Big Steps

The chair was a complete surprise.  As we walked into therapy we were greeted with the news, Her chair is here!  Oh, OK.  Definitely not bad news, but just one more thing on a very full plate.  She was kinda funny about the whole thing… totally played it cool and nonchalant.  Basically, she wanted nothing to do with her chair.  So we wisely asked big sister to sit in it and take the chair for a spin and suddenly she was all, That’s my chair.  Hey, I want to sit in my pink chair!  It’s been months since she’s driven a power chair but in those few months something clicked because she knew exactly what she was doing.  Only 2 modes were engaged–forward and right turn–once we showed her the buttons, she was good to go.  She knew where to go and how to get there.  I think the training process is going to be a lot shorter than I initially anticipated.    

Part of the reason for my shock of getting the chair in the morning was that we had an appointment to pick up her new arm in the afternoon.  There it is.  A new arm.  With an elbow.  And you can’t tell from this pic, but the hand can also grab stuff.  It’s pretty sweet.  Although I have to admit I’m a little sad to retire her old arm.  I love and am very grateful for that little arm.  Then again how many people get to keep a teeny-tiny little arm from their kids childhood?  I guess I’m kinda lucky.  

So a new arm and a new power chair in the same day.  Additionally, last week she was also fitted with a foot brace that will be used to start her in the process of learning to stand.  To have all those things introduced into the world of a 2 year old within a week is a lot to throw at her.  And me.  However, I know she can handle it.

Ordinarily it would feel like a lot, but it would be manageable.  However, the timing could not be worse.  What has caused us the most stress is the fact that she’s been fighting a bug for 2 weeks now and has lost over 10% of her body weight… and she’s a pip-squeak to begin with.  This is not good considering we took her g-tube out just 2 days before this bug struck.  Her appetite has completely diminished and everything she does eat goes right through her.  There is no sign of it letting up.  We’ve taken her to the Dr. but it’s a wait and see at this point.  Although we couldn’t have predicted this, taking her g-tube suddenly feels like a huge regret.  For the most part she’s still the sweet, happy girl she always is but my worry-o-meter is through the roof.  I’m not sure what the worst case scenario is, but it probably involves hospitals and IV’s.

I’m sure I’ll write more about each of these developments individually over the coming weeks, but for now would you please keep my little pip squeak in your prayers?

Sorry this isn’t more eloquently written and that it’s a bit of a downer, but sometimes that’s life right?