Any Cerebral Palsy parents out there :)

[essie0828]

AF showed up fashionably (5 days) late. Whew! Not ready, oh so not ready for that. Really want a big fat baby boy or girl to squish up, but not for a while. Hayley has been in her braces for about 2 weeks now and she is making her first heal to toe steps in the gait trainer She's no where near unassisted walking yet but she is making progress in a walker, cruising, and walking with hands held Finding motivation that she will work hard for is eluding me. She changes what she likes so much. My back and knees are killing me from all this walking practice. I can tell DD is a little stiff and sore as well, although she doesn't complain a quarter of what I do. Lol. Love my strong baby girl, so proud of her. Her receptive language is getting better and she is starting to follow simple commands consistently ROM in her upper body is better so she is exploring more and becoming a packrat. She steals the dogs toy and takes it straight to her play cot and pushes it inside. Poor dog whines and frets herself over that toy being out of reach Loving her new developing personality although I'm scrambling to deal with her willfulness. I don't hit and she isn't afraid of ANYTHING, so I mostly just have to grab her and drag her away screaming. My inexperience shines.

Hoping everyone's little ones are well and excited for the holidays. Good luck parents we will survive it in the end

 

[essie0828]

My phone sucks. Third tine typing this.
Hope she ua better soon x
I skipped 2 af before nd doc found no reason.
I wasn't preg. 4 bfn ;-)
Just skipped um.
Hope u get result u want xxx

My phone does the same sometimes. I nearly throw it when that happens.

 

[lilesMom]

I was close to flinging it ;-)
Glad she is doing so well and glad for af.
Had family xmas dinner in hotel tonight.
Was lovely.
Simon was dressed as Santa.
So cute ;-)

 

[essie0828]

Awww. That's adorable! Going Christmas dress shopping tomorrow for DD Probably going to get something sparkly

 

[essie0828]

We have our extended family dinner the 24th then its home for Christmas morning gifts and French toast casserole. Mmm. Hayley loves ripping paper. Opening gifts is so fun with her if I can keep her from sneaking bites of the wrapping. Last year she pooped blue wrapping paper the day after

 

[lilesMom]

Ha ha blue poo. ;-)
Simon got a xmas pressie off his auntie.
He played with the paper longest ;-)
Hurray for sparkly dress x

I saw in sjop the orher day.
Santa sticker reward chart.
Is she too young for it?
Promise of goin to park or cinema.
She may be too young though xx
So great she is making great progress

 

[essie0828]

Ha ha blue poo. ;-)
Simon got a xmas pressie off his auntie.
He played with the paper longest ;-)
Hurray for sparkly dress x

I saw in sjop the orher day.
Santa sticker reward chart.
Is she too young for it?
Promise of goin to park or cinema.
She may be too young though xx
So great she is making great progress

Yeah she doesn't understand that kind of stuff yet. She would probably just want the stickers and not understand she was working to get a bigger reward. Sounds like a heck of an idea for later on though Thanks! My goodness DD was in a grumpy mood ALL day. I don't get it. I hope she's feeling ok but she was just so quick to breakdown today. No fever and aside from a slightly decreased appetite she played normally. She is cutting canine teeth still so that may be it. Please let tomorrow be different

 

[lilesMom]

I was gonba say maybe teeth xx
Simin has a cold and was super sleepy today.
Took him to doc she said not in his chest but keep an eye.
Prob teeth and cold.
Although his pepilepsy meds hve increased so she saud ring hosp if it doesn't stop.
Hey to all.
Essie hope dd us in better form now xx

 

[essie0828]

Awww poor little squish Colds are tough on the little guys but good thing its not in his chest. If he runs a fever or is poorly do his seizures get worse?

 

[lilesMom]

He hasn't had any seizures since hospital ;-)
Thank god but yeah fever can cause um.
Which is why I dont wanna let anything set in.
He has no temp so hopung it's teeth and cold.
How ye doin? Xxx

 

[nearlythere38]

Hi ladies, hope everyone is well. Still plodding along here, waiting for the genetics to get in touch. They said i would hear from them within 6 weeks, and its now been 4 weeks. Glad its christmas next week to distract me! Waiting for the postman every day lol.

Lilesmom is it sodium valproate they started Simon on? Theyve said Ava is having myoclonic seizures, and shes been on sodium valrpoate for 6 weeks now and no change. Her eeg is consistently normal as well which they said is good, but obviously there must be something causing the seizures. Shes been refered to neurologist, the paeds think mitochondrial disorder is a possibility, or its related to the genetic syndrome that they think she has

Xx

 

[essie0828]

I hope the results come quickly for her genetics screening. Oh my goodness! I feel anxious just Thinking about having to wait for results while my dd was having unexplained seizures. I hope they understand and are reviewing them asap. mitochondrial disorder? Did they mention what disorder exactly? Is it like her body isn't metabolizing something correctly and that causes the seizures?

Ladies, those of you that have to deal with your little darlings having seizures, here's an extra for you all. That has to be one of the most terrifying things. You are some strong people! Wtg!

 

[lilesMom]

Yucky horrible waiting xxx
Hope they hurry up x
Simin is on vigabatrin.
His epilepsy is different kind.
He will be switched to epilim in 4 or 5 months though hopefully.
Then try come off that at 2. Fingers crossed.
Strange it's not helped.
Hve tgey said if they will up it or change it.
Maybe u haven't been back?

 

[lilesMom]

Sorry postibf cos on phone and it gete rid of typing lots.
Has she ever haf seizure during eeg ?
Is she having same number and length of seizures.
Same severity?
U would imagine it should ve made some difference.
Her eeg was ok first day wasn't it.
Sorry loads of qs.
Dont bother answering um if ur not in form or don't want to xx
I won't be offended xx

 

[lilesMom]

Essie hey and thanks xxx

 

[nearlythere38]

Apparently there are many mitochondrial disorders. Yeah its all metabolism related and something to do with cells. The outlook is not good so i am hoping its not that.

The seizures havent changed at all. Ivw read that myoclonic seizures can be unaffected by medications

 

[lilesMom]

The docs always paint worst ic.
They call ir preparing u.
I call it scaring the life outta u. Xx
Simon is loads better than I was lead to believe first day.
Fx ye rthe same xxx hugs hon xx

 

[essie0828]

Apparently there are many mitochondrial disorders. Yeah its all metabolism related and something to do with cells. The outlook is not good so i am hoping its not that.

The seizures havent changed at all. Ivw read that myoclonic seizures can be unaffected by medications

hoping you get good news hun

 

[essie0828]

Hayley took two wobbly steps on her own today in therapy. She was wearing her braces but held her own balance for 2 steps then she toppled over. I think we may have scared her cheering so loud!

 

[lilesMom]

Aw thats fab hon xxx
Hurray xx