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We spent the morning at the hospital with Ellie's PT, orthopedist and an anestesiologist getting her evaluated for another round of botox and serial casting treatment. It went well overall I guess but it looks like this round will be way more intense than last time.
Ideally we should have started this when she was around 3 or 4 and done at least 4 rounds spaced 6 months apart. Well, we blew that. Didn't do the first one until she was 5 1/2 because we couldn't get it approved before we finalized her adoption. We were supposed to do the second round in January. But...well....that didn't happen because she was busy fighting off pneumonia. So now we're way behind and they say there's a pretty small window where these treatments are really effective. (Though what I've been reading online makes me think this may or may not be true.)
Anyway.....we're way behind so they want to try and squeeze out as much benifit as they possibly can with each treatment. Which means 8 botox injections in each leg this time instead of only 4 and probably 6 weeks of casting!!!
The treatment helped last time or I wouldn't even be considering going through this again. And at this point the alternative is surgery which I really don't want. But I'm scared we're pushing too much this time. Plus, we tried the numbing cream today and it didn't work so she'll have to be sedated for the injections. I really, really hate that!
We go in on Wednesday for the botox and she gets her first set of casts next week.
Last edited by mamma_anna; March 23rd, 2012 at 11:09 AM.
(((((((HUGS)))))))) I'm sorry mama! That stinks for you and her. Does she do okay with sedation? Is she still on O2 at home? Does she tolerate the casts relatively well? Sorry for all the questions... I really hope this goes more smoothly than you are anticipating and that she can get much better very quickly!
She is done with O2 thankfully. Good news about that.... we now have the okay to use it at home when she gets sick. We still have to consult with her doctor and get the scrip when we need it but no more hospital admissions just for O2!
The sedation is what worries me the most. She does not tollerate it well. Breathing wise she does okay as long as they give her *exactly* the right dose. But it makes her nausious. It always takes her forever to come out of it and the groggy disconected cranky feeling lasts for days.
She really doesn't like the casts! she got used to them after the first couple weeks last time but I could tell she was still uncomfortable. My sweet girl is soooo brave though! She tries really hard not to complain about them and we try to make it as fun as possible. This is the first time we'll be dealing with them at school. I'm not sure how that will go.
Still praying! Hopefully the casts will go over a little better now that she's in school because her friends will love signing it and helping her out? Every time I had a cast as a kid my friends loved it.
It was a success!! The botox anyway.... we haven't started casting yet.
She did AMAZING in the hospital right up until they put her to sleep! She even "helped" the nurse fill out her chart. This alone is a miracle because her anxiety is usually at it's peak in the hospital. I was expecting a terrified and uncooperative child and instead she did everything she was asked without a fight and only cried when they started the IV.
As I expected, the sedation had some lingering side effects. She threw up twice Wednesday evening and didn't actually sleep at all that night. She wasn't really awake either. Just sort of like a whining, shaking, mumbling zombie. It's been a full 48 hours now and she's still not back to 100% but close.
Her legs are sore and swollen but that's normal and it's already noticeably better than yesterday. She says her legs feel like red jello. She was very specific about it being "red" jello because apparently that's the most "jiggly" of all the colors.
Here's the best part.....drum roll please...... Ellie stood up with NO SUPPORT and both feet FLAT on the floor for a full 3 minutes this morning!!!! She has never been able to do this before!!!!
Of course I started bawling like a baby because I was just so excited for her and she says "Mamma why are you crying at me?" They were HAPPY tears.
She gets her first set of casts on Thursday. Now that the botox has relaxed her muscles, the casts will keep them stretched.
Lexi, I hope you're right about school being helpful this time. I'm just not sure what to expect. But for right now I'm just going to be happy with the progress we've made already.