IEP, EEG, LMNOP...

So this post won't be long, unlike the last one. PT finished up the muscle testing report and it was what we had come to expect, she's got issues in the balance/coordination area as well as the muscle strength arena. The official grade on it is as follows;
Alana's overall balance/coordination score was 8%. This means that she is more coordinated/balanced then 8% of children in her age group or 91% of children her age scored better in these tasks. In regards to her muscle strength she scored 24%. The range is the same as above for interpretation. Basically for many of the balance/coordination tasks she falls under what a 4 year old could do and around what a 4.8-5 year old could do for strength and she's almost 6. This doesn't seem like a big deal, I know this, but when you look back at what she USED to do this is again, a big change.

I know, I know, I need to stop focusing on the past and focus on the future. Nothing will come of fretting over what was, everything to gain from what can be, but it's hard and I won't deny that. When you watch things that used to be easy for your child turn into things that are now hard it's hard on everyone and so much harder on her.

Moving forward to today she had her recheck with McDr and some things went good, others went bad (go figure!). So do you want the good news or the bad news first? How do people usually want the news presented to them? For me personally I like to have the good news first, wait a few minutes, then get the bad news. That way I can have a few blissful moments of joy without interference caused by those pesky bad feelings so lets go that way: Good news...her ears are responding well to the anitbiotic drops and are showing signs of improvment! They are no longer bulging and red, just a little bit of fliud behind them still but none the less, getting better!



So just sit...sit still and take a nice deep breath. That's what I did--just breathe.



So to get right to it, she's lost more weight. In fact she's lost 1 pound 10 ounces in exactly 1 week. The MiraLax & Milk of magnesia is not working well enough to keep her GI system moving in the right direction therefor she is still having pain and backed-up. We ended up having to do another x-ray of her abdomen to check and see exactly how far backed-up she is. McDr will be calling tomorrow with those results. There is going to be another procedure (not going to go into that unless it comes to that) done if it's really bad so let's just hope that it's not too bad at this point. The plan is to change her from the magnesia to something else that I cannot pronounce right now and keep up with the MiraLax. She, McDr, was going to call Dr. P, the GI doc agian and make sure everything is inline for our appointment on the 24th. Honestly, this is getting freaking ridiculous! That's all I can think of at the moment to describe this!!!

Other then those major things we talked about school, tomorrow is registration, and what she's going to do. McDr thinks she for sure is going to need an IEP (individualized education plan) along with her 504 (to cover her O2 use). Our goal is something like 3-4 days a week for at least half the day and we shall go from there. Her pre-K teacher/adopted grandma, whom we adore, said she'd be willing to take her back lol!

We also went and looked at Alana's soon to be new ride tonight, it's an adaptaive chair. Think of it as a stroller on 'roids! It's a more supportive seating system for her and made for children with disablities. This isn't the one we are going to get now though, it was and that's why she's in it, we just decided to go with the step down model because it can be tweaked to fit her needs without being sooo overkill.


Anyway, that was how the last 2 days have broken down and I hope the rest of the week will go smoothly. Tomorrow doc's office is suppose to be calling me with the date and time of the EEG so we can get that done and over with but I don't suspect that will happen this week. If things look bad with her x-ray I will update sooner rather then later or if anything else changes.

"Wondrous is the strength of cheerfulness, and its power of endurance - the cheerful man will do more in the same time, will do it better, will preserve it longer, than the sad or sullen."