy and takes it straight to her play cot and pushes it inside. :haha: Poor dog whines and frets herself over that toy being out of reach :rofl: Loving her new developing personality although I'm scrambling to deal with her willfulness. I don't hit and she isn't afraid of ANYTHING, so I mostly just have to grab her and drag her away screaming. :dohh: My inexperience shines. 

Hoping everyone's little ones are well and excited for the holidays. Good luck parents :hugs: we will survive it in the end :haha:


----------



## essie0828

lilesMom said:


> My phone sucks. Third tine typing this.
> Hope she ua better soon x
> I skipped 2 af before nd doc found no reason.
> I wasn't preg. 4 bfn ;-)
> Just skipped um.
> Hope u get result u want xxx

:haha: My phone does the same sometimes. I nearly throw it when that happens.


----------



## lilesMom

I was close to flinging it ;-)
Glad she is doing so well and glad for af.
Had family xmas dinner in hotel tonight.
Was lovely.
Simon was dressed as Santa.
So cute ;-)


----------



## essie0828

Awww. That's adorable! Going Christmas dress shopping tomorrow for DD :) Probably going to get something sparkly ;)


----------



## essie0828

We have our extended family dinner the 24th then its home for Christmas morning gifts and French toast casserole. Mmm. Hayley loves ripping paper. Opening gifts is so fun with her if I can keep her from sneaking bites of the wrapping. Last year she pooped blue wrapping paper the day after :haha:


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## lilesMom

Ha ha blue poo. ;-)
Simon got a xmas pressie off his auntie. 
He played with the paper longest ;-)
Hurray for sparkly dress x

I saw in sjop the orher day. 
Santa sticker reward chart.
Is she too young for it? 
Promise of goin to park or cinema.
She may be too young though xx
So great she is making great progress


----------



## essie0828

lilesMom said:


> Ha ha blue poo. ;-)
> Simon got a xmas pressie off his auntie.
> He played with the paper longest ;-)
> Hurray for sparkly dress x
> 
> I saw in sjop the orher day.
> Santa sticker reward chart.
> Is she too young for it?
> Promise of goin to park or cinema.
> She may be too young though xx
> So great she is making great progress

Yeah she doesn't understand that kind of stuff yet. She would probably just want the stickers and not understand she was working to get a bigger reward. Sounds like a heck of an idea for later on though :thumbup: Thanks! My goodness DD was in a grumpy mood ALL day. I don't get it. I hope she's feeling ok but she was just so quick to breakdown today. No fever and aside from a slightly decreased appetite she played normally. She is cutting canine teeth still so that may be it. Please let tomorrow be different :haha:


----------



## lilesMom

I was gonba say maybe teeth xx 
Simin has a cold and was super sleepy today. 
Took him to doc she said not in his chest but keep an eye.
Prob teeth and cold.
Although his pepilepsy meds hve increased so she saud ring hosp if it doesn't stop.
Hey to all.
Essie hope dd us in better form now xx


----------



## essie0828

Awww poor little squish :hugs: Colds are tough on the little guys but good thing its not in his chest. If he runs a fever or is poorly do his seizures get worse?


----------



## lilesMom

He hasn't had any seizures since hospital ;-)
Thank god but yeah fever can cause um.
Which is why I dont wanna let anything set in.
He has no temp so hopung it's teeth and cold. 
How ye doin? Xxx


----------



## nearlythere38

Hi ladies, hope everyone is well. Still plodding along here, waiting for the genetics to get in touch. They said i would hear from them within 6 weeks, and its now been 4 weeks. Glad its christmas next week to distract me! Waiting for the postman every day lol.

Lilesmom is it sodium valproate they started Simon on? Theyve said Ava is having myoclonic seizures, and shes been on sodium valrpoate for 6 weeks now and no change. Her eeg is consistently normal as well which they said is good, but obviously there must be something causing the seizures. Shes been refered to neurologist, the paeds think mitochondrial disorder is a possibility, or its related to the genetic syndrome that they think she has 

Xx


----------



## essie0828

I hope the results come quickly for her genetics screening. Oh my goodness! I feel anxious just Thinking about having to wait for results while my dd was having unexplained seizures. I hope they understand and are reviewing them asap. :hugs: mitochondrial disorder? Did they mention what disorder exactly? Is it like her body isn't metabolizing something correctly and that causes the seizures? 

Ladies, those of you that have to deal with your little darlings having seizures, here's an extra :hugs: for you all. That has to be one of the most terrifying things. You are some strong people! Wtg!


----------



## lilesMom

Yucky horrible waiting xxx
Hope they hurry up x
Simin is on vigabatrin.
His epilepsy is different kind.
He will be switched to epilim in 4 or 5 months though hopefully.
Then try come off that at 2. Fingers crossed.
Strange it's not helped.
Hve tgey said if they will up it or change it.
Maybe u haven't been back?


----------



## lilesMom

Sorry postibf cos on phone and it gete rid of typing lots.
Has she ever haf seizure during eeg ? 
Is she having same number and length of seizures.
Same severity? 
U would imagine it should ve made some difference.
Her eeg was ok first day wasn't it.
Sorry loads of qs. 
Dont bother answering um if ur not in form or don't want to xx
I won't be offended xx


----------



## lilesMom

Essie hey and thanks xxx


----------



## nearlythere38

Apparently there are many mitochondrial disorders. Yeah its all metabolism related and something to do with cells. The outlook is not good so i am hoping its not that.

The seizures havent changed at all. Ivw read that myoclonic seizures can be unaffected by medications


----------



## lilesMom

The docs always paint worst ic.
They call ir preparing u.
I call it scaring the life outta u. Xx
Simon is loads better than I was lead to believe first day.
Fx ye rthe same xxx hugs hon xx


----------



## essie0828

nearlythere38 said:


> Apparently there are many mitochondrial disorders. Yeah its all metabolism related and something to do with cells. The outlook is not good so i am hoping its not that.
> 
> The seizures havent changed at all. Ivw read that myoclonic seizures can be unaffected by medications

:hugs: hoping you get good news hun:hugs:


----------



## essie0828

Hayley took two wobbly steps on her own today in therapy. :cloud9: She was wearing her braces but held her own balance for 2 steps then she toppled over. I think we may have scared her cheering so loud!


----------



## lilesMom

Aw thats fab hon xxx 
Hurray xx


----------



## essie0828

Thanks hun I'm over the moon! She took 2 steps on the day she turned 22 months old. Odd amount of 2s there :haha: We were able to get her to do it again for my mom and OH. :cloud9: My mom cried and tried to hide it :haha: I can't wait to see what DD can do by the new yr!


----------



## lilesMom

That's really great.
Now she has started u will be running after her soon enough. hee hee
She looks gorgeously n ur pic 
Simon can roll now and can go backwards a little on the floor.
Its great to see progress ;) xxx


----------



## nearlythere38

Hi ladies

Not having a good time at the moment. On december 23rd Ava had a different kind of seizure, we went to hospital. On boxing day she was transferred to the big hospital. The seizures started at every hour 2 hours from monday and are now every hour. She stiffens, her eyes flicker, she loses colour and she clicks her tongue. They are very frightening. Her oxygen drops very quickly, has been as low as 14%. So is needing oxygen with each seizure. Shes had a CT scan, various blood tests which have come back normal. Her eeg was abnormal this time and shows where the seizures are starting from. They havent been able to control them with meds as yet, and so far she has required 5 'rescue' medications which then sedate her for a day. Shes asleep most of the time and not feeding. They are speaking to the genetics department tomorrow and wil be arranging another MRI. Still awaiting lumbar puncture results xx


----------



## lilesMom

Oh no. Xx h s xx
It took them days to control Simons initial seizures too
He was sedated and drip fed for days.
Its so tough xxx
I'll be praying for answers for u xxx


----------



## essie0828

Oh no hun. :hugs: praying for Ava. I hope the seizures stop very soon.


----------



## lilesMom

Hi guys.
How are ye? 
Nearly there how's ava hon xxx
Hugs xxx 

Essie how goes the walking? X

Simon is doung well.
He is motoring with food.
Meds are still working thank god.
I'm even getting some time to ecexercise again.
;-) so I'm feeling bwtter too.

Hope ye r well xxx


----------



## essie0828

Go Simon! It's so fun to feed them new stuff at that age, especially if the reflux monster stays away. :) Yay for rolling and scooting :happydance: DD didn't roll properly until almost 9 months. I'm glad to hear the seizures are being controlled with his meds. It's nice getting a little time to exercise huh? Or any time personal time for that matter. Now that DD is quite mobile I find myself wishing I could poop in peace. :haha: Never fails, she follows me in the bathroom, waits till im "busy" and then trashes the bathroom. Silly girl. 

I've been wondering about Ava. Hope things are ok :


----------



## lilesMom

i had big thing typed and comp dissapeeared it again, arrgghhh

hope ava is doing ok xxx

essie glad things r goin well. 
simon comes everywhere with me too cos of reflux, 
u know how it is :)
he was doing great but now bit blocked up from food so its back again.
idd u ever use laxatives for dd?
i have prescription but am reluctant in case he comes to rely on um.
i have gravity strider at home and use it when simon is asleep.
i def fell much better since using it regularly again :)
he can sleep in buggy by day now again and it gives me a huge break to get things done :)
hope alls well xxxx


----------



## nearlythere38

Hi ladies,

Still in hospital here, 3 weeks now. Ava is still having seizures, not responding to meds so far. Her MRI was abnormal, showed diffuse changes and slight shrinkage of the brain.

They are querying PEHO syndrome and storage disease. Waiting for various test results.

Unfortunately they have said that given Ava's clinical picture and deterioration, they feel that she has a life limiting condition, and is unlikely to reach adulthood.


----------



## lilesMom

Oh nearly there. 
I am so so sorry. Xxx
hve no proper words to convey it.
If u ever need to chat or vent or whatever I'm here.
On here or pm me if u like. 
Hugs honey. I am so very sorry. 
I hope ye get some relief and some bwtter news soon. Xx


----------



## sophxx

nearlythere38 said:


> Hi ladies,
> 
> Still in hospital here, 3 weeks now. Ava is still having seizures, not responding to meds so far. Her MRI was abnormal, showed diffuse changes and slight shrinkage of the brain.
> 
> They are querying PEHO syndrome and storage disease. Waiting for various test results.
> 
> Unfortunately they have said that given Ava's clinical picture and deterioration, they feel that she has a life limiting condition, and is unlikely to reach adulthood.

So sorry to read that. My auntie was told this when my cousin was born brain damaged. She has quite serve learning difficulties but has just celebrated her 50 the birthday. X


----------



## essie0828

Nearlythere :hugs: there really are no words. I am so sorry hun. Cherish every second with her and come here anytime to chat or talk if you would like. You are always welcome here.


----------



## essie0828

Lilesmom I did have to use laxatives with DD and still do sometimes. We use an osmotic laxative. The docs recommended juice for her but she never would drink it and still won't. Most likely, if he will drink it, juice will unblock him. The sugar acts as an osmotic laxative, a natural one. Our doc said we could give her 2oz full strength juice per pound of body weight per day until she pooped. Plus all the extra water he will drink. Also you can try bicycling his legs, rubbing his tummy in a clockwise circle, warm bath, and checking his temperature rectally with lots of lube. All those have worked for us depending on the severity of constipation. There have been times I've had to try all those and then resort to polyethylene glycol as a short term last resort per doctors recommendations.


----------



## essie0828

Also avoid giving him bananas, rice, apples, and bread for a while until he's regular then reintroduce them one at a time to see how he handles them. Our doc said to go for "P" foods. Peas, peaches, papaya, pears. DD loved pureed carrots and butternut squash but too much of those constipated her to. There was tons of trial and error with her until I found a diet she did well on and no sooner than we nailed it her tastes would change :haha: Feeding is a struggle for us sometimes.


----------



## essie0828

We have had some new developments with Hayley and not the good kind. She's pronating her wrists now and showing tone related tightness in her hands and arms. She was motoring on with sign language but has stalled out with it as she is frustrated with her hands. We go to the CP clinic at the #3 hospital in the nation on the 27th of this month and I fully expect her diagnosis to change to ******* quadriplegia. I was really hoping her hands would be unaffected as that's how she communicates :( But over all she's making progress and I'm very thankful. She's up on her feet more and more and loves walking even though she still needs help with balance. She's bringing me things I ask for, usually her tablet so I can turn on her game :haha:. She was measured for wrist splints and we should have them soon. Her OT is great and is helping tons. We also have her in a Kaye Walker now and she insists on pushing it backwards but she is up and walking with it. I'll take it! :happydance:


----------



## lilesMom

essie0828 said:


> Lilesmom I did have to use laxatives with DD and still do sometimes. We use an osmotic laxative. The docs recommended juice for her but she never would drink it and still won't. Most likely, if he will drink it, juice will unblock him. The sugar acts as an osmotic laxative, a natural one. Our doc said we could give her 2oz full strength juice per pound of body weight per day until she pooped. Plus all the extra water he will drink. Also you can try bicycling his legs, rubbing his tummy in a clockwise circle, warm bath, and checking his temperature rectally with lots of lube. All those have worked for us depending on the severity of constipation. There have been times I've had to try all those and then resort to polyethylene glycol as a short term last resort per doctors recommendations.

Thanks for great info xxx
I was reluctant to give juice incase it maje reflux worse.
But if ir avoids lax then prob good idea xx 
Thanjs honey.
Still trying to find his best diet
Cos he is only eating 6 weeks ;-) 
Thanks hon.
Hope Alls well xxx 
How's dd xxx


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## lilesMom

Nearly there. I've been thinking bout u and ava all night.
Hope ye r as well as ye can be in present situation. 
Hope meds start yo work soon and ye get to go home.
Hugs xxx


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## lilesMom

Sorry I was posting as I was reading.
I'm so naive . I dient realise that diagnosis change coups happen. 
Sorry it's affecting her hands more xx 
Simon has asplint for right hand for nt time.
It's helped loads. 
His hand is much looser. No swelling any more 
And he is more inclined to use it.
I love our OT too ;-) xxx 
Woohoo. Walking is walking. 
Directioncomes later xxx


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## lilesMom

I was wondering why brown sugar and water worked so well tomove bowels.
Just gave him pear juice AMD water. 
Worked already xx


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## essie0828

lilesMom said:


> I was wondering why brown sugar and water worked so well tomove bowels.
> Just gave him pear juice AMD water.
> Worked already xx

Yay! Im glad he likes the juice. Pear juice was the only kind DD would ever drink but she only took sips. I have had to put brown sugar in her milk before to help her go. 

When DD was diagnosed her neurologist didn't get to examine her arms well as DD was throwing a fit and wouldn't let the neurologist touch em. The neurologist said that she was calling her diplegic for now but things may change. It's looking like they have. She's also showing signs of right sided hemiplegia. Her right arm, leg, back muscles are all tighter and she uses them less. She's super sensitive on the right side of her mouth as well. We have to do oral desensitization stuff with her because she guards her mouth so bad. Does Simon get freaked out if you touch inside his mouth, cheeks, gums and teeth??


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## essie0828

Nearlythere, sending prayers for little Ava and your family :hugs: Give her kisses from me and tell her they flew from half way across the world on the wings of an angel. :hugs:


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## essie0828

nearlythere38 said:


> Hi ladies,
> 
> Still in hospital here, 3 weeks now. Ava is still having seizures, not responding to meds so far. Her MRI was abnormal, showed diffuse changes and slight shrinkage of the brain.
> 
> They are querying PEHO syndrome and storage disease. Waiting for various test results.
> 
> Unfortunately they have said that given Ava's clinical picture and deterioration, they feel that she has a life limiting condition, and is unlikely to reach adulthood.

Nearlythere I've read up about PEHO. :hugs: You have a tough road ahead hun, but you know us mums....the harder we are pushed the harder we push back. We bend, we don't break. You will make it through this battle and Ava will adore you for it:hugs:


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## lilesMom

essie0828 said:


> lilesMom said:
> 
> 
> I was wondering why brown sugar and water worked so well tomove bowels.
> Just gave him pear juice AMD water.
> Worked already xx
> 
> Yay! Im glad he likes the juice. Pear juice was the only kind DD would ever drink but she only took sips. I have had to put brown sugar in her milk before to help her go.
> 
> When DD was diagnosed her neurologist didn't get to examine her arms well as DD was throwing a fit and wouldn't let the neurologist touch em. The neurologist said that she was calling her diplegic for now but things may change. It's looking like they have. She's also showing signs of right sided hemiplegia. Her right arm, leg, back muscles are all tighter and she uses them less. She's super sensitive on the right side of her mouth as well. We have to do oral desensitization stuff with her because she guards her mouth so bad. Does Simon get freaked out if you touch inside his mouth, cheeks, gums and teeth??Click to expand...

He used to. 
But we hve an oral program we do and he is pretty used to it now
Those therapies do help lots. He still doesn't love it
But will allow me ;-) 
Plenty of messing.
Tickling and rubbing right side helps lots. ;-) xxx
It's simple things make a big difference


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## lilesMom

Slightly weird but silly things like rubbing toys on his face and lips.
Playing with bottle and spoon on his gums.
Blowing raspberrys on his face and lips .
All relax him and help too.


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## essie0828

Does Simon have teeth yet? I wish we would have started DDs' oral protocol before she had teeth. I've had quite a few bad bites. She has broken the skin a few times, ouch! We bought a DnZ-vibe from www.ARKTherapeutic.com after her speech and occupational therapists recommended more stimulation for her mouth. Their site is awesome. DD loves the berry scented grabber, she really gnaws down on it. Good for her teeth and jaw muscles. They have lots of fun stuff, check them out. I think they ship internationally but im not sure. Btw I don't work for them or anything :haha: we just use their stuff.


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## nearlythere38

Thanks for all the kind messages. I have several good days followed by a really bad day where i am in tears most of the day. Its when i think about the future that i get upset. I can deal with the here and now and caring for her 24/7 and all the changes that our lives need to make. But when ii dwell on her future and the things that she wont do thats what hurts......then i think the other way, what if we only have her for a short time. Its all unknown and thats the worst thing.

They are not hurrying to diagnose peho because there is no test for it. Its a group of symptoms. She has the PE and O but so far not the H (hypsarrythmia on the eeg). But her most recent sleep eeg on thursday was grossly abnormal and could now be "evolving to hypsarrthymia".....so i dont know what they will do now.

Gonna be getting a peg tube fitted soon, had the ng tube in a couple of weeks now but peg is better long term.


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## lilesMom

essie0828 said:


> Does Simon have teeth yet? I wish we would have started DDs' oral protocol before she had teeth. I've had quite a few bad bites. She has broken the skin a few times, ouch! We bought a DnZ-vibe from www.ARKTherapeutic.com after her speech and occupational therapists recommended more stimulation for her mouth. Their site is awesome. DD loves the berry scented grabber, she really gnaws down on it. Good for her teeth and jaw muscles. They have lots of fun stuff, check them out. I think they ship internationally but im not sure. Btw I don't work for them or anything :haha: we just use their stuff.

nope no teeth, def makes it easier :)
cool il take a look thanks :)
yeah when i was given the oral program i didnt think he needed it to be honest but did it anyway.
he was very young , its only now i realise he did need it and am glad we were made aware of it :)
simon loves licking things :)
everything gets licked , its how he decides if he is gonna chew um or not i think :) he has few fav s that will always get chewed :)
my finger is one of um :)


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## lilesMom

nearlythere38 said:


> Thanks for all the kind messages. I have several good days followed by a really bad day where i am in tears most of the day. Its when i think about the future that i get upset. I can deal with the here and now and caring for her 24/7 and all the changes that our lives need to make. But when ii dwell on her future and the things that she wont do thats what hurts......then i think the other way, what if we only have her for a short time. Its all unknown and thats the worst thing.
> 
> They are not hurrying to diagnose peho because there is no test for it. Its a group of symptoms. She has the PE and O but so far not the H (hypsarrythmia on the eeg). But her most recent sleep eeg on thursday was grossly abnormal and could now be "evolving to hypsarrthymia".....so i dont know what they will do now.
> 
> Gonna be getting a peg tube fitted soon, had the ng tube in a couple of weeks now but peg is better long term.

hugs hon xxx
try to focus on the fact that she is here with u and she is gorgeous xx
its so hard i know but u have to hold onto hope htat u can help her and she can have the best qualty of life possible to her.
hte doc sin the hospital kept saying to me htat with therapies we make simon the best he can possibly be.
he may not be health problems free and he will always have issues, for want of a better phrase but i will always do my best to make um as small as i can and to help him. 
as im sure u will do for ava xx
i didnt start to think about the future till the last 2 weeks or so cos i just wasnt ready to deal with it xxx
take one step at a time as much as u can.
hugs hon. 
i know u are having an awfull time at the mo and i hope i havent said anything to upset u more xxx
simons last eeg hyspsarthymia was gone and had been realy bad the eeg before that, 
so one abnormal eeg isnt the norm for her and it can change for the better as well xxxx
we r always here for u, big hugs xxx


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## essie0828

:hugs: Nearlythere :hugs: You are doing amazing! You deserve your breakdowns, meltdowns, throwing tantrums if you like. Do your best to vent where you can and get support. Don't let yourself think ahead to much, the future is as always, unpredictable. We live now, we love now, we work now. Kiss that Ava for me :hugs: You can do this nearlythere and you will be SuperMom after these trials and battles. Ava makes you strong. That's always something to appreciate.


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## essie0828

I took DD to therapy today and found out that her speech therapist had went into preterm labor. :( She said last week her back was hurting but I never thought for a min she would be having labor pains. Poor girl isn't due until March 5th. (DDs due date strangely enough) I think they have stopped her labor and hopefully all is well. This is like de ja vu. It's so eerily similar to what happened to me with DD. 6 weeks before she was due I was admitted due to high keytones and protein in my urine. Bp was normal and dd showed strong on heart monitor. I was dehydrated and hungry from morning sickness, i threw up the entire pregnancy. I got to go home the same night though. I think she has been in the hospital a few days now :( She was 18 weeks pregnant when we met and I unknowingly scared her to death with Hayleys' story. Now the poor dear is walking our footsteps :nope: I hope her boy is ok.


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## essie0828

On a lighter note, DD was acting up a bit because we had a fill in therapist, who was also very pregnant. Due next week kinda pregnant! DD got angry, stiffened up, went straight back into me and headbutted me in the nose full force. It all but leveled me right there in front of this girl. Eyes watering, nose bleeding, wrestling an angry, fairly mobile, huge, toddler with CP. Try to make that crap look graceful. You can't! I was so embarrassed and the poor therapist guarded her belly the rest of the session.


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## lilesMom

oh oh. x ur poor nose x
hope hayley made friends with her therapist :) 
hope ur nose is better, that really hurts, u would be seeing stars :)

my car, oven and dryer have died, arrrgghh
not sure where money to fix um is gonna come from but anyway.
thats 3 so hopefully ned of bad luck for abit xx


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## essie0828

Oh no lilesmum. That is a stretch of bad luck. I hope you can get things fixed soon hun :hugs: We are on a shoe string budget since I haven't returned to work so I understand the worry with all that. :hugs: Oddly enough, our oven broke about a month back. Ugh, so frustrating! I hate when cars break but DH is a good mechanic so that saves us some money. Do you guys have public transit? 
We don't here and it sucks. I think there is a service for the disabled but no regular busses and very few cabs. Our neighboring city has a full transit system and busses run all the time. Sometimes I think that's easier than keeping up with cars :wacko:


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## lilesMom

I live in the country side so ni public transport.
Luckily oh got it running. Hopung it stays ok now 
Same here cos I didnt go backk to work less money too.
I'm used to it except when things break ;-)
A car is more expensive than buses 
But I love my home. Wouldn't trade t. 
How ye doin?

Nearly there thinking of u and ava xxx


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## nearlythere38

Thank you 

Not much happening here really. She had her gastrostomy fitted on thursday, so this weekends been not great for ava cos they had to starve her first, then build her feeds up slowly. Sheshad tobe sedated a few times.

We are hoping to get back to our local hospital in the morning. But they are sending some more genetics tests off tomoro first


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## lilesMom

aw poor dote xxx
local hosp will make things a little easier and step in right direction xxx
hope ye get good news from tests xxx
how r u now? r u exhausted hon? xx


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## essie0828

Poor ava, that has to be hard. Hard on mum to :hugs: I hope she adjusts to the g-tube quickly dear.


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## essie0828

Hi ladies. 

How are the kiddos? 

Been thinking about little Ava, hope she is closer to home and the seizures have stopped. Also hope the g tube is getting easier for her and mum. :hugs:


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## lilesMom

Hey. Xxx
Simons being doing a weird thing with his head and startling awake at night. Again.
Wad ontothe epilepsy nurse. 
She is gonna talk to consultant and get onto me tomoro.
We e both unsure id it's behaviour or seizure so.....
Hope alls well with ye xxx


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## nearlythere38

We moved back to our local hospital on monday evening. Her g tube is fine and im confident feeding her now. Seizures have increased again unfortunately so they are increasing meds again. She de-sats completely during seizures, turns grey and stops breathing its so scary.

On monday we have a discharge meeting, where all people involved attend and we plan ongoing care and what equipment we need etc. They are hoping to get a night nurse for at least some nights. She has also been referred to 2 childrens hospices and to a palliative care consultant....its all becoming very real and very daunting.

Im sorry i cant read through all the thread cos of this stupid phone but i hope all the kiddies are well xx


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## lilesMom

hugs nearlythere xxx 
glad ye r moving from hosp but so sorry its all scary xxx
how is she in between episodes? xxx


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## nearlythere38

Shes not herself hun. Been a different baby for the last month


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## lilesMom

sorry to hear hon. xx
was hoping ye had some good time in between, big hugs xxx


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## essie0828

nearlythere38 said:


> We moved back to our local hospital on monday evening. Her g tube is fine and im confident feeding her now. Seizures have increased again unfortunately so they are increasing meds again. She de-sats completely during seizures, turns grey and stops breathing its so scary.
> 
> On monday we have a discharge meeting, where all people involved attend and we plan ongoing care and what equipment we need etc. They are hoping to get a night nurse for at least some nights. She has also been referred to 2 childrens hospices and to a palliative care consultant....its all becoming very real and very daunting.
> 
> Im sorry i cant read through all the thread cos of this stupid phone but i hope all the kiddies are well xx

Oh hun :hugs: I can't even imagine how you feel. I am so sorry. :cry: We are all pulling for you and little Ava. Stay strong mama. You can do this.


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## essie0828

Hi ladies :hi: 

Was wondering about the kiddos. How's Simon? How's little Ava? 

Hayley is doing great and for that I'm thankful. She's becoming so strong willed......I'm worried she's gonna be a hell cat. Hitting, kicking and throwing toddler tantrums when she does not get her way :haha: Wow terrible twos here we come. She's soooo big to! 36inches and 30lbs. For u metric gals, 13.6 kg and 91.5cm! She's not yet 2.


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## nearlythere38

Sounds like hayley is keeping you on your toes! The terrible twos are fun :-/ my toddler is 2.5 and very strong willed!! Character really starts to show. Hes so different to ny oldest, oldest is shy, quite serious and quiet. My two year old will speak to anyone and is best described as a whirlwind lol.

Ava is not great. We left hospital on tuesday and came to a hospice for some respite. We are goinghome tomorrow, which is going to be strange after 7 weeks. 

Things have progressed in terms of a diagnosis, a test came back positive for a rare metabolic condition called CDG - Congenital Disorder of Glycosylation. It explains everything with her. Got to wait a few more weeks for further results on exactly which type it is, as they all have different prognosis and symptoms. At present her epilepsy is uncontrollable. 

The other night sh was fitting for 2 hours and her heart rate n oxygen were going low, so at 4.45am they say me down to discuss whether Ava should be rescusitated if her heart stops or if she should be intubated. So that wasnt great :-( weve made a plan with the palliative care consultant now for these things


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## essie0828

Oh hun. I'm so sorry. I hope coming home will make things a little better on your family. Will you have help with her nursing care at home?? Your 2.5 yr old sounds like a hoot, I bet he's so funny. Praying for your family hun. Stay strong busy momma :hugs:

Well things have gone a bit nuts here. I've had a faint positive/evap on a pregnancy test and my period is late. I don't trust the result so I'm waiting to take another test with FMU. We've had to put DDs therapy on hold for a few weeks until we clear up some things with her insurance. I'm upset about that. We are in a limbo until her disability benifits are approved (applied 2 months ago). Or until our application for private insurance goes through. I hate this health system. DD is obviously disabled and we are still waiting but my sorry ass inlaws got coverage within 2 weeks just because they won't work. So in the meantime we have to pay out of pocket for any medical treatments. Also got labs back for DD and her vitamin D levels are low. Hoping the supplements and some sun help.


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## essie0828

Well girls my suprise Valentines day present is a BFP. Got an obvious line on a 100miu test, so I guess that makes it official. I guess make up :sex: turned into baby making :sex: Well nothing left to do now but wait and see. I hate that part. 

:hugs: to you all and give those beautiful kiddos a big Valentines day kiss for me:hugs: Off to make kiddo a heart shaped strawberry pancake for breakfast :)


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## lilesMom

nearly there hugs honey xxx
what a horrible thing to plan regards resuss, hope ur holding up as well as u can hon xxx
glad ye r gettin home xx
hope her tests come back with best kind of it, if there is a better kind xxx

essie congrats honey xx
im jealous :) xx
best of luck for happy and healthy preg xxx
hope insurance comes through soon xxx
i know how upsettin it is to be put back therapy wise but sounds like she is doing just great xxx

over here simon is having seizures again.
been onto hosp for 3 weeks, 
finally got rescue meds yest and goin for eeg again next week.
prob startin epilam as well as vigabatrin soon.
hope it doesnt make him too sleepy.
we had to hold his therapy too cos of seizures.
i satrted crying into therapists faces when they told me i couldnt have stander and cast in case he injured himself in it.
was really looking forward to progressing.
but hopefully really soon we will have epilepsy under control and be able to get them.
he is in good form today anyway :)


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## essie0828

Poor Simon, I hope he responds well to new meds. Glad he's doing good today and hope it continues. Girls I swear Iwould go nuts being in a hospital that long, but I understand the need to be with your baby no matter what. You ladies are AWESOME mamas! An inspiration for sure!

Thankfully DD is doing well with her walking. She has to use the kaye walker still but she has developed a love for walking. First thing when we get downstairs in the mornings she goes to it and wiggles it so I can hear it. I'll ask her if she want s to walk and her eyes light up, then she will sit for me so I can put on her braces and shoes. Thats about 10 min. An eternity to a 2 year old but she hardly ever fusses. I'm thankful everyday she is doing so well. I've found out that we can continue some of her therapies, the home visitors, a PT once a week and a ST 2 times a month. Its no where near the 5 sessions a week we were doing but I am confident I can fill in any gaps until insurance picks up. I think with this new addition our status changes and we may get coverage sooner. 

