Thursday, April 4, 2013

A lot happening...

Lila balancing with Nora for their photo
HAPPY EASTER to you all!!!

It's been a while since I have posted, but a lot has transpired in the past couple of weeks.

As for Lila, she is on Spring break for three weeks.  This is the first break, since starting school 4 years ago, that we did not schedule a tutor or therapy.  Last week was a nice break!  We hung out together, went for bike rides, and played with friends she hadn't seen in quite sometime.  She played the entire time while using her the grass, around the play area, and up the stairs even!  The video is too large to display, sorry.  I will try to get another shorter one within the next couple of days.

The one thing we did do last week, pertaining to school, was to go down to Sacramento for an academic assessment through the Linda Mood Bell program.  This is an academic program geared towards kids with learning disabilities, academic challenges, etc.  It is something that we had been talking about doing for Lila this summer, but it is quite costly.  However, we won an assessment, so decided to go and check it out.  What a long day it was...3 1/2 hours of assessment, a little break, and then an hour of hearing their recommendations for her this coming summer (3 hours a day, 5 days a week, for four weeks - $104/hour - aahhhhh).  Not sure which way to turn, but are talking out our options.

The other thing happening with Lila is that her involuntary movements seem to be taking over her days.  They  began becoming more and more apparent last November, so we have really been watching her.  These movements are always worse with stress, lack of sleep, hunger, academic pressure, etc.  This week we go to our neurologist to see what he has to say, and then next week we go to see our doctor at Shriners to get his opinion.  We may inevitably end up at UCSF, as they are the closest specialists dealing in neurology.  The thing that concerns us most is that we were only told that here cerebellum was impacted (smaller than normal), and these movements are controlled by a part of the brain called the basil ganglia.  CP is it's own beast, so changes like these are possible as a child grows and hormones change, however is concerning to us for her future.
Here is a video of Lila with a few of her movements...  (Matt put it on YouTube for the Shriners doctor to check it out before we come)

The last month of school was really tough for her.  She needed to "squeeze" a TON, and could not pay attention for the life of her.  Her academics seem to be at a halt, and I feel as though these movements are part of this change.  Send prayers out there that this is something she can overcome and learn to gain control of in her own way.

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