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March 23, 2011


As you can see, Daisy is thrilled that Joy is now sitting upright enough to feed herself again :). This is a jury-rigged seating arrangement for Joy, not ideal in most respects because of the limitations imposed by the body cast. But Joy is happy to be spending  more time upright and Daisy is happy for the return to food dropped on the floor. For Daisy, it has been a long two and a half weeks of eating dog food.

We are exactly half way to cast removal day April 7th! Joy has recovered so much neck and upper body strength that with me seated in a chair, she can stand on the floor between my legs and balance her own head for several books in a row, no more needing to lean back on my shoulder. She’s thrilled that I brought downstairs a bunch of new (to her) books. The two she currently requests most are “Sheep in a jeep beep! beep!” and “Monkeys!” which means any of the Eileen Christelow Five Little Monkeys books.

Good news today on the oral Baclofen. Joy’s current dose is so low that it is “benign” in terms of the potential side effects. So we’re tentatively going to leave her on it as long as we’re happy with the results. Several years ago, we had passed on Baclofen in favor of Phenol and Botox for her legs because the spasticity in her legs is so much more significant than in her arms. Given at a high enough dosage to relax Joy’s legs, we would have been in the scary range for potential side effects for oral Baclofen. But not at this dosage. So now I’m curious to see what, if any additional effects the Baclofen is having on the residual spasticity in her legs. Once she recovers her strength, it may be hard to tell the difference between any improvement in her legs from the low-dose Baclofen, and the effects of the surgery. But it would be great if we can sustain the positive effects it has had, especially on her left arm.

A note to myself on pain meds for next time. By one week home we had weaned down to no narcotics and were surprised very shortly thereafter to discover she does not even rountinely need Tylenol. Her levels of pain were so high post-op that I’m amazed that two weeks later, she needed no pain medication. Today, 2.5 weeks post-op I’d say she’s back to her normal self with the exception of the limitations imposed by the body cast. I never guessed recovery might go this fast.

Or that it would be relatively easy to deal with a child in a body cast. Granted, she only weighs 29-30 pounds cast and all. But I can swing her in my extended arms, twirl her like a helicopter, and even carry her one-handed with no ill effects on my back.

In fact we haven’t even needed any of the extra PCA hours available to us for 45 days after the surgery. Caring for Joy in a body cast is no more work than caring for Joy out of the cast. It is just different.

Now that we don’t have to wake up every four hours to give meds, my husband and I