Lilesmum how long till you try for #2?? We were wanting to wait but DD broke my phone and my period/ovulation data for 2yrs was lost and I didn't properly track. Not to mention DH was pulling out. It's so odd, we've been stressed out and at each others throats and only DTD 3 or 4 times this month and Suprise. I have had 4 mc's though, one at 16weeks, so I kinda just go into denial until a baby actually gets here. Hoping this sticks even though I'm terrified of having another baby after DDs shoddy birth. I still haven't picked a new doc :dohh:


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## lilesMom

Aw lil cutie mad to get walking ;-)
Hurray she is doing so well xx
Congrats again. Praying fir sticky bean for u xxx
No clue on me trying I change mind every day


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## essie0828

Lol. Its hard to make the decision to take on another baby. I put it off till we had an accident. :haha: A happy accident, DH came outta denial at work and sent me a msg with names he likes. Little soon but sweet of him. He sent mostly boy names to, :rofl: I have a feeling that we won't need those boy names. ;)

Is that a picture of your cat in your avatar? If so I have its green eyed twin. Kitty is 12 yrs old, solid black manx mix. No tail. And she loves sticking her head in bags and boxes.


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## lilesMom

Aw so exciting thinking of names ;-)
We most likely will at stage soonish TTC
But anytime Simon has a setback it gets pushed out ;-)
I would hve said I wanted boy abd girl before Simon 
But now either be great ;-)
If boy he has a bro and f girl we gwt one of each ;-)


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## lilesMom

Forgot. Yup it's ny cat.
He is looking out rhe window in an envelope ;-)


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## essie0828

Lol. Cats are crazy creatures. Mine is so gentle with Hayley and she sleeps under her kaye walker a lot since we got it. I guess she thinks its a box or something:haha: 

How's simon doing today? Meds helping or are they making the poor lil man tired? Had to take DD into the local clinic today, without insurance :dohh: She has a nasty upper respiratory infection with a fever. Luckily they took it easy on us financially and we were only out 100 $ for meds and office visit.:happydance: And insted of just getting 1 lollipop, they gave DD 4 of them. She was a happy girl. :haha: She did so well for the exam to, my baby is growing up :cry:


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## essie0828

lilesMom said:


> Aw so exciting thinking of names ;-)
> We most likely will at stage soonish TTC
> But anytime Simon has a setback it gets pushed out ;-)
> I would hve said I wanted boy abd girl before Simon
> But now either be great ;-)
> If boy he has a bro and f girl we gwt one of each ;-)

I don't really care about gender either, Hayley has shown me that kids are awsome no matter what. It will be much cheaper if we have girl though, I still have ALL of DD baby clothes:thumbup: And every thing else for that matter. I'm a packrat when it comes to baby stuff :haha: I'm a little scared of getting attached to this pregnancy but I can't help it. I keep peeing on sticks to make sure the line is getting darker. Probably lulling myself into a sense of false security. :dohh:


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## lilesMom

Aw hugs honey.
I really hope ur bean is sticky xxx
No reason why it isn't but I know the constant worry xxx
Il keep my fx for u sweetie xxx
Hope hayley is feeling better soon xxx
I did the constant peeing with siMon too.
It is reassuring xx
Just remember it can be fainter cos of diluted pee
Or ink in test too.
I'm case u gwt a not so dark one fx


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## lilesMom

Simon had none today ;-)
Here's hoping that's it ;-)
Only added laxative so far.
Wed we see neurologist but he may not need extra meds now ;-)


----------



## lilesMom

Also I stopped giving him yoghurt.
My.moms epilepsy is triggered by foos so maybe that's it
Not sure but it's good it's gone for now ;-)


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## essie0828

That's awesome! I'm glad he's doing better on less meds. My aunt has epilepsy and she swears some foods trigger her seizures. I hope whatever the cause, that he stays seizure free. Hoping you get good news from the neurologist :hugs: 

We still have to give DD laxative sometimes. She hasn't been eating well because of this infection so I am sure she will get backed up. Unless the antibiotics give her loose poops. We had a horrible night last night, fever of 103.6 and she was just miserable all night. I had to actually wet her head and shirt to cool her. I was afraid she was going to have a febrile seizure. Finally fever broke around 10am today. Whew! Lol I'm still taking pregnancy tests and they are getting darker fast. Even with diluted pee. :happydance: Starting to have nausea and booby pain to ;) Have to sort out an obgyn soon, probably tuesday but they normally won't see you till 6weeks for a dating scan and pap. Eeek this is getting exciting!


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## lilesMom

They r back today but mild. 
I did give him half a yoghurt yest.
He is off his food a bit from teeth.
And I dont know if it was yoghurt. 
Gonna stay off it till wed anyway.

Aw poor hayley .
Kisses to her xx

I'm excited fir ye ;-)
 
Hurray for tender boobs. Ha ha


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## lilesMom

How is everyone xxx


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## essie0828

Hi hun:hi:

How's lil Simon? We've been doing pretty well, DD managed 14 independant steps in PT last week. :cloud9: She prefers to walk on her knees but if I push her she can take a few steps on her own. She's starting to get a little attitude to, if I tell her 'no' she laughes at me:dohh: I think I've reinforced that behavior by laughing when she does it but she's so freaking cute. 

I've been pretty wiped out with morning sickness, a good sign really but I'm wishing for 2nd trimester to have a break. Saw a tiny lil heartbeat on ultrasound last Friday, go back in 2 weeks for a scan to check growth rate. I found a doctor that delivers at a hospital with a awesome nicu. I still have trust issues with doctors and I get a little panicky every visit. I guess that is sorta normal given our history.


----------



## lilesMom

aw thats great , 14 steps is loads :)
she is coming on so well xxx

sorry bout morning sickness, it is tough but like u say great sign xxx
hope it eases a little soon xxx

things r good and bad here 
stil havin few seizures every day, 
but on new meds now as well as old, waiting for um to hopefully work.
he can sit now though. 
more or less by himself, he loves it :) 
xxxx


----------



## essie0828

Awww Hooray for sitting! That's awesome:happydance: Sorry to hear about the seizures dear:hugs: I really hope the additional meds help. 

DD had her 6 month review through our therapy services and its a bit discouraging. Her speech skills are at a 12 month old level and her gross motor skills are scattered between 12 and 18 month old level. She's showing improvement and that's great but it's hard to see numbers in black and white.


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## lilesMom

Progress is all thatmatters hon.
They r never gonna be level with other kids that way
But hayley and Simon r much nicer than those other kids ;-)
It is hard to hear .
But it's not a race. They r going forward which is all that matters xxx


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## essie0828

Thanks hun. Sometimes I get caught up in the numbers:wacko: 

How's Simon doing? 

I've been wondering about little Ava to. I hope she is doing better:hugs:


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## lilesMom

It's hard not to feel bad when u hear things like that.
They are our babies and we want tge best for them xxx
When I see friends babies younger than Simon ahead of him in physical stuff it hurts.
But I just remind myself that he is himself.
I love him eexactly as he is and wouldn't change a bit of him ;-)
It is tough at tines though hugs xxx


----------



## lilesMom

Posted cos on phone.
Ava and nearly , hope ye r holding up ok xxx

Simon is ok.
Still having episodes but milder.
Meds are making him a but pukey and constipated.
Poor love. 
Id love if I could take um for him ;-)


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## essie0828

Poor lil guy:hugs: I hope his tummy settles soon.Good to hear the seizurs are getting milder. FX'd they stop all together. Its not fun to be pukey and constipated. I can relate to that at the moment. Dd is having constipation issues the last few days as well. She has all but gone off food because of it. Makes me nervous when she doesn't eat much.


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## lilesMom

its a viscious circle , constipation puts um off food and then constipation gets worse cos they aretn eating enough.
he is better today, hopefully its just an adjustment and it will settle down.
fruit to eat ( puree here :) ) and lots of water are the best cure for it.
plus simon will always eat fruit no matter how sick the poor poppet is.
i cook blueberries, raspberries , banana and a tiny bit cinnamon with a little water to soften and mash um up, he loves it and totally helps his tum. would she eat this?
i think u said before hayley doesnt like juice? or am i crazy :)
maybe put with ice cream to entice :)

simon got 2 ankle casts and a stander today. 
his casts are bright purple, they r super cute.
they look like ski boots :)
first day in ages no seizure 
had 2 last nt though, hope meds are working now. 

love to all xxx


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## avidwriter15

My son has hypotonic CP he is now 2 years 1 month old!


----------



## lilesMom

Hi avidwriter welcome.
How's ur son doin? 
And u of course ;-)


Hey to all xx


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## Foogirl

Not sure if there are any folks with older children in here but does anyone have any experience with hinged AFOs V static ones?


----------



## lilesMom

sorry foogirl, lo is nearly 10 months so not yet xx


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## essie0828

Hi ladies :hi:

Avidwriter, welcome hun. In January my daughter was diagnosed with hypotonia at the CP clinic at Cinci Childrens Hospital. Originally when DD was 18 months old her diagnosis was diplegic CP. 

Foogirl my DD has 2 stage hinged Afo's. They are a combination SMO that snaps into a hinged AFO. We have never used the static ones but I really like the hinged ones. They allow for a bit of flex but dont allow her to get up on her toes at all. They also fold neatly for transport if she's not wearing them.


----------



## essie0828

Hi lilesmum. How's lil Simon doing? 

DDs therapy schedule is going full blast again and things are super busy. She's walking a bit more and getting stronger. Excited about that. She's wearing me out most days :haha:


----------



## essie0828

Foogirl here's a website for the type of afo's DD wears. They are Indy stage 2's by surestep. 

https://www.surestep.net/indy2stage.php 

They show a static pair on the left, but they all come hinged. The picture of the cute lil red haired girl showes them better. Hope that link works. I have no experience with the static ones but in DD case the hinges allow her to stretch her achilles tendons and calves without letting her toe walk.


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## lilesMom

Glad therapy and walking is goin great essie.
How u feeling now. Still sick? 
Still trying to stop Simons seizures.
Drugs havent worked yet. 
He is on nearly double the initial dose they wanted now.
He is a bit bwtter but he often has good days followed by terrible one.
But fx ;-)


----------



## essie0828

Aww poor lil man. I was really hoping he would be getting a break from the seizures. Do the meds keep him tired out? How's his eating, and how's he liking the stander?? I remember when DD was just learning to stand she was very proud to be upright. 

Last night and today have been tough on DD. She's wobbly and falling a lot. Being very clingy and crying over every lil thing. Not her usual self at all so I worry she's getting sick. She has been getting sinus infections from foreign bodys and we have to do a swallow study in April. I'm pretty sure it's not reflux but I have noticed that she will "forget" she has food in her mouth and get choked. Luckily her cough is strong and she keeps her chest clear but she coughs food into her nose. Saw her shoot a green bean fragment straight out of her left nostril yesterday:dohh: Her OT thinks she doesn't feel the food sometimes and upon getting distracted will aspirate. More mouth work to increase her awareness of things being in there.


----------



## essie0828

Oh and yes mam I'm still getting my butt kicked by MS. Nausea everyday but not throwing up much thankfully. Most evenings it hits like a ton of bricks and I struggle through the night time routine. Getting supper cooked, cleaned up and DD in the bath usually wipes me out. I keep lemons and ice pops on hand and that helps. Nibbling lemon slices or eating cold stuff is my only relief.


----------



## Foogirl

Looook what Abby did!:cloud9: (click on the pic for video)

https://i690.photobucket.com/albums/vv268/original_foogirl/th_IMG_3413_zpse4ecf246.jpg


----------



## lilesMom

Aw congrats xxx go Abby


----------



## lilesMom

Essie hope ms has let up a lil xxx


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## lilesMom

Nearly there and ava.
If u still read this hugs and xx


----------



## essie0828

Awww, bless her she's standing!!!!! WTG Abby!!!!! :happydance: Foogirl I bet you are one proud mama. :)

How's lil Simon doing?? 

DD is doing pretty good, she's talking and using her signs more but still struggles with motor planning. She will move her mouth a few times before she can actually manage the sounds. Same with her walking. But she's still making progress and I am very thankful. We started kinesiotaping her trunk to provide her with some proprioreceptive feedback about her abdominal muscles. Her tummy is weak and her back is compensating so we are working on sit ups and anything to strengthen her belly. The tape is helping. The first night I could tell she was picking her legs up higher and she was playing with her feet a lot. She usually has trouble getting her feet up close to her face to play with them. I haven't been feeling well lately and I have a scan tomorrow. Pretty worried as I have had a decrease in pregnancy symptoms and I an expecting to find out I've had another MMC. I'll know for sure in 20hrs. Time is dragging!


----------



## Foogirl

Oh yes indeed! Couldn't be more proud.

Wait....click on it.....its a video.....


----------



## essie0828

I'm having trouble getting it to load but I'm on my stinking phone, grrrr. Just a min........


----------



## essie0828

OMG!!!!!! I got it finally!! That's WONDERFUL, and she's so happy about walking! Love it. Made my day! I showed DH and he got all whimpery. :haha: He cried rivers at DDs first steps! :rofl: But then again so did I.


----------



## Foogirl

She loves to do it!


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## essie0828

That's great! Just a little more practice and you will be chasing her. What a beautiful thing!


----------



## Foogirl

we can but hope!


----------



## essie0828

DD is very similar in her walking. Almost exactly the same gait but she prefers to walk on her knees. So keeping her up and motivated is tough. 

Btw, Abby is sooo freaking adorable! Love love love those curls and big smile.


----------



## Foogirl

essie0828 said:


> DD is very similar in her walking. Almost exactly the same gait but she prefers to walk on her knees. So keeping her up and motivated is tough.
> 
> Btw, Abby is sooo freaking adorable! Love love love those curls and big smile.

Oh thanks, she definitely has her moments. The curls and the smile come from her daddy. It's only the attitude she gets from me :haha:

We do knee walking too. It is great for the balance.


----------



## lilesMom

essie0828 said:


> Awww, bless her she's standing!!!!! WTG Abby!!!!! :happydance: Foogirl I bet you are one proud mama. :)
> 
> How's lil Simon doing??
> 
> DD is doing pretty good, she's talking and using her signs more but still struggles with motor planning. She will move her mouth a few times before she can actually manage the sounds. Same with her walking. But she's still making progress and I am very thankful. We started kinesiotaping her trunk to provide her with some proprioreceptive feedback about her abdominal muscles. Her tummy is weak and her back is compensating so we are working on sit ups and anything to strengthen her belly. The tape is helping. The first night I could tell she was picking her legs up higher and she was playing with her feet a lot. She usually has trouble getting her feet up close to her face to play with them. I haven't been feeling well lately and I have a scan tomorrow. Pretty worried as I have had a decrease in pregnancy symptoms and I an expecting to find out I've had another MMC. I'll know for sure in 20hrs. Time is dragging!

oh no hon, 
i hope alls ok, xx
please update us if u can xx
hugs hope its not xxx

glad she is doin well with tape and talking xx
simon has started saying words, he shapes his mouth for um before he will say it too,
thought it was normal for bubs to do that?
kinda shitty day here, another long seizure , he is sleeping off rescue meds beside me as i type .
meds dont seem to be working or agreeing with him
his tummy is in bits ffrom um and he cant eat, also teething mad
no therapy today cos he cant .
feels like lack of progress, 
all i can do is cuddle him and keep him comfy as possible.
it sucks, 
im so sick of epilepsy, 
let alone poor simon .
arggh rant over , kind of :)
is good to let some out but i wont be rant free till they get a drug that works properly on his epilepsy.
he is coming on really well when he gets a break from seizures, 
but he has had them every day for months now again.
oh well,
f all i cna do except wait and hope drugs start working.

relaly hope ur ok hon xxx


----------



## essie0828

Poor lil Simon! It has to be terribly hard to deal with the seizures and the meds for them. Its awesome he's starting to say words!! At his age that's great. DD would have lapses in development when she felt bad but would then do well when she felt better. I really hope they find a medication to control the seizures. Epilepsy is so scary. Rant away mama, life is hard sometimes and you deserve to get it off your chest. 

Foogirl that's funny! DD has my temper and bull headedness and her daddys looks as well. If she don't want to do something that's that. I gotta get some videos uploaded to share of her. Its wierd how much she walks like Abby!

In docs office waiting.....and waiting.... he's running late today and this is tough on the nerves. Grrr. Will have news soon enough I suppose. Ill update when I get out.


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## essie0828

Good news in the OB office today. Saw a wiggly lil babe in there with a strong heartbeat. :happydance: Lil thing was moving all over the place. Wish I could feel it but seeing it was good enough.


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## lilesMom

hurray I'm griinning. Here for ur great news xx
So happy for u. Xxx congrats


----------



## essie0828

Thanks hun :hugs: It still hasn't sunk in that we will have 2! 

How's lil man doing? Seizures still bad?


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## lilesMom

ur making me seriously broody again :) ha ha
great news :) xxxx

we ended up in hosp. 
we were only in for a night 
i had to give him rescue meds twice in a day, he has only had um twice ever before.
i rang hosp and they said bring him up, they admitted him to be safe.
but seemed like a freaky day , he is much better again.
he had very little sleep the nt before so could have been that.
tiredness brings um on.
they often do sleep deprivation for eeg tests to bring on fits on purpose.
i also gave him strawberry again , thinking back on it , 
it could be a food trigger for him cos last time he had it , i thought he was funny too.
no more strawberry until he can talk just in case 
had another med increase in hosp, slight but might just do it.
and some blood tests and stuff so he is fine.
im fine too, 
delighted to sleep in my bed and not on the floor 
he just went nearly 24 hrs without one and even then only had extremly mild one, so maybe its working at last.
appetite is still crappy but not as bad.
might be a bit from teeth as well,
then when he doesnt eat, lack of food to weight down milk drives reflux bananas.
he might be just startin to get used to new med as well.
they do say it has an 'adjustment period'
nice words for screws ur baby up for a bit 
he is good today anyway , bit sleepy but good so, 
heres hoping :)

love to all xxx


----------



## lilesMom

hey how is everyone xxx


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## essie0828

Hey mam :hi: Sorry it's been a while. Been mega busy with appointments. DD had a swallow study done yesterday and we were recommended to start feeding classes with her. So even more appointments :wacko: 

How's little man doing?? 

Off to dinner..... mama is too tired to cook tonight :haha:


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## lilesMom

I'd say we,may get sent for swallow study too 
Still feeding issues here.
He is good. Seizures not totally gone but much improved.
What does feeding classes entail?
We see salt for feeding.
I'm thinking his new meds are his biggest feeding block at the mo
My thyroid had gone really low too. 
On increased meds now so should be good again soon.
How r u now hon?
What age did ye get afo s at? Random qs


----------



## essie0828

Good to hear Simons seizures are a little better. Wish the lil guy could be rid of em completely. 

I'm not really sure what the feeding classes will entail but I think it will be similar to what we do in speech therapy. When we start the classes Ill let you know what we do. Dd is having to swallow several times just to clear her mouth of small bites of food. So the hypotonia is affecting her swallow. She was getting sinus infections from coughing food up into her nose but she hasnt had an infection in months. So there's improvement. 

We got DDs afos at around 18 or 19 months. We probably could have gotten them sooner but we didn't have a diagnosis of cp until 18 months. We had asked several crappy docs about them when she was 13-15 months old but were told to "wait and see" yet again. Some docs even suggested that she needed the time without them to build up her strength. After the afos though, her strength in her legs improved greatly because she could actually get up on her feet. Before them her ankles were just too weak and wobbly. 

My thyroid levels are a little low as well. TSH was 4.1 so just a little out of range but enough to have me worried about the bean. Had an ultrasound and the lil thing was wiggling all over and had a strong heartbeat. Doc says increase in meds but not to worry. I think I feel movement from time to time now, especially if I squish my belly bending over or getting in the car. I didnt feel DD until much later so I still think it could be gas :haha: Still haven't told family yet and I think my mom is suspicious. I'm looking quite chubby now. Going to have to come out with it soon I suppose.


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## lilesMom

Simon is choking on everything again. 
Even puree food. He had been doing great.
I think it's,the epilim aggravating reflux
Not sure though. Gonna have to bring him to doc third time fir same thing
Arggh. Money us,low enough to pay again to be told wait and see.
Only managed to give him half his med.
Il have to wake him in a bit for the rest.

I must ask his physio the next day about afo
I'm thinking and hoping soon ish ;-)

Aw that's cute bout ur Mom.
How u feeling now?
Better I hope xxx
My tsh was 10.5
In Ireland it's over 5 are our guidelines so hopefully ur meds will kick in and ye both be fine xxx
Had a lovely bbq out our back there.
Just in and it starts raining
Good timing.


----------



## essie0828

Hayley had really bad reflux when she was around Simons age. It seemed to start around 6mos and lasted until she was 15 or 16mos. We had her into every doctor we could find and no one ever really helped us. Looking back though it was probably the hypotonia and eventually her tummy muscles got a little stronger. I remember the poor thing getting choked and not being able to take a breath for a few seconds. I swear every time my heart would stop. She would look so terrified. Ughh hated it! We finally found a balance. I would have to mix about a table spoon of cereal in her liquids to thicken them slightly and her fruits and veggies had to be thinned a bit with formula or water. But some days it didn't matter what we did, she would still choke. Teething usually made it worse as well. That may be why Simon is having a rough time, teething and meds probably make the reflux worse. I hope it passes soon :hugs:

I think the tsh guidelines here are 0-3, so I was just barely out of range. My free t4 was within range though and that's the hormone the baby needs so I'm a little less worried. When I lost our first one at 16weeks my tsh was 14.5. I still worry it will happen again and I am quite unattached to this pregnancy at this point, but some days I think "Holy Crap, there's gonna be another baby in this house!" It's a bit scary. :haha: I feel really good for being pregnant. I was so sick the whole time with DD. I was throwing up everyday and with this one I forget I'm even pregnant. My mom was down to see DD for Easter and she kept looking at my belly. Then she started talking about all the ppl she knew that were expecting grandkids:haha: I'm almost sure that she knows. I didn't tell her about DD until I was about 17 or 18 weeks, she was a little miffed but understood. I'm thinking about waiting until mothers day this time;)

You must be wiped out with a tsh over 10 snd a little one with reflux and seizures. Hope you can get some good rest. Really though when the thyroid stuff is low, no amount of sleep is enough. The tired seeps into your bones. :hugs: If Simon does get afos finding socks is the worst part. That and keeping an eye on them to make sure they don't hurt his feet. There's a lot of unstrapping and re applying to check for redness and sore spots in the first few weeks. It's a bit of a hassle if the kiddos are fussy. And a kick from a kiddo with an afo on HURTS. DD soon learned that she could use hers as a weapon during diaper changes and such. :haha: Does Simon crawl much? Can he pull to stand? He's a little young and DD wasn't doing that stuff yet at that age but if he does you may want to consider SMOs. They are basically short afos that support the ankle. They are good for crawlers because they are small enough to not interfere with their knees during crawling. The ones we have are combo afos and smos. When DD is home and is mostly crawling/cruising we keep her in the smo, short braces. When we do physio or any real walking practice we snap the small braces into her afos. The extra support helps her to take independant steps while standing but when she tries to crawl they are so stiff they throw her knees out odd. So we really have to keep her up on her feet if she's in the big braces.


----------



## lilesMom

Thanks for lots of info xxx
No crawling or pulling to stand here.
His physio reckons he will walk before crawl.
His right-hand doesn't have the co ordination or strength for crawling
He can shuffle on his belly a bit. Mostly in circles ;-)
He can sit and,rocks so hard he moves his highchair across the kitchen ;-)
I'm thinking afos not too far off I hope.
He goes,in his,stander every day to strengthen up

Thank God ur t4 was fine 
U caught it on time so xxx
Yeah it's really sapping when hypo isn't it
I blamed stress and my dodgy liver for how crap I felt
If I wasn't so focused in Simon and,seizures I would,have realisedd it was thyroid
Least we both have extra meds now ;-)

How's hayleygetting on walking? 
Xxx


----------



## essie0828

https://i1275.photobucket.com/albums/y449/essie08282/Mobile%20Uploads/th_20140428_121129_zpsee8c5fcf.jpg


I hope this link works. Its a video of DD.


----------



## essie0828

Well the day started off so well and then just turned to crap. Going into hospital, had a bad bleed and lots of cramping. I'm pretty sure lil bean can't hang in through that. Danmit! Just hit secong trimester to. :(


----------



## essie0828

Well the news wasn't good when I got to the hospital. I lost the baby and almost died in the process. Thankfully they were able to save me and my uterus is still intact. Had to have 2 units of blood and they had to cut my abdomen in 2 places to do a laproscopy to find the bleeding. I was intubated and my throat hurts like hell. It's been a rough day. DH is really freaked out and said he doesn't want to try to have another baby after this. I don't really blame him but I really would like a sibbling for DD but I am afraid after all we've been through. Ughh it's just so sad but I have to be here foe DD so I think she will be an only child. Now I just gotta heal up and concentrate on her, she's doing so well lately and she makes me so proud. Thank God I have her.


----------



## lilesMom

Oh my god.
Hugs honey
U poor love. Xxx
I've been tHinking lately I may just have Simon too cos he needs all my time and fear
Hugs again hon.
Hope u heal fast. Xxx
So sorry for Ur loss 
Hayley looks beautifull , couldn't get vid to work
Glad she is doing well Xx

I don't know what to say, wish I could help u xxx
Im always here if u need to vent or chat xxx


----------



## lilesMom

Thinking of u essie. Xx
Hope u r resting and healing xxx


----------



## essie0828

Thanks hun. :hugs: I'm feeling better, just weak and sore. I'm still trying to figure out what exactly happened during the surgery. I must have crashed or something because they intubated me so fast that I have a few small cuts in my throat and I'm bruised under my jaw line. They told me that the operation would only take 15 min but I was in surgery for almost 4hrs. Something had to go wrong. I miss picking up DD but I can't lift anything over 5lbs for a week. DH has taken off work to stay home with DD while I recover. Taking lots of meds and just kinda feel out of it. Finally got to take a shower today and take off some of the dressings on my stomach. Feel much better after that. I was bright orange from thighs to ribs from the iodine scrub. :haha: 

How's little man doing? I hope his seizures are getting less frequent. Our state has just passed a law allowing docs to prescribe a new medication derived from marijuana for seizures. Some of the kiddos that we see at the rehab hospital have started taking it with success. 2 of the moms have told me that it works better that their previous meds and there's less tummy upset and lethargy afterward. Sounds promising for parents and kiddos dealing with seizures.


----------



## lilesMom

Showers are always welcome after hospital stay.
U feel much more human after xxx
U poor pet. That's awfull. 
U must have had a bleed inside or something to say it took so long and u needed blood Xx
Hugs again. Wish I was closer 
Simon and me would call and bring u flowers ;-)
Thank God u have dh fir the time being
U need ur rest Xx

Simon is ok
Seizures not gone totally but a million times better
If only he could eat.
He is on near total food strike now
Combo of teething, meds and reflux
Hoping it gives him a break soon
He loved food and was doing great till New med

How's hayley taking it all? Xx
Hope you are feeling ok emotion wise. 
Or as ok as u can be under circumstances Xx
Ur,prob in shock from it all
I'm glad ur home and being looked after xxx


----------



## nearlythere38

Hello ladies, Im sorry I havent been on for a while. We had a very busy few weeks caring for Ava, visiting hospices and in and out of hospital.

Sadly Ava passed away on the 30th April, peacefully in my arms at the hospice. Heartbroken


----------



## maisie78

I am so very sorry nearlythere. I can't imagine how heartbroken you must be. Sending you love xxx


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## lilesMom

Oh nearly there so sorry honey. Xx
Crying for u here. 
Hugs. Xxx


----------



## xx_danni_xx

So sorry to hear about Ava, nearly, sending lots of love xxx


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## essie0828

Oh no nearlythere :cry: I'm so sorry for your loss. I can't even fathom your pain. :hugs: We are here for you if you need to chat about anything. Fly high baby Ava.


----------



## lilesMom

Essie how u doin hon.
Hope it healing ok xxx

Nearly thinking of u hon xxx
Hugs


----------



## essie0828

Doing much better. Been cleared by doc to resume most normal activities and am trying to keep my mind busy. Was told at the followup with my OB that I had suffered a MMC approx 2 weeks before I was admitted into the hospital and that had caused an infection in my uterus. That complicated the surgery and that was the reason for the extra procedures. They had to make sure the infection didn't spread to other organs. Having to take massive doses of antibiotics but off the pain meds that make me feel like a zombie. Thankful for that. DH goes back to work today and I am solo with DD. Kinda looking forward to it, I've missed being her primary care giver. She has gotten to watch way too much tv over the last week so I have a full day planned for us after her PT. Weather is going to be nice today :)

Has Simon started eating better? I hope the lil guy gets back to it soon. It's worrysome when they don't eat properly. I still fret over how DD eats. I've heard a million times, people say that she will eat when she's hungry and she won't starve herself but with Hayley that just isn't true. She still goes off food sometimes and we have to resort to bottle feeding her. Most days are good though and we get closer and closer to getting rid of the bottles everyday. 

Nearlythere, still thinking of you and your family:hugs: Hoping that you are starting to find your way after loosing Ava. It's ok to not be ok sometimes hun :hugs:


----------



## lilesMom

Glad ur feeling a bit better hon Xx
U needed rest but I would def feel weird if dad was minding Simon too ;-)
I'm sure she be glad to have u back with her xxx
Hugs again X
So sorry about mmc. I had one before Simon too.
Really tough on u xxx
dead right to focus on beautifull hayley xxx

Simon I'd still off food.
Did eat once today which is big improvement ;-)
They are talking about motilium for him but I'm reluctant
Ye ever try it?
They also said maybe try neocate
Kinda tempted to try for few weeks
But milk is all he will have at no so don't wanna ruin that

Hope u can get off anti b soon
They do wreck u xxx
Love to hayley too x


----------



## essie0828

Hi ladies. It's been a while since I've posted, I hope everyone is doing ok. 

Lilesmum, how's lil Simon doing with eating now? Did you try the motilium or neocate? We never tried the motilium but we did try formulas similar to neocate with some success. And we ended up doing formula longer than most. The switch to a new formula can be a little rough sometimes and I know what you mean by not wanting to ruin it for him since that's what he eats most. But it got us through some of the worst patches of reflux and tummy issues. Hayleys little cousin was hospitalized last week, he's 11 weeks younger than her and was diagnosed as having seizures. He has the kind where he just goes limp and tries to stop breathing. His mom co sleeps and he stopped breathing while they were all in bed and she had to do cpr on him. Terrified her and the family. She was convinced he would have died if he wasn't in bed with her. He's also been diagnosed with developmental delay and will start therapies soon. Its a bit of a shock. Been a crazy few weeks. 

