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>Day 5: Home!

March 12, 2011


Can you tell how happy Joy is to be home?! We were blessed on rounds this morning to hear that if we felt Joy was doing well “by the end of the day today” we could go home a day early. “By the end of the day” ended up being as soon as the staff could get ready to discharge us. Grandma and Grandpa rearranged their day at the last minute to come stay with the girls while Papa drove to Gillette to bring us home.

Joy’s first request was for “Toast!” so Grandma made some and I helped her eat it while Papa set up her reclining wheelchair. This isn’t as un-ergonomic as it looks. Joy’s cast had a bit of a ledge built in at the seat and Joy is actually bearing weight through that onto the edge of the chair. It is good for her to spend some time upright every day and the feet of  her cast are built to stand on. She was upright for only 10 minutes and is still figuring out how to support her head since so much of her trunk is inside the cast and she’s not had any opportunity to support herself for five days. Today I had to cradle her head against my shoulder. But I expect we’ll see daily gains in strength now that she’s home.

We rented a reclining wheelcair for Joy to use at home for the next 4-5 weeks until her cast comes off.

We’ve just begun to experiment with helping her be independent in play. But TyeDye, the oversize fiber-fill lion Auntie gave Joy in the hopital is going to be a big help because he’s ultra-light weight. (The bottom of her alphabet board is resting on her cast, not her tummy.)

It will be fascinating to watch Joy get to know her “new” arms. The Baclofen she is taking to suppress the post-operative spasticity in her legs has also suppressed the mild spasticity she has in her arms and hands. Joy has learned to work through (or despite) the spasticity in her arms and hands so well that we have not intervened medically. But it is fascinating to see her fling her arms around. I say “fling” because she’s deliberately moving them fast enough to otherwise elicit spasticity as if she’s experimenting to see what they can do. She’s especially fascinated with the range in her left arm, which is her more impaired one. It works well enough that she tried to pull out her IV ports last night :).

I’m not sure we want to continue oral Baclofen long-term just to help her arms because the potential side effects are such that it is contraindicated in kids with Joy’s conginitive ability. However I plan to resume Occupational Therapy ASAP so we can  get all the milage we can out of her temproarily disinhibited arms and hands. Once she understands that her arms and hands can do specific tasks, I wonder if she’ll be motivated to maintain those skills after this window of opportunity closes?

One Comment leave one →
  1. March 14, 2011 12:04 pm

    >Just checking in today while there is a lul in our households sicknesses and cranky toddlers!SO SO glad to hear Joy is home now. She looks happy to be there. I hope she enjoys her new arms and soon her new legs!!

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