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Wednesday, July 17, 2013

Sorry it's been awhile..

Sorry, it's been awhile..guess I didn't really realize how long
it has been since I've written.  Honestly, I can't remember what we've
been doing the last week.. other than OT & PT for Grace, a few
doctor's appointments in there..and a few meetings for me,
new & old ones.
I'm tired.  But I wanted to post a "hello" and a few cute pictures!!
 
 
 
  Grace is sitting up better in her Princess chair..still loving playing catch!

My friend, Helena stopped by yesterday for a visit!
Great picture of her & Grace.

  And tonight at dinner!!
 
 
Grace got her new mic-key button today! Everything looks good.  We should be able to start the Pediasure 1.5 by the end of this week.. that's a more calorie dense version..
so she'll only need to take 135ml's by g-tube 4x's a day (vs. now 150 ml's 6x's day).
No more night time feeds.
We're hoping by morning, Grace will be hungry enough to EAT & drink
a bottle!!  We can feel that she is definitely getting heavier & stronger (trust me she is strong already).. with all her feeds & no leakage! (who would've thunk!)
 
 
Starting in two weeks, Grace will be getting PT twice a week, once at home
and then once at the center that provides the service.
She did see her physiatrist recently..and he had a little concern that her
femur bones are a little crooked in her thighs, but with the continued strength, and
bearing weight down in her legs..it should get better.  We don't have to see him again til January.  He has ordered a hip brace for her to wear during nap & sleep times..
to help loosen her hips up a little bit.  And then she will be fitted in a
'super stander'..to help with walking & bearing weight down.
She is doing great with PT..sitting on a stool & starting to sit by herself on the floor.
She is still wearing her braces on her feet & doing well with that as well.
It's been a long process for our little peanut..but she is getting there!!
 
 
Another round of swim class starts this Saturday!
We recommended it to another family, and they will be attending it with us.
Should be fun!!
 
 
It's been soo HOT..we've been staying in, for the most part.
Hope you're all trying to stay somewhat cool!
 
 
Things are busy here... getting ready & planning Grace's 2nd birthday..
wow..already!! Time flies!!
 
 
 
Thanks for keeping up!
love,
pattie & gary, Gracie & max
 


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