Hayley is getting better at walking but will still try to knee walk at any chance. If I can keep her up on her feet and motivated she can walk about 50 m. Sometimes less, sometimes more and she's very slow but she's getting better. We ditched the kaye walker and are making her walk without holding a fixed object. She does lots better if we give her a small toy to pack though. Her trunk rotation is getting better and some of her fine motor skills are improving. She's also been saying "HI" to people :cloud9: She doesn't talk much at all so we are excited about that along with her following directions in pretend play. She loves feeding her bears and dolls with her play kitchen set. She will get a spoon and a bowl and pretend to stir and give bites to a doll or me. She will also pretend to pour a drink in a little tea set and give drinks to everyone. Its super cute. Caught her poking the cat in the face with a plastic spoon the other day trying to feed the cat. :haha: The cat was not impressed and found another spot to nap.


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## lilesMom

Heygood to see u back.
Up post properly tomorrow.
Lil mans bday today and I'm wrecked!! Xxx


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## essie0828

HAPPY BIRTHDAY LIL MAN! Hope y'all had a wonderful time. Hard to believe he's 1 already.


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## lilesMom

Thanks xxx
I know the big 1 already ;-)
My lil boy now instead of baby ;-)
Glad hayley is coming on so well 
Its so great to see progress Xx
She is super cute ;-)
That's awfull about her cousin
Thsnk God they were co sleepingI still have Simon co sleep
It feels safer between seizures and choking from reflux
Least her cousin will get proper help and meds now
Xxx
Simon is still dodgy with food but some improvement yest and today
Upped his laxative
I had reduced it cos I thought his nappies were runny
But dietician reckons it's a sign of worse constipation and it's overflow diarrhoea
That was only yest and he seems more settled
Still no nappy though
He is doing well though.
Virtually no seizures thank God
In good form
Stays in standerhappily for 40 mins
Can sit now but will throw himself back something sometimes
Using his right hand more
We are waiting for his play therapist Moshe calls to house once every 2 week
For 6 visits.
I'm doing a course about how to help his speech along
Which is great. 
Not much more going on really ;-)
Hope it recovering well essie xxx


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## lilesMom

Nearly there I'm not sure if u still read 
But if u are just want to let u know I'm thinking of u xxx
Hope it holding up ok hon xxx


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## waiting2c

Hey ladies - decided to check out this board on BNB. Have a nearly 2 year old son who was diagnosed with Polymicrogyria a week after he was born. This is a brain malformation that means he grew too many braincells and in the wrong places. An offshoot diagnosis from this is *******, dystonic quadraplegic CP, been a devasting couple of years for us but he is the most gorgeous boy and has a winning smile. He cant sit, or stand and will probably never be able to do these things. He tries so hard to move his arms where he wants them to be able to play but it all just comes harder for him. Just would like to get in touch with other cp parents really and see how things go/can go.


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## lilesMom

Welcome hon
It 's nice to be able to chat here to people who understand xx
My lo is just one.
He had a stroke on day one 
He has right sided hemiparesis and epilepsy and horrible reflux from low tone
He is a fab little guy 
I love him to bits.
He is my only child.
He can sit now.
And has a stander to build up ststrength.
He has lots of therapies and help since very start
Which is great but can be tiring
I'm very grateful for it and him ;-)
Cp varies so much from one kid to another
But we still can identify with each other I thunk.
Glad u found us xxx


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## lilesMom

Just saw ur ticker.
Congrats on pregnancy. Xx

Hey to all xxx

Essie how ye doin?


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## essie0828

Welcome waiting2c :hi: it's good to talk to other parents of children with cp from time to time. :hugs:

Hi lilesmum :hi: We're doing mostly good here. Kiddo has her days and nights mixed up and keeping a routine has been almost impossible. Hoping that the next few busy days will wear her out and reset her bedtimes. She's been waking up around 1am every night and staying awake till past 6. Then wanting to sleep through her therapy times. It's causing her to be moody and show off some of those toddler tantrums. Tomorrow we will be traveling and doing therapy most of the day and I dread it some. Maybe she will sleep better tonight.


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## lilesMom

Simon has patches of that too.
Its terrible. Usually teeth are the cause here
Would nt be not too bad if no appointments
Cos u could catch a snooze in the,day.
Hopefully she will get back to routine,soon
Often a really tiring day can sort it. 
Things are better here.
Seizures nearly gone.
He is eating good bits again
Therapies are going well.
Xxx


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## essie0828

Glad to hear lil man is doing well with his eating and no seizures, wahoo! :happydance: 

Hayley hasn't been eating very well but is starting to come around a little. She has had an odd couple weeks of not sleeping or eating well. She has all her teeth now so I'm puzzled. She seems to be growing, but I haven't measured her. Everyone is saying that she's getting taller so a growth spurt may be the cause. :dohh: She's tall as a 4 year old now. Makes her delays more noticable unfortunately. Everyone thinks she's older and they expect her to carry on a conversation but she can't yet. I have to explain a lot. But I'm lucky she's growing so well despite feeding issues.


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## lilesMom

That's funny Simon is in 3 yr old clothes.
He put on a teeny bit of weight even when he wasn't eating.
He wasn't having loads of milk either so I don't know how he managed it 
Doing New things makes um wakey too.
Maybe it's cos she is walking more? Xx
or could be hunger but unable to eat
I had to triple simon laxative dose.
Poor guy was blocked. 
He wad having loose nappies so I had reduced it
Turns out it was overflow diarrhoea around a block
No wonder he couldn't eat. 
I was following what docs told me but still feel bad ;-)


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## lilesMom

I keep getting the, oh is he walking qs. 
I say no.
Then I get oh still crawling.
I say no.
Then I get the weird look that means one of two things
They think.something is wrong and um clueless
Or I'm a bad Mom who keeps him sitting in buggy
If it's someone I know I'll explain 
But I've given up on strangers ;-)
I'd I explain it either makes um feel awfull for asking
Or I get stupid platitudes or lots more qs
So I tend to not bother ;-)


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## nearlythere38

thank you for still thinking of me. i am not doing very well if im being honest. i miss Ava so much, its a physical pain. it still feels very much surreal, has this past year actually happened?!?! 

i dont think i will be coming on here anymore. painful reminders in every way. but i would like to say thank you for your support, and i wish you all the very best and that you and your beautiful bubbas have health & happiness xxxx


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## lilesMom

Hugs hon. 
I totally understand why u wouldn't want to be on here xxx
I have no words to do ur pain justice hon 
I really feel for u and,would love to be able to help xxx
If u ever need to chat, vent or rant
Please feel free to come back here or pm me xxx
Giant hugs xxx


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## essie0828

:hugs: nearly. I cant even say how sorry I am for your loss. We will be here if you ever need to get a few words out. And we will always remember you and lil Ava.


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## essie0828

Hi ladies :hi:

How are the kiddos? 

Hayley is on antibiotics again. Another sinus infection and fluid on her ears. She has tubes in her ears so there shouldn't be fluid, have to go see the ENT specialist to make sure tubes are not blocked. She's still having trouble sleeping and is a little off balance but she's coming around. Shes eating better and blabbing more. Good signs. I have been looking for a nice stroller and ordered the Joovy Zoom 360 but when I received it, despite the company claiming that their stroller would fit a child up to 75lbs, DD is too tall for it. She only weighs 29lbs! Total hassle. I'm so disappoined to, its a beautiful stroller :(. So now we're stuck. I think we maybe able to get a special needs stroller with her insurance but I'm not sure. If insurance won't pay we are gonna have to fork over 600 $. On top of the 270 $ I just spent on a stroller that won't work. Grrr. I really want to take her hiking but she can't walk very far. I'd love to find a carrier to fit her to. I could piggy back her on lots of trails. DH and I did lots of hiking and camping before kiddo was born and I want to share that with her. Any suggestions? Btw did anyone see the america n news story about a 14yo who carried his 7 yo little brother (who has cp) 40 miles to raise awareness for cp? Its a beautiful story. He was able to raise money to get a handicap accessable playground for his little brothers school. He also wanted to raise awareness about adaptive equiptment and encourage new designs to help kiddos with cp. Oi what a wonderful thing.


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## lilesMom

Aw that's lovely of the 2 bros getting the play ground.
I don't know on stroller hon
We have the little nipper , out n about buggy
recommended by his ot
Not sure if it would be tall enough for her though
Nice light buggy :-D
Hope u get sorted xxx

Lil man is getting glasses.
H has moderately high astigmatism and is short sighted.
We had video critique with speech and Lang course yest.
2therapists were there.
They said their only advice is keep doing what I'm doing cos it's perfect ;-)
Proud mom ;-)
Getting him a smart trike soon
He will love it ;-)


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## essie0828

Go Mom! :happydance: And go lil man! Thats good news about his speech. I worry about Hayleys speech a lot. She's understanding more and responding to requests but not making a lot of new sounds. I'm afraid she will always have a learning disability and that she may not catch up. All we can do is try and pray I suppose. Spoke to her PT today and she is going to get us a stroller :happydance: No cost to us as its a loaner program, we just return it when she out grows it. We will be hiking by next week.


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## essie0828

My DH has terrible vision and strong prescription glasses, so far DD has been able to avoid them but her eyes are still a bit off. Her right one turns in and out on a whim. Patches help to strengthen the muscles though.


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## lilesMom

It's tough not to know how our los will be later
But like u say we can only do our best, keep our fingers crossed ad pray xxx
So far so good speech wise for Simon
But where his stroke was puts him at risk
They said no guarantees he wouldn't have trouble later on cos of it
Hopefully not ;-)
Hayley and Simon will hopefully keep getting better speech wise. Xxx

Yeah I don't mind getting glasses
Def better to know anyway ;-)
I feel bad cos I cancelled his last eye app cos he was in the middle of the seizures.
But it may not have been apparent then anyway
Last 2 checks I was told it was fine but a squint.
Might be a more recent thing.

Hope all's well xxx
Is it just essie and me left here? 
Love to all anyway :-D


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## Clea_Lerman

I don't have children yet, but I know what CP is, because I also have it. I spent my childhood in different clinics. I'm still not good in walking and need somebody's help, but I graduated from school with a gold medal and studied linguistic at the university. Faith and love can do everything! Good luck!


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## lilesMom

Thanks clea xxx


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## essie0828

Hey ladies:hi: 

How's little Simon doing? And mom? 

Clea thank you. :hugs:


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## lilesMom

Hi hon.
How ye doin Xx
We,r ok.
Still,feeding issues.
His appetite has seriously gone.
I'm getting frustrated and running out of ideas.
Sorry I'm a bit grumpy today.
Hope ye r well xxx


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## essie0828

We are having feeding issues to. :nope: Having to supplement with liquid nutritional shakes a lot lately. She was doing great last week and now she's barely eating solids. Just nibbling then drinking most of her calories in milk or shakes. I think it's related to her ears. How bout Simon? Is he taking his milk still or is he refusing everything? Maybe constipation related? I hope y'all get it worked out. It's so frustrating for a mom when her kiddo refuses to eat, drives me crazy with worry. It's ok to be grumpy dear :hugs: Everyone gets overloaded and cranky sometimes. I hope things lighten up for you soon. :hugs: 

Had a great time yesterday with kiddo and fireworks. She LOVED them! We were afraid the loud noise would scare her but nope, she was amazed. She put her little hands up on her cheeks, mouth wide open and watched every second. We brought a bunch home for her. And when I say her I mean me and my husband of course :haha: We were outside late setting them off with her watching from inside her little truck. She had a blast pushing her little truck around rows of sparklers stuck in the ground, those were her favorite.


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## lilesMom

Aw ur day soyndslovely Xx
Sorry ur having feeding issues too
It is very worrying
It was constipation which worsened reflux
I asked foe losec for 2 months.
Finally got it and he is improving away now again. Thank God
We had meeting with consultant tues
She dismissed me and my ideas completely
I was cranky since and questioning myself.
She sent me her report on the meeting yest
It was all mistakes and or lies.
Um not sure if accident or she didn't listen
I sent back a letter today and I feel better now
Its out of my system and into the post box :-D
Our play therapist called yest
She said she had been told the Doc was very hard on me
She said trust my instincts :-D
She advised writing the letter
She was so right. It took away a big weight
That and milky tot is starting to eat again
Its been goin on since Feb, He had lost a kg slowly.
2 weeks on losec and already huge improvement
Hurray xxx
I can go back to calm me again.

How is everything going with u hon xxx

Not sure who.is still here but hey ladies
Hope all's well Xx


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## essie0828

Aww hun doctors can be arseholes ;) Im glad he's doing better now. I've been in the same situation a few times. I have a doc now that values my input and is awesome. I have reminded them before that even though im not a doc I've had thousands of hours in the school of Hayley and I know when something isn't right. You did the right thing. Some docs haven't had a lot of experience with CP kiddos. Statistics are 2 in 1000 kiddos have cp....so how can they have enough experience if they only see a few thousand patients? Constipation and reflux are so common with cp as well as epilepsy. My cousins son has epilepsy and has problems with reflux, he takes the same drug Simon does now. It's helped him tremendously. This child hadn't gained weight for 6months and it took a fit that nearly killed him for docs to take my cousin seriously. Keep your head up hun, it's hard to trust yourself but you know him best and you've had more experience with cp in the last year than most regular docs will have in a career. :hugs:


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## lilesMom

Thanks hon xxx
I feel miles better now Simon is doing better
How's hayley doing 
And u of course xxx


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## essie0828

We're doing pretty good. Struggling some with feeding. Seeing the ENT specialist tomorrow morning to make sure her tubes are functional. She's been rubbing her ears and putting her z vibe in the very back corners of her mouth and chewing loads. Thats her way of making her ears feel better. She's lost some weight since February as well. Almost a whole kg. She has grown taller in that time to and it makes her look thin. With her height and feeding issues, it's a constant struggle to keep her above the underweight category. Just today she has started refusing her bottles and that sends me scrambling to get fluids in her. She's pretty good with a straw but only drinks small amounts with them. I have even resorted to squirting water in her mouth with a spray bottle because she thinks it's funny and will swallow most of the water. Mostly she refuses, even soda, caffeine free of course, but I mean come on every kid is supposed to love soda. I really hope the ENT can shed some light on this. If not, her regular doc will be in the same building, we will go see her. We have been working closely with her OT on the feeding issues for over a month now with progress followed by setbacks. This is leading me to think it's related to her ears again. I wish she could just tell me her ears hurt :cry: She's so stinking tough. Fingers crossed tomorrow brings a solution.


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## lilesMom

Hugs hon 
Hope they figure it out
It's so tough to watch them struggle xxx
Go with ur gut
If u think it's ears, I'd bet money ur right xxx
Fx they can sort something for her
It gets so frustrating trying yo persuade them yo eat and drink 
Xxx


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## essie0828

Good news from the ENT specialist. Tubes are in and functional although one had to be unblocked and they had to remove quite a bit of wax. She's eating better today after a huge hard poo. She was constipated and stopped eating, again. Constipation is hard to manage with DD as well. We've had better luck than some but it still rears its ugly head quite often. I try to manage it with fiber supplements and some sweet drinks, that works most of the time but we have to use laxatives some. When DD was Simons age we had to rely heavily on laxatives. We kinda joked that we had to feed the baby, burp the baby and poop the baby. We would have to use liquid glycerine suppositories almost every bowel movement. Looking back it's a classic sign of cp, but the doctors didn't seem concerned. They just told me to give her miralax. :dohh: 

She's ate chicken soup and bacon today already, wanted that for breakfast :haha: Makes my heart warm :hugs: I love the days I get to cook and feed her good stuff:happydance:


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## lilesMom

That's fab.
On both counts xxx
U wouldn't realise how bad ur stress levels were till they start to eat again xxx
her food sounds yummy
Simon Stoll has low dose laxative every day
Just to make sire he stays unblocked :-D
That's great ur little cutie is better.
Docs are same here, take no notice really of the constipation
It effects them soo much, we def notice it


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## essie0828

Lol, that's true! I feel like I can breathe today. She's still a little behind on fluids but I have a plan for catching up after nap. Surely the bacon will work in my favor by then. ;) She did good in PT today:happydance: We're trying to get her to bend over when standing and put her hands on the ground and stand back up. This will eventually lead to her being able to bring herself to a standing position without pulling up on something. She's able to bend and recover very nicely but is still choosing to pull to stand when she can. Im excited. Btw I have stickers and play dough and bubbles all over my floors from having her bending over to play:dohh: It was so fun though :haha:


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## lilesMom

Wow she is going so well Xx
Go hayley xxx
Not much news here really
Quiet again thank God.
We are glad for non eventful after last few months


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## essie0828

Hey lilesmum :hi: 

Hows Simon doing? Hopefully he's doing good and things continue to be calm. :thumbup:

DD had part of her year assessment from early intervention today. She was a being quite stubborn and refusing to try most of the tests. Turns out she really needed to poo:haha: The therapist was really nice about it and said she would come back and reassess her when she wasn't quite as distracted :haha: Poor thing was really workin hard on pooping and wanted no part of our games. I really don't blame her:haha:


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## lilesMom

Hey :-D
Poor hayley :-D they must get so sick of us and our,well meaning therapies :-D
All for their good though.
Simon's physio is always asking is he a cranky guy
He is the total opposite, it's hard to tell her it's just when he sees her :-D
Its still calm here 
Feel q little at a stand still even though I know he is doing fine
Progresd is just slow. :-D
But progress is progress :-D
How r u keeping xxx


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## essie0828

Ha! :haha: Hayley first PT was like that. Thinking it was kiddos natural disposition to be grumpy, lol hard to tell em its just when they show up. 

Glad to hear lil man is doing well. A stall in progress is normal. Regression not so much, but I have seen DD stall out for a few months. Then bam! All kinds of new development. Simon is probably doing the same. How's his seizures?

Things are going pretty good for us. Therapy full blast and kiddo is walking so much better. I can hold her hand and we can go check the mail. :cloud9: Granted it takes a while and her gait is no where near perfect but it's a dream come true. Keeping her from falling is a full time job, and I accidentally dumped her over on her head at the rehab hospital. It was just before therapy and the poor thing cried forever. She had a little knot on her eyebrow ridge and cheekbone :( I got upset and cried right with her :haha: In front of the whole place. I dread going back out of embarrassment :haha:


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## essie0828

So this is an off topic rant. Kinda feel lame for posting it but I need an outlet. I am so fed up with DH right now. Like, close to getting a divorce fed up. I'm stretched with DD's care and trying to manage him, worn thin if you know what I mean. He's very irresponsible and that's definitely nothing new to me. Before Hayley I would just help clean up his mistakes. He has ADD but he won't see a doctor. His attention problems are pretty bad, he can easily get distracted and forget to watch DD. That's not at all good with a semi mobile toddler. She can quickly get into things now. He never keeps track of his spending. I don't mind to do the accounting but he buys things and forgets to tell me and that makes keeping finances hard. He can't/dont/won't listen to my pleas for him to do things differently. It's almost too much for me. I've been pretty mean to him lately and seeking revenge, that's not a good way to be. I know I shouldn't be petty but i feel really let down, I'm just to angry to talk about it with him anymore. I've been trying to wait out this pissed off attitude I've been having but it's been days and I'm just numb. Ugh. Frustrated to the max.


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## lilesMom

Aw hugs honey.
I'm the adult in my house too For some strange reason guys get away with being a big selfish kid,
While we hve to do the responsible stuff.
I've tried showing my oh Simons physio but he gets cross and won't listen.
Sorry trying to get him to face the truth 
When we were told it was cp, 
When we got out of the team meeting he says, 
He doesn't hve cp that was what they said to get usmore services :-D
Ostrich :-D
Sorry not much help to rant too
But wanted u to know u aren't alone in ur frustration xxx
Hugs xxx


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## lilesMom

Ha ha, I'd ref cry too.
We spend so much timeprotecting um, it's upsetting when something happens
However small and unintended xxx
Seizures still gone thank God
Hope they stay away now :-D


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## essie0828

That's wonderful news about the seizures! I'm really happy to hear that. :hugs: 

Ugh. Men! Wtf is up with them? Has your man accepted Simons' diagnosis yet? DH just kinda does his thing and depends on me to sort out all the medical stuff. Honestly though he admitted he couldn't do it up front. Our deal was he takes over finances until kiddo is self reliant enough to go to school. And that could take a while. We talked and he says he will be more responsible and so far he has been. I still feel uneasy about it all but I have to let him try i suppose. DD has been doing pretty good but is not eating solids like she should again. We had a few good weeks of her eating well and now back to her drinking a majority of her calories. Hopefully she will come out of it soon. I hate when she doesn't eat well. :(


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## lilesMom

Thanks hon xxx
He knows now he will walk late and stuff
Bit I'm not sure he realises it will affect Simon his whole life
My oh is same, he pretty much ignores medical side too
Never cones to appointment even on his day off
But we r ok again now.
Had phase where.I wanted to kick oh ass :-D

We hope hayley eats properly again soon 
Simons food is picking up again but with bad days thrown in
Xxx
Its hard when they can't eatwell
On them and us xxx
Hugs Xx


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## essie0828

Hey lady :hi: 

How's Simon? DD is doing pretty well. She's trying to say more words and I love hearing her voice. She's normally quiet unless something is wrong and then she moans a lot. To hear her babbling inher sweet voice makes my heart warm. She's been trying to sing lately to. :cloud9: 

Well it looks like I'm going to be a single mom soon. I am seperating from my husband. We are set to move to a new apartment in 2 months. Sink or swim we are on our own then.


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## lilesMom

Aw hugs hon
It's gonna be swim Xx
U already do it on ur own, 
Now u will hve freedom to not carry around dead weight aka dh Xx
Sorry it's come to this for u. 
I'm always here if u want to chat and or rant xxx
I'm glad hayley is doing so well Xx
Little cutie xxx
Simon is doing well. 
They hve decided his choking episodes are oral motor issues.
So starting help for that.
I think a lot if it was Reflux too to be honest
S is on antibiotics and I'm on steroids 
But nothing major at the mo. 
Thank God.

Hope things r better for u soon xxx


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## essie0828

The oral motor exercises will help him with the choking episodes and will help to curb reflux. It strengthens their throat muscles to. Granted DD still has problems with it but she's came a long way. Lil man will to. :)

I hope you feel better soon. And the lil guy to. Thank you so much for the support. It means a lot. :hugs:


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## lilesMom

Thanks honey Xx
Don't ever feel alone cos ur not Xx
I may not be physically there but I talkto u more than most of my real life friends :-D
Xxx
Hugs hon.
Hve u apartment picked? 
Are u happy with the area and stuff Xx


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## essie0828

Thanks hun. :hugs: I don't see any of my old friends anymore since Hayley was born. They don't have kiddos and it's just too different now. Haven't picked an apartment yet but we will stay in the area. We were approved for respite care services recently so when I do move if things get to be too much I can have a nurse come and stay with us while i rest or clean or anything really. Feel a little odd about using it because she has never been away from me but the service coordinator was really nice. She said that I don't have to leave her but the nurse will still come out just to be an extra set of hands. That's a comfort to know. We are on a waiting list for another waiver that will provide even more child care services. DH says he doesn't want to live separated. I still think I do. 

Have you ever played with Google Earth? I was looking on there at Ireland recently. It's a very interesting and beautiful landscape from above. The farmlands look like neat little green boxes. And lots of them! That's how I do my world traveling, playing on Google Earth late at night, :haha:


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## lilesMom

When Simon was tiny
I was called by a charity who offer respite.
I told them I didn't need it, they said I could call back if I needed to
I'm seriously thinking bout it lately
But like u I don't leave Simon and ref couldn't to a stranger
But I would love a break sometimes
Feels,bad admitting that, I love him heaps but would like guilt free me time :-D

U think u might change ur mind about dh? 
Sometimes I think on my Own would be easier
We spend no quality time together and bug each other far too easily
But I do love him and don't want anyone else so.....
I don't want to split, I just want us fixed
But I'm not sure I ever see that happening to be honest
Posting cos on phone


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## lilesMom

I've looked at my house and my parents house on Google earth :-D
Ireland is pretty, too much rain though 
Without it we wouldn't be so green I suppose :-D


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## essie0828

If you get a chance check out Red River Gorge in the state of Kentucky. It's my back yard so to speak ;) We moved a little west of there to a city but I grew up close to there. What part of Ireland do you live in? Without being very specific of course;)

I don't know if I will change my mind or not. Like you I don't want anyone else but right now I think living apart would be better. I guess it's really up to him, I've drawn my line and well, I'm really damn stubborn. If we do divorce that's it for me, I'll never have another man around not worth the trouble. :haha:


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## essie0828

My mom laughed when I told her about the respite nurse. I've never even left DD with her for longer than it took me to go to the doctor. Don't feel bad for needing a break, ever. It's a hard job being a mom and it's even harder when the kiddos have medical problems. Mabey you should consider the respite. Even if you just stay home with them, you may really hit it off with your worker. Even if she just holds him while you have a meal or a coffee or a bath. I think it would help. I'm going to try it I think but I'm not going to leave her. Just going to have them over for a few hrs to play with DD and see how it goes.


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## lilesMom

I'll check our ur back yard soon :-D
Sounds cool. Impressive name 
I'm from north county cork.
Proper country side, surrounded by fields but close ish to 3 small towns 
An hour and 15 mins from munchkins therapies 
I lived here when I grew up.
Lived in cork city for 11 yrs and then moved aback 
Cos of lower house prices :-D

Yeah if our respite would let me stay I would chance it 
Be nice to hve a bath or do proper cleaning of house :-D
I should check it out again 
How much time would u be aallowed?
Could def be good if our lo s like them :-D


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## essie0828

We are allowed up to 160hrs every 6 months for respite. It has to be scheduled in 4 to 8 hour blocks. I'm going to check into it especially for getting some house work done. Lots to sort out and pack up. I would also like to paint. No way to do THAT with a fall prone toddler underfoot, :haha: 

I gotta check out your part of Ireland soon. I will probably end up moving back to where I was raised eventually. For now being close to kiddos therapies is nice. We used to have to drive at least an hour to get to a proper store when I was a kid. A little farther than that for medical stuff. The driving was the worst part. And being near crazy in-laws :haha:


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## lilesMom

Yeah I thinking painting as well :-D
Could def be very handy.
Would feel weird but Def good.
I've often thought of asking my niece to babysit while I'm here
But she might be uncomfortable doing it
And I might be too watchful :-D


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## essie0828

I'm an overprotective mom to. I don't know how I will ever let DD go to school. :haha: I really do have separation anxiety when I'm not with her. When she was having her tubes put in her ears I paced like a psycho and basically ran to her in the recovery area. The nurse was trying to show me what room to go to but I heard her crying and blew past the nurse and into her room. The nurses in the room scattered when I got there. DH said I scared them and that I looked like a crazy person. :haha: Being a big gal, I probably did scare them but I didnt mean to. Just don't stand between me and my baby when she is cryin. Lol. And recently DD has learned to turn the locks on our interior doors. The lil turkey locked herself in my bedroom! I panicked and just broke the door down. Busted it beyond repair. DH was trying to tell me I could have unlocked it with a credit card. Nope! I'm not running all the way to my purse to get a card with her in my bedroom getting into God knows what. Looking back it may have been a little overkill. The door still ain't right :nope:


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## essie0828

Btw, I was reading up on your part of Ireland. Very very interesting! Read the legend behind the Blarney Stone and read up on peat bogs. I didn't know anything about peat being used as a fuel. Fascinating! I had seen the dark spots from Google earth and couldn't figure out what they were. Wikipedia helped :haha: The sea cliffs and peninsulas are beautiful. Lots of limestone just like here;) Although we are very much landlocked here in Ky. It takes 6 to 7 hrs driving to get to the nearest beach. Lots of cliffs and trees where I'm from, lots of oil wells to. That's what most of the men in our family did a generation ago. Work in oil fields drilling and pumping wells for oil and natural gas. Most of the forest has been protected and is a national park now. It's basically just too rugged to log anyway. It was a great and wild place to grow up, I learned a lot about nature from sitting in the forest just watching quietly. I miss the wild. :( We always complained growing up that there wasn't anything fun to do and now I find myself going back there just to hike for fun.


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## lilesMom

The light from phone is disturbing munchkin
Post tomorrow xxx


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## lilesMom

sorry i came on to do proper post on comp, 
but little man has just wopken up from nap early, 
he is seriously cutting down day naps lately.
not much spare time by day :)


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## essie0828

No problem. Short naps are something I understand. ;) DD hasn't been sleeping well at night, makes things rough.


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## lilesMom

Hey again :-D
Simon has been having shall fits again.
Prob comgo of being sick and think his meds might need increase
Doh.
Only small room for increase cos he.is nearly at the max 
How r ye keeping now xxx
Sorry had a hard time getting time to properly write last few days.


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## lilesMom

We go to bog every year.
We call the peat that we bring Home turf :-D
U can buy strips of cut peat, 
Its getting scarce now though.
We only get it cos my Bro knows the owner
They are limited in how much they cut
Its very cheap to buy but u need to mind it yourself.
Some years if weather is bad u don't get it even though u pay for it
Cos u can't get it to dry :-D
The bog is nice but hard work 
The air up there feels like seaside air for some strange reason :-D


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## lilesMom

Thought we were bad. 
An hour and a half to Sea side here :-D
A lot better than 6 hrs, u would def need to stay a few days.
How's hayley walking going 
Does she use a Kay walker at all? 
Dis she crawl or skip it.
I know our 2 aren't exact same but just curious :-D xxx
Hope all's well xxx
Munchkin still no where near crawling at 14 month's.
I know it's early but I'd love fir him to be able to get himself around to stuff
He really wants to but just can't 
His right arm is his biggest draw back.
Its very weak.
We r working on it though :-D
It has come on lots


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## lilesMom

Red river gorge is beautifull hon :-D


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## essie0828

Oh no. I hope Simon is doing better. It has to be hard on both of you when he's having fits :hugs: 
Hayley sort of skipped crawling and went straight to knee walking. As soon as she figured out how to get herself into a tall kneel off she went on her knees. Her arms are just now getting strong enough that she is able to support her body weight properly. We do lots of weight bearing exercises like putting her in quadruped (on hands and knees) and making her shift her weight from one arm to the other. Then we do the wheelbarrow where I hold up her feet and she holds her torso up with her arms. Simon probably won't be able to bear much weight with his right so he may need some type of elbow and wrist support. Can he kneel? Try putting him on his knees and making him "stand" up tall on his knees to reach at something. He may find it easier to crawl on knees only, like Hayley did. I swear she's as fast on her knees as most toddlers on their feet. Her walking is getting better and better. She will still try to knee walk when she's unsure about something but she's walking farther and faster holding my hand. She almost ran to my mom yesterday. I had to jog a bit to keep up with her and my mom cried like a baby :haha: Mom hadn't seen her in a couple weeks and it shocked her to see Hayley try to run. :cloud9: Her balance is still poor though. I have to stay in arms reach to catch her if she tumbles. Hayley did use a kaye walker for a few months and it helped loads with her transition to her feet. The walker and her braces we're a big help. Her ankles are so weak they buckle in so she has to have that support. Hayley wasnt very mobile at 14 months she was attempting to stand but needed lots of support. She could attempt steps if we held her up but she couldn't handle all her weight. How is Simons right leg strength? Can he support some weight on it? And how involved is his right arm? Is there paralysis or high tone or just generalized weakness? Oh and Hayleys OT and PT recommended joint compression for her. Ithelps with proprioreceptive feedback to the brain. Sorta tells the brain hey im here. Its simply gentle pressure on the joints as if they are baring weight. Like for his right elbow you would grasp his upper arm above the elbow and his arm just below the elbow and gently push both hands tword the joint to compress it slightly. Have your PT demonstrate it, I'm sure it will help. It's helped DD loads. I do her ankles, knees, hips, elbows and wrists every day. Gentle is the key. It can be done wrong and cause injury so It would be best to see it done as well as have the PT do it to you. It really feels rather nice.


