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Any Cerebral Palsy parents out there :)

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


I hope this link works. Its a video of DD.
 
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. :(
 
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.
 
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
 
Thinking of u essie. Xx
Hope u r resting and healing xxx
 
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.
 
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
 
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
 
I am so very sorry nearlythere. I can't imagine how heartbroken you must be. Sending you love xxx
 
Oh nearly there so sorry honey. Xx
Crying for u here.
Hugs. Xxx
 
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.
 
Essie how u doin hon.
Hope it healing ok xxx

Nearly thinking of u hon xxx
Hugs
 

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