Any Cerebral Palsy parents out there :)

[lilesMom]

Oh dear lilesmom. Omg what you just said brought back memories..... DD was the same at that age. Seriously. She choked so easily lying flat that we constantly had to keep her propped up. We tried everything and eventually started her on solids a little early. I found that giving her a thicker meal kept it down. We went slowly with cereal at first giving her some by spoon before her bottle. It helped. Honestly though, even though everyone said don't put cereals in her bottle, I did, and it worked for us. Along with small meals very often. Hayley ate 2oz every 2 hours until she was almost 6 months. it was a tough time for us. I never seemed to sleep because I was terrified she would choke in her sleep. And she did. Several times, and each time was terrifying. Finally we figured out that having her sleep with her head elevated and making sure her food was thickened nearly cured the reflux. We didn't have medication to contend with though. If his meds make it worse I would mention it to his docs.

Thanks hon. Xx
Im ok again today. Just had to readjust ;-)
We tried solids . First day he loved it.
Next 2 days he choked so it's safer to wait till swallow is checked
Little man awake. Il be back ;-)

 

[essie0828]

I agree lilesmom. If he's still having trouble even with solids it's better to wait. So sorry it didn't work for him. The downside to solids is if they do choke it's harder to clear

 

[lilesMom]

If the barium test turns out ok then cereal in uis bottle is a good idea.
Carobel made his reflux so much better but his nappies awfull and tummy pain.
He is in his cot now. ;-) we got a smaller one so I can hve it right byme in bed.
Im gonna finish reading now . Xx

 

[lilesMom]

Thanks essie. Fx something like that for Simons eye too x
I know he can see us and his toys and all so should be fine.
How's the starting to walk going? Good I hope x

Hi to everyone xx

 

[essie0828]

Thanks essie. Fx something like that for Simons eye too x
I know he can see us and his toys and all so should be fine.
How's the starting to walk going? Good I hope x

Hi to everyone xx

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?

 

[lilesMom]

Thats great hon. Will ye be long waiting fir them ?
It's great we can get so much to help los now ;-) xx
Simon hasn't seen the eye doc yet. Just referred.
Prob take a bit cos they prob can't do much for him yet.
Nor much goin on here
Goin to cranial osteopath tomoro. Hope it helps.
He gotta letter for eeg for 22 of this month which is great.
Might mean coming off the seizure med.
Which I think aggravates if not causes his reflux
That will be a busy week.
Swallow check day before and heart echo day after.
We should get a lot if answers from those 3 days.
Good I hope ;-)
Hi to all xx

 

[essie0828]

Oh wow that will be a busy week lilesmom. I hope you get good news to Does he have seizures often? Hopefully the eeg will be good and he will come off the medicine well. FX'd for y'all.

 

[lilesMom]

Hey xx
No thank god. He hasn't had um since he was 2 days old.
But they found it hard to control um in hosp. Had to try 3 dif drugs and keep him sedated for 3 days.
They said it was safer to be on it and not need it than not on it and need it ;-)
I'm hoping that eeg is clear . They were looking at taking him off it at 6 months if all was well.
So fx ;-)
How r things with u hon ? Xx

 

[essie0828]

Awww poor lil guy. That must have been so scary for you. It's great he hasn't had one since though How has his reflux been lately?

Hayley is doing good despite a nasty cold. Her therapists are falling in love with her and she them. I'm sure she would go home with her physical therapist She's making new friends, giving away all my hugs and just being super sweet. She's up on her feet a lot more at play and is managing to stand for a few seconds at a time on her own.

 

[lilesMom]

Wow hayley sounds like she is coming on super fast.
Well done hayley.
Thank god she likes her physio. Wont be a chore for her so.
She really will hve u chasing her in no time. Hee hee

Simon is doin pretty ggood.
It still bothers him but we hve both learnt how to make the best of things for him.
He is sitting up more which is helping.
Osteopath is helping slowly I think
But only 2 sessions yet so I'm not sure how much ;-)
Not much news here at mo really


Hi to all xx

 

[essie0828]

What does the osteopath do?

DD was in therapy with a little man about the age of your lil guy. What a cutie! They were helping him learn to roll on a wiggly board. Pretty neat to watch. He was babbling up a storm. He had right side involvement but no diagnosis of CP yet. He was a chub to. Milk monster for sure

No therapy today Got rescheduled for next week and that's fine by me Gonna take DD to feed the ducks!

 

[lilesMom]

Hope u enjoyed tge duck feeding ;-)
Part of me is looking forward to when Simon can do stuff Like that
But part of me wants to keep my huggy baby ;-)
Simon s physio is rolling and stuff too.
He loves it now. He laughs when he knows it's about to happen ;-)
The osteopath doesn't look like she does anything barr put her hands on various parts of his head. Neck and tummy. Its very gentle manipulation I think.
It def freed up his tummy and gave him a great sleep last nt

 

[essie0828]

That's neat! I've never heard of an osteopath. Good that it helped lil squish to sleep.

 

[lilesMom]

Full nt in cot again. Woohoo ;-)

 

[essie0828]

Full nt in cot again. Woohoo ;-)

DD still doesn't do this Wtg!

 

[lilesMom]

Thanks im very happy . He loves his cot now ;-)

 

[essie0828]

Had DD's PT assessment and was told she is about 10 months behind in gross motor and fine motor skills. That was a little hard to swallow. I was hoping that the improvement that she has made would put her a little farther ahead. Probably best not to dwell on the numbers I suppose.

 

[nearlythere38]

Hello ladies

My daughter Ava doesnt have a diagnosis at present, but i think shes poasibly showing signs of CP. She has small optic nerves, and possibly Cortical Visual Impairment. She has mainly hypotonia, particularly in her trunk and neck, but changeable tone in her limbs. They have been noted to be hypertonic at times. She has a protruding tongue, open mouth posture. She has significant reflux and cows milk intolerance. Shes developmentally delayed and shes now presentinh with abnormal movements, including throwing herself backwards, jerky arms, hitting herself in the face, only able to lift both legs together briefly.

Shes due an MRI scan in 2 weeks time which i am anxious about but i know we really need to see whats going on. Im having good days and bad days, im worrying a lot about her future and i know i should concentrate on the here and now but the uncertainty is frightening

 

[lilesMom]

Had DD's PT assessment and was told she is about 10 months behind in gross motor and fine motor skills. That was a little hard to swallow. I was hoping that the improvement that she has made would put her a little farther ahead. Probably best not to dwell on the numbers I suppose.

Forget other kids. Forget timing.
Important thing is progress and that she is coming on all the time xxx

 

[lilesMom]

Ava s mom welcome and hugs xx
Hope MRI goes well for ye and ye get answers soon.
Answersmean u will get more professional help fir ava
nAnd u can start to get ur head round it all. Xx
Keep us updated please xx
We r always here to chat.
Ava sounds quite like Simon. My ds.
He had a stroke on his first day of life and has cp.
I'm not saying I think ava has either but just that they sound very similar xx

Hi to allxxx