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## essie0828

Wow. Is it really that wet in Ireland? How much annual rainfall do y'all get? So do you use turf as an alternative heat source? Most places here use electricity as a primary and then wood, gas or coal as a back up. My grandmother refuses to cook with electricity :haha: Says she can't get anything to come out right. I remember cutting wood for her cooking stove when I was a kid. It's a taste that can't be replicated on a gas stove. I miss the old ways sometimes.


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## essie0828

When I was a kid we would cut and haul lots of firewood out of the forests near the oil fields. Trees that they would knock down to build roads they would give to the oil field workers and their families. It was very hard work but we were allowed to sale what we cut for pocket money. Was a good lesson in work for both me and my brother. Plus it was fun bashing around in an old 4x4 truck collecting wood, going hunting and fishing. There's no better food ive ever found than what we brought out of the forests. Wild mushrooms and white tail deer. Mmmmmmm yummy! My grandma says I'm an old soul in a young body. Lol. I always loved to learn the old ways from her. They still raise most of their own food. The stuff you get in the stores here is of no comparison.


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## lilesMom

Thanks hon X
Sometimes it feels like progress is so slow but he is,getting stronger 
So that's good :-D
That's,great hayley is walking So well :-D
Delighted for ye xxx
Simon likes to kneel
His ankles tend to buckle too
I stand him with his,casts on for practise
He also has stander, he does an hour a day in 2 goes 
I must try get him to kneel to get at something
He buckles at waist too so with my help obvs 
We do joint compression.
Also get him to take weight of my Hand in his hand
His right hand couldn't take any weight until recently
Now it can take some :-D


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## lilesMom

We are starting him on new second epilepsy med
The one on its own isn't working fully.
Was hoping to avoid it but can't it seems


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## lilesMom

We do get Sun 
But also get a fair fwe rainy days :-D
We use oil fir,heating 
Use turf/peat to supplement. In our open fire
Electricity to cook
:-D
Not sure why such a mixture
Prob cos it's cheaper way :-D

Ur honeplace sounds lovely.
I've worked since I was 9
I've 40 nieces and nephews and I've minded most of them at some stage.
We never had lots ofmoney so we all worked and bought our own clothes and stuff
I think it's good for a person :-D


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## lilesMom

We r both on antibiotics this week.
Steroids for,me and antibiotic for Simon last week didn't work
Doc sent little,man to hosp to be checked on Monday
We weren't admitted thank God
Sent home,after tests


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## essie0828

Aww you guys have to be wore out. Sick and lil man having seizures, I hope you both feel better soon. 

40 nieces and nephews! Holy cow! That's a huge family. How many brothers and sisters do you have? If you don't mind me asking. I don't have any nieces and nephews :( My brother is 38 this yr and I keep telling him to get busy making me some:haha: He lives far away though, I'd rarely see them anyway I suppose. We always had to work growing up to buy extra things as well. My father left when I was about 10 and my mom raised us on her own. She had to drive 1.5 hrs one way into the city to work in a factory. She made decent money but we sure wasnt rich and we had to learn to keep up our home while she was away. We rarely saw her because of school and the shifts she worked. We also had to do a sport in school. She made sure we were too busy to get into trouble. Lol. My first taxpaying job was during the summers when I turned 13. That's the earliest kids can work on a farm here, well legally anyway. We worked in tobacco or processing vegetables at a farm facility. I always did odd jobs before then in addition to minding the home place, school, and basketball. I was always put to work with the boys. Lol i was bigger than most of them and worked harder so I never had any trouble. Always liked showing them up. ;) I never had any experience with kiddos until I had DD, talk about a shock. Lol. But I found over time the work as a mom is just as hard as putting in a full day in a field. More stressful for sure. And way more rewarding :D


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## lilesMom

We r starting to feel better now, thanks x

I've 11 older siblings. 
My parents had 6 boys and 6 girls.
I'm the youngest :-D
Plenty bub experience before hand here :-D
But it's different when it's ur own.
All responsibility is on u and u can't hand um back :-D
Yeah my first tax paying job was in a hotel kitchen at 15
I had to pretend to be 16 if asked I was told :-D
We worked so hard for pretty small money.
We did non paid overtime for weddings and stuff.
Totally exploited but I was happy enough at the time
Ur jobs sound hard! X

Well done to ur Mom
Not easy on ur own


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## essie0828

. That's incredible! Your family is huge compared to mine! Im the baby in my family to:haha: I had 4 cousins that were raised in the same area. We all grew up like brothers and sisters on the weekends and after school times. Mostly everyone gathering at my grandmas and running wild lol. I have one female cousin and we were pregnant at the same time. Her son is 11 weeks younger than Hayley and is newly diagnosed with epilepsy and developmental delay. Particularly speech delay. He has autistic traits as well but it's too early to tell. It's odd. The only 2 babies born into our family in 10 yrs and they have developmental delays or disabilities. We also had the same OB deliver our kids at the same hospital. It's odd enough that I'm going to go ahead with some genetic testing with Hayley. The CP doc offered it 6 months ago and I declined, upon speaking with another neurologist who assured me she didn't think Hayley had a syndrome or chromosome disorder. She said we would have noticed a regression and not the progression in development Hayley has shown with therapy. But it's a simple blood draw that could give us some new info so I think we're going to have a look. I'm booking her first MRI in late September early October with the genetic screen to be drawn at the same time. Then we see the CP doc with the results Oct 29. It's a long drive to see him and get the tests but they are the best ive found. I've been trying to design a classroom for DD. We really need to practice school. I want to do a multi function therapy/ classroom with handrails and things to help DD be in control of her own movement. Then I want to be able to incorporate 30 min blocks of therapy exercises. Like do 30 mins vocabulary and speech games then move into physical therapy exercises and what not. Ultimately leading up to a goal of 4 hrs a day of mommy home school/ therapy. I've ordered chalkboard paint and we are getting a 3ft x 6ft acrylic mirror cut to mount on one wall with a handrail to run just above it. Kind of like a ballet mirror. I've found a good website for homeschool and therapy items to stock up on. Now I just have to get the room cleaned out and painted, mount the mirror and rail then organize everything. HA! With a toddler underfoot :wacko: Hopefully a little investment will pay off for DD and her lil cousin. He can use the things and I can model the therapy I've learned in the last year to my cousin so she can help her lil man. I think I'm biting off more than i can chew but I need to work out some pent up emotion and what better way? Lol.


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## lilesMom

Well done hon. 
U will do great Xx
At the,mo we do therapy in sitting room 
I was only saying,yest,I'm gonna move,everything except his stander yo his room upstairs,and make a therapy room. He is so close to commando crawling 
He needs the space.
Are u gonna totally home school her or just for now while young 
Simon will be tested for clotting and family factors too
But they said wait till 3 or 4
I agreed to wait but wish I hadn't now
Thinking about ttc in a year or so
But would prefer test done first


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## lilesMom

Posted cos phone went,weird
I think ur right to test.
It does seem like,a bit of a big coincidence they both hve disabilities x
We had Mri done at 5 day's old :-D
Its good to hve concrete answers xxx
Hope,all's,well x
Goid luck with classroom building :-D Xx
Keep me posted on how it goes

Weird qs
Where does hayley sleep
Simon co sleeps
I tried to get him back into cot a little while ago
But he kept rolling into bars
On his left he can get back
But on his right depending on how he falls
He can get stuck, his hand is,too weak to push himself back out


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## Ramanie

Hi I have a son with Cerebral Palsy aged 28 years. At first the shock was immense. I had placenta previa and bleeding at 32week pregnancy. I had to have a cesarean section and the baby lost oxygen and heat resulting in becoming a special needs child. Therapy started from the begining. Lots of physiotherapy and medical care.
Now he is a big boy on a wheelchair. He can speak and understand. We also started Conductive Therapy Education where he was taught life skills. 
I understand the pain and the sorrow but when we persevere the results are very comforting. So please keep on learning about CP and give your child love and therapy.


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## lilesMom

Thanks ramanie Xx
Welcome


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## essie0828

Hi ramanie :hi: Thanks for the support dear. Conductive Therapy! I'm so glad you brought that up. I had ran upon it in some of my midnight Google travels, lol. It's not widely taught here in the States. The closest facility teaching Conductive Therapy educators is in Michigan and I think that's one of only a few nation wide. I have not met anyone with this degree in my medical travels with DD. I am really hoping to follow this form of education for DD. Lilesmom we were hoping to try to do public school but so far she's not ready. So in the meantime I want to teach her how school really goes. How to move about in a class room, how to get things and put them up, all the everyday skills needed to go to school. We have to figure out an augmented communication program for her to before she is ready. She communicates with gestures a lot. If she wants to go outside she will grab your hand and put it on the door knob. Most everything she wants at home goes like this. Her verbal communication is very delayed. Her mouth just wont work right for her to speak things. So in the meantime we are working on expanding her vocabulary with pictures and getting her fine motor skills in her hands ready to work with a computerized talker. One of those where she strings pictures together to say things. I've often thought about raising DD as a life school of Conductive Therapy. It's our jobs as moms to take all this therapy and figure out a way to use it to teach our kiddos basic life skills. 

Lilesmum we try to get DD to sleep in her crib now as she's strong enough to move off her face if she needs to. But she's still in our room and most nights she wakes and gets in our bed. We co slept with her forever hun. We had to, just like Simon she could get stuck and couldn't right herself so I waited until she could support her weight well. I'm thinking she was close to 2 before we were getting her to sleep full nights in her crib. So don't fret it if he's not ready. I know co sleeping with a squiggly baby isn't fun either. We never really slept well with DD in bed, always cautious of her movements and ours.


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## essie0828

That's great he's about to start commando crawling. It wasn't long after DD started moving like that when she learned to stand up some and to knee walk. The more he wants to get around the better. We used to get the dog to help DD. She wanted to chase after our little dog so bad, lol. It was great motivation. She would wiggle and kick until she figured out how to move to get the dog. Bless that little dog, she's been a great help. Just keep him moving, it might take some time but he's getting stronger from trying. We do our therapy stuff in the sitting room mostly to. Im thinking about taking it over for her class/ therapy room. We never have any guests except therapists and family anyway. Surely they won't mind visiting in a room with a bright classroom feel to it :haha: We need more space.


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## lilesMom

Thanks hon.
To be honest I love cuddling him most nts.
Some nts I don't get much sleep though
Those nts I think of the cot :-D
Oh wants our bed back 
It does get in the way of other things :-D
But I think Simon isn't ready. 
He gets stronger all the time so maybe next summer

I must look up conductive therapy, thanks 
All tips,gratefully accepted :-D
Simon has a good few words but he can go long patches and be quiet.
I did the Hanen communication course.
It has helped a bit.
He is saying lots more since.
I think his speech will be a bit delayed but I think and hope he will be ok
Sometimes things can click for them, 
Simon can spend ages learning something 
And then suddenly he has it.
Hope this happens fir hayley with speech xxx
I'm sure with all ur help it will xxx


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## essie0828

Would they still offer you the genetics testing if you asked? It's something I had to think on then go back to. After 2 second trimester miscarriages and the odd coincidence of my cousins baby delivered by the same doc being disabled....I just want to know. We have had limited testing done on the two miscarried but nothing was found. I think that Hayley will be the same. My cousins pregnancy was complicated, my delivery was complicated. We both have other risk factors but I think we will have the test to be sure. If you are thinking on it just ask about it at his next appointment. If your thinking on ttc it might be useful. Some tests take a longtime I have heard. I dunno how it would be over there.


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## essie0828

Haha! Nothing like a baby in bed to kill the mood huh?:haha: I understand that!


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## essie0828

My understanding of Conductive Therapy is that it's basically focused on life skills. Learning to do every day activities. Like bathing, dressing, feeding, communication, school time activities, potty training, learning an occupation, every skill needed for a fulfilled life. Then deconstructing these skills into small baby steps that we teach kiddo. Like feeding, pottying, sitting in class....well first we must be able to sit in a chair to do all these. So we focus on chair sitting until we can try sitting on a potty or sitting up at the table or sitting up at a desk. It has to be very personalized to the childs abilities and disabilities, providing support with aids as needed. It really incorporates every tiny aspect of a lifestyle.


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## lilesMom

I think we posted at same time earlier Xx
Um.. We already kinda do conductive therapy in a way so
Eveythung in baby,steps and everything in order 
Still will,read up thanks Xx

I'm gonna split our,therapy time between the 2 rooms
More variety for both of us 
Might get more time out of him that way.
I'm sure ur visitors wouldn't mind hon.
If they did then they would be people I wouldn't care! Too much about their opinion :-D
Hows yr classroom planning coming.

He is close to commando crawling but no clue how long yet
I'm mean and put stuff just outta reach :-D
But he usually rolls to um
But,any moving is,great,like u say
All strengthen and motivates


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## lilesMom

I'm waking him with phone
Must go xxx


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## essie0828

Aww poor little guy, hope y'all get some rest, post at anytime your free. Definitely don't wake him to reply to me. I turn my phone off at nap time. Girl you gotta rest;) 

That's exactly right about Conductive Therapy. Here the Occupational Therapists sorta teach it to parents and patients. We've had a brilliant OT teaching us at the rehab hospital for the last year. Sadly we are loosing him but he's moving up to a better position somewhere. We're loosing DDs great speech therapist there as well. Bummer:(. They are both taking new positions. At the rehab hospital I get to watch them teach from each style of therapy then we model that at home with doing common tasks. Like light switches! Recently taught DD how to work the switches properly and oh my! I've yet to use the toilet without her turning the light off while I'm in there :haha: But now she will turn the light off and leave it off when we go out of the bathroom. Well with much pleading from me to quit flicking the switch on and off. Finally she gets it and leaves it alone after she's played with it a bit. But hey thats a life skill. A tiny one but something useful none the less;)


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## essie0828

It sucks having to make them work to get stuff sometimes. I always want to give in to DD and let her do the easy way. But she doesn't learn as well that way I have to keep reminding myself. We still spoil her terribly.


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## lilesMom

I chanced it again but hisbreathing is,getting lighter.I'd I go u know why :-D


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## lilesMom

That's funny.
I've just started using his hands to turn on and off,the,lights
I figure its very achievable thing for him yo learn to do 
He likes the immediate reaction of the light turning on or off.plus it is a life skill


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## lilesMom

We just lost our lovely,brilliant slt,as well
Dint even know who,we r getting to replace her a month later
Sucky
Espeacially when our los like them


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## essie0828

I don't know who will be replacing our SLP or OT. :( I hope they are as good at their job as the 2 we're loosing. Oh and one of our PTs is pregnant. Like very round pregnant. At least 5to 6 months along, so she's gonna be leaving soon. That's every therapist kiddo has done well with gone in one big poof. I think she will adjust well but I would be lying if I said I wasn't a little worried. Their last day will be September 5th.


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## essie0828

We are also restructuring her at home therapies to include OT. We were just doing speech and pt at home before now. We will meet the new therapist and someone from the school district sept 3.


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## Ramanie

Hi 
essie0828

You are doing great. Keep it up.. Its a difficult journey but has great rewards. I cannot believe that my son is so improved. I give great thanks for Conductive Therapy.


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## essie0828

Thank you Ramanie :) It's only right to do your best for your babies, that's what us moms are for. If you don't mind me asking, what type of CP does your son have. You mentioned he was in a wheel chair. Are his legs mostly involved?


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## essie0828

lilesMom said:


> That's funny.
> I've just started using his hands to turn on and off,the,lights
> I figure its very achievable thing for him yo learn to do
> He likes the immediate reaction of the light turning on or off.plus it is a life skill

It's really fun to watch em play with the switches. It's an excellent tool. I use it now to get her to listen to me. Like "Hayley STOP flicking the light, leave it off." Or to mix it up id tell her to leave it on. She's learned all three of those words, stop, off and on from light switches. :haha:


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## essie0828

Oh and not to mention she got tons of standing practice from trying to reach them! Love it.


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## Ramanie

Hi essie0828,

I do not know what type of CP as he is 28 yrs and therefore at that time exposure for special need education was not so advanced like now. He cannot walk but we try to make him walk on parallel bars with the aid of splinters. He can talk a little and very intelligent. He also was given life skills at the conductive therapy so he can fed himself but needs assistance with dressing himself. As I said before we had to persevere as the sooner you start therapy (i.e Physiotherapy) the better the progress. You are doing great as you are trying to find the best method for your baby. Do not loose hope as the journey will be rewarded. They say in CP the damage is already done and that they can only improove from there with our help.


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## lilesMom

Essie hope u get fab,replacement therapists xxx
We r gonna hve a meeting soon to see if Simon should partly switch to local therapy place.
The one he is at has more stuff but less time for us I think
Not sure which is best

We do mostly pt and slt at home too.
With teensy bits of ot and play therapy 
I'm a huge believer in play therapy
Easier on me and s :-D
I think 99 % of things can be turned into a game

Simon,made it across the sitting room fully today.
Wriggling and rolling but he still did it :-D


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## happybeany

Just hopping in to say hellooo and i have a 3 year old with cerebral palsy :hugs:


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## happybeany

This is Harrison.. Hes now 3 years and we hot our diagnosis when he was 18months. He was was delayed in all his milestones and i was concerned when he was pulling to stand, but only cruising and tip toeing whilst doing it. The hospital took me any my concerns seriously, and we eventually had the MRI which confirmed his cerebral palsy.

He has hypertonic spas.tic diplegic cp, only really affecting his legs.. We used to have piedros and insoles to try and get him to put his heels down but it wasn't helping much at all. We now use afos even though they don't seem to be doing much good for his feet! His feet seem to be collapsing inwards (over pronation?) BUT his heels are down most of the time unless hes absolutely shattered and he forgets to concentrate on walking. H can walk without assistance, but falls often and does hurt himself :nope: and we have a maclaren major on loan from the wheelchair service for when he can't walk. 

H has had speech therapy to help with his understanding and identifying, but we are waiting for more to help the words that he says be identifiable to people outside the family. At the minute, its really hard to make out what he is actually trying to say a lot of the time. He can use PECS but he doesn't like to! 

Overall, hes about 6-12 months behind in different areas.... But it just means i get to keep my baby longer :baby: Hes so adorable and just the sweetest little man in the whole world :cloud9: i love him to bits!
 



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## lilesMom

Hey welcome Xx
He is gorgeous hon
Lovelysmiley guy Xx
I'm not sure if u hve read thread.
My lil guy is Simon
Had a stroke at birth
Diagnosed at 5 day's old
He has right sided hemeplegia, epilepsy nd reflux 
But is the best little,man ever :-D
He is 15 months old yesterday :-D


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## happybeany

Heya! Its great to meet other cp mommies :) happy 15mo birthday simon!! :cloud9: hows he doing developmentally?

We aren't sure 100% what caused my LO cp but we think its that i had pre-eclampsia. I still think there's something that the doctors aren't telling us as to why he has it...There was a lot of mix up with my notes when i was pregnant. xx


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## lilesMom

I thunk my guys stroke had to do with the birth
They,delayed a,lot in getting him,out 
Cp seems to go hand in hand with bad births And or bad docs.
Simon is,better than initial pic 
But he can't crawl stand or walk yet.
Can roll and sit.
Has good trunk control and excellent head control.
Been warned it will most likely affect his speech
But so far so good with that.
He does hve some feeding issues
But his,swallow seems ok
He,really is the happiest little guy though
I'm lucky to hve him :-D


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## lilesMom

Essie how ye,doin hon? 

Back to physio and ot in morn
August always goes quiet fir their hols
Liked the,break


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## essie0828

Hi ladies:hi:

Welcome happybeany! Harrison's a handsome little guy. Look what eyelashes and beautiful smile! My little girl walks on toes to. She's good in AFOs but cannot put her heels down unless she tries very hard. 

Yay for Simon making it across the sitting room! Go buddy go!


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## essie0828

Everything is going pretty good here. We meet with a Dinovox representative in a few weeks to see about getting DD a "talker". It's a computerized pecs system. DD is a bit like Harrison though, she can use pecs but doesn't prefer it. I hope she takes to it because it's like her tablet. Her fine motor skills in her hands are just now getting good enough to manipulate the screen so I expect it will take quite a bit of practice for her.


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## lilesMom

Munchkin awake the,scut :-D
Talker sounds great xxx
Forgive my ignorance but what's pecs?


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## lilesMom

Physio and ot were delighted with his progress
They said that I was doing great work :-D
They r ordering his afo s.
So excited 
She said she doesn't expect him to walk before 2
They don't use a walker she said
She thought it would rush him before ready

Hope all's well with ye xxx


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## happybeany

Harrison was just about two when he started walking. I cried so hard! I couldn't believe he started.. Our OT and PT didnt think walker would help h either.. He was really bad with balance and tended to just launch himself forward even testing the walkers out. He figured it out okay in the end... Although he still falls lots.

I sometimes panic that pre school will look at all his bruises and bangs, and call social services....hes so fearless and he throws himself around lol! I guess he must be like that when we leave him there too. 

What are your kids like with other people? H is overly friendly, no stranger danger and it terrifies the life out of me :o


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## happybeany

Ooh pecs are pretty good if the little one takes to it.. Its a picture exchange communication system .. So they hand you or point to a picture in order to communicate what they want or need. It really got Harrison to understand asking for things, understand that when he asked and told us what he needed we would listen and respond to him :happydance:


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## lilesMom

I was even thinking today whenhe finally takes a step up prob frighten him Il bawl so hard :-D
Simon tends to throw himself now from sitting 
He finds it funny and it gets him where he wants to go
So I imagine walking may be the same
It was first day she started talking a bit about walking
So I'm taking it as a good sign :-D

Simon either loves u or has no time for u
He makes his mind up pretty fast about that too :-D
He loves young blond girls. He actually flirts!!!
He isn't the biggest fan of strangers. 
But doesn't cry from them
He just gets really quiet
He is still a bit young to know how he will be with people yet 
He is sociable when he wants to be though :-D

Ah, pecs sounds,very usefull :-D

Love to all xxx


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## essie0828

Hi ladies:hi: 

Sorry it has took me forever to get back in here. DD has an ear infection and we have had a lot of visitors. 

It sounds like Simon is doing really well, WTG mom! Hayley was almost 2 before she started trying to walk as well. He will get there, it just takes some extra figuring out for CP kiddos I think. The throwing himself around and giggling is too cute. He's happy to move himself, that's great! 

DD likes almost everyone as long as I'm where she can see me. She will cry sometimes if people she has never seen get too close. She loves her therapists most of the time and will stay with one of them for a few min without me. Sometimes she won't let them pick her up though. She will wiggle away and reach for me. She loves watching little boys race around. The faster they run the more she laughs. And she has a cute little boyfriend at the rehab hospital, he wears afos and glasses and they always stare at each other. He checks out her braces and she checks out his. :) They are both mostly nonverbal and it's neat to see their gestures.


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## essie0828

Had the First Steps (Early Intervention) people here today with someone from the school system, they went over DDs 5 level assessment and discussed preschool options. I'm pretty bummed out. :( She has made progress but is still very behind. I've got these reports laying downstairs and I wont even read em. Blah. I'll get to em eventually. I'm in the process of rescheduling every one of our therapists but 1, a by weekly speech therapist. Everyone else(5 therapists) need new times. Holy crap! Most want early morning and we have an hour drive to get there. Kiddo is Not a morning person. She's usually not asleep until around 1am. I'm trying to dial back her bedtime but no matter when I do her bath and bedtime routine she fights sleep till midnight. :wacko: If I have to drag her out of bed very early she will be a diva. Fussing and crying at the drop of a hat. This is going to be a fun adjustment. Btw DDs ear was really gross yesterday. The worst I've seen it, there was foul crud everywhere in her little ear. Took lots of gentle cleaning and antibiotic drops. Poor baby bolts when she sees that little bottle of drops. Hates them! And I have to wrestle and pin her to put them in her ear. It's a fight 3 times a day. I dread it as much as she does.


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## lilesMom

Oh no essie
Poor hayley gets a lot if trouble from her ear. Hugs 
S gets cranky for morn appointment too
He sometimes sleeps till 11
depends how much he did the day before and if he slept properly aat nights.
I had my physio asking me did I know there was a little bit less with Simon
What a horrible way to put it
Plus its too early to judge how things will yo for Simon
He is really quick to pick things up with me so....
Its hard yo hear or read stuff like that Xx
I focus on helping as do u xxx


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## essie0828

Wow. That is a terrible way to put it. Hope that guy/gal bites their tounge really hard for saying that. He's not less, he's more. More opportunity for everyone around him to learn a thing or two. Ugh. People are stupid. On the days we get reports I always get bummed out. Seeing her condition in black and white hurts. 

Ha! Glad to hear DD isn't the only late sleeper. Funny that Simon gets cranky then to. :haha: DD was a diva in speech therapy today. We met our new/ fill in speech therapist. I'm not real impressed with him so far. He's monotone and speaks too quietly. Hayley responds well to very animated people. I'm gonna miss Holly :( she could really get kiddo to work at talking. Met our new OT and I think she will be good but its a 9am appointment.


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## essie0828

I have finally made myself dig into these reports and have found there's good in with the bad. As always in life ;) DDs ranking between 24 and 27 months in receptive language. That's almost age appropriate. She just turned 30 months a week ago. Her gross motor skills are at 15 months :( Just learning to walk basically and kinda stuck there. She has lots of work to do there. Her cognitive abilities are between 15 and 19 months. That's a tough one to swallow. But she has made a big improvement in all areas. For that I'm thankful and proud. Her Social Emotional skills are age appropriate at 30 months. She's always been age appropriate in that area. She's a charmer if she knows you. Everyone falls in love with her after a while. :cloud9: Her Self Help scores were 18 to 24 months. Her oral motor skills and feeding were in the 18 month range. She has lots of work to do in that area as well. Now to develop a plan to strengthen her motor skills so we can work at the others. I think her lack of movement hinders her development in other areas.


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## lilesMom

I was just looking at my lil sleeping beauty,thinking the,same essie
He is soo much more 
So much love, happiness and laughter
He overcome more in his 15 months than she has prob in her life :-D
And is still smiling :-D


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## lilesMom

Aw hayley is doing just greats xxx
They can't really be at top level cos thru hve stuff to work around
Sounds like ye both working hard xxx
Yucky 9 appointment xxx
Hope slt us just shy and improves

I coloured rice and made edible paint this eve,
Looking forward to tomorrow
Messy fun :-D
My bday Sat, we r heading to a pet farm :-D
Love to all.


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## lilesMom

U try respite yet? 
How r things with dh Xx


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## essie0828

Thanks hun :hugs: Happy Birthday! Hope y'all have a great time. Pet farms are really fun. DD loves feeding goats and ducks. Watching S will be a wonderful birthday present, i bet he will love it. How did you color rice? Might try that one with DD. Hope y'all had a fun messy day! DH and I are going to make another go at this living together thing. He's doing better and we're giving each other space instead of arguing all the time. I guess time will tell. It would be a bad change for DD right now with everything coming up. I just bite my lip and go on :haha:


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## essie0828

Haven't tried the respite yet. DH has been around to help some and I haven't needed it yet. Plus I'm chicken to call:haha:


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## lilesMom

Simon is sick again argh
So tiring
We had a lovely day at petfarm though.
Best bday in ages.
To colour rice, just mix food colour with water.
Add to rice in a,tray 
Let for ages yo dry
Simon loves it
I put stuff in like rubber ducks, cup or raake :-D

Hope it works out with dh hon Xx
We have too much space here, we do hardly nothing together.
My bday was lovely cos for once we were wall togetheraand happy 
Kinda rare :-D


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## essie0828

Oh no. I hope lil man feels better soon. :hugs: Glad you had a nice birthday! Crappy that your OH is distant most of the time. It makes everything harder. Especially when the lil ones are sick. Right now I prefer distance to the way we were. We couldn't even be in the same room without wanting to throttle one another. Meeting with the Dynavox rep today. Kinda nervous about it. These "talkers" are really expensive and it's hard to get insurance to help pay. Kiddo has to demonstrate that she can actually use it and we have to get tons of referrals from therapists and docs. I'm worried she will be slow in catching on to it and we won't get any help in buying it. Some of the models are over $10,000 USD! I definitely don't have that kind of money on hand. I hope we get some assistance. I know DD wants a voice. She tries so hard to talk but just cant manage the sounds. She will move her mouth like she's talking but no sound comes out. I keep thinking that this may be a way to give her a voice till she can manage her own. I just hope the Dynavox guys agree.


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## essie0828

We get a Dynavox to trial for a month! And if DD takes to it we shouldn't have any trouble getting help from insurance. :happydance: The rep said that kiddos with CP are almost always approved :happydance: She used the demo model to say "thats cool" today:cloud9:


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## lilesMom

Wow that's,brilliant hon
Congrats Xx
Hurray for ha.yley
My rice went,mouldy, don't think I dried it fast enough
Doh


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## essie0828

Lol. I let a bunch of waterbeads spoil in DDs water table. Yuck! Smelly mess :p I'm getting food color today to try the rice. Think I'll dry it under a fan thanks to your experience :haha: It's been soggy here lately. Humid, hot and wet. Blah, that's KY summers for ya. How's lil man? Feeling any better? 

Well I'm starting to feel a little intimidated about this whole Dynavox thing. I feel like I need to go to a class to learn how to use it :dohh: The rep was only here about 45 min and between DD running amuck and filling out forms I can barely remember anything he said. There's tons of info on their website I need to read through about setup and teaching pathways. Whew! My head is spinning.


