Any Cerebral Palsy parents out there :)

[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

 

[lilesMom]

Essie hope u and hayley r doing ok hon xxx
Sorry I've been absent
Just been very busy xxx

 

[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.

 

[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]

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

 

[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]

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

 

[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

 

[superfrizbee]

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

 

[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

 

[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

 

[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

 

[superfrizbee]

Very true hun! X