I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Wednesday, September 28, 2011

Lots Going On!

September has just been a crazy month!  I keep wanting to sit down each night and blog but there literally are not enough hours in the day!

Starting school and getting back on a routine is challenging enough but we've had a lot of appointments on top of that.  Hopefully I will get to blog about each one individually, but here's a real quick recap:

  • Alex got a new wheelchair - it's AWESOME!  Love it - so much easier to maneuver and it looks more like a hybrid between a stroller and a wheel chair - I need to post pictures.
  • Since my last blog post Alex has had more seizures.  One of them actually woke her up out of a dead sleep at about 10PM one night.  We took her to see her neurologist and we are going to up her medication one more time twice a day.  If she's still having episodes on the higher dose, the Dr. is going to admit her to MCV to their Epilepsy Monitoring Unit for few days to get better data on what's actually going on. (oh, and a blood draw was a seperate trip for her liver level functions for her seizure meds).
  • Zach went to see the allergy/asthma specialist and he failed his lung capacity test.  When he was tested a year and half ago his lung functions were 85% - he's now down to 50%.  He is on a special inhaler of steroids at night for ONE MONTH.  Hate that he has to have steroids for a whole month.  We go back in 30 days to see if he's improved and come up with a long term plan after that. 
  • Alex is having a lot of issues with two bones in both of her feet so we see Ortho in a week to address that.
  • Tomorrow they both go to the dentist - can't wait to hear what good news comes out of that :)
Throw in homework every night, blending 4 meals a day for Alex, Physical therapy, Speech therapy, piano lessons (another blog post!)  and the 4,000 other normal and not so normal every day to day things, it's been hard to blog!

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