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## essie0828

https://www.powerfulmothering.com/how-to-make-color-rice-for-sensory-play/

Found this website for coloring rice. They use 1tbls of vinegar + 1 cup rice + as much food color as needed to get the shade you want. Swish it all up in a ziplock bag and set out to dry. There was something on there about how to neutralize the vinegar smell but I just glanced it. Think I'll try this today. I'll let you know how it dries, website said it only takes an hour to dry.


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## essie0828

15ml vinegar + 250ml rice + food color to desired shade

I forget sometimes that not everyone uses American Standard measure :dohh:


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## essie0828

Ahh, to neutralize the vinegar smell this gal uses a drop of essential oils. She used peppermint and tea tree. She also wrote that her rice has kept for 7 months! The vinegar must help it keep.


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## lilesMom

I googled it too :-D
I made a mistakes making mine
Least I know now fir round 2 
S much better but both still abit crappy

Hope u figure out how to use it easily enough hon Xx
U hve,enough on ur plate Xx
But um sure it will be well worth the effort xxx


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## essie0828

How you guys feeling? Hopefully better. DH and DD are both sniffling and snoring, I think we're about to go through a cold. DD didn't sleep well, her ear looks great but now she's congested at night. There's a respiratory virus going round right now, our therapists have commented on the excess snot they've encountered lately :haha: 

My rice came out pretty good except the smell. It still smells like vinegar slightly, i didn't use an oil. Probably going to try another batch with lemon or orange oils. The color is very vibrant though, i didn't expect that. I used neon gel food colors trying to get bright shades but expected to be dissapointed. I wasn't. Thank you so much for the idea! Planning a few small world sensory boxes for DD now. Gonna do a farm one first :) Green and brown rice as the ground and I have little critters and a barn to put in. Put little black beans in the pasture as poops. :haha: I may go break up some little sticks and do a fence and a few trees :haha: its great fun to make this stuff.


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## lilesMom

Aw that sounds lovely.
Farm is a great idea x
We r much better thanks 
My stupid thyroid is low again I'd say
Haslf my eye brows came out yest
They look awfull
Our hospital that does the testing of the bloods has been out of action for last 3 week's
I think I nmight up my med myself cos thru hve no idea when blood testing is back online 

Hope ur colds don't cone to much
We r just after 2 yucky bugs
Snot was not scarce in our house :-D


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## essie0828

Aww hun I feel ya on the thyroid issues. I had a period lasting 5 weeks because my thyroid was really low. Went ages without one after the MC and then thought it would never stop. Had a 2 week break and started again :wacko: My hair is a disaster. It's coming out in clumps almost and whats growing back is white! Whew I'm too young to be getting this many white hairs!


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## essie0828

My rice turned out pretty good. Cant smell the vinegar much anymore. I did rainbow pasta today, just cooked up some different shaped noodles and rinsed. Then added 20 drops of color to each Ziploc bag and 30ml water. Mixed noodles up in there and let em set a few min then took em out and rinsed em again before mixing them all up on a tray. DD went nuts with em! :haha:


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## lilesMom

I hve loads of,grey hairs 
Never linked,the two :-D
Stupid,thyroid. 
I hve,my period got a week already 
Really stopy starty
Annoying. I'm usually so predictable 

Did Dd eat or play with pasta or both? Xx
Sounds fun :-D


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## Ramanie

Hi everyone,

Thought I will share this with you. My son (RU) with CP has his 28th birthday on monday the 15th of Sept. He is been given a party today at his home as it is a saturday. He is so excited when we to told him and counting the sleeps. He is so adorable and has the most charming smile that all fall in love with him at first time itself. Hope we will make this day special for him as he is very special with special needs.:hugs:


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## lilesMom

Hve s lovely party ramanie xxx
Sounds like a lovely plan x


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## Ramanie

Hi lilesMom,
Thank you. Yes he had a great time.


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## essie0828

Hope you had a lovely day Ramanie. Hope your son has a great birthday :)


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## lilesMom

Glad he had a great day x


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## Ramanie

Thank you all. Yes he had a great birthday. So Happy and thrilled with the gifts etc. His birthday is today but he was OK to have his party last Saturday. These special needs children are so very special.:flower


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## lilesMom

Yup they def are Xx


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## essie0828

Hi there ladies! 

How's everyone been? How are those beautiful kiddos? 

We've started looking into preschool here and I'm not very impressed. I'm worried actually. 17 kids per class with one certified teacher, one certified teachers aid and a para educator. All kids are mixed in, normal developing as well as special needs. I don't like those odds. DD is a fall risk, big time, and her protective reflexes are terrible. Im so disappointed. I was really hoping that DD would get an aid that only has a couple kiddos to look after or something. I would be so much more comfortable with that if she has to be in a mixed environment. She needs to be in a classroom environment with other kids, I know she does. She lights up and wants to do what they do. I know she will learn more but I cant worry about her safety. I have to Know thats she's safe before I will leave her at school. 3 adults to 17 kids :nope: with some being special needs with feeding and choking risks. It just doesn't seem safe.


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## lilesMom

Hey hon
So it's kind of 4 kids to one person? 
Doesn't seem awfull but like u say it depends on the needs of the kids
In dreading school laterfir munchkin cos I don't like him out of my sight xxx
Hugs


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## essie0828

17 is their smallest class, 20 is the norm so with 3 adults it would be closer to 6 or 7. I know I couldn't handle Hayley and 5 other kids, but that's me. Mabey in a classroom environment it would be different but I am still quite concerned. And above all else, im like you lilesmom, I don't want her outta my sight. Poor thing has a bug right now. Fever and pale as a ghost :(. Doc gave her antibiotics and steroids to clear her nose, its totally blocked.


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## lilesMom

Hope she gets better fast hon
So horrible yo see um sick
Tiring too xxx
Busy few days here
Appointments back with a vengeance :-D
Fitted for afo yest
So should hve um in 3 weeks
Yaay Xx


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## essie0828

Same here with appointments. Seems like it gets really crazy in the fall. My lil cousin that's 11weeks younger than Hayley has been diagnosed as having a stroke. His MRI came back with evidence of an old stroke :(. His mom meets with the neurologist in a cpl weeks. We don't know if they will change his diagnosis to CP or not. They are covered up in appointments as well, wonder why fall is so busy?


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## essie0828

I think u will love the afos! They take a little getting used to but he will like the new support. DD is getting refitted on the 8th of Oct. for a new set of afos as well :haha: She's grown soo much! Wearing a 5T in clothes now. Whew. We've been watching an animated show called "Jakers! The Adventures of Piggly Winks". Have you ever seen it? It's popular here and has lots of great reviews. It's set in Ireland :) DD loves it and I do to, for a kids show it's darling.


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## lilesMom

I'm looking forward to his afo :-D
Exciting. Step closer to walking
Excuse the pun :-D
I'm not sure why but munchkin has no interest in telly 
I've tried a good few cartoons at different times
But he won't watch it
Loves music, on radio or telly
But no interest in any programs
I don't know that one, I'm out of touch with kids shows at d.no


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## lilesMom

essie0828 said:


> Same here with appointments. Seems like it gets really crazy in the fall. My lil cousin that's 11weeks younger than Hayley has been diagnosed as having a stroke. His MRI came back with evidence of an old stroke :(. His mom meets with the neurologist in a cpl weeks. We don't know if they will change his diagnosis to CP or not. They are covered up in appointments as well, wonder why fall is so busy?

August gets really quiet cos of summer hols
So then end of Sep and Oct they play catch up
Least they hve diagnosis nowe at last xxx


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## essie0828

Ya know, I didn't even think about the summer holidays. That makes good sense. DDs feeling better today, she's sleeping better and starting to eat solids again. The antibiotics have gave her diarrhea though. I'm buried in laundry because of it. And she pooped in my bed. Lol. She can't help it though, poor baby girl. She climbed/ fell out of her crib for the first time today. Almost gave me a heart attack but she was fine. I was right there beside her and watched the whole thing and after I figured out she was fine I was actually impressed with her protective reflexes. She curled her head to her chest to keep from bumping it and landed on her back in a pile of blankets. She didn't even whimper and didn't have a mark. It's almost time to switch her crib to a toddler bed I think. That's going to be an adventure. How's little man been doing? Hope y'all are well. Piggly Winks is great, lol! I'm a kids show nut. I love animated shows and this one reminds me of my Irish friends ;) But honestly it has a great story line, teaches good life lessons the old school way. Hard work, honesty, manners, and its very funny. I adore the accents. The main character says, "Jakers!" when hes excited. Is that something you actually hear over there? Do people say that a lot? Lol, forgive my ignorance and curiosity.


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## lilesMom

Go hayley, climbing and all
Well done girlie Xx

Laughing at jakers
We don't say it much really.
Although it could be heard occasionally :-D
Mostly kinda jokey though.
Another one u might find funny along sane lines is janey mc
Means same as jakers
No idea,as to origin though. 

S is good.
In great form.
Singing and babbling all day
Still no crawling but we will get there
I'd love for his sake to get him more mobile
But aall in good time :-D

I'm glad hayley feeling better x
Silly antibiotics, probiotic yoghurt,helps munchkin after um Xx


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## essie0828

Ha! Thanks! I was so curious about the whole "Jakers" thing, :haha: I'd thought about asking for a while but was a little afraid. I was hoping it wasn't something offensive :haha: 

Aww that's great he's babbling so much. DD still isn't talking much. She's following more requests but not much new verbally. I bet after his afos and some standing practice with them he will start wanting to walk. It may be easier for him insted of using his arm. I hope he takes to them straight away. Can he stand with assistance? With you holding his hips or hands? I think you said he has a stander correct? How's he doing in there lately? 

When we went to see the doc at the weekend clinic they kinda scared me talking about DD needing to see an endocrine doc. I really haven't processed it but called her regular pediatrician and scheduled an appointment to talk about a referral and why is there concern. The weekend clinic doc mentioned that Hayley has a lot of dark hair on her body. And she does! At birth she was covered in hair on her body. It was quite fine and light colored and some indeed fell out so we just thought she's gonna be hairy like her dad. She has very dark full eyebrows. So does her dad. She has a bit of dark hair above her lip and some on the tops of her hands. Its very fine and to notice you have to be in good light. She also has keratosis pilaris, ( probably misspelled that) on her arms and legs. It makes her skin feel rough. Her dad and I have this as well although it was more pronounced when we were young. The doc seemed to think Hayleys skin and hair condition could be indicative of a pituitary issue. My mom thinks its BS and says me and my brother were the same. Her growth has really sped up and she's literally as tall as most 5yr olds. Shes gained a little weight and is about 17-18 kg. I hope this is just a precaution being taken by a young doc, but its still very worrisome.


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## lilesMom

Hope it's just docs being cautious hon
Its great they r checking but some people just hve more hair than others
3 days in a row months back my munchkin was checked for swallow, then heart then eeg
Swallow and heart both turned out fine
Was just precaution
I think they r extra watchful of our lil ones
Which is no bad thing
Hugs honey xxx


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## lilesMom

S is great in stander 
He will stand with a lot of support from me
His hips need it but less so lately
I think it's habit from stander
With afo we will get half stander too
And alternate the two


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## essie0828

Half stander? I haven't seen one of those I don't think. Hayley still has to have support to stand most of the time. She leans on everything for balance. He will get stronger after the afos. DD gained strength all over in the yr we've had hers. I'm sure all the PT played a part but the foundation was the stability from the afos. Getting him used to them may be a little rough but it don't last long. They will tell you to put them on an hour and then check his feet for red marks. If the red doesn't fade in 10 min then there's a fit issue. We had a fair few refittings in the beginning. Have you found a place for socks? Lol, odd question, but we had a terrible time finding seamless socks. I order them online now, nothing in stores in the area.


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## lilesMom

sorry i got no notification of ur post essie
came on to see how u were cos hadnt heard from u xx
bit mad here, 
s still having fits, 
new plan to up meds again, will take another 6 weeks
was a bit peed off but he is gettin better so im ok again

did u get ur endocrine app or will it take ages?
hows hayley? xx

how u doin xx

no afos yet but hoepfully soon, 
i read leggings are good for afo 
had read about the socks too, 
i better get looking :)


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## lilesMom

oh and a half stander is just the feet and ankles
he would be up to a little table in it :)


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## essie0828

Hi hon. No worries about the post, it's been crazy here as well. DD narrowly avoided hospitalization twice with this bug she's had. For 3 weeks she's been fighting something, running fevers, missing therapy, being very tired and not eating or drinking enough. She's just starting to show improvement in the last 2 days.

That's terrible the little guy is seizing again. :( So do you have to up.his meds gradually over the 6 weeks? Hope he's still improving and the seizures stop. The half stander sounds interesting, so he basically stands at a little table with his legs braced in from foot to calf? That will be excellent for building strength in his hips, back, hamstrings, tushie and thighs. Bouncing is great. Hayley loved to bounce with me holding her braces stable. She just sorta stood in one place and bent her knees and bounced to music or tv. With the afos the socks, lol, I had a time finding something that didn't leave seam marks on DD. Stockings didn't provide enough cushion and the braces rubbed her feet through them. Most regular socks have a heel stitched in, those don't work sometimes. And getting a long length in order to fold the socks over the afo at the top was a nightmare. Smart Knit seamless sensitivity socks are the best I've found. They sale on the internet and in some medical supply places. Can't find em in stores in my area at all :(and I hate waiting on shipping. Leggings? What type of leggings? Cotton, over the toe, thigh high? I've been looking for good leggings for dd that are cotton blend and go to her waistline. Like pantyhose but cotton blend.....does that make sense? Lol. I find footless ones all the time that would be perfect if they only had footies.


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## lilesMom

Oh no
Poor hayley and poor u xxx
Glad she is starting to improve xxx
Hugs
Happened Simon a,little while back
He was sick for most of 5 weeks
Had a little break in the middle.
Thought he would never shake the bloody bug
But he did eventually
Hope hayley is coming out of it now Xx

S loves to kneel on my lap and bounce
He seems to know instinctively what strengthens him
Ckever poppet :-D
We started the New med 8 week's ago
Bern increasing every 2 week's to get to current dose
It isn't enough so 6 moreweeks slowly increas
Kinda frustrating 
It also makes him a bit sicky. Each time
He is just getting used yo it And it's raise time again
Sucks but we will get there :-D

Um socks... . Doh
Leggings still need socks :-D
Il see what recommendations fitting person has
She said we will talk shoes on the day
Roll on afo :-D
He already has casts so I'm hoping adjusting Might not be terrible


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## essie0828

I forgot about S having casts. He will likely be used to the weight of something on his legs then. DD took a while to adjust to them, it's like her legs were lead for a bit. 

Thanks hun. I hope she is through with this bug to. It's made her so weak. We've went backwards with feeding, she's not eating many solids at all. She's refusing to walk most of the time and will either cry or cling to me to the point I can't pry her off. It feels like we've went backwards. She has started with a new word, "fo fo" for phone. It's a whole new sound for her, she couldn't do f sound before. :happydance: I can't wait till she's back to herself.


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## essie0828

Ugh, it has to suck dealing with the epilepsy meds. My cousin is going through the same thing with her little boy. He has absence seizures, like he's daydreaming but you can't snap him out of it. Now his hands have started to twitch and his eyes roll where he used to have no movement during them. We are afraid they are getting worse. I hope S adjusts to his soon and they don't make him sick anymore. It's terrible to help one thing you have to upset another isn't it? Whats S going to be for Halloween? Do you guys celebrate it? What's usually you favorite things to do on Halloween? We're going to be on the road with DD going to CCH for CP clinic, then doing a trick or treat basically at homes of family then we set up out front to give out treats in our neighborhood. I still haven't picked her costume! I've refused to shop with her while she's sick, DH has been helping with necessities but we just put off the costume. I want to stay busy as I can. We should be bringing home a new baby if I hadn't miscarried. :( Blah. Gotta shake it off and try to preserve the fun for DD though. Glad to have something to focus on.


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## lilesMom

Xx hon
Sorry I couldn't answer earlier.
S woke up while o was reading it last night
Due dates suck. Hugs honey Xx
Thank God,for,hayley and Simon Xx
I'd be lost,without my,Lil squish, 
Handful and,all that,he,is :-D
Sorry ur sad xxx
Hurray for Halloween distraction 
We won't to much, oh works until 10 at night so won't be here
S,and,me r goin to charity party my Bro organised 
But nit for long cos it's too late for munchkin


----------



## lilesMom

If,the,length aand,frequency of,the seizures,haven't changed 
They,hopefully just a little changed aand not worse
Hope,they,get sorted soon Xx


----------



## lilesMom

S is refusing,drinks cos,new,med makes him pukey
Drinks r so,light they don't stay down and he knows it
Hve been milking up his food and giving him drinks at night 
Feels like,backwards too
But it's,temporary for them both Xx
Just saying I know the feeling
It constantly feels backwards and forwards here with eating and drinking xxx


----------



## essie0828

Hi there! :hi: 

How's Simon doing? Hope hes eating better. Hayley is still not eating many solids but she's keeping up with her drinking. She's feeling better but we are having to do some more blood tests to check for a pituitary issue. They are checking her tsh and first morning cortisol levels at 7am tomorrow. Dread that. Hayley is NOT a morning person. Then Wednesday we are on the road to Cincinnati. :wacko: I can't wait to get this stuff over with.


----------



## lilesMom

Hey Xx
He is a good,deal,better
But med raise again soon, doh
Hope hayley,tests,all go,well xxx
Least they,t moving fast enough to do them xxx
The older,s gets,the,more blood tests bother. Him.
How does h do,with them?


----------



## essie0828

My phone just ate my post. :( I hate that.


----------



## essie0828

Ok well here we go again at this......

Glad to hear lil squish is feeling better. I hope his next med increase goes smoother. Poor little guy. Hope your Halloween is fun and he enjoys himself. :)

Well up until yesterday Hayley did very well with blood tests. We had the worst experience yet with a terrible phlebotomist at CCH. I'm so furious that I've filed complaints with the hospital and had the orders sent to another lab. It was ridiculous! I'll give detail later because we have to run, but to say the least I'm pissed off.


----------



## lilesMom

Oh no Poor ye Xx
Hope,hayley has forgotten it 
U would reckon,even they take blood,all the time
They would get good at it but some people never do.xxx

We,r,both sick for Halloween 
A stupid virus. Getting better though xxx

Turns out my thyroid is autoimmune 
I asked my doc to. Test for antibodies last time
Thrry should,be less than 34, mine,were 283


----------



## essie0828

Oh my! That's very high for antibodies. How will they treat it? I know you were planning on ttc in the next yr or so, how will they manage that during pregnancy? Hayleys TSH was 6.4 when they screened her last week. It's borderline high so we have to repeat the test next month. I hope I didn't pass this thyroid stuff to her :nope: I was diagnosed as a child and ya know what, I've never had the antibody test! Might be a good thing to look into at my next doc visit. I have to go get a lump checked out in a couple weeks. Strangest thing, just a hard knot growing near the bone just below my knee. I thought I had knocked my knee on something crawling around after DD but its different. DH felt it and said call the doc so...... I hope it's just a cyst or something simple. 

Sorry your Halloween was spent being sick :hugs: We didn't do much more than dress DD up and hand out candy. Oh and ate way too many sweets. Everyone was in a candy coma by 11pm :haha: Boy my Halloween party days have changed. Lol. Was out buying some local Bourbon to make vanilla extract to give as Christmas gifts. Told my husband that the last time we bought this much bourbon we got pregnant with Hayley :haha: How things change after baby comes along ;)


----------



## lilesMom

I'd say ttc won't happen..
I'm weirdly glad
I've enough on my plate as is
It makes the will I, won't I seesaw subside :-D
Its too risky in foreseeable future

S is still very sick

He got croup
Am worried he may be dehydrated now
Really hard to get food and drink into him
I'm giving him today
Will go back yo Doc tomorrow of needed 

Hope hayley is ok hon
Thyroid is a butt pain but u know yourself it's manageable


----------



## lilesMom

Sorry phone git stuck
Post or lose again
Not much news 
Judy been trying to keep my poor cranky sick boy happy :-D


----------



## essie0828

Aww poor Simon! Is he feeling better? My phone has ate several posts, really frustrated with it. I hope you can get your thyroid stuff worked out
There are some treatments for that, that should allow for you to ttc afterwards. But I understand to try now with Simon would be A LOT. Well on the news front I think I am going back to the country side. Found a perfect house near my mom and grandma. Going home to work my grandma's farm. There's some economic growth in the area and we may be making our living from the farm. It's an interesting adventure at the least. Hope this house comes through! It's beautiful and perfect for us. hugs to my Irish pals and kiss that little guy for me :)


----------



## mummy3

My youngest has diplegic CP, I also have a CP dx :wave:


----------



## essie0828

Hi there mummy3 :hi: How are you? Welcome! It will be interesting to hear from an adult with cp!


----------



## mummy3

I have the dx but I think my CP is more effects from EDS, it was given before we knew about the EDS and in a lot of ways the signs are very similar, I hope I can help though! I do have epilepsy which also can go with CP so who knows really! 

Lots of thyroid issues here? I have a hyperthyroid, on PTU.

Hope everyone is having a good week?:hugs:


----------



## essie0828

That's very interesting about the EDS. I'm almost positive my DH has EDS as well. The CP clinic doctor said basically the same as you. EDS is very similar to CP and treatment is similar. He did agree after seeing DH that Hayley should have a genetic referral. We have an MRI scheduled Dec. 10 then we go for the genetics counsel. Yes lots of thyroid issues here. Im hypothyroid and have been since childhood. DD might be hypothyroid but hoping another thyroid panel will tell for sure. Lilesmum is hypo I think with high antibodies. Speaking of, I hope her little guy is ok. I'm afraid she has had to take him to hospital again. 

Lilesmum hope y'all are ok. Hope Lil Simon is feeling better, :hugs:


----------



## lilesMom

Hey sorry
We r ok Xx
My phone is,being weird
It keeps sticking 
And the notification of these posts are only coming through sometimes 

S is still having fits despite sixth med raise, argh
But they are milder
He isn't sick anymore either thank God

Welcome mummy3
U must Google eds, I'm sorry I don't know much x
My lil munchkin has cp, right sided hemeplegia and epilepsy 
Had infantile spasms 
But now battling focal seizures :-D
He is one and a half and the love of my life :-D

My thyroid is hypo
But last year ish I've had some hyper symptoms at tines
Suspected hashimotos, test had high antibodies 
But waiting to see endocrinologist but could take forever :-D


----------



## mummy3

Sorry, I might spam the page, full bedrest and time on my hands:blush:

Essie, I see your LO has diplegic CP as well, what therapies does she do?


----------



## lilesMom

Essie when is,the,move,planned for xxx
Best of luck getting the,house xxx,


----------



## mummy3

Sorry, I started my last post, had to go sort out baby and only just it finished!

Essie, what EDS type do they suspect for your DH? I have classical type 1, my hubby def has type 3 but he wont go get tested, men! He's hypermobile and has dislocated, so my kids had no chance pretty much. Genetics are interesting, we certainly learnt a lot from our geneticist over the years, he's pediatric geneticist but he's also the one who confirmed my dx and was the one to direct the genes to be tested :thumbup: Type 3 is a shot in the dark though, there's very little in the way of genetic testing, it remains a clinical dx but genetics should be able to give that:thumbup:

EDS comes with varying degrees of low tone, development delays and internal effects. I think it also is linked with epilepsy as I have complex partial epilepsy, as does my 3 year old but the other 4 all have a low seizure threshold. My 16m olds eosinophilic esophagitis is also 8x higher risk with inherited connective tissue disorder and several of my kids have global delay, autism, ADD. Its seems to have effects all over the place. Are you noticing any of these also? 

Lilesmom, I'm sorry your little guy is sick :(:hugs: Epilepsy can be hard to control, I'm still working on getting control and I'm 31, I have lamictal atm, my 3 year old is on oxcarbazepine, it seems to be helping a lot, not fully controlled but much better. DO you know where Simion's focus is? Mine is the left temporal lobe found during a 24 hour EEG.

Essie, is this the first MRI? ALasdhair goes on Friday, 1.30pm and we have to fast him the whole morning:wacko: He cant have anything but his special formula so clear juice etc is a no go! I'm thinking to put some sugar in warm water!

I'm hyper with no antibodies. TSH is unmeasurable but thankfully the rest have normalized on PTU. Thyroid, for a little gland, causes a lot of trouble!!!


----------



## lilesMom

Are u on besrest for long? 
How are u coping with kiddies x


----------



## lilesMom

Posted at same time :-D
My lil,man had a stroke at birth
In middle cerebral artery on left side of brain.
Its,where his fits and hemi come from
He is on epilim and,lamactil
Started on keppra
Then sabril
Then,added epilim 
Then took away sabril
Then added,lamictal

Pain in the bum :-D
All the changes wreak havoc on his tummy


----------



## mummy3

Been on bedrest about a month now, can go to the bathroom and have a shower and that's it aside from appointments, it'll be until delivery:wacko: I'm 22+3 now, labour has already had to be stopped twice. My kids come early, my form of EDS gives PPROM, that's why the last 3 have been 2 months early. I have a nanny, my MIL is taking care of that, we are very lucky! No way can afford it ourself as Alasdhair's special formula is $1000+ out of pocket and he cant have anything else. Insurance covered it while he had the NG tube but when he eventually was able to use the bottle they stopped coverage. At his next round of scopes we'll be assessing for a J tube though, he's non responsive to elemental diet. Big ramble there!

Epilim and lamictal are a good combo. I was epilim when younger, its good for grand mal, lamictal is effective for absence or complex partial. Tegratol and oxcarbazepine are also good for them. Keppra didn't have much effect. Sounds like you're being kept very busy!!! Keeping up with medications and then medication changes is seriously challenging on the brain, I can never keep up!! 

Was your little guy preemie? How old is he? Alasdhair is almost 17m, 15 corrected. What are Simons main symptoms just now? Alasdhair is low tone mostly but with a lot of tightness in the legs, right leg esp drags. He has left hand curled in for crawl. He gets OT/PT/ST once a week at home and a early interventionist 2x a week at home. 

EDS does have huge cross over, you should read into it if you get a min:hugs: My 6 year old is actually due to get a PT here any min for the final step in getting his electric wheelchair:thumbup: His for EDS but the equipment is so similar.


----------



## mummy3

I just read this whole thread, think I'm pretty much caught up, feel like I know you guys in a way:flower:

So many similarities all over the place!! Weird on the thyroid too:haha:

Essie, you're the states so we have similar therapy schedules, we get ours at home though which is a lifesaver, can you request this through EI? I know I get because my epilepsy means I cant drive but they're usually pretty good at giving the at home option if you ask. 

As for the preschool, this I can help with! My 3 year old has been at school since mid march when she turned 3 and EI swapped to the school district. She is in a class with 8 students and a 1:1 teacher or aid to each child. It should be offered in the school district, although its not well known because of the smallness of the class. Her's is for ASD but she also is a fall and flight risk, with epilepsy and tone issues. Seems similar to Hayley (She's Eilidh, pronounced Hayley without the H lol)!!! If its not in your local school or district, you can ask about out of district, Eilidh goes to a school 30mins ago due to our local school not offering enough. My 6 year old was in a mixed peer class like you describe, he had an aid though and still does in first grade. The thing with the schools is you have to push for pretty much anything:hugs:

Oh and respite is great!!! I have 3 of mine qualify through regional center and its a great thing to have, even if you don't use it for the respite. The waivers you can get are worth it:thumbup:

How are the little ones doing? Alasdhair is tired, he had OT/PT and teacher today lol, everyone seems to be coming at once with the holidays! So nervous for his MRI on Friday!


----------



## mummy3

Oh and the guy that came about my 6 year olds wheelchair, he chose red and wants yellow lightening painted on lol, mentioned getting a rifton gait trainer for my little guy, any experience of them? He goes to orthopedic specialist in a month to get the process moving.


----------



## lilesMom

Sorry caught up but s awake Xx
Proper reply later


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## mummy3

Lilesmom, sounds good:hugs:

How is little Simon today? And you, I hope you're getting a chance to get some rest and a cuppy tea:coffee:

Simon is a similar age to Alasdhair right? Alasdhair is almost 17m, very fun age, where they're still so little squishy to snuggle with but not so little they may break:baby:

How big are the other littlies? Alasdhair is 0.7 centile for height but 60th for weight and over the chart for head circumference, he looks like a wee buddha:cloud9:

I tried to add some pics of him, there's one he is actually enjoying speech therapy! Another of his campaign running at the biggest softplay here in San Diego!! Be really lovely to see some of the other little ones if putting them up is ok:hugs: xx
 



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## lilesMom

He is super cute :-D
Yeah Simon is,18 months 
So very close in age. 
S has vomiting bug today and,bit of a,temp
So it's been a hands full day :-D
Il hve to post,properly tomorrow
I've forgotten what,I've,read :-D
Il,try put up pics
But my phone acts up, it may hve to wait till computer


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## lilesMom

No luck. My dumb phone 
It used to let,me but it,stopped
No idea why


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## mummy3

Ooh I have no clue how to work phones, or any kind of technology really lol, I hope you can figure it out so can see pics!

Poor guy :( Being ill is no fun, I hope he's getting over his sick bug really fast:hugs:

Take time to relax and try and keep up your energy while he's got the lurgy:hugs:


----------



## essie0828

Hi ladies. :hi:

My little girl has a tummy bug to. Second one in 2 weeks. I'm thinking it may actually be from her starting solids all over again. When she's sick, she completely abandons solids, then gradually weans herself over a few weeks. I have pushed her feeding issues in OT but this is still the cycle she gets in. She's good height and weight. 98th percentiles for height, 88th for weight. She drinks a formula when she is off solids, it's a little expensive but we get it free through her doctor. Gotta runfor a bit. Be back soon


----------



## lilesMom

He is still,a bit dodgy.
Poor,fella, all he wants is cuddles 
Hands full here :-D

Hope hayley is better soon hon x

Hope all's wel l mummy3


----------



## lilesMom

How ye doin ladies?
Mr squish is still sick
Prob take him yo Doc for a third time tomorrow 
Unless he improves overnight


----------



## mummy3

Morning guys! Hope all the little ones are on the mend? :hugs:

Happy thanksgiving to everyone!!!:hugs:

Essie, feeding issues can be a nightmare to deal with! Have you asked EI for a OT that specializes in feeding? We have someone come by for Alasdhair for feeding on occasion, he doesn't need it just now because he only gets 1 thing and so far no issue with it. My 6 year old and 3 year old though are/were so hard to deal with feeding wise. The preschool programme my 3 year old is at has feeding group there which is good, is there something like that where you are? 

