Any Cerebral Palsy parents out there :)

[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?

 

[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

 

[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

 

[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]

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

 

[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 😉
We r good ish 😊
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