Any Cerebral Palsy parents out there :)

[lilesMom]

Essie hope u get fab,replacement therapists xxx
We r gonna hve a meeting soon to see if Simon should partly switch to local therapy place.
The one he is at has more stuff but less time for us I think
Not sure which is best

We do mostly pt and slt at home too.
With teensy bits of ot and play therapy
I'm a huge believer in play therapy
Easier on me and s :-D
I think 99 % of things can be turned into a game

Simon,made it across the sitting room fully today.
Wriggling and rolling but he still did it :-D

 

[happybeany]

Just hopping in to say hellooo and i have a 3 year old with cerebral palsy

 

[happybeany]

This is Harrison.. Hes now 3 years and we hot our diagnosis when he was 18months. He was was delayed in all his milestones and i was concerned when he was pulling to stand, but only cruising and tip toeing whilst doing it. The hospital took me any my concerns seriously, and we eventually had the MRI which confirmed his cerebral palsy.

He has hypertonic spas.tic diplegic cp, only really affecting his legs.. We used to have piedros and insoles to try and get him to put his heels down but it wasn't helping much at all. We now use afos even though they don't seem to be doing much good for his feet! His feet seem to be collapsing inwards (over pronation?) BUT his heels are down most of the time unless hes absolutely shattered and he forgets to concentrate on walking. H can walk without assistance, but falls often and does hurt himself and we have a maclaren major on loan from the wheelchair service for when he can't walk.

H has had speech therapy to help with his understanding and identifying, but we are waiting for more to help the words that he says be identifiable to people outside the family. At the minute, its really hard to make out what he is actually trying to say a lot of the time. He can use PECS but he doesn't like to!

Overall, hes about 6-12 months behind in different areas.... But it just means i get to keep my baby longer Hes so adorable and just the sweetest little man in the whole world i love him to bits!

 

[lilesMom]

Hey welcome Xx
He is gorgeous hon
Lovelysmiley guy Xx
I'm not sure if u hve read thread.
My lil guy is Simon
Had a stroke at birth
Diagnosed at 5 day's old
He has right sided hemeplegia, epilepsy nd reflux
But is the best little,man ever :-D
He is 15 months old yesterday :-D

 

[happybeany]

Heya! Its great to meet other cp mommies happy 15mo birthday simon!! hows he doing developmentally?

We aren't sure 100% what caused my LO cp but we think its that i had pre-eclampsia. I still think there's something that the doctors aren't telling us as to why he has it...There was a lot of mix up with my notes when i was pregnant. xx

 

[lilesMom]

I thunk my guys stroke had to do with the birth
They,delayed a,lot in getting him,out
Cp seems to go hand in hand with bad births And or bad docs.
Simon is,better than initial pic
But he can't crawl stand or walk yet.
Can roll and sit.
Has good trunk control and excellent head control.
Been warned it will most likely affect his speech
But so far so good with that.
He does hve some feeding issues
But his,swallow seems ok
He,really is the happiest little guy though
I'm lucky to hve him :-D

 

[lilesMom]

Essie how ye,doin hon?

Back to physio and ot in morn
August always goes quiet fir their hols
Liked the,break

 

[essie0828]

Hi ladies

Welcome happybeany! Harrison's a handsome little guy. Look what eyelashes and beautiful smile! My little girl walks on toes to. She's good in AFOs but cannot put her heels down unless she tries very hard.

Yay for Simon making it across the sitting room! Go buddy go!

 

[essie0828]

Everything is going pretty good here. We meet with a Dinovox representative in a few weeks to see about getting DD a "talker". It's a computerized pecs system. DD is a bit like Harrison though, she can use pecs but doesn't prefer it. I hope she takes to it because it's like her tablet. Her fine motor skills in her hands are just now getting good enough to manipulate the screen so I expect it will take quite a bit of practice for her.

 

[lilesMom]

Munchkin awake the,scut :-D
Talker sounds great xxx
Forgive my ignorance but what's pecs?

 

[lilesMom]

Physio and ot were delighted with his progress
They said that I was doing great work :-D
They r ordering his afo s.
So excited
She said she doesn't expect him to walk before 2
They don't use a walker she said
She thought it would rush him before ready

Hope all's well with ye xxx

 

[happybeany]

Harrison was just about two when he started walking. I cried so hard! I couldn't believe he started.. Our OT and PT didnt think walker would help h either.. He was really bad with balance and tended to just launch himself forward even testing the walkers out. He figured it out okay in the end... Although he still falls lots.

I sometimes panic that pre school will look at all his bruises and bangs, and call social services....hes so fearless and he throws himself around lol! I guess he must be like that when we leave him there too.