I hope Simon is better :(:hugs::hugs:


----------



## mummy3

Alasdhair had his MRI last Friday, still don't know results but it went really smoothly, he woke up so fast! No hanging around for my little guy!! He has to go get scoped endoscopy and colonoscopy on Wednesday, not looking forward to that. Really dreading that there's been more deterioration internally from his GI condition, he doesn't demonstrate pain appropriately and has a lot of sensory issues so never know with him! Last scope in October we expected a huge improvement an him to get to start food trials but despite him seeming better he had got 4-5x worse with his esophagus starting to break down. The doctors said he should be agony but he doesn't show it!! Do either of your little ones have sensory issues?


----------



## lilesMom

Sorry I'm typing,with my thumb and light from phone is making s,stir in his sleep.
Il do my,best to proper post tomorrow 
Glad mri went well
Some kids,get upset by,sedation.
Xxx


----------



## essie0828

My kiddo has sensory issues and doesn't react to pain very much as well. We are actually in the waiting room while she gets her MRI now. Hated watching her go to sleep. Hate waiting even more, I want my baby girl :(

Ladies hug those babies for me. Wishing y'all well. Hope to get some free time soon to catch up. :hugs:


----------



## lilesMom

Ye ok essie Xx
Things a bit crappy and hectic here too.
Still having fits and feeling off from medicine. 
Another raise on Fri again. 
My money got stoped due to Office mistake
Heading into fourth week trying to get it back
But was told today I will get payments again 
Thank God 
No Xmas shopping finished cos of it
And bills mounting 
My car needs more repairs too
Failed car test twice 
I spent most of yest crying 
But I'm ok again todaay. 
Simon hates his afo, 
I really want to get him crawling so he is less frustrated 
Sorry huge moans
But needed to vent :-D
Hope ye ok xxx


----------



## mummy3

Essie, how did the MRI go?:hugs: Its so hard watching them go off to sleep :cry: Alasdhair had his scopes yesterday too so had to watch him go to sleep again. When do you get results?

The pain thing is odd, I wonder what it is!

Lilesmom, 4 weeks no payments? That's awful!!! Will they at least backdate? Really not fair of them to do that this time of year:hugs: I hope Simon is feeling better? Vent away:hugs: The frustration affects them so so much, whether its motor, communication, social etc, when they cant get across what they want or do it when they want to, it makes for very grumpy little ones:hugs:

We got Alasdhairs report back from the MRI, basically, bilateral periventricular white matter signal most likely representing gliosis from perinatal insult, corresponding with mild thinning of the isthmus of the corpus callosum seen. So something called periventricular gliosis/leukomalacia is giving his delays and CP. He was 9 weeks early with a emergency delivery deprived of oxygen so was at a high risk. We are happy that the fluid levels appear to be in normal range now:thumbup:


----------



## lilesMom

Were the mri results what u were expecting mummy 3
Hopefully better than expected Xx
How u doin yourself? 
How did scopes go today 

Hope all's well with ye essie x,


----------



## essie0828

Hi ladies. 

:hugs: lilesmum. That's a lot to have to deal with hun. Hope they get everything straight soon! Hugs to little man. I hope he feels better soon.

Mummy3 I hope you get good info from his scope report. :hugs:

Well we were delt a blow with DDs MRI results. She's showing demylenization inconsistent with CP. We've been referred to genetics and have way more questions than answers at this point. Multiple Sclerosis seems to be a possible diagnosis. :( It's all overwhelming really. Feeling sort of lost and unsure of where to go from here. It's possible her condition can.deteriorate over time, but we are mostly unsure right now. I expect lots more testing to come. Love to my bnb girls! Be back soon!


----------



## essie0828

Lilesmum sorry about the car test :hugs: It's hard to concentrate when you have a lot of stressful things going on. I got a speeding ticket a little while back. $177 worth of speeding supposedly, according to the cop. Merry Christmas to me. Grr. Do you get another shot at it? Hope Simon takes to his afo soon. DD didn't like hers at first either. It was a gradual acclamation and she still will try to take them off at any chance. But she also knows that they help her move faster now so she will tolerate them for that. He will take to it. If he gets frustrated give him a few days out of them and start over. Took Hayley months to get used to them. I have not finished my Christmas shopping either. Have a few bits for DD and DH and some vanilla curing to give to friends and such. Going frugal this year, making candies and cooking more than spending $ in the malls. DD is getting thoroughly spoiled and I'm satisfied with that :) At least we can afford to buy gas for the vehicles now:haha: Gas prices dropped over a dollar a gallon here, me and hubs danced a Lil jig :haha:

Mummy3 the report you got from A's MRI was what I was expecting to hear about DD. Was really expecting periventricular involvement but she had none. Her brainstem however was lit up like a Christmas tree. I've not spoken to anyone formally except a nurse, but I have the MRI images on my computer. All 1588 of them. My brain aches from studying them, literally aches. DH took my power cord to work with him today to keep me out of them for a bit. I need a break. The nurse was very vague in her description of the results and informed me the doc was out for the next few days. Great! So I'm getting the radiologist report and I'm gonna figure it out myself. I am not much for waiting. Her scan pics are very different from the hundreds of CP MRI images I've seen researching over the last couple years. I saw that immediately, with a very untrained eye. It's a big shock, we've went a little numb over it and are just enjoying the weekend spending time with DD. I'll have more details in a few days. 

Love to y'all and those beautiful babies!


----------



## lilesMom

Hugs essie.
Hoping,Doc gives u good news 
And a clearer picture. 
Damn them making u wait Xxx
Huge hugs xxx


----------



## mummy3

Big hugs ladies:hugs::hugs:

Lilesmom, how are you guys doing? Everything getting ready now for Christmas? How is Simon?

Essie:hugs: Genetics are a great resource, we would be totally lost without ours. If you want I can help you look at the images? Seen a lot between mine and the kids. My sister has MS, I have epilepsy/isaacs/CP and my 3 year old had an abnormal MRI with inconsistent demylination. We still don't fully know the answers for her though, she is on meds for epilepsy, has ASD (lost all language), development delay and doesn't feel pain. Geneticist initially said retts syndrome but now she doesn't show the hand movements. Anytime you need to talk:hugs:

$177 of speeding :argh:

Alasdhair's scope procedure went well, the results were not the improvement needed though. Had to take him to childrens urgent care yesterday and it turns out he has an ear infection. This means antibiotic capsules we have to open, mix with water and syringe in as he's allergic to all foods and dyes:wacko: He's not been eating much for awhile now and he's lost weight, he refuses his formula! He has no safe foods though so with refusing the doctor said the clinic will want to put the tube back in :( She sent the message to them with the measurements on same scale. Urgent care is the same system as main childrens where the clinic is.


----------



## lilesMom

Hey :-D
Another med raise here
It upsets him for,a bit 
Still mild fits,but less than before 
Teething hard, poor guy.
His tummy is,a bit,all over the place from med.
But,He is in good form so not too bad 

Sorry to hear about infection 
Hope a feels better soon hon x 
R,ye home again? 
Hope so xxx


Essie hope h is good xxx


----------



## lilesMom

My money still not sorted so Xmas prep on hold 
We did go to see Santa yest 
He took no notice of,Santa but loved the Xmas lights 
And loves his puppy toy,he got


----------



## mummy3

Oh no lilesmom!! That's getting awfully close to Christmas now for the money to get sorted :( Do they have an estimate time for it to be fixed? I'd be hopping mad waiting like this!!:hugs:

Glad Simon's fits are less, med increases can take a lot of adjusting:hugs: Teething is not fun!!! Hope his tummy settles fast :hugs:

Yeah right now we are home. Yesterday the EoE (eosinophilic esophagitis) clinic called to see him at 2pm, confirmed he needed the tube back in and gave us an appointment at GI for today at 3pm to go and get it placed, collect the pump etc. They're doing NG again, not sure how that's going to go down with a 17m old!! 

Essie, how are you guys?:hugs:


----------



## lilesMom

I typed a,post last night but it seems to,hve,disappeared 
Hope it goes well today mummy3, 
Big adjustment for a,again
Hope,he takes to it ok Xx 

Money will,be back the 18 th
I hve it on writing now so it should be there
Least Il,actually def get it :-D

Hope h is sell essie xxx
How u doin? 
Any,better answer yet xxx
Hope ye r ok xxx

Welcome Samantha 

X


----------



## lilesMom

Hey how,ye,all doin Xx

I got Simons,repeat Prescription today of his meds 
One of them my chemist gave me 25 mg tablets instead of 2 mg ones he should have
I'm so lucky I spotted it.
The outside sticker they put on pack says 2 mg
But the tabs inside are 25
Iwould hve been giving him tabs 12.5 Times his dose.
Scares me 
Thabk God I saw it.

Hope everyone is well.

Essie hope ur just busy xxx
And,things r ok xxx


----------



## essie0828

Hi ladies :hi:

Sorry been away so much. I keep popping in to read but never take time to answer. Shame on me. I know you ladies understand though :hugs: 

Lilesmum thats too damn scary. I think I would be after me a pharmacist to thrash. Thats deadly and very stupid on his/her part. Tell them to grab a cup of coffee and wake the hell up before they kill a kid. Holy cow! Wait. Is coffee a thing over there or are you guys tea people? ;) Hows wee man? My little one loves the lights to. :) She just Has to touch them, so we put them all over her ball pit and let her play with them in the dark. She was very entertained to say the least. Getting her to bed after that was rough. 

Mummy3 Sad to hear your little guy has to have his feeding tube back. :hugs: NG tube will be tricky probably. The older they get the harder it is. We patch Hayleys eyes as a part of her eye stuff and she will rip them off in a second now. When we first started I could just swat her hand away and she wasnt fast enough to get at it. Now. Omg. Now I have to reason, and bribe, and trick, just to get a portion of the time in. If i had to tube feed her I would fully anticipate a war. Good luck!


----------



## essie0828

So its been kinda crazy around here. Kiddo has croup. We were in the er all day with her, after sitting in a urgent care clinic for a good while. They looked her over and told us to go to the ER with her. Some steroids and shes doing a little better. Shes still quite miserable, poor girl. Not much news on the MRI front. Weve been handed off to genetics for answers. Its really odd how they are avoiding my questions. Im a little suspicious. Genetics appt is thursday. Roll on Thursday!


----------



## lilesMom

Totally understand essie
Sick kiddies leave little other time
S had croup a little bit ago
Horrible thing Xx
Hope h is better soon Xx

Roll on thurs for more answers 
I find our docs don't like giving answers until they aare totally sure
They like to hedgetheir bets , in case they turn out to be wrong
Hope thurs goes great aand helps u sort out stuff xxx

Aw lights like that sound lovely for h.
S has a torch with 5 coloured lights
He adores it


----------



## lilesMom

Coffee and tea are both good
:-D
I was hopping at first with tablets 
Very dangerous mistake 
My family hve gone yo same chemist all our lives 
Never mistakes before
The guy who owns it is quite sick 
He has hired new workers, 
Think it was prob one of them


----------



## essie0828

When I was a kid we had a family doctor and went to an apothecary that had a soda fountain and ice cream. We knew the family that ran it and they knew all their customers. Now things have changed so much with big chain pharmacies taking over. It sounds like your chemist is similar to what we had growing up. I miss that personal feel. Way to go momma for spotting the mistake. :thumbsup: This croup thing is for the birds. This is the first time kiddo has had it, ive never heard such coughing from her. Coughing all night, nose flooded with snot, ear draining, she is pitiful. I remember you saying S had it. Hes so little to, poor lil man. I understand fully how rough you had it :hugs: I woke with a sore throat and horse voice today. I do believe DD has shared her germs with me. She is feeling better today and resting well, Eating and drinking well, so im happy. Still worried over thursday but today is looking up. Hows S after his last med increase?


----------



## essie0828

Oh and how are afos going?


----------



## essie0828

samanthajohn said:


> Yup we are, our family have 2 little ones.

Hi there! Welcome!

So you have 2 kiddos with cp? What are their ages? Welcome again to our little group, feel free to share about your family anytime. Or ask any questions you would like :flower:


----------



## lilesMom

Hve to go back and get heel lock for afo
He keeps kicking um off

Glad hayley is starting yo feel better x
Horrible thing to have.
Totally exhausts them x
I'm up in middle of night
Had yo take s for a drive to calm him
His tummy is sick
Wind pains r killing him

Hope Thursday goes well hon
I hate how they make us wait for something so important 
Xxx


----------



## essie0828

Aww poor little man. Hayley had wind pains a lot, still does but she has learned to wiggle and move until it passes. Shes too cute doing it to, she will whine a little and bounce around for a second, then boom! Sounds like a grown man passing gas. Shes starting to blow raspberries afterwards and giggle. Love it. Its hard on them when they cant move around as much to work it out. The gas drops never worked for us either. 
We are waiting on toe straps for Hayleys braces. Thats the thing with afos, they need adjusting quite a lot. Hayley is walking so much better now with her new ones. Back to walking 20 small wobbly steps on her own. All I have to do is open the front door and tell her if she walks out we will go. Buddy you would think she had been walking forever. She seems to be catching up really fast, at least catching up to where she was a few months ago. Even this croup thing seems to be passing faster than her other colds. I love seeing this but im worried about it as well. Shes coming along so fast that im afraid when she was so terribly sick in October that she was having a true neurological regression. Not just weak from illnesses. She had stopped walking and was having trouble with speech progressing. She just stalled. Just a few more days until I can actually speak face to face with a doc. Its harder for them to avoid my questions when im looking them in the eye. DH assures me I could have a future in interrogation ;)


----------



## lilesMom

Simons words are,all but gone,again due to being sick and fits
Has happened a few tines before
Its like he needs to be tiptop to learn.
Thought I was a bit crazy but obvs not since hayley us the same
Hope ur meeting goes well today 
Waiting sucks. 
Least it's here now
Mrs interrogator can get to work :-D 
Xxx


----------



## essie0828

Hi ladies,

Started the first round of genetic testing today. They took 5 vials of blood from DD, poor girl screamed and cried. We wont have results for at least 4 weeks. Her MRI showed mild to moderate demylenation in her frontal lobes. Also some periventricular white matter loss and demylenation, mild to moderate. The most significant white matter loss and demylenation seems to be developmental or possibly genetic. We still dont know if this is a progressive thing or not.


----------



## lilesMom

Praying it's not progressive hon Xx
Huge hugs xxx 
Must be so,worrying xxx


----------



## essie0828

Hi everyone :hi:

Hope everyone is having a good time preparing for the holidays. :) Still have some gifts to prepare but mostly done. Have been smoking spices to give as gifts along with vanilla I made. Smoked salt, sugar, paprika, and chili powder. The smell is amazing. DH says its like bottling fire ;) Love to all and Merry Christmas!


----------



## lilesMom

Merry Xmas sweetie xxx


----------



## essie0828

Merry Christmas Everyone! Hope your holidays are going great :hugs:


----------



## lilesMom

Munchkin is sick,again 
Boo hiss
Chest and esrcinfection and croup 
On antibiotics,and steroids 
Hope they work fast 
How ye doin xxx


----------



## essie0828

Aww poor little man. :hugs: I hope the meds work soon. We are looking at having to do IV antibiotics for Hayley. On Christmas DH lifted her up into a ceiling fan on accident at my grandmas. Old house, short ceilings, plus tall people equals disaster. Well she got popped right in the eye and now has an infected eyelid. Post again soon.


----------



## essie0828

Was at her regular doc today and they talked about admitting her but gave me the option to take her home and give her this really strong oral antibiotic then bring her back in tomorrow prepared to be admitted if it hasnt improved.


----------



## lilesMom

Ouch, there must hve been lots of tears!!!! 
Hope oral antibiotic works xxx


----------



## lilesMom

My poor mouse is so miserable and cranky.
Feel bad for him, wish time would fast forward to both h and s being better 

Mummy 3 r u ok? 
R u gone? 
Hopefully just busy xxx


----------



## essie0828

Aww hun that's so sad. Its so hard to see them suffer. I hope he feels better fast. :hugs: for both of y'all. 

We are in hospital, IV is set and we are waiting on a room to start the antibiotics. They mentioned we may be here 2days. :( I would rather spend New Years at home.


----------



## lilesMom

Aw hugs honey xxx
Hope hayley is better fast xxx

My mom is in hosp too.
Her heart again 
Can't visit cos munchkin too sick.

Crappy time if year for hosp
Not that there is ever a good time xxx
Hugs Xx


----------



## essie0828

Hi dear. Hows Simon and your mum?


----------



## essie0828

We are out of hospital and home. Hayley responded well to the antibiotics and her poor little eye is back to normal. She is walking so much now, always holding one of my fingers, but can walk almost anywhere now. Stairs are still a challenge but she goes up them with help. Its almost like because she was late walking she's making up for lost time, lol. For that im thankful. 

Well someone stole my benefits card when we were in hospital and cleaned out the account. Its Hayleys disability benefits. What heartless, POS could steal from disabled kids in a childrens hospital during the holidays of all times. Thats a new level of low. The money was spent in California in less than 24 hours. Before i even noticed the card gone from my wallet.


----------



## essie0828

Thankfully DH has a decent job and we use that for extra things for hayley. But it really makes me so mad. Theres little chance of getting the money back to. Lol, Happy new year. Thieves SUCK!


----------



## lilesMom

Aw man, 
What scum to do that 
Lowest of the low
They will hve no luck 
Any hope of getting it back at all?
Hops ye can.
I used to work in a hospital
A porter got fired for robbing patients bags 
Complain to the hospital if u haven't already hon
Glad hayley is doing well xxx
I can't until Simon walks :-D
He is allergic to standing at the mo


----------



## essie0828

Scum of scum if you ask me. Not sure if we will have a chance at getting it back but account is canceled so no more damage can be done. Hows simon feeling? Getting over the croup? He probably wont be up for standing for a while until he feels better. Hayley always does that when shes feeling bad. Hates standing and walking then. I cant wait till he walks hun. He will. I promise. But it will take a little while. Hayley is almost 3 and she still cant walk unaided. She just had to.take her time. Got some of the preliminary genetics back, she has all her chromosomes with no large pieces missing or added. This doesnt mean she is free of genetic defect but this rules out some of the dangerous disorders. Waiting on more in depth results but things are looking up thst this may be "static", or non progressive. Her tsh test came back normal, so thankful for that. It seems her brainstem and the area around her pituitary gland are undamaged. MS may not be whats going on in her brain. Only time will tell i suppose. For now shes happy and healthy and that keeps us going. In the hospital she beamed for everyone, huge smiles even though she was sick. On new years eve some sweet volunteers brought her a goodie bag with party hats and necklaces. She wanted them on at once and paraded around the halls showing off.


----------



## lilesMom

Some days I'm impatient for,walking 
Other days o know he needs to do it in his time :-D

So glad testing is going,well 
Xxx
hope it keeps looking great Xx

Hope they'll catch who took ur money
Its seriously awfull 
Hugs 

Is,hayley a girlie little girl so
Into handbags and jewellery :-D
Cuteness


----------



## essie0828

Lol ,yes the little thing is turning into quite the princess. And I have no clue where she gets it because I am Not, lol. I only occasionally wear makeup and do my hair and when I do she is fascinated with my face. She will touch my eyelashes and lips really gently and smile. She tried to do her own makeup and spilled a whole bottle of foundation on my bed and proceded to paint herself with it. Hands, legs, bellybutton, a huge swath of my sheets.....all covered. I underestimated her ability to twist off lids. :dohh: And the more glitter on something the more she likes it. :p


----------



## essie0828

Oh and as far as jewelry. She walked some of her first steps to collect jewelry. Her PT wears tons of jewelry and would take it off piece by piece and lay on the floor. Hayley would walk and pick up all her jewelry. This lady has some expensive jewelry to! Im sure her bracelet costs more than my car but she always lets Hayley play with it. Shes the sweetest lady ever.


----------



## essie0828

How is S doing with his seizures? Meds working better? I worry sometimes that DD may be having them and Im missing them. All the docs seem surprised when I say she doesn't have seizure activity. She does this thing where she moans a lot but shes active when it happens. Does it walking, or while she plays. Ive seen her daze out but i can always get her attention after a couple seconds. I dunno really. I get what the docs are confused about. Theres some undirected electrical activity in her brain from the lack of myelin but I havent identified a seizure for sure. How did you notice them in S?


----------



## lilesMom

Aw cuteness :-D
I hve a 3 yr old niece the same
Loves getting new clothes 
And had done since she was tiny :-D
She would do a great fashion show for us :-D
Loves handbags 

S loves his grannys jewellery 
The more colour the better 
She wears big chunky coloured stuff 
That's my mom, 
I never wear it cos I'd be tormented 
And it would be broken :-D


----------



## lilesMom

S seizures were very obvious without medication
Its only now when getting more controlled 
Its hard to tell I'd dystonia or seizure 
He is still having them now
But mild and not full blown or as often anymore 
A Doc in hospital ages ago said to me
That everyone has a seizure threshold, 
If u have enough damage or stresses to break that threshold anyone will hve a Seizure. 
Simons threshold is lowered by his stroke, sickness, cobwtipation etc which is why he has them.
Maybe hayley has a high threshold to begin with?
I'd that makes sense. 
The spacing out u sometimes see could be mils seizure activity without being full blown seizure. 
Does she cone out if it with distraction or touch.


----------



## essie0828

Comes out of it mostly with touch. I can say her name and get nothing, a favored toy or fingers snapping works most of the time, but im always touching her at point to. Im not sure really. She will also take toys that have flashing lights and sorta space out whilst pressing it close to her face and pressing the switch over and over. Ive seen this behavior just 3 or 4 times with a paticular phone toy that has a red light. Mostly when she was very tired, or sick. Also seen her do this with another light up toy.


----------



## lilesMom

Simon does tXx s with lights too 
But I thunk it's a sensory thing 
Not an epilepsy thing.
In eeg he doesn't react to the lights,
He loves looking at them but they don't trigger epilepsy 
So they reckon he isn't photosensitive
Another Doc told me only a small percentage of people with epilepsy are 
I think he said ten percent but I'm not sure on number 
If she stops with touch, I reckon it's prob sensory overload a little
or old fashioned day dreaming
I'm a deadly spacer sometimes from day dreaming :-D
S slowly coming round to standing again.
Thought I was goosed with it :-D
He has just started erythromycin for reflux
Just to trial it
Fingers crossed :-D
How ye doin xx


----------



## lilesMom

We started ttc 
Still nervous but fingers crossed things go ok this time :-D


----------



## essie0828

Aww hun that's awesome! Me and mine wish y'all the best, I really hope you catch quick ;). God, the waiting to get pregnant always drove me batty. Lol. I'm very impatient. My insurance agent and one of Hayleys PTs both said they were trying to have a little one. Both are doing IUI or IVF. Our insurance agent is sweet, he and his wife are both in their early 40s with no children. They are trying despite the "Advanced maternal age riskis". They are really sweet to Hayley, I think they will make great parents. When are you testing? :) Sorry for being nosey. 

I think your right about sensory overload being an issue with DD. She has issues with being really fascinated with anything that lights up really. Tablets, toys, christmas lights, to name a few. I still have my tree up and lights on one window by the tree. :dohh: That's really kinda considered tacky where we live but DD LOVES the lights. They are all on one switch and she flips it first thing everyday. Shes not as grabby with them anymore. Still has to gently touch them sometimes though. We had a living tree this year, root ball still attached. We planned on planting it at my mums over the new years holiday....lol. Well we were in hospital, got robbed and all that so the tree has been kept inside too long. It has broken dormancy and cant survive the temps outside right now, (7°F yesterday) so Im sorta stuck with it indoors until spring. :haha: Its beautiful, smells nice and isn't making a mess so were keeping it. My dog thinks her home is under it, she sleeps under it every night :haha:


----------



## essie0828

We are "in talks" about ttc. DH and I still aren't on good enough terms to bring another baby into this now. But both would like another someday, mabey, lol. Things would have to change a lot before ttc would be an option.


----------



## essie0828

Erythromyacin for reflux, they are thinking he has h pyloric ulcer? My husband and cousin had this. A course of antibiotics, a month of acid reducers to heal the stomach and all was well. My husband was very sick with this for a while when we were younger.


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## essie0828

Wow just read they are using erythromyacin in little ones with cns damage to stimulate stomach and intestinal contractions. Interesting! Is this what they are thinking with S? DD doesn't throw up much but constipation is a problem. She is having trouble adjusting after these massive doses of antibiotics for her eye. Loose stools one week constipated and not eating the next.


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## mummy3

Trying to catch up! :wave:

That's just awful about the stealing :( Some people just have no shame and no heart, I'm so sorry:hugs:

Hope the LOs are starting to feel better?

Essie, that's good news about the first lot of results, I hope you get answers soon:hugs:

Yay for TTC!!!:happydance: Baby dust!!!:baby:

My little girl was born Dec 22nd, fast c section at 27+1 after pprom, born 2lb 1.5oz and 13in long. Amelya:baby: So busy holidays for us!!!!
 



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## essie0828

Shes beautiful!!! Omg I bet you are busy! Congrats! Is she still in hospital?


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## essie0828

Wow mummy3! I was watching the ticker before the holidays but never expected you to come back in the new year with a new little girl. I hope you both are doing ok. She's looks like she's on room air. Seriously?! What a tough little lady! Lol. Aww super congrats, ty for sharing her pics :hugs:


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## Pink_Sparkle

Hi there, I've not been on B&B in a long time! I was wondering if I could join in this discussion? My 20 month old son was born at 23 weeks, as a result he has ******* quadraplegic cerebral palsy and poor muscle tone. I'm starting to feel a little isolated (in the parenting world anyway) as I don't know anyone who's in a similar situation with their little ones. I'm sorry I've not been able to read through all the posts but I'm happy to join in if you'll have me! Xx


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## Pink_Sparkle

I've just realised that the S word has been blanked out - I was using it as his full medical diagnosis but I know it's used in other terms also :( hope I didn't cause offence x


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## essie0828

You are very welcome dear. Glad to have you. Yeah its kinda ridiculous they block out [email protected] in this thread anyway. Its apart of a lot of CP diagnosis. No offence taken dear, not at all. Hows your little one doing?


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## lilesMom

Hey. I'll post properly tomorrow but short version :-D

Congrats mummy3 , u did hve a busy hol :-D xxx
Hope,ur recovering well xxx

Essie it's only cd14 today so no testing fir a bit :-D
I got preg third month first time round
And first try with s.
Its usually fast in my family :-D

We had,a living tree too.
Still hve,our,deco up too.
Half lazy, half cos s likes.
Gonna plant it in the garden fir next year :-D

Pink sparkle welcome hon Xx
They always blank out Sp"astic.
Bit weird of them on special needs forum Xx

Ok was gonna be short :-D

My mom us in hosp again 
She is having a tough time with her heart.

Love,to all xxx


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## lilesMom

Essie erythromycin is yo speed up the food,through his system 
Hppefukky helping reflux,and constipation 
I'm on the fence so far but it's only been 4 days
He is still adjusting to it. 

In still a teensy bit nervous of ttc
But we both want one more.
Plus I think s does but he doesn't know it :-D
I'm more,relaxed about it.
Kind of think if it's meant yo happen now, 
It will. 
Hoping it goes better for us this time. 
Third time lucky. :-D
Hopefully no issues this time


----------



## lilesMom

Pink sparkle ny son Simon is 19 months old
He has right sided hemeplegia with epilepsy 
He had,a stroke being born.
Xx 
They r very close in age.
S bday is May 28 so he is 19.5 ish months :-D


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## essie0828

Hi ladies.

Lilesmum how's your mom doing? Hoping shes doing better. Hows the erythromycin working for S?


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## lilesMom

Hey :-D
She is home anyway with a monitor for 48 hrs
She looks kinda shook but is ok.
Thabks x


Jury's out in erythromycin,
First 3 days was great.
Not so much since.
He is barely drinking whichI'm not sure if related


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## lilesMom

Silly phone
Or if he is just ditching bottles fir food and cup
I had reduced laxative but he is needing closest original dose
The erythromycin was supposed to replace meds
Not b additional one
Will give it till Monday.
Ringing seizure Nurse again on Monday
And can ask her.
How ye keeping? 
Any more tests back


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## essie0828

Aww hun, I hope being home does her some good. Being in hospital stinks. Hope the monitoring comes back good. :hugs: Poor little S as well, I was hoping the erythromycin would work for him. Hayley always goes better if she has had antibiotics. For about 2 weeks anyway. She has been having trouble of late. We were to the point that we were not using laxatives but I have had to give her a few doses this past week. She is also eating more solids which im excited about but with that transition comes tummy troubles every time. Mainly constipation and then refusing food. She has started getting around better lately as well. Starting to climb up on things a lot and walking more. She seems to be on the upswing a bit. Still having lots of oral motor issues but improving. No additional news from tests yet.


----------



## essie0828

Hi everyone. :hi: 

How is everyone? Super busy I suspect. :hugs: 

My little one has her days and nights mixed up. Im getting her in bed around 9 and she's waking before midnight. Usually asking for a bottle. She is eating a lot more of late, so I suspect a growth spurt. She stays up till 5am and then sleeps past noon. Those hours are killing me, lol. Ive tried lots of tricks to reset her bedtime but the kid will not sleep through the night. She has been doing this ever since we got out of the hospital. I even tried getting her up at 9 am and keeping her up and going until she literally fell asleep sitting up and she still woke those nights. Lol. Any ideas on how to get her sleeping through the night insted of sleeping like a teenager?


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## essie0828

Mummy3 how are the babies? Everyone adjusting well? Hope all is well with you and your little ones.

Pink sparkle how are you and your little guy doing?


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## lilesMom

Hey I typed a post to ur last message but
It seems to hve disappeared
Dumb phone 
No news here really
Munchkin is doing well
Getting his words back which is fab
Still having mild fits But very mild
so meds r nearly there
Happy enough in Afo again
And happy enough to practise standing :-D
Still too early to test on ttc front
Accidentally ordered ovulationvtests and some preg test
If I'm not preg this time I May use ov tests next month
I feel preg but could be kidding myself
Sinuses playing up so some of it could be that

When s came out of hosp he was out of sync too
Just tried to stay as close ad poss to his normal times
After a week r so he would be normal again.
Sorry no helpfull advice 
Only maybe go to sleep with hayley for a bit during the day Xx


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## essie0828

How many days till you will test? Aww I hope you get your sticky bean asap! HaHa! Bring on the peeing on sticks phase. Lol. I got a little freaked out this month and tested. AF is due anytime now and shes a no show. Negative on test so I expect her soon. ;) Hope she stays away for you :hugs:

DH is off work early today and we are taking the little monkey to the park. Let her get her fill of climbing there and mabey she will stop trying to climb everything in the house :haha:


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## essie0828

Thats wonderful news about S! Im glad his fits are getting better, so no more med increases? I hope thats over for yall. Still doing the erythromycin? I'm curious about that. I haven't heard of it being used to stimulate muscle contractions in kiddos with cns damage here. It sounds sorta promising. Ive taken it myself for infection and it always made me go more. Tmi, lol. Did he get loose stools with it, or just poo more than usual?


