Any Cerebral Palsy parents out there :)

[helloeveryone]

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

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

 

[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

 

[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 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

Looking forward to getting know y'all xxx

 

[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

 

[essie0828]

Hi ladies!

Welcome ladyluck What a little miracle you have. And what a fighter! It's great he's in mainstream school with his pals. 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 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 Hope things are well. How's Amy and the rest of your herd My DH grew up in a family with 4 kiddos, he said it was a madhouse most of the time. Update when you can. 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 How's he been doing? Hope he's doing great

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. 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.

 

[ladyluck8181]

Hi ladies!

Welcome ladyluck What a little miracle you have. And what a fighter! It's great he's in mainstream school with his pals. 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 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!

 

[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

 

[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

 

[ladyluck8181]

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

 

[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. .

 

[lilesMom]

Sorry dumbie here but what are afo ?

 

[ladyluck8181]

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

 

[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

 

[lilesMom]

Welcome hon xx

 

[essie0828]

Hi stick200p Welcome.

Girls I have been lazy with my B&B time. I've been popping on to read but not taking time to reply As you all know very well, things are busy with therapy and appointments. We're getting fitted for AFO's next Wednesday 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 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 Hope all is well momma

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

 

[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?

 

[essie0828]

Oh dear 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. 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.

 

[essie0828]

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 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.

 

[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

 

[essie0828]

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 Wtg momma for having live in physio for him It's really neat that his dad can do his therapy. And as far as the Xbox goes...your DS has good taste I would much rather play mine than work as well so I can see his point of view there. Lol.