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>Catching Up

March 16, 2011

>Between taking care of Joy and taking care of all the home-front things that I could not do from the hospital, our first few days back home have flown.

Sleep: Joy is catching up now that we started using her “as-needed” med. at nap- and bed-time. It has anti-spasmodic and anti-anxiety properties and I don’t know which aspect is working. Maybe both? Once they removed the IV meds, starting our last night in the hospital, she had a really hard time falling asleep. Now we’re over that hump. She now takes her middle-of-the-night meds without really waking up. Of course we have to wake up every four hours to give the meds. But today we’re stretching the dosage interval to five hours. If it works, we’ll only be getting up once at night.

Positioning: In an effort to prevent pressure sores over bony prominences inside the cast, during the day, we change Joy’s position every two hours. We turn her every four hours at night. There are only four night time positions: right side, left side, back, tummy (which she doesn’t like).

During the day, we’re trying to be inventive. So far we’ve figured out that she can stand (more like be propped upright) at the couch to play with toys in front of her; sit fairly upright in a bean bag chair; sit fairly upright on the edge of soft furniture between the legs of a grown-up; play in her chair with a bench used as a table; and swing standing up. If we had a platform swing, she could also swing laying down with her legs supported.

This is one position we’re still trying to figure out: on her tummy, weight bearing through one of her arms while she plays with the other. As you can see, we’re still experimenting to find the best thing to suspend her over for tummy time. TyeDye is actually the right shape; he’s just too squishy to stand up to the weight of her cast.
Joy’s head control has improved a lot in upright positions since she came home from the hospital. But tummy time, I think, will remain a big challenge because the only the muscles above her shoulder blades are free of the cast. Those have always had the lowest tone in her whole body. And thanks to the Baclofen, they are also now missing the mild spactcity Joy had learned to put to use for strength.

Wardrobe: This cast is HOT. Joy spends most of the day in a sleeveless Onsie. (One size larger than she wore pre-surgery buttons around the cast.) It’s main job is to keep crumbs from falling down into her cast and to hold her diaper ensemble in place. For going out, a loose dress (pre-surgery size) fits nicely over the cast. But the extra layer of real clothing adds too much heat to wear it all day. So until the cast comes off, at home, Joy will be hanging out in her underwear.

PCAs: Joy’s PCAs are really earning their keep these days since there is so little she can do for herself. Having PCA time is helping keep me sane because everything takes so long to accomplish in a body cast. Like just getting up in the morning takes 30-45minutes. But because I have help every morning, I’ve been able to begin making a dent in everything that went undone the week we were in the hospital.

I really underestimated cumulative effect of a week away from home plus very broken sleep and a (understandably) traumatized, unusually needy child. (And the behavioral regression from some who stayed home. I should have anticipated that, but didn’t it.) It has felt very much like the first week home from an adoption trip –except I did a much better job anticipating and planning for those! Next time (Joy will need this procedure again in 5-6 years) I’ll be forewarned and plan better for the first weeks home.

Tomorrow is our first adventure out since Joy came home: we’re going back to FAC for OT in the morning. I can’t wait to get to work on her “new” arms!

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One Comment leave one →
  1. March 16, 2011 7:24 pm

    >i'll say it again, Joy is such a trooper. I am so amazed with her- she is always smiling:)

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