----------



## lilesMom

So we could both be expecting :-D
Just did a test. 
Only ten dpo so too early
Not sure if I saw a whisper of a line
But ridiculously faint so could be evap line
I'm not even sure if imagined :-D

Will test again in morn
Af not due till Sat.

Hope hayley has fun climbing :-D
Can't wait till s can do that too. X


----------



## lilesMom

Fits aren't gone yet
So will prob be a bit more increase
But only a little I hope :-D

Erythromycin isnt making much difference
Ilvgive it another week e so and see
Its a small dose
2/5 of dose u would hve if sick


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## lilesMom

I did another test. 
Cos I lost track of time with the first one
Totally blank :-D


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## essie0828

Its still early, Saturday is a long way off, you are still in the race ;) I feel like af will be here very soon, all my normal pms symptoms have peaked. Im thankful really. Im not ready, got some health issues to work out first. Not to mention all thats going on with dd, not a good time to be sick. I get morning sickness very bad. This little scare has opened my eyes some. :haha:

I really hope you get a + soon. :hugs: Keep us updated on tomorrow ;)


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## lilesMom

Glad ur n
ot expecting so since ur not ready Xx
I was half sire I was ready.
But I'm after getting myself excited now
I know I'm not out this month yet
Tww is just too long. :-D

Hope alls well with ye xxx


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## essie0828

Im excited for you as well! Have you tested again? 

I played with a handsome little fella today while out with DD. He was about 1 and was very happy to play peek a boo with DD and me. It was too cute. Well ready or not AF still hasn't shown up for me. Today I am officially late and I have been nauseous several times today. I really hope it was what I ate. Picking up a few tests tonight to find out for sure. 

Have to brag on DD today. She took every step I did and climbed herself into the car. I did not have to lift her at all. Had to catch her from falling a few times but she did the stairs we came to and tried pulling open the doors. Shes not quite strong enough to pull open the heavy doors but shes trying. Aside from a bit of a moaning fit when she got tired, she did amazing today. Proud of her trying so hard.


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## lilesMom

Still bfn but af isn't due till Sat.
I got new tests and I think they r crap :-D
Or else I'm not or its too early 
Oooh. Let me know how u get on? Xxxaw good on hayley 
Well done both of u xxx
S stood playing at a,table with me behind him for 15 mins yest
Longest,ever standing out of stander :-D
Go our little munchkins.


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## essie0828

Thats WONDERFUL! Hes standing!!! Go buddy go! Aww that's a great milestone, and a tough one to. DD still needs to hold a table or something to be stable. This is great! WTG Little man and mom! :hugs:


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## essie0828

I chickened out and didnt buy the tests. Totally avoided the store all together :dohh: And still no AF. Trying not to get really stressed about it, could just be a longer cycle. But I have been clockwork for 3 months. Not trying but not taking birth control either. :O Time will tell or ill finally make myself poas again.


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## lilesMom

I hve to prop him but he is mostly doing it himself :-D
So that's great :-D

I should stay away from tests :-D
Its making me focus too much.
I'm ok either way
Cos I'm half thinking we should wait :-D
But possibly we won't :-D


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## essie0828

Lol. Roll on Saturday! That really is good about him standing, it took Hayley a lot of practice and extra time to get it. Like a year and a half! She can stand out in the open but will fall easily if bumped. If she has something to lean on she is quite stable. I almost think she could use a cane. For now mommys hand is her cane but it may be a good option for later. I saw a small pink one at a drug store recently and almost tried it but she was more interested in wielding it like a sword. May not be time for that yet :haha:


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## essie0828

AF is here :happydance:


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## lilesMom

He is a long way from standing on his own yet 
But doing good again now,thank God.

Hurray for af :-D
I hve no clue if I am anymore
Would usually hve bfp by now if I was
So might be af too. :-D


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## essie0828

Aww I hope you get your BFP soon. If not roll on next month ;) Let me know how th OV tests work for you. I havent used them very much. Someone gave me a partial pack with 4 tests and i used those but more for confirming ov than targeting it. 

Hayleys genetics report is back. There is an abnormality in a region that markers for some metabolic disorders lie. The test wasnt specific enough to see those specific markers so more testing is needed to confirm. So as of now it looks like my little girl has very mild cp along with a possible metabolic disorder. Methylmalonic acidemia and homocystinura are named in the report. Both are quite scary but possibly treatable. Honestly I dont know much about either disorder yet. My head is still spinning.


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## lilesMom

It's good to know whatever it is for treatment 
But no wonder ur head is spinning xxx
Hugs xxx
How long will new tests take
Hope it's fastxxx
And good answers
I know nothing about either of them
I'll hve to look them up xxx
Hugs again xxx


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## essie0828

I will have to call Monday and book the other tests. It will probably take a while for the next round of genetics. Im pretty sure they will be looking for samples from DH and I to confirm. We both have to have the recessive gene for these disorders for DD to be affected. She will need to be tested for blood and urine levels of some specific chemicals and we will need to see a Registered Dietition because her diet will likely need changing. If she indeed shows signs in her blood. Management seems to be dietary, low protein diet and supplementation of enzymes and B vitamins especially.


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## essie0828

Its Saturday! Any news on the ttc front? Hoping you got your BFP :hugs:


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## lilesMom

I read up a little
there seems to be lots of treatment,and management to help xxx
Hopefully it moves fast for ye now hon xxx
Such,a shock to get for ye,all xx

No af but still bfn
Think my tests may be dud :-D
Might hve to invest in proper ones if no af tomorrow


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## lilesMom

Was with my mom,all day
Her,epilepsy is gone bananas again.
Stupid epilepsy


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## essie0828

Sorry to hear about your mom. :hugs: Epilepsy sucks. My aunt has it, she cant drive and has suffered some terrible falls. One down a flight of stairs helping my cousin move into the dorm. Its really bad sometimes, sometimes she's normal. Its a very odd disease. Her grandson has epilepsy as well. The older people in my family say "it skips a generation". Kind of folkloreish but I see where they get it;) It seems to do the same in your family. Do you have epilepsy yourself lilesmum?

I think dietary management is a big thing with those disorders. Also have to start keeping watch on her little kidneys and liver. Her cbc came back a little dodgy in those areas once when she was particularly ill back in October. The kid just couldn't shake a fever, always had cold type symptoms and very lethargic/hypotonic. No one could tell me why. I had her see so many doctors and each was kind of stumped. Im wondering now if she wasnt having complications from one of these metabolic disorders. :nope:


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## lilesMom

From what I read it seems infections are more serious, 
Ie harder to get rid of.
Thank God ye will know from now on. 
They can take proper precautions xxx
Hugs
Hope ur ok now. 
Was a big shock for ye xxx

No I don't hve epilepsy thank God.
Simons comes from the area of his brain damaged by stroke
But it has skipped alright :-D
Hoping Simon won't hve it forever 

Still no af 
But still bfn, doh


----------



## lilesMom

My b and b is gone weird
Answered u but it's gone,again
Still no af.
Been getting bfn 
Got new tests in post this eve
very faint pos.
I Sid think I ov a little bit late this month
So I'm hoping that's why it's late.

How ye doin xxx


----------



## essie0828

Ha! A line is a line! Congrats! :happydance: You wasnt kiddin when you said you get pregnant quick :haha:


----------



## lilesMom

I'm still a bit unsure
It was ridiculously faint
Butvit was eve and I drink lots.
I'll do a proper one inthe morn
How ye doin Xx


----------



## essie0828

Are you going to keep testing or go see the doc? Hehe. So Excited and happy for ya! 

We are doing well, going through some transitions in DD's therapy where she is almost 3. She is aging out of early intervention but we are going to delay pre school until we have more info on her condition. So we are setting up at home therapy sessions and attending some speech clinics at local universities. I have her exit assessment from early intervention but I havent read it yet. Those sorta depress me sometimes so im saving that for later. Its been a good day so far, not gonna change it. ;)


----------



## lilesMom

I'll do both :-D
Prob go to Doc tomorrow.
Hayley is growing up on us, hee hee
Is it her same therapists at home
Or New ones

Gotta give munchkin bottle abs meds
So be gone now for a bit Xx


----------



## essie0828

I cant believe she is gonna be 3. Its very strange. She will have some of the same therapists, some will be new. It will just be mostly home based instead of at the rehab hospital. Still be doing OT, PT and Speech. Speech is where she is delayed the most, expressive language especially.


----------



## lilesMom

That's great ye won't hve to travel 
Hope New therapists are great 
Xxx

Stronger positive today 
Went to Doc,and got bloods done.
It's safe to saying preg now
Hopefully Il stay that way for a bit :-D
Xxx


----------



## essie0828

:happydance: :happydance: Aww, we wish you a happy and healthy pregnancy dear. :hugs:


----------



## lilesMom

Linee staying faint and nausea is gone.
I'm getting doubtful.
But wont panic just yet
I know it's not concrete proof yet 

How ye doin xxx


----------



## essie0828

Oh no. I hope its just dodgy tests. When will you see doc again for bloods?


----------



## lilesMom

She said first lot of bloods won't be. Back till next week.
If lines aren't proper by then, 
I'll get her to do beta.
I'm not sure either way 
So I'm trying not to thunk about it too much
I've Simon to busy me
How ye doin xxx


----------



## essie0828

Were keeping on keeping on. DH is having to fight a FMLA case to keep his job for missing in order to be with DD in the hospital. Its really a bunch of bs. He took documented, unpaid, federally approved leave under the FMLA act and they are hassling him. We just have to gather paperwork and prove DD is disabled, again, then attend a hearing. Its infuriating really. He works 7 days a week with no benefits for one of the largest federally backed companies in the nation and is getting hassled for taking time to be with his disabled kid. Oh btw, FMLA is the Family Medical Leave Act here. Before it was enacted by our government, people could be terminated from their jobs for illness or for taking time to care for sick dependants. It was ghastly. Women still have very little maternity leave here, and its all unpaid, but at least they dont get fired from their jobs anymore. So under that federal act, FMLA, an employee with one year of service under their belt is entitled to 15weeks of unpaid leave a year to deal with any severe medical problems or maternity leave. My husband qualifies all the way around but they are fighting every technicality on the paperwork. So we have to have the Union represent DH and fight to keep a job that is federally protected. I hate having to fight to make people be FAIR. I miss the days when common sense, your word and a handshake were all that was needed in a deal. And if that didnt work out someone got their ass kicked. :haha:


----------



## essie0828

Staying busy is best. Its tough and impossible not to worry :hugs: Ive been there too many times dear :hugs:


----------



## lilesMom

It's infuriating when u hve to fight,just,yo get,what,u,r,entitled to
Hope the,hearing goes,smoothly xxx
Some people,hve no conscience
Especially big companies. Xxx

I'm weirdly calm 
I'm kinda resigned
But hopeful to be surprised 
But my gut tells,me mc
But might not,be :-D
Missed a call from my Doc
They r closed now so Il ring tomorrow
My phone was turned on and,beside me
But,went yo voicemail 
Dumb phone

Xxx


----------



## essie0828

Aww sweets, all I can offer is my true understanding of your situation. If only my arms were truly long enough :hugs: There is still hope but in 32 years and several miscarriages, I have learned to trust my "gut". A womans instinct is something to be reckoned with. I hope your thoughts are wrong but you will have more chances dear. :hugs: It took me three tries to get DD, and 2 pregnancies lost since. Im kinda like you, I can get pregnant fairly easy, but I differ in most dont make it. I hope things work out. But i truly believe S will grow up with a sibling, or a few ;)


----------



## essie0828

So I sort have been struggling with this whole genetics issue. You know the saying "ignorance is bliss"? I have a serious worry and anxiety about having another child. If anything I say offends anyone, I beg forgiveness now, but now that I know sometimes I think I should stop trying to have babies. God knows I want another squishy baby. I just cant get past the worry that another child may be disabled because DH and I carry some gene. It's not like we met at a family reunion or anything, but we are from the same small town. My family have been in the area since they came from England and Ireland. Half of DHs family is from another part of the country, but his mama is from a family like mine, lived in the area since it settled. Its just so confusing and so profound. Some disorders on this gene named in DDs genetic report, exhibit Marfan Syndrome like features. Several members of my family are above 6'6". DD has always been above 90th percentile in height. Large stature is a Marfan Syndrome symptom. So many things are coming to light with this genetics testing, its sad and enlightening.


----------



## lilesMom

Doc confirmed what I thought
Hcg only at 43, far too low.
another beta on Mon to confirm
I actually feel better knowing rather than just suspecting

Um gonna ask fir genetic testing before anymore ttc I think.
I totally understand where u r coming from hon.
I'm not sure on anmorttc either way

Did they give u a percentage chance non another child inheriting it
My bro and sil second child was born with anancheply
They were told 50:50 chance of it again
They hve 3 healthy kids since.
Hugs xxx


----------



## essie0828

Im so sorry sweetie :hugs:

From what I understand, if dh and I are both carriers of this recessive gene, then there is a 25% chance of a child being affected. But in the end its basically the roll of the dice. Genetics is an area ive only slightly dabbled in. There is a ton I dont know. :(


----------



## lilesMom

Hugs honey xxx
A 3 in 4 chance of an unaffected child sounds good odds
But I understand ur,fear xxx
Could u cops with 2 speacial needs kids I'd it happened?
That's what I ask myself.
Which is why it will be a bit if ever before any ttc for me
I'm thinking maybe I should just be gratefull for Simon
But my mins could change later on.
Xxx
Hugs hon


----------



## essie0828

I think the same. Its just way more scary being pregnant now. The last MC I had ended in an infection that almost killed me. DH had to care for DD for a week. I am just chicken to try again. But im not ready to be sterilized either. Its a hard decision. :(


----------



## essie0828

And your spot on about being grateful for S. He's such an awesome little guy. ;) We really are blessed to be around these kids. 

DD has made a huge leap in development of her motor skills. Her independent walking and endurance have made the most progress. Ive lost 8lbs chasing her! She is in escape mode at all times. If the door is cracked she is out and headed to our car. She can walk anywhere around our place unassisted except stairs. She tumbles a lot, and due to tightness in her lower back and hamstrings, she cant go from a sit to stand. She still has to pull up. Shes getting closer to standing on her own though. Ive been getting videos and sending to family. Most break in to tears when they see her go. Im just in awe really. In the past 2 weeks she has changed so much. Her body shape has changed and she has put on a little weight. Her muscle tone is better. She still has weak spots but her whole posture is better. Its very strange. I have been supplementing her B12 every since we got the MRI results. Can this be the result? DD said "hell" yesterday. I still think it was a dream but DH heard it. DD was going at the kitchen sink and i had just placed a knife in there. I said "Oh Hell!" DD in amongst her baby babbling "ba ba ba fop fop kk kk hu hu hell" then giggled. :dohh:


----------



## lilesMom

Aw that's brilliant 
She sounds like shjust took a huge leap
Its brilliant when they do that xxx
I can't wait till a has the freedom of walking 

How did u know u had infection hon.
I've been dizzy and feeling crappyvthis eve.
Prob just paranoid


----------



## essie0828

I hope your feeling better dear. How did things go at the doctor? 

I just felt a little off before going into hospital. I had been to the doc and was being treated for a uti. I thought i was feeling crappy from that. Tired, weak, night sweats, but nothing like a raging fever or anything. It wasnt until the D&E that they found the infection in my uterus, caused by my body retaining the fetus. I was almost 14w at that point though. I really hope you are feeling better hun. Thinking of yall. :hugs:


----------



## lilesMom

Just had bloods done a the Doc.
Results should be back by tomorrow.
I just feel kinda drained
But am on antibiotic for sinuses
And my eyebrows are falling out
So thyroid could be dipping again.
I'm all problems :-D

How ye doin Xx


----------



## essie0828

You poor thing :hugs: I hope you are able to rest some. Any word from the blood test?


----------



## essie0828

We are doing good. Battling DDs tight muscles today. She over did it a bit yesterday and so did mama. I sprained my ankle :dohh: DD has always had a bit of tightness in her hamstrings, toosh and lower back. Well with all the walking and stairs she is tight and kinda grumpy about stretching. I bet she is sore. :( Her feet were sore from the braces last night. The little bug let me rub them for a long time and she was clearly loving it. Walking all-day in hard plastic afos has to be like walking in steel toed boots on concrete all day. Ouch.


----------



## lilesMom

Hcg levels still too low.
Being sent for ultrasound 
But it seems sure now.

Ibknow


----------



## lilesMom

Stupid freezing phone 
Afo def don't look comfy.
U would think they should have cushioning inside


----------



## essie0828

:hugs:


----------



## lilesMom

Sorry been mia
How ye doin xxx

Looks like this preg might be ectopic
Not sure yet
Was at the hosp today
Back again on thurs.
Sorry we bothered with ttc now
Should hve just been happy with s

Hope all's well with ye xxx

Any progress on treatments or testing for hayley xxx


----------



## essie0828

Hi sweetie. Sorry Ive been MIA as well. Been thinking of y'all and I hope everything goes well tomorrow. Ectopics are scary :hugs: Its always a risk to ttc, it just seems way more scary now when you already got one little guy here on earth depending on ya. Dont lose hope on more babies just yet ;) Something tells me you will get another shot at this someday. Love to you all. :hugs:

We have a little more information on DDs condition and blood tests have been ordered for next week. If she shows elevated levels of cystine, homocystine, or methionine then we pretty much have a diagnosis. No further genetic testing will be offered. If blood tests are inconclusive then we may be offered another round of testing that will include Dh and I. Things are so crazy right now. DD progress is nothing short of amazing. Everyone is noticing. As heartwarming as it is, its alarming. I really think she has been very ill and we have been ignorant as to why. Im beating myself up over not doing the MRI sooner. I should have. I trusted that she had CP and i struggled with exposing an already damaged and developing brain to sedation for that amount of time. Ugh! Im so stupid! If she does indeed have this metabolic disorder, its treatable :cry: I feel I have missed so much priceless time. We could have been changing her diet, we could have been giving her Betaine, we could have been giving her B12 injections. I feel useless. Thank God for DD keeping me busy. She is amazing. She is mocking me, a lot, too much really :blush: Picking up a few curse words in the past WEEK. She is still using signs but she is combining them with words to form sentences. Tonight in the bath, she tooted, and the smell was no less than wicked. She signed "all done" furiously and said "Up up mama, I poo." This child was not speaking a month ago. I am flabbergasted. Shes identifying when she burps. She asks for a bath every night by dragging me to the stairs and saying "up up" while signing bath. She never did that stuff before. Shes a total stinker and lazy with the therapists. We are totally doing in home therapy and trying to avoid illness in DD and she is taking advantage. This is her turf and she is trying to call all the shots. She is responding to requests more and more. Its really almost unsettling. She still can have a few bad days a week but they are diminished. Her endurance is up, way up. She can go wide open for 6 to 8 hrs straight before crashing for a nap. She is wearing me out most days. Love it! We have changed her diet some and may end up going to a vegetarian type diet. Ive added as much b12 to her diet as I can until we get more news. Something has changed, something is helping, but I cant say for sure as to what.


----------



## lilesMom

That's fab she is so much better hon Xx
Does she hve mild cp or is diagnosis changed totally of tests confirm? 
That's brilliant her speech and awareness hve come on so much xxx

Cautious good news fir me today.
Looking like normal preg again
But too early to tell if viable.
Fingers crossed
Afraid to get too hopeful :-D


----------



## essie0828

:happydance: Thats good news dear. Thankful its not ectopic :hugs: When will you get another scan or bloods? 

She still has some mild cp damage that is visible on the MRI. I'm not sure if they change her diagnosis or just add to it. I cant wait to see the blood test results. Of course the geneticist is at a conference or something and cant send the orders until next week. I hate this waiting and not knowing what to do. In the mean time im reading everything i can find. I really hate figuring out genetics. Its so confusing and I have forgotten the terms over 15yrs. :dohh: So i have three windows open to read one article. Dictionary and wikipedia open all the time. And that time is limited to when DD sleeps now that she is on the move.


----------



## lilesMom

Multi tasking and reading are hard to do together alright.
Xx 
Hoping u get ur tests soon hon. Xxx

My blood results this eve put me back again.
Only up 50%, not doubled
They want me back Sat for bloods
And Monday for bloods and scan
Argh. 
I'm back to fairly sure things aren't gonna end well
Fed up of not knowing
And I can't bring s with me
I've left him more this week them I'v e done his whole life

Sorry for the rant :-D
-


----------



## essie0828

You poor thing. :hugs: Im glad you have people to keep him and help out. I was in the same boat last year around this time. I had to leave dd more then than ever. How is he doing? Adjusting well to being without mama some? Hayley did better than i expected with it.


----------



## lilesMom

Sorry been busy
Goin to hosp every second day and trying to make munchkins food
And do his therapies and still clean the house.
I'm wrecked from it
He is happy still 
But it's hard yo squish his therapies in while missing time


----------



## essie0828

Aww sweets let the house go a bit and have a rest. There will always be something needing cleaning but just forget it for a day or so if you can. I understand though. Sometimes its not an option. I really hope you get some good news hun. :hugs: Happy (late) Valentines day sweetie :flower:


----------



## lilesMom

I got good news
We saw a,heartbeat
Measuring behind but that happened with Simon too
Was expecting bad news
So I was wrong :-D


----------



## essie0828

Thats Wonderful!! :happydance: Congrats mama :hugs:


----------



## lilesMom

Thanks hon
How ye doin?


----------



## essie0828

We are snowed in and expecting an ice storm tonight. :wacko: Lost power today for a few hours and will probably lose it for an extended time if we get enough ice to break the trees down. Had over a ft of snow from Monday, temps in the -20°F range, and now ice. Done with winter! DD has had a blast in it though. Thinks snow is yummy, lol. How u getting on hun?


----------



## lilesMom

Oh man. Hope the,weather improves soon x
Our buggy is broken and it's raining lots so we r stuck inside
Was getting peed off but u. Def hve it worse weather wise 
Lil mab is good 
Saying more sounds again
Sleeping better again
And in good form
So we r doing bettrrv:-D


----------



## essie0828

Glad to hear that hun. Sucks about the buggie:( but when its rainy and cold, you dont miss much ;).
How you feeling? Is it sinking in that you are pregnant! :happydance:

Thats weather in KY for ya, lol. There's a saying here, "If you dont like the weather, stick around another day." We get a crazy mix of weather. We have finally thawed out some now, temps dipping into single digits sometimes at night but above freezing during the day. Not long till we will be having some weather similar to yours. Rain! Lol. Spring here is wet, usually. Soggy, messy, cold and wet. DD loves rain, she laughs when we are caught out in it. Goober :haha:

We still have the blood tests to do for the metabolic disorder. Didnt risk driving with her in this slick stuff. She has an eye doc appointment tomorrow, trying to square away the orders so we can make one trip.


----------



## lilesMom

I'm still half hoping bad half afraid 
Hope is starting to win though :-D
I'm planning in my head so hope things go well now
Hve ny dating,scan March 26
Won't be too long coming in :-D

Glad ur,weather is thawing x
We get a funny nix too 
Was snowing this morn 
Back to rain now

Hope blood tests go well 
Would it be better if they confirmed? 
I would hve answer and know how to treat 
Or us there still hope its not?
Sorry if stupid qs xxx


----------



## essie0828

Keep your hopes dear, they are precious things ;)

I'm not quite sure how to answer that honestly. I really dont understand this metabolic thing well enough. The more I dig the more questions I have. Too many unknowns to say. I absolutely want to do SOMETHING, but I dont really want to see another diagnosis. The treatments available don't help every type of these disorders. So knowing wouldn't guarantee us that Hayley will respond to treatments. I'm just taking it as it comes right now. We will see genetics again March 20, close to.your dating scan ;) and by then we should know. I want to be tested myself. I want DH tested as well. That may not be offered if her blood tests confirm either methylmalonic aciduria or homocystinuria. Its a waiting game for now. :hugs: to y'all especially the squish.


----------



## lilesMom

Waiting is horrible xxx
Hope they sort things out for ye with tests soon.
Most important thing is hayley is doing well xxx
Ur brain would be addled from the possibilities 
Main thing is ur doing all u can fir her
And hve good docs on ur side
Xxx


----------



## essie0828

Phone ate 2 of my posts! That's so aggravating :growlmad:

How are you doing!? Giggled like a schoolgirl when I seen the ticker:haha: So freaking happy for you! How's the family? S? Your mom?


----------



## lilesMom

Argh phones!!! 
I wasn't gonna do ticker till,after scan
But f it :-D
Gotta hope 
I woke up with,a bump yest, so hoping that's sign things r ok
I actually bought mat clothes today.
I'm planning lots in my head too
Fx things go,well cos I'm attached now :-D

S had feeding clinic review today
He got discharged cos he is,so good :-D
All of them were saying how great he is doing.
Nice to hear.

Hope,all's well with ye Hon xxx
How's hayley? X,


----------



## essie0828

Hi hun! Hows it going? That's wonderful news about S! Im sorry if i asked this already, but are you still doing erythromycin with him? Aww hun thats wonderful. A growing bump is a good sign, :thumbup: you enjoy those mat clothes;) they are so terribly cute :haha:


DD is having a rough time with feeding and constipation right now. She has had a minor cold as well but that was nothing compared to this. I've gone back to using a daily stool softener with her. No results from blood tests. Was expecting a call but haven't got one. Will call later today and check. Weather is really bad here again, another 10 to 12 inches of snow on the ground with more falling as I type. This is on top of, 12 inches of snow last week, and a 2 day soaking rain in between the snow. Flooding is pretty bad. Our ferry to cross the river is down, its not a big deal for us but some people are stranded till the water recedes.


----------



## lilesMom

Yeah he is still on erythromycin
It helps with wind a lot
Ans reflux a little so it's worth it I think
S is on stool softener all the time
On 15 ml a day now
He always increases as he grows
Otherwise he struggles again
Its so hard to get a balance some days
He can hve very loose nappies sometimes 
Depending on food
But if I reduce softener it messes things up for him
So I don't anymore 
S isn't a great drinker since he now loves food
Doesn't help but I don't blame him
He knows too much liquid kills his reflux 
We are gone from feeding clinic cos he isn't really choking anymore thank God
And he is eating more variety
One less clinic is nice :-D

We had a teeny bit of snow earlier in week
But it's milder now
Hope ye get freed up soon Xx


----------



## lilesMom

Hope results r back soon hon xxx


----------



## essie0828

Happy 10 weeks Mrs Preggo ;) Hows the bump? Hows S? One less clinic is awesome, WTG S! 
The erythromycin sounds like its working. Thats good news! I think Hayley may benefit from it. Shes having a tough time right now. Eating very little solids again and constipated. Still no test results but Monday looks promising. Off to persuade a cranky girly that bedtime is a good thing :haha:


----------



## lilesMom

Erythromycin is,def worth a try hon
U can always come off it again if it doesn't suit her
Give it a,few weeks though.
I saw most difference after 3 or 4 weeks.

Hope bedtime went ok :-D Xx 

I'm getting nervous again.
Want my scan now but half dreading it too :-D
Not really sick or anything
Lack of symptoms annoying me :-D
U would think I'd be grateful :-D


----------



## lilesMom

Some bleeding this eve
Feck sake
Why didn't it happen sooner.
Hope all's well with ye Xx


----------



## essie0828

Oh no! Have you been to the doctor since the bleed? Sometimes its nothing hun, just get checked if you can. :hugs:


----------



## essie0828

Hayleys blood test results and urine test results were all normal. On to genetics March 20th.


----------



## lilesMom

Hve a scan tomorrow Xx
Il update then xxx

Glad results r good xxx


----------



## essie0828

I really hope everything goes well. Thinking about ya :hugs:


----------



## lilesMom

Scan confirmed
Erpc tomorrow 
Doh
Hope all's well with hayley xxx


----------



## essie0828

So sorry sweetie :hugs: Dont let this stop you dear. If you want another little one, take your time, heal, and get back on that horse. 

Hayley has a stomach bug today. Vomiting and pooping everywhere, poor girl slept most of the day, and we missed her eye doc appointment today. Had to reschedule for April :wacko:


----------



## essie0828

Hi hun. Thinking of you. Hope all went well. :hugs:


----------



## lilesMom

Thanks hon xxx
Home and all, just tired but fine x
Hope Hayley is feeling better x


----------



## essie0828

Glad you are home :hugs: You poor thing, rest as much as you can. :(

Hayley is doing better, her dad not so much. Hes sick now. :dohh: Men are the biggest wussies when they are sick.


----------



## lilesMom

Hope u Escape it xxx


----------



## essie0828

Happy St Patricks Day to my Irish friends! Im not really sure that y'all celebrate it like we do but Ive always loved this day. We get to pinch those that don't wear green, we drink green beer and have parades. Anyone with an Irish accent is a star on this day :haha: I hope everything is ok sweet Irish lady. Thinking of you and your family. Hope S is doing well, and your mum. :hugs: 

The flu has come to call on our house. All three of us are in its grips. DD had the vaccine and seems to be doing better than DH and I. She still runs a terrible fever if we dont keep her on anti fever meds. Ugh. This St. Pattys day I may have to opt for a green whiskey just to cut this cough.


----------



## lilesMom

Sounds the same as our paddy's day
but no pinching :-D
We all hve viral thing too
So not much celebrating 
Today is first day we r starting to feel normal 
Normal is very welcome back
Hope ye all feel better soon. Xxx


----------



## essie0828

Thank you sweets. My husband has been admitted to the hospital with pneumonia. Hayley is still fighting it but im a little worried as she is developing a cough. I have been to the clinic, steroids and antibiotics seem to be keeping me out of the hospital, for now. I still have terrible night sweats. This is the worst bug ive seen. Ive lost 14 lbs since it started, my husband has lost 30. He is in bad shape. They have put him off work for at least 2 weeks.


----------



## essie0828

Lol, about the pinching thing. I can see why it might not go over well as sometimes, pinching leads to punching. :p We didnt celebrate this year, stayed in bed watching the parades on tv. Blah. I hope all these viruses just die and leave ppl alone. Hope you guys stay well :hugs: rest and heal dear.


----------



## lilesMom

U too hon xxx


----------



## essie0828

My husband was admitted into hospital on Wednesday and he is still in there. Earliest they may release him is monday. He has MRSA in his lungs causing a terrible pneumonia. His kidneys are having trouble from all the toxins. He is very frail right now :(


----------



## lilesMom

Aw man. Hugs hon
Hope u r holding up ok xxx
Prayers he is better soon. Xxx


----------



## essie0828

He's coming home today! :happydance: Hes in a lot of pain but his chest xray had shown improvement with the new antibiotic they are giving him. It's so wierd, we all just started with a virus and my husband ended up fighting for his life because of an opportunistic bacteria. Hes off work for a while and it will be nice to have him home.


