Any Cerebral Palsy parents out there :)

[lilesMom]

oh and a half stander is just the feet and ankles
he would be up to a little table in it

 

[essie0828]

Hi hon. No worries about the post, it's been crazy here as well. DD narrowly avoided hospitalization twice with this bug she's had. For 3 weeks she's been fighting something, running fevers, missing therapy, being very tired and not eating or drinking enough. She's just starting to show improvement in the last 2 days.

That's terrible the little guy is seizing again. So do you have to up.his meds gradually over the 6 weeks? Hope he's still improving and the seizures stop. The half stander sounds interesting, so he basically stands at a little table with his legs braced in from foot to calf? That will be excellent for building strength in his hips, back, hamstrings, tushie and thighs. Bouncing is great. Hayley loved to bounce with me holding her braces stable. She just sorta stood in one place and bent her knees and bounced to music or tv. With the afos the socks, lol, I had a time finding something that didn't leave seam marks on DD. Stockings didn't provide enough cushion and the braces rubbed her feet through them. Most regular socks have a heel stitched in, those don't work sometimes. And getting a long length in order to fold the socks over the afo at the top was a nightmare. Smart Knit seamless sensitivity socks are the best I've found. They sale on the internet and in some medical supply places. Can't find em in stores in my area at all and I hate waiting on shipping. Leggings? What type of leggings? Cotton, over the toe, thigh high? I've been looking for good leggings for dd that are cotton blend and go to her waistline. Like pantyhose but cotton blend.....does that make sense? Lol. I find footless ones all the time that would be perfect if they only had footies.

 

[lilesMom]

Oh no
Poor hayley and poor u xxx
Glad she is starting to improve xxx
Hugs
Happened Simon a,little while back
He was sick for most of 5 weeks
Had a little break in the middle.
Thought he would never shake the bloody bug
But he did eventually
Hope hayley is coming out of it now Xx

S loves to kneel on my lap and bounce
He seems to know instinctively what strengthens him
Ckever poppet :-D
We started the New med 8 week's ago
Bern increasing every 2 week's to get to current dose
It isn't enough so 6 moreweeks slowly increas
Kinda frustrating
It also makes him a bit sicky. Each time
He is just getting used yo it And it's raise time again
Sucks but we will get there :-D

Um socks... . Doh
Leggings still need socks :-D
Il see what recommendations fitting person has
She said we will talk shoes on the day
Roll on afo :-D
He already has casts so I'm hoping adjusting Might not be terrible

 

[essie0828]

I forgot about S having casts. He will likely be used to the weight of something on his legs then. DD took a while to adjust to them, it's like her legs were lead for a bit.

Thanks hun. I hope she is through with this bug to. It's made her so weak. We've went backwards with feeding, she's not eating many solids at all. She's refusing to walk most of the time and will either cry or cling to me to the point I can't pry her off. It feels like we've went backwards. She has started with a new word, "fo fo" for phone. It's a whole new sound for her, she couldn't do f sound before. I can't wait till she's back to herself.

 

[essie0828]

Ugh, it has to suck dealing with the epilepsy meds. My cousin is going through the same thing with her little boy. He has absence seizures, like he's daydreaming but you can't snap him out of it. Now his hands have started to twitch and his eyes roll where he used to have no movement during them. We are afraid they are getting worse. I hope S adjusts to his soon and they don't make him sick anymore. It's terrible to help one thing you have to upset another isn't it? Whats S going to be for Halloween? Do you guys celebrate it? What's usually you favorite things to do on Halloween? We're going to be on the road with DD going to CCH for CP clinic, then doing a trick or treat basically at homes of family then we set up out front to give out treats in our neighborhood. I still haven't picked her costume! I've refused to shop with her while she's sick, DH has been helping with necessities but we just put off the costume. I want to stay busy as I can. We should be bringing home a new baby if I hadn't miscarried. Blah. Gotta shake it off and try to preserve the fun for DD though. Glad to have something to focus on.

 

[lilesMom]

Xx hon
Sorry I couldn't answer earlier.
S woke up while o was reading it last night
Due dates suck. Hugs honey Xx
Thank God,for,hayley and Simon Xx
I'd be lost,without my,Lil squish,
Handful and,all that,he,is :-D
Sorry ur sad xxx
Hurray for Halloween distraction
We won't to much, oh works until 10 at night so won't be here
S,and,me r goin to charity party my Bro organised
But nit for long cos it's too late for munchkin

 

[lilesMom]

If,the,length aand,frequency of,the seizures,haven't changed
They,hopefully just a little changed aand not worse
Hope,they,get sorted soon Xx

 

[lilesMom]

S is refusing,drinks cos,new,med makes him pukey
Drinks r so,light they don't stay down and he knows it
Hve been milking up his food and giving him drinks at night
Feels like,backwards too
But it's,temporary for them both Xx
Just saying I know the feeling
It constantly feels backwards and forwards here with eating and drinking xxx

 

[essie0828]

Hi there!