What are your kids like with other people? H is overly friendly, no stranger danger and it terrifies the life out of me

 

[happybeany]

Ooh pecs are pretty good if the little one takes to it.. Its a picture exchange communication system .. So they hand you or point to a picture in order to communicate what they want or need. It really got Harrison to understand asking for things, understand that when he asked and told us what he needed we would listen and respond to him

 

[lilesMom]

I was even thinking today whenhe finally takes a step up prob frighten him Il bawl so hard :-D
Simon tends to throw himself now from sitting
He finds it funny and it gets him where he wants to go
So I imagine walking may be the same
It was first day she started talking a bit about walking
So I'm taking it as a good sign :-D

Simon either loves u or has no time for u
He makes his mind up pretty fast about that too :-D
He loves young blond girls. He actually flirts!!!
He isn't the biggest fan of strangers.
But doesn't cry from them
He just gets really quiet
He is still a bit young to know how he will be with people yet
He is sociable when he wants to be though :-D

Ah, pecs sounds,very usefull :-D

Love to all xxx

 

[essie0828]

Hi ladies

Sorry it has took me forever to get back in here. DD has an ear infection and we have had a lot of visitors.

It sounds like Simon is doing really well, WTG mom! Hayley was almost 2 before she started trying to walk as well. He will get there, it just takes some extra figuring out for CP kiddos I think. The throwing himself around and giggling is too cute. He's happy to move himself, that's great!

DD likes almost everyone as long as I'm where she can see me. She will cry sometimes if people she has never seen get too close. She loves her therapists most of the time and will stay with one of them for a few min without me. Sometimes she won't let them pick her up though. She will wiggle away and reach for me. She loves watching little boys race around. The faster they run the more she laughs. And she has a cute little boyfriend at the rehab hospital, he wears afos and glasses and they always stare at each other. He checks out her braces and she checks out his. They are both mostly nonverbal and it's neat to see their gestures.

 

[essie0828]

Had the First Steps (Early Intervention) people here today with someone from the school system, they went over DDs 5 level assessment and discussed preschool options. I'm pretty bummed out. She has made progress but is still very behind. I've got these reports laying downstairs and I wont even read em. Blah. I'll get to em eventually. I'm in the process of rescheduling every one of our therapists but 1, a by weekly speech therapist. Everyone else(5 therapists) need new times. Holy crap! Most want early morning and we have an hour drive to get there. Kiddo is Not a morning person. She's usually not asleep until around 1am. I'm trying to dial back her bedtime but no matter when I do her bath and bedtime routine she fights sleep till midnight. If I have to drag her out of bed very early she will be a diva. Fussing and crying at the drop of a hat. This is going to be a fun adjustment. Btw DDs ear was really gross yesterday. The worst I've seen it, there was foul crud everywhere in her little ear. Took lots of gentle cleaning and antibiotic drops. Poor baby bolts when she sees that little bottle of drops. Hates them! And I have to wrestle and pin her to put them in her ear. It's a fight 3 times a day. I dread it as much as she does.

 

[lilesMom]

Oh no essie
Poor hayley gets a lot if trouble from her ear. Hugs
S gets cranky for morn appointment too
He sometimes sleeps till 11
depends how much he did the day before and if he slept properly aat nights.
I had my physio asking me did I know there was a little bit less with Simon
What a horrible way to put it
Plus its too early to judge how things will yo for Simon
He is really quick to pick things up with me so....
Its hard yo hear or read stuff like that Xx
I focus on helping as do u xxx

 

[essie0828]

Wow. That is a terrible way to put it. Hope that guy/gal bites their tounge really hard for saying that. He's not less, he's more. More opportunity for everyone around him to learn a thing or two. Ugh. People are stupid. On the days we get reports I always get bummed out. Seeing her condition in black and white hurts.

Ha! Glad to hear DD isn't the only late sleeper. Funny that Simon gets cranky then to. DD was a diva in speech therapy today. We met our new/ fill in speech therapist. I'm not real impressed with him so far. He's monotone and speaks too quietly. Hayley responds well to very animated people. I'm gonna miss Holly she could really get kiddo to work at talking. Met our new OT and I think she will be good but its a 9am appointment.

 

[essie0828]

I have finally made myself dig into these reports and have found there's good in with the bad. As always in life DDs ranking between 24 and 27 months in receptive language. That's almost age appropriate. She just turned 30 months a week ago. Her gross motor skills are at 15 months Just learning to walk basically and kinda stuck there. She has lots of work to do there. Her cognitive abilities are between 15 and 19 months. That's a tough one to swallow. But she has made a big improvement in all areas. For that I'm thankful and proud. Her Social Emotional skills are age appropriate at 30 months. She's always been age appropriate in that area. She's a charmer if she knows you. Everyone falls in love with her after a while. Her Self Help scores were 18 to 24 months. Her oral motor skills and feeding were in the 18 month range. She has lots of work to do in that area as well. Now to develop a plan to strengthen her motor skills so we can work at the others. I think her lack of movement hinders her development in other areas.

 

[lilesMom]

I was just looking at my lil sleeping beauty,thinking the,same essie
He is soo much more
So much love, happiness and laughter
He overcome more in his 15 months than she has prob in her life :-D
And is still smiling :-D