----------



## lilesMom

Hurray he is coming home Xx
Hugs hon. 
Ye hve had a hard time lately Xx
Fx for all good news now Xx


----------



## essie0828

Hey there! Just wondering how my Irish friends are doing. How's S? Hope things are going well and you are feeling better.


----------



## lilesMom

Thanks hon. 
Was a rough few weeks but I'm much better now thanks. Xxx
How are ye
How's hubby 
Sorry I've been a bit absent 
Xx


----------



## essie0828

No worries hun. Things get crazy and I completely understand. I have been absent as well, too much going on to concentrate on much of anything. DH is home but he is acting completely crazy. Its like he is in hyper drive all the time, making impulse decisions, being hyper sexual, being aggressive and mean, not sleeping. I don't know what to do with him anymore. Its bad enough that he has to see a doctor today to make sure the medication he's on isn't causing all these crazy symptoms. In the week he has been home he has argued with me everyday, demanded sex or said he would get it elsewhere, and got us evicted from our townhouse by calling the landlord and making a bunch of crazy demands for new appliances and carpet. He is saying all sorts of crazy stuff and is manic acting. He has always been a pain in the arse but not like THIS. Hes bever been this aggressive and distracted. I cant even let him drive because he almost wrecked our car twice with me and the baby inside. I really don't know what to do, I hate the thought of splitting up my family and I need his income to stay with DD and coordinate her care. But the things he is doing is becoming a danger to our livelihood. Sorry for the rant hun. I really have no other outlet and its nice just to let it out.


----------



## lilesMom

Oh God, hugs hon.
Could it be the tablets? 
It sounds like he is very unstable 
My Sis just split up with her partner cos he is mentally unwell
She tried to help for ages
But,all help was rejected so she had to go
Hugs, vent all u like
I'm here xxx
It does help,a little to get it out 
Would he hve to pay child support if u split
I'm not sure Howe yr system works 
Hope things improve x


----------



## essie0828

Yes, he would have to pay child support but the courts can be pretty lenient on that. I've heard some mothers say they only get $60 a month! That wouldnt pay the light bill. He has begged to stay and is trying to change but I am still weighing other options. He is seeing a doctor and they said the steroid treatments he recieved in hospital could cause some of this. He has always struggled with ADHD but its like 10 times worse now. He gets all wound up and says terrible things then cant even remember what he has said. I wanna explode most of the day, so now im in the docs office to start treatment for depression and anxiety. Thyroid is off again and swollen on right side. What a mess. DD is doing really well, picking up more words and constantly on the move. Love her, thank God I have her. Your poor sis, I feel her pain, 13 yrs and im ready to walk cause my husband cant cope. :( You are so sweet, thank you for listening/reading :hugs:


----------



## essie0828

Well DH just called and said the docs diagnosed him with bipolar disorder. Not a suprise really, he has been manic for some time now. What we were mistaking for ADHD was mania from being bipolar. Feels good to have an answer. He was so manic that they gave him a medication right in the office. He said he felt tons better after only 20 min. He was talking slower, making sense, and was very sorry for being a super ass for so long. Thats a 180° turn. Now to clean up the mess he made and see what the future holds if he stays on his medications. A womans work is never done.


----------



## lilesMom

Hugs hon. 
Great for diagnosis and drugs.
He could be a new man on them.
Here's hoping xxx 
My thyroid is screwy too.
I think stress affects it big time.
I've no eyebrows hardly again
I've been feeling tired and down.
Was thinking of antidepressants last week
But I've turned the corner again.
Stupid thyroid. Kicking us while we r down. 
Hugs honey. Xx
I'm glad ur telling me stuff.
I'm here for Good and bad stuff Xx
I consider u a friend hon. Xxx,


----------



## essie0828

Happy Easter! 

Thanks so much dear. I need a friend right now. DH has been behaving strangely today, very childish acting, not just regular men being brats stuff either. Like obsessing over toys and games and popcorn. He has been eating popcorn a couple times a day for a while now, no problem there. Problem is DD loves it but cant physically eat it without choking. Yet he insists on eating it in front of her and trying to keep her out of it even though it causes her to throw a fit and he gets all pissed that she wont leave him alone. :wacko: Ive told him to take it into another room or just ask for "popcorn time" and ill take the baby in another room. So far this has not worked. Im at my wits end with this. He has almost regressed to a childlike state and its like he sees our daughter as competition. Im afraid hes broken beyond repair. Hes talking alot about his childhood and toys and things. Im worried this new medication is causing more trouble than helping.


----------



## lilesMom

Wah phone ate post again

Hugs hon
Maybe it takes time for meds?
My bro is on antidepressants for years
Last lot didn't work
When he switched
It took 3-4 weeks tokick in


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## essie0828

Thanks dear, :hugs:

The doc switched his meds, they put him on an antipsychotic for the first try. It worked for a day then his behavior got worse. He is on an anti seizure med now and its helping a little better. Hes still nervous and manic but not to the extremes. We have to increase it gradually over the next week. Ive packed him a bag and told him I will take him to his mothers if he doesn't comply with the doctors. His pneumonia is healing nicely but hes been put off work another week for his mental state. My mom is helping me and if all else fails I can take kiddo and go back home. My pride hurts just saying it, but Hayley has to come first.


----------



## lilesMom

Hugs hon
U and hayley both come first Xx
I know it might sound harsh since he is sick
But u can't sacrifice both ur Health to try salvage his
Hugs, my heart goes out to u
My dad has suffered with depression as long as I can remember
He keeps taking himself off his meds
He thinks I'm good nowmaybe I don't need them
Then he goes way down.
Until finally Dr persuade him back on them
Stupid cycle he has repeated so often
But its all part of the illness
No quick fix 
Hugs again.

I'm in a bit of s funk
Seeing the glass half empty instead of half. Full at the mo
Think I'm heading for first af
I can't stop being sad.
I don't like it
I'm normally happy enough


----------



## essie0828

:hugs: hun. I hope things have turned for you :hugs: Honestly you deserve your sadness, its only a problem if it takes over. I went back on my antidepressant meds two weeks ago. I wasn't coping inhealthy ways and my health has suffered. Thyroid outta whack, periods gone (2 weeks late not pregnant), gaining weight, loosing weight, constant brain fog, moody and just miserable. Thats when I head to the docs. I usually cope very well to high stress, was a 911 dispatch operator for 5 yrs, worked several high stress jobs.....but now, im just not coping well. Although, in my defense, the shit is deep my friend. DH has flipped, we got bad news from genetics, DDs having feeding issues and her CBC is looking like she lives at altitude. Ugh. Its a mess! Genetics is checking kiddo for mitchondrial diseases and lysosomal storage diseases. Those are bad. Lysosomal storage disease especially. It kills kiddos. :( Im sick with worry and waiting on tests. DH cant handle the stress of talking about it. It almost breaks him. So I feel kind of alone in this. His mental health is fragile, DDs overall health is fragile and I feel like Im running in molasses. Sorry for the rant, it feelsgood to get it out though.


----------



## essie0828

So more bad news from testing. Hayleys pyruvate levels are low and her lactate acid/pyruvate ratio is high. This is evidence of metabolic problems on a cellular level. Im crushed. Terrified I called the on call genetics doc at 6pm on a Friday. From her home she explained to me that there wasn't anything I could do but watch Hayleys vitals and if she seems overly lethargic or is having trouble breathing to go to ER. We have to wait until the middle of next week to see if they have enough test results to diagnose anything. Most of these disorders seem to have no treatment, or a poor prognosis. The docs are being wierd, I feel like someone isn't telling me something. Im utterly terrified.


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## lilesMom

Oh God
Hugs hon xxx
Hoping hayley and u get some good news on tests soon
I hate when u feel docs aren't being fully straight with u
Hope u get some answers soon
Good answers I mean xxx

Hugs xxx


----------



## superfrizbee

So here it goes. I hope you ladies dont mind me dropping in and your CP troopers are doing well. 

DS is 6 months and at 7 weeks he had a stroke involving the thalamus on both sides of his brain. Luckily the neuros aren't concerned about the left side as the white matter and veinous system is intact. The right sided infarct is a bit bigger and they've cited "evidence of emerging left dystonic hemiplegia". My DS is doing really well and they said it wont affect him cognitively so we have loads to be thankful for! That said it's still tough and I'm struggling to come to terms with it - especially the unknown - how it will affect him long term. Does it get easier?


----------



## lilesMom

Hey welcome.
My lil munchkin has right sided hemeplegia due to a,stroke,at birth.
He also has epilepsy.
His infarct was quite large.
It affects movement right side, oral motor right side and has epilepsy we haven't been able to control yet.
He is doing wel though but progress can feel slow.
They all vary so much with cp
But I think the scary feeling,as a parent is the same
Hugs.
It gets better in that u get ur head round it a bit better.
But obvs always bad days like with everything.
Any qs just ask, we will try to answer 
Xx


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## lilesMom

Essie hope u and hayley r doing ok hon xxx
Sorry I've been absent
Just been very busy xxx


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## superfrizbee

Thanks for your reply. I see your ds is nearly 2? How is he doing developmentally (if you don't mind me asking of course). I've just started weaning ds so unsure of oral motor skills. He manages to breastfeed but does splutter sometimes, although not every feed. Do you mind if I ask how your little man managed his milk feeds? SALTs have recommended I keep him on smooth purees for now then we'll go to a feeding clinic in a couple of months to see how he's doing. Any info you can give on your weaning journey I'd be grateful of! It's such a minefield and I'm trying to stay off google where possible as it tends to make me feel worse. :flower:


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## lilesMom

Hey :-D
Simon had bad reflux 
But apart from that he was fine with milk
Wad fine with purees too
Got the hang if them fast
He was always a hungry little man :-D
Its textures and solid foods like meat or anything with lumps
He throws up if he eats potatoes 
But nit sure if it's a reflux or a texture thing.
He always got in better with porridge than with rice.
He constipates easily due to a slow push in his bowel.
But things that are issues for Simon won't necessarily be problems for ye 
Xx
It's a lack of sensitivity in right side of his mouth is the problem.
So we try to make him more aware of it
Using nuk brushes etc to stimulate the muscles.
And a speacial face massage
Ur slt will advise u anyway hon.

S can't walk or crawl yet.
He can mire or less stand with afo and my support.
He is progressing all,the time
But slower than other kids.
He can roll, sit, lie down,andsit up again.

His speech is affected too
But can say a few words.
It's because of where his stroke is 

There are days u wonder why us
But he is a,great little guy and that's what matters 
Xx


----------



## superfrizbee

Thanks for sharing your experience. Simon sounds like a remarkable little man! I know what you mean about "why us"... x


----------



## lilesMom

He is a,great little guy
Very giddy and full of mischief.
How ye doin 
It is,a big shock at first xxx


----------



## superfrizbee

Some days I'm ok and very upbeat, some days I'm a teary basket case and I worry about his future and if he'll be unhappy, bullied etc. I feel bad moaning because in the grand scheme of things his cp doesnt seem that bad but I worry about the next milestone, speech etc and I struggle sometimes to stay in the present if you know what I mean?


----------



## superfrizbee

Btw, you mentioned nuk brushes... can you please tell me what they are and what you actually do with them?


----------



## lilesMom

We all hve ourbad days hon.Xx
I try to keep in my mind that with,any child u could be thrown a curveball
Along the way.
With our speacial guys we hve warning of what they might be
And the experts to help.xxx

Nuk aren't exactly brushes 
Tget r hard plastic with different textured knobbly tops.
Hard to describe.
They r training for toothbrush.
U just use them inside the mouth, along gums, tongue and side of cheek
Its just yo increase awareness of mouth and tongue
U can dip them in food t


----------



## superfrizbee

lilesMom said:


> We all hve ourbad days hon.Xx
> I try to keep in my mind that with,any child u could be thrown a curveball
> Along the way.
> With our speacial guys we hve warning of what they might be
> And the experts to help.xxx
> 
> Nuk aren't exactly brushes
> Tget r hard plastic with different textured knobbly tops.
> Hard to describe.
> They r training for toothbrush.
> U just use them inside the mouth, along gums, tongue and side of cheek
> Its just yo increase awareness of mouth and tongue
> U can dip them in food t

Thanks hun. You sound like you have a really good mindset. I need to learn to get there too, so I can be strong for my son. But truth be told he's already super strong in his own way, like your little man. Oh I see about the brush! Is that something you do everyday? How long do you do it for? Sorry for 20 questions... i'm trying to get my head around all of this somehow! X


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## lilesMom

I'm not this good everyday :-D
Def hve doubts,and difficult patches too.
My phone froze earlier, could post but not type.
Yeah I should do it everyday 
But he is teething so bad at mo he won't let me
Just do it as long as he will tolerate.
No strict rules on it.
It sounds like A is doing great going by ur journal Xx
Ur Mom sounds,amazing too.
I'm sure ur doing just as well as her. X
It's not easy but it is worth it. :-D


----------



## lilesMom

Essie, I'm worried now
Hope ye r ok xxx


----------



## superfrizbee

lilesMom said:


> I'm not this good everyday :-D
> Def hve doubts,and difficult patches too.
> My phone froze earlier, could post but not type.
> Yeah I should do it everyday
> But he is teething so bad at mo he won't let me
> Just do it as long as he will tolerate.
> No strict rules on it.
> It sounds like A is doing great going by ur journal Xx
> Ur Mom sounds,amazing too.
> I'm sure ur doing just as well as her. X
> It's not easy but it is worth it. :-D

Thanks for all your encouragement and advice. Do let me know if I can ever return the favour. Simon sounds like a little champion too. He's come through so much and I'm sure is a credit to all your love and hard work too x


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## lilesMom

Thanks hon.
Bit of a sucky day today
His epilepsy is gone,a bit bananas.
But it will get better :-D
Hope all's well with u. X


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## superfrizbee

lilesMom said:


> Thanks hon.
> Bit of a sucky day today
> His epilepsy is gone,a bit bananas.
> But it will get better :-D
> Hope all's well with u. X

Oh no :( that must be so hard to deal with. Is it a daily thing for Simon? Is it a case of trying to find a med or combination of meds that work for him?

I think you guys are amazing for all you've been through, to still be smiling at the end and then asking if all is well with us! We're ok ta. Baby steps! Hoping for some sleep tonight now mr is off the antibiotics that upset his belly. He is a shocking sleeper anyway though. Oh well, if not it's extra cuddles for me! The last two nights I've fell asleep holding him and woken up with a sore neck! X


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## lilesMom

It's,a daily,thing.
Multiple times a day
but,they're partial seizures
Not full blown drop down one's.
He is on 2 meds but they,aren't working,yet.
Keeping fingers crossed for solution soonish.

S sleeps in my arms, 
Between epilepsy and,reflux I wouldn't get sled otherwise.
He has improved a lot reflux wise.
But I'd get no sleep from worry and habit now :-D
No sleep is tough, hope y get a good night tonight x


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## superfrizbee

Wow that sounds so tough. Both the seizures and the sleep. I really hope they find a combination that works for him soon. I had ds's physio assessment come through the post today, it wasn't exactly fun reading. His physio is coming tomorrow so hopefully she can answer a few questions and queries then I can work out how I feel about it. X


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## lilesMom

He has had seizure free patches
really hoping we get back to that soon. :-D

It's weird how seeing it on paper makes it seem worse.
Just remember u r looking after him really well
And he is getting the help he needs
Early intervention brings them on so well
We will help them be the best they can be.
We will give them care, love,and happy childhoods.
A lot more than some "healthy" kids hve.
Xxx


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## superfrizbee

Very true hun! X


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## superfrizbee

Did you ever find the physio hard to replicate at home? Sometimes I just don't know if I'm doing it right! I wish I could make it feel more fun. I don't think I'm doing a very good job at it at the moment is all and don't know how long I should be spending on it. 

How are you guys doing? Up to anything nice this weekend?


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## lilesMom

Yup,def
I watch her do it,and think yeah no prob
Go home,try to do it and it's nothing like hers
It used to happen,way more for first few months.
Still happens the odd time now thoug
Just ask her to tell u exactly what she is Droing next time
Our physio some parents video their sessions


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## lilesMom

As for how much time u ask her what to aim for
But I go by Simon too.
Like if he is sick or off form we do less
If he seems happy and is used to an exercise Il do more.
It gets easier to judge it


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## superfrizbee

I started videoing but my phone ran out of memory! Yeah it all looked fine while she was doing it and then I had a go, but still cant seem to do it now. Oh well. She's coming on the 19th so not too long to wait. It's getting him from his tummy into a sitting position. He just cries at me and wont let me bend his leg!

Hope you've had a nice weekend . X


----------



## dizzydizzy

I hope you don't mind me posting but wanted to offer some support as my daughter also has a diagnosis of hemiplegia (she's 2 with right hemiplegia and we live in Kent too). Personally I found the first year so hard, waiting for milestones and not knowing what to expect. She was always a terrible sleeper, but this slowly improved and she sleeps a lot better now she is two. We are very lucky and from an initial MRI that showed quite a lot of damage she has quite mild physical issues, obviously we never know what will emerge cognitively in the future but the paediatrician is really pleased so far.
I agree that the appointments and seeing it on paper is the worst bit- I usually have a hard day when this happens but it really has got easier as she gets older.


----------



## superfrizbee

dizzydizzy said:


> I hope you don't mind me posting but wanted to offer some support as my daughter also has a diagnosis of hemiplegia (she's 2 with right hemiplegia and we live in Kent too). Personally I found the first year so hard, waiting for milestones and not knowing what to expect. She was always a terrible sleeper, but this slowly improved and she sleeps a lot better now she is two. We are very lucky and from an initial MRI that showed quite a lot of damage she has quite mild physical issues, obviously we never know what will emerge cognitively in the future but the paediatrician is really pleased so far.
> I agree that the appointments and seeing it on paper is the worst bit- I usually have a hard day when this happens but it really has got easier as she gets older.

Thank you so much for speaking to me. Some days I'm ok but sometimes I feel a physical pain in my chest at the thought of whatever is around the corner, how it will affect ds and also a sadness at what we have "lost". 
It's pretty irrational as I know we have lots to be thankful for, and some days I can see the positives. I'm glad to hear it does get a bit easier. My son is a shocking sleeper too! Whereabouts in Kent are you, if you dont mind me asking? We're Rainham (Medway towns). 

Thanks again for taking the trouble to offer your support. It means a lot. X


----------



## dizzydizzy

We are in Ashford. Have you had a look at the hemichat website? or found them on facebook? They are a UK charity who arrange meet ups for hemi families throughout the UK. I haven't been to any yet but the support on their facebook site is fantastic. 
Hemihelp is another website with info on that you might want to look at if you haven't already.


----------



## dizzydizzy

I've just read some of the last posts on your blog and it's really positive that your son is thinking of commando crawling. My daughter did that at about 11 months and then 'proper' four point crawling at about 14/15 months. She then walked at 17 months. 
I found that she grew so much stronger in every area as she started using various muscles to move. Her right arm and hand are the weakest area with only slight stiffness in her right leg.


----------



## superfrizbee

Thanks. I don't know if he will any time soon, but it would be great if he did. His left arm is pretty weak bit he uses it pretty readily and voluntarily, and brings objects to his mouth so fingers crossed. His tone in his arm is variable, sometimes normal sometimes stiff - it postures. Doesnt seem to be any stiffness in his leg but the physio says the muscles in his neck/truck/hips are tighter. It's early days in physio and milestones for us so hard to know how he actually is iykwim? I've stalked hemihelp a bit but havent heard of hemichat so thanks for sharing. I will def check that out, it's a comfort to feel like you arent alone. Your little girl sounds like she has done incredibly! Does she still have physio?


----------



## superfrizbee

Hi Lilesmom, just wondering how you and Simon are doing. Hope you're well. X


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## lilesMom

Hey hon
We r good thanks
Had Simons bday yest
Lovely day but very busy
we r both wrecked today :-D
How ye doin? Xx


----------



## lilesMom

Hey essie
How r u and hayley xx


----------



## superfrizbee

Aw happy birthday Simon for yesterday. Glad you had a good day and are alright :) we're good ta, it's dd's 3rd birthday on Weds and I have my best friend coming over from Australia at the end of the week who I've not seen for nearly 3 years, plus a week away in the New Forest towards the end of the month so June is going to be busy but nice, speckled with the odd appointment of course!


----------



## lilesMom

It's nice yo hve things to look forward to :-D
U doin much for dd bday?
I had my Bro 50th last night
Hve my nieces baby shower tonight.
Last night wad my second night out since Simon was born
Was really good fun. :-D


----------



## superfrizbee

The weather is looking nice for weds so maybe beach or zoo, will ask her what she fancies. Glad you had a nice evening out. They're pretty rare events aren't they! X


----------



## lilesMom

Both sound lovely 
Enjoy :-D xxx


----------



## lilesMom

Long time no chat
How is everyone Xx


----------



## superfrizbee

Hello! Nice to hear from you! I've been meaning to come in for a while but for whatever reason it never happened. How are you and Simon doing? I hope you're finding his seizures are more controlled now, that must be so hard. Is he working towards walking?

We're doing well over here. Don't get me wrong we have some tough times emotionally, but Alistair is coming along leaps and bounds. We're meeting a new OT on Tuesday as his last one has gone on maternity leave.

Xx


----------



## lilesMom

Sorry I read ur post yest and then squish demanded attention &#128521;
We r good ish &#128522;
Epilepsy. Still a problem, been referred to possibly see if surgery might be an option. 
But its,a long way off, if it happens at all. 
Slowly working towards walking.will be awhile
But he will walk ish assisted by me now.
Slow. Progress but any progress is good

Hope ur new ot is nice.
It canbe hard to change.
How are ye getting on ? X


----------



## superfrizbee

Aww hun I'm sorry about the epilepsy. How scary :( you know there's a group on facebook called parents hemichat and it's full of nice, supportive people. A good place to ask questions and I'm sure some kids from there have had surgery for seizures. There's also hemihelp on Facebook.

Yeah our other OT went on maternity. I'm also meeting a private OT later this month, not so much for now but for when he's a bit older and would benefit from more intensive blocks of therapy. Alistair is doing really well. Crawls, pulls up and cruising some. He can crawl up the stairs and pushes up on his hemi leg?? He also turns book pages and flaps with his hemi hand. He is determined to do things the hard way, which of course is great! X


----------



## lilesMom

Thanks :-D

He sounds like he is doing brilliantly 
Well done Mom and A :-D
S kind of pretty much ignores his right hand but is better with his right leg
I'm hoping with coaxing and age he will use his hand more
Do u hve many appointments? 
Ours slow down in the summer, 
Due to all their hols.


----------



## superfrizbee

Have you thought about constraint induced movement therapy? I put a mitt over Alistar's "good" hand and then get appropriate one handed activities he can do with his left. Maybe some kind of sensory box for S at first or messy play that you can do to get sensations through that hand? We did massage previously for awareness and the OT also said people do sensory brushing or joint compressions. Forgive me if you already do this, it's just things that have come up in therapy or that I have found online.

We're not too bad appointment wise. We were busy for a while bit at the mo we only have physio and OT every 3 weeks. We see the paediatrician and neurologist in October.


----------



## lilesMom

Yeah I do all them with him &#128517; he just doesn't like using it . He is better when epilepsy isn't playing up his seizures are focal, they originate where his stroke was, so interfere with areas stroke affected. 
He gets much more sensitive about his hand when epilepsy isn't controlled. 
If he just had cp he would be much further ahead now .
But no point in thinking that really cos he does &#128521;
He clapped today teo handed for the first tine &#128521;
And learned how to say grandad this week too.
So its been a good week progress wise. Yey &#128521;

Hope ye had a good weekend x


----------



## superfrizbee

Oh wow yey for clapping!! That's amazing! And yey for new words - bet grandad was thrilled too ;) how many words does he have? Sounds like he is aware of his hand then which is really good even if he doesn't want to use it much right now.


----------



## lilesMom

Yeah he does hve some very basic use of it so I'm hoping in tine he will use it more. 
Yeah I was delighted with clapping , been trying to teach him for yonks, yest it just clicked &#128521;
New words are always good too. 
Bad epilepsy day today , 
He is wrecked so bit of a write off therapy wise.
He needs rest.
How ye doin?
Ur pic is so cute.
Gorgeous kids &#128522;


----------



## superfrizbee

Sorry hun I thought I had replied ages ago but I obviously didn't! I hope things have improved for you and Simon since your last post? Any more clapping? I am trying to teach Alistair too but no luck yet. He will sometimes bang two objects together IF he is holding two, but he moves his right arm more so I guess we're a way off. We are good though and doing well in general. Thanks for the kiddies' compliment - I think they're utterly gorgeous, but then I am biased! ;)


----------



## annanouska

:flower: hi ladies. I don't post in this thread as it's not really relevant to us but I'm starting to wonder! I'm aware that "mild" cases of CP are often not detected until 3/5 years old (I hate saying mild like saying a little autistic :dohh: but can't word any better!). My son has just turned three, he is "different" but doesn't fit well in a box. We have been under the paediatrics for 18 months but everything is so rushed in appointments and I sometimes feel I dot get the time we need. 

-MRI scan shows widespread white matter changes (I believe this is common in cp?)
-he suffers from seizures and is treated as epileptic and life is massively better now he is on anti epilepsy medicine (but even then he doesn't sit great in a specific Epilepsy group!)
- he has always been "slow" he was late to sit, crawl, walk though he can now and can run and recently jump :thumbup:
- he has insoles from podiatry as he wears the shoes into horrific wedges as his feet roll in badly. He prefers boots to shoes and walks a bit odd, he turns his toes in sometimes walks on tiptoes. As he gets tired or sore he drags his right leg along more and more...it's hard as he doesn't do that all the time so they don't always see him dragging it. I feel his feet and legs bow in a lot too.
- developmentally he is getting there just slowly and learns everything in a really weird way...a whole group may learn one way he finds a different way!

I'm obviously not asking anyone to diagnose him but I feel a real idiot suggesting may it be cp to his consultant. He's had lots of bloods done and nothing has shown so far and it under a genetics team soon too. I guess I'm looking for more of an understanding to know whether my concerns are valid or not when mentioning to his Dr. I might just make him a special box to fit in :haha: x


----------



## superfrizbee

Hi hun, we're early on our cp journey so I can't claim to be an expert, but I can give you my ramble on the subject! Cerebral palsy is an umbrella term - it basically describes any movement disorder that occurs due to damage to the brain either in the womb, during delivery or in the the first two years of life. It's not always a very helpful term, as it's a massively broad spectrum of severity, it doesn't distinguish between what body parts are affected and there can be other issues from the brain damage as well as movement - i.e. epilepsy, memory issues, visual problems, speech issues etc. How are your son's fine motor skills? It sounds from what you're saying that it's his legs that are affected and he does seem to share traits with a form of cp called diplegia. I'm not saying that's what he has, but I would definitely mention it to your consultant. X


----------



## lilesMom

Sorry I've been Mia
Bad few days epilepsy wise &#55357;&#56842;
And mood wise, squish might need surgery for his epilepsy.
I'm a bit freaked but trying not to think of it yet
We won't know until he gets more testing done
Which could take yonks.


----------



## lilesMom

Welcome anouska
I would agree could sound like cp 
But cp is very broad term
But I don't think u would seem foolish or anything suggesting it to your doc
We weren't given the title cp for awhile
Even though apparently it was known by docs for a bit before we were told
When we were transferred to rehabilitative services they were surprised docs hadn't told us it was def cp
Ur welcome here regardless of diagnosis anyway hon xxx


----------



## lilesMom

Superfrisbee how ye doin
Sorry for late reply
Hope alls well.
No more clapping, he was teasing me &#55357;&#56842;
Alastair will get there too hon
Clapping is more complicated than it looks. .


----------



## annanouska

:hugs: anyone heard from Essie? Used to see her on the development thread but nothing in ages.

I wil mention cp to the consultant when I get and appointment. I'm hoping soon as he went into status for 30 mins with his epilepsy so his nurse wants him to get emergency meds.

We took a long time to learn to clap, wave, point all of them! It was very set he had autism but now his seizures are more stable it seems less likely. I'd like an umbrella term, I find it hard as he appears quite "normal" to most people....who haven't just had to carry him as he's dragging his leg along and fallen that much he's black and blue :dohh: we have been walking approx 18 months now and the dragging etc is all relatively new (past 8/10 months ish). The consultant did see him have his foot almost turned at right angles and I go"likely neurological due to the brain damage affecting motor function".

do you use wheelchairs or special pushchairs?my son is too big for his pushchair really but the special ones are so expensive! Short trips he is ok but walk around say a large supermarket and he starts dragging and falling.

We are off to our weekly special needs group now....one thing u can't understand unless u r there is how welcoming the special needs community is..l.except for a couple of the autism groups here...."no official diagnosis no help" x


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## lilesMom

I haven't heard from essie
She hasn't been on b and b at all according to her home page
I know she was moving
I'm hoping that sheis just busy or has no internet
If ur reading Essie, come back we miss u xxx

Yeah its hard not having a name for it
But even knowing its cp doesn't let u know outcome
But it does help u to get recognised by services alright
Hope u get some answers xxx 

We still use buggy
But he is getting too tall for it
Might hve to get special buggy in a bit


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## lilesMom

I'm always having people say but he looks fine
When they find out Simon has cp
What do they expect, horns &#55357;&#56842;


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## superfrizbee

Absolutely you're welcome here annaouska regardless of whether it's cp or not. Have you found any support groups on facebook? I go on Parents Hemichat. It's technically for parents of kids with hemiplegia (cp - one sided weakness) but there are those with other kinds of cp and it's great for advice, emotional support, venting etc. There are people there who could advise you on a stroller I'm sure. It's a private community and you have to be added by an admin but it means no one else in your friends list can see your posts. 

I'm sorry you've been feeling so down Lilesmom. I take my hats off to both of you ladies coping with epilepsy too. I'm very humbled by how brave and positive you are, and still reach out a hand to others.

we're ok ta, been mega busy and not had a great deal of time for physio which always makes me feel guilty. Alistair will start nursery soon 3 days a week when I go back to work and although the staff are excellent and will do so much for him (including therapy - the therapists will go in and see them), it is playing on my mind a lot.


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## lilesMom

Argh I typed and it wouldn't post
He will benefit too from nursery hon
Socially its great and will make him more independent 
He might come on by trying to copy his new little pals too
That's great his therapists go to his nursery
Our systems seem a bit crappy in comparison &#55357;&#56842;
Hope it goes great for ye x


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