How's Simon doing? Hope hes eating better. Hayley is still not eating many solids but she's keeping up with her drinking. She's feeling better but we are having to do some more blood tests to check for a pituitary issue. They are checking her tsh and first morning cortisol levels at 7am tomorrow. Dread that. Hayley is NOT a morning person. Then Wednesday we are on the road to Cincinnati. I can't wait to get this stuff over with.

 

[lilesMom]

Hey Xx
He is a good,deal,better
But med raise again soon, doh
Hope hayley,tests,all go,well xxx
Least they,t moving fast enough to do them xxx
The older,s gets,the,more blood tests bother. Him.
How does h do,with them?

 

[essie0828]

My phone just ate my post. I hate that.

 

[essie0828]

Ok well here we go again at this......

Glad to hear lil squish is feeling better. I hope his next med increase goes smoother. Poor little guy. Hope your Halloween is fun and he enjoys himself.

Well up until yesterday Hayley did very well with blood tests. We had the worst experience yet with a terrible phlebotomist at CCH. I'm so furious that I've filed complaints with the hospital and had the orders sent to another lab. It was ridiculous! I'll give detail later because we have to run, but to say the least I'm pissed off.

 

[lilesMom]

Oh no Poor ye Xx
Hope,hayley has forgotten it
U would reckon,even they take blood,all the time
They would get good at it but some people never do.xxx

We,r,both sick for Halloween
A stupid virus. Getting better though xxx

Turns out my thyroid is autoimmune
I asked my doc to. Test for antibodies last time
Thrry should,be less than 34, mine,were 283

 

[essie0828]

Oh my! That's very high for antibodies. How will they treat it? I know you were planning on ttc in the next yr or so, how will they manage that during pregnancy? Hayleys TSH was 6.4 when they screened her last week. It's borderline high so we have to repeat the test next month. I hope I didn't pass this thyroid stuff to her I was diagnosed as a child and ya know what, I've never had the antibody test! Might be a good thing to look into at my next doc visit. I have to go get a lump checked out in a couple weeks. Strangest thing, just a hard knot growing near the bone just below my knee. I thought I had knocked my knee on something crawling around after DD but its different. DH felt it and said call the doc so...... I hope it's just a cyst or something simple.

Sorry your Halloween was spent being sick We didn't do much more than dress DD up and hand out candy. Oh and ate way too many sweets. Everyone was in a candy coma by 11pm Boy my Halloween party days have changed. Lol. Was out buying some local Bourbon to make vanilla extract to give as Christmas gifts. Told my husband that the last time we bought this much bourbon we got pregnant with Hayley How things change after baby comes along

 

[lilesMom]

I'd say ttc won't happen..
I'm weirdly glad
I've enough on my plate as is
It makes the will I, won't I seesaw subside :-D
Its too risky in foreseeable future

S is still very sick

He got croup
Am worried he may be dehydrated now
Really hard to get food and drink into him
I'm giving him today
Will go back yo Doc tomorrow of needed

Hope hayley is ok hon
Thyroid is a butt pain but u know yourself it's manageable

 

[lilesMom]

Sorry phone git stuck
Post or lose again
Not much news
Judy been trying to keep my poor cranky sick boy happy :-D

 

[essie0828]

Aww poor Simon! Is he feeling better? My phone has ate several posts, really frustrated with it. I hope you can get your thyroid stuff worked out
There are some treatments for that, that should allow for you to ttc afterwards. But I understand to try now with Simon would be A LOT. Well on the news front I think I am going back to the country side. Found a perfect house near my mom and grandma. Going home to work my grandma's farm. There's some economic growth in the area and we may be making our living from the farm. It's an interesting adventure at the least. Hope this house comes through! It's beautiful and perfect for us. hugs to my Irish pals and kiss that little guy for me

 

[mummy3]

My youngest has diplegic CP, I also have a CP dx :wave:

 

[essie0828]

Hi there mummy3 How are you? Welcome! It will be interesting to hear from an adult with cp!

 

[mummy3]

I have the dx but I think my CP is more effects from EDS, it was given before we knew about the EDS and in a lot of ways the signs are very similar, I hope I can help though! I do have epilepsy which also can go with CP so who knows really!

Lots of thyroid issues here? I have a hyperthyroid, on PTU.

Hope everyone is having a good week?