September??

First day of school today!  I can't believe it's September already.  She had a great day, but she came home looking like she had been hit by a truck.

Before we left the house.

She had to endure several attempts at the photo as a consequence for not cooperating.  

This was last year's first day photo, for reference.  It is amazing how much they change.

It is way more complicated than this, but we have requested a supplemental IEP meeting in the next few weeks to reevaluate what is in her best interest in regards to school.  I am hoping that we get what we want, which is conveniently what she needs right now.  Her fatigue has only increased as she has gotten older, which is the exact opposite of what I was anticipating.  It is heart breaking to see, and also sort of terrifying.  It never occurred to me that it would get worse.

So we are hoping that she can get into a program that has a shorter day, more days a week, while still getting all of her services.  We are also working very closely with all of her therapists at school to try and seamlessly build in more rest breaks for her so it becomes more second nature as she learns how to self-advocate, and to help bridge the gap before we (hopefully) get her school day changed.

I feel very lucky that we are in concert with her teachers and therapists.  It is one of my biggest fears (and one of those NOT ON MY WATCH type things) that someone will say, well, she's basically functional, so she doesn't need anything.  She DOES need.  She is functional right now because she works really, really hard.  If we can continue to improve her quality of movement and her balance and her everything, and that frees up some of her brain that is already working on overdrive for most things we all take for granted (seeing things, walking down stairs, etc), then by all means, let's do it.

My biggest frustration right now (because the IEP meeting hasn't happened yet to further frustrate me) is the insurance company.  We qualified for this supplemental program offered by Tricare for dependents with special needs, but it turns out the program doesn't cover hardly anything that she needs.  What executive's kid needs to be legally blind before insurance companies start covering glasses?  It makes me want to bang my head against a wall.  Here we are with a serious eye disease that severely limits her vision, and we can't have her crazy lenses made and covered.  If she had the slightest bit of hearing loss, a hearing aid would be covered without question.  Why this double-standard?

In other news, we have signed her up for soccer, and there was an informational meeting at the park last week.  Because this particular program is set up for heavy parental involvement, I am hoping that it goes well for her and that she has fun.  She certainly had fun playing while we were there, and was *very* upset when we had to leave.  We have another two weeks or so before it's full-swing.

 

If we could get our left foot involved, we might be better at dribbling. 

This child cried the entire time.  

Next week we have a four day inpatient stay at the children's hospital so they can do a 72-hour EEG on her.  Neuro won't do the spinal tap until after the EEG results come back, so we have to get it out of the way.  If you'd like to send any amusements for her (or me) email me and I will give you our address (Sort of not joking about that whatsoever.  I would take crossword puzzles cut out from your local paper.).  I loathe thinking about being stuck in a hospital room for four days.