Any Cerebral Palsy parents out there :)

[nearlythere38]

Thank you. Did they know at the time that he had a stroke or was that something you found out later?

I had a c section and something went wront with the spinal block and i passed out. I was later told thag i had almost had no pulse and ny blood pressure went very low. Sincr reading up on cp i am concerned this has deprived her of oxygen

 

[lilesMom]

My little guy was having seizures they were finding hard to suppress.
They tried 2 drugs that didnt work. Third one did thank god.
They had 2 theories at the time.
Infection or stroke.
He was treated for infection while waiting for MRI.
He was on anti virals and a few kinds of antibiotics.
After MRI they knew it was a stroke.
Theu coyld tell how large it was and what body functions it was likely to affect.
Simon has right side hemiplegia . Hypo muscles.
Left eye turned out. Also bad reflux (is getting swallow checked soon )
Also gets over stimulated easily.
Plus he has a heart murmur and possible epilepsy thrown in for good measure ;-)
He is also highly intelligent. Really sweet and super cuddly ;-)
We r lucky he is with us and so good.
They said his stroke was very big.
Hope u get good news hon. Xx
It is nice to hve a name for it and then a plan of action xx

 

[nearlythere38]

Aww bless him so much to deal. Must have been very hard for u going through that. Im glad to hear hes doing well. Ava had a swallow done too it was fine, just confirmed reflux.

We dont really get much interaction from ava. I think thats mostly down to her visual impairment though. She didnt smile until 4 months. And now we have to work hard blowing raspberries on her face to get a smile lol. She doesnt reach for anything or hold anything. No rolling over, unable to sit up even in a bumbo o jumperoo. Were working on a sensory box to use with her and the occupational therapist has just started coming so im hoping it may help.

 

[essie0828]

Nearly there. welcome Hope you find out some answers soon hun. In the mean time you will love what the occupational therapist will do for her. It's my favorite kind of therapy for DD, she responds so well to it. I'm sure your little squish will benefit

 

[lilesMom]

Aww bless him so much to deal. Must have been very hard for u going through that. Im glad to hear hes doing well. Ava had a swallow done too it was fine, just confirmed reflux.

We dont really get much interaction from ava. I think thats mostly down to her visual impairment though. She didnt smile until 4 months. And now we have to work hard blowing raspberries on her face to get a smile lol. She doesnt reach for anything or hold anything. No rolling over, unable to sit up even in a bumbo o jumperoo. Were working on a sensory box to use with her and the occupational therapist has just started coming so im hoping it may help.

I'm hoping test goes well for simin too.
Glad it went well for ava xx
Did they say anything about when reflux may end?
Having crappy reflux dsy here x
Therapy will def help her x
Thats tough she is finding it hard to interact. Hugs xx

 

[essie0828]

Poor Simon Hope his reflux calms soon.

 

[lilesMom]

How are ye essie x

 

[essie0828]

hun, we're doing pretty good today how's the little milk monsters' reflux doing?

 

[lilesMom]

Glad it's a good day. Xx
Better day today. Reflux still crappy but less so than yest ;-)
Least it isn't worse ;-)
No.news really here.
Looking toward to and dreading tests next week..
Looking forward to answers but nervous I'm case not the news we want to hear ;-) xx

Hi to all xxx

 

[nearlythere38]

Lilesmun they said we would see an improvement once she started solids. We have seen an inprovemdnt but it hasnt gone away altogether. No medication works for her, i guess because its related to low tone i her trunk, so i expect she will continue with some reflux until her tone improves.

My baby girl was baptised today such a lovely special day

 

[lilesMom]

Thanks hon. If swallow goes ok Mon week.we will ne starting solids. ;-)
Thanks.
Aw that's lovely. We had my son's christening a few weeks ago.
Was a really lovely day too.
So nice to hve fun for a change ;-) xxx

 

[lilesMom]

Ps they said same to me at last visit.
That rwflux is prob due to low tone.
I'm learning so much. Just wish it was for a different reason. ;-)
Xxx

 

[nearlythere38]

Ah fingers crossed! She sleeps better on a night now with having solids at supper time.

Yes it was a nice change to have something positive to think about. She looked beautiful in her dress, she cried all the way through church lol

 

[lilesMom]

Hee hee Simon started giving out a bit halfway through.
He bawled for water ;-) id say it was cold

 

[essie0828]

Constipation. Do your kiddos have trouble with BMs?

 

[essie0828]

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?

 

[lilesMom]

Constipation. Do your kiddos have trouble with BMs?

Yes and no.
He would hve way worse trouble but he is on comfort milk for constipation
And I give him 4 oz half strength bottle every day. Ie. 4 water to 2 scoops.
Plus osteopath works on his tummy and I give him massages.
He goes at least once a day with all these.
The reflux and constipation are all most likely a result of his low tone.
Muscles in his gut are weaker too.
Poor lo s hve so much to deal with. Boo to cp . Xxx

 

[lilesMom]

Hayley is old enough for diluted pure prune juice now.
I used to hve it while preg and on iron. I can guarantee it works ;-)
What foods does hayley mostly eat. Carrots are a good cleanser.
Lots of fluids is most important to soften poo.
Sorry tmi ;-)

Good day here today. ;-)
Simon really is the best sweetest baby.
Hope everyone is well x

 

[essie0828]

Lol, no tmi here. I think I have the only LO in the world that hates juice She will not touch it in any form but will eat fruit. It was a nightmare when she was younger and less mobile but now she only has trouble from time to time. I can't wait till these teeth finally pop through.

 

[essie0828]

Just wanted to brag on DD a little. She has been doing so well with physical therapy, and it shows. She was all over the house today pulling things outta drawers and cabinets, playing in the dog bowl, and having me chase her everywhere. Her crawling is very good now and she's standing flat footed more on her own. It's such an improvement