Any Cerebral Palsy parents out there :)

[lilesMom]

They r back today but mild.
I did give him half a yoghurt yest.
He is off his food a bit from teeth.
And I dont know if it was yoghurt.
Gonna stay off it till wed anyway.

Aw poor hayley .
Kisses to her xx

I'm excited fir ye ;-)

Hurray for tender boobs. Ha ha

 

[lilesMom]

How is everyone xxx

 

[essie0828]

Hi hun

How's lil Simon? We've been doing pretty well, DD managed 14 independant steps in PT last week. She prefers to walk on her knees but if I push her she can take a few steps on her own. She's starting to get a little attitude to, if I tell her 'no' she laughes at me I think I've reinforced that behavior by laughing when she does it but she's so freaking cute.

I've been pretty wiped out with morning sickness, a good sign really but I'm wishing for 2nd trimester to have a break. Saw a tiny lil heartbeat on ultrasound last Friday, go back in 2 weeks for a scan to check growth rate. I found a doctor that delivers at a hospital with a awesome nicu. I still have trust issues with doctors and I get a little panicky every visit. I guess that is sorta normal given our history.

 

[lilesMom]

aw thats great , 14 steps is loads
she is coming on so well xxx

sorry bout morning sickness, it is tough but like u say great sign xxx
hope it eases a little soon xxx

things r good and bad here
stil havin few seizures every day,
but on new meds now as well as old, waiting for um to hopefully work.
he can sit now though.
more or less by himself, he loves it
xxxx

 

[essie0828]

Awww Hooray for sitting! That's awesome Sorry to hear about the seizures dear I really hope the additional meds help.

DD had her 6 month review through our therapy services and its a bit discouraging. Her speech skills are at a 12 month old level and her gross motor skills are scattered between 12 and 18 month old level. She's showing improvement and that's great but it's hard to see numbers in black and white.

 

[lilesMom]

Progress is all thatmatters hon.
They r never gonna be level with other kids that way
But hayley and Simon r much nicer than those other kids ;-)
It is hard to hear .
But it's not a race. They r going forward which is all that matters xxx

 

[essie0828]

Thanks hun. Sometimes I get caught up in the numbers

How's Simon doing?

I've been wondering about little Ava to. I hope she is doing better

 

[lilesMom]

It's hard not to feel bad when u hear things like that.
They are our babies and we want tge best for them xxx
When I see friends babies younger than Simon ahead of him in physical stuff it hurts.
But I just remind myself that he is himself.
I love him eexactly as he is and wouldn't change a bit of him ;-)
It is tough at tines though hugs xxx

 

[lilesMom]

Posted cos on phone.
Ava and nearly , hope ye r holding up ok xxx

Simon is ok.
Still having episodes but milder.
Meds are making him a but pukey and constipated.
Poor love.
Id love if I could take um for him ;-)

 

[essie0828]

Poor lil guy I hope his tummy settles soon.Good to hear the seizurs are getting milder. FX'd they stop all together. Its not fun to be pukey and constipated. I can relate to that at the moment. Dd is having constipation issues the last few days as well. She has all but gone off food because of it. Makes me nervous when she doesn't eat much.

 

[lilesMom]

its a viscious circle , constipation puts um off food and then constipation gets worse cos they aretn eating enough.
he is better today, hopefully its just an adjustment and it will settle down.
fruit to eat ( puree here ) and lots of water are the best cure for it.
plus simon will always eat fruit no matter how sick the poor poppet is.
i cook blueberries, raspberries , banana and a tiny bit cinnamon with a little water to soften and mash um up, he loves it and totally helps his tum. would she eat this?
i think u said before hayley doesnt like juice? or am i crazy
maybe put with ice cream to entice

simon got 2 ankle casts and a stander today.
his casts are bright purple, they r super cute.
they look like ski boots
first day in ages no seizure
had 2 last nt though, hope meds are working now.

love to all xxx

 

[avidwriter15]

My son has hypotonic CP he is now 2 years 1 month old!

 

[lilesMom]

Hi avidwriter welcome.
How's ur son doin?
And u of course ;-)


Hey to all xx

 

[Foogirl]

Not sure if there are any folks with older children in here but does anyone have any experience with hinged AFOs V static ones?

 

[lilesMom]

sorry foogirl, lo is nearly 10 months so not yet xx

 

[essie0828]

Hi ladies

Avidwriter, welcome hun. In January my daughter was diagnosed with hypotonia at the CP clinic at Cinci Childrens Hospital. Originally when DD was 18 months old her diagnosis was diplegic CP.

Foogirl my DD has 2 stage hinged Afo's. They are a combination SMO that snaps into a hinged AFO. We have never used the static ones but I really like the hinged ones. They allow for a bit of flex but dont allow her to get up on her toes at all. They also fold neatly for transport if she's not wearing them.

 

[essie0828]

Hi lilesmum. How's lil Simon doing?

DDs therapy schedule is going full blast again and things are super busy. She's walking a bit more and getting stronger. Excited about that. She's wearing me out most days

 

[essie0828]

Foogirl here's a website for the type of afo's DD wears. They are Indy stage 2's by surestep.

https://www.surestep.net/indy2stage.php

They show a static pair on the left, but they all come hinged. The picture of the cute lil red haired girl showes them better. Hope that link works. I have no experience with the static ones but in DD case the hinges allow her to stretch her achilles tendons and calves without letting her toe walk.

 

[lilesMom]

Glad therapy and walking is goin great essie.
How u feeling now. Still sick?
Still trying to stop Simons seizures.
Drugs havent worked yet.
He is on nearly double the initial dose they wanted now.
He is a bit bwtter but he often has good days followed by terrible one.
But fx ;-)

 

[essie0828]

Aww poor lil man. I was really hoping he would be getting a break from the seizures. Do the meds keep him tired out? How's his eating, and how's he liking the stander?? I remember when DD was just learning to stand she was very proud to be upright.

Last night and today have been tough on DD. She's wobbly and falling a lot. Being very clingy and crying over every lil thing. Not her usual self at all so I worry she's getting sick. She has been getting sinus infections from foreign bodys and we have to do a swallow study in April. I'm pretty sure it's not reflux but I have noticed that she will "forget" she has food in her mouth and get choked. Luckily her cough is strong and she keeps her chest clear but she coughs food into her nose. Saw her shoot a green bean fragment straight out of her left nostril yesterday Her OT thinks she doesn't feel the food sometimes and upon getting distracted will aspirate. More mouth work to increase her awareness of things being in there.