Any Cerebral Palsy parents out there :)

[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

 

[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!!!

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.

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.

Hayley got fitted for AFOs today 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 He's so little they may need to wait a bit.

How is everyone doing?! 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!!!

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!!

 

[essie0828]

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 Their strength amazes me

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. along with the Speech and OT

 

[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

 

[essie0828]

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

 

[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 If they don't want it, they won't eat it.

 

[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 I never would have thought she would like that and she had a good poo afterwards.

 

[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

 

[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

 

[Foogirl]

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......

 

[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

 

[essie0828]

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

 

[essie0828]

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 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.

 

[essie0828]

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

Kick away little squishy man! Yay!

 

[essie0828]

Foogirl little Abby is beautiful. What a darling! My little Hayley has the same diagnosis. 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. Gosh I sound like I'm asking for an essay.

 

[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.

 

[lilesMom]

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

Hi to all x

 

[essie0828]

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

 

[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!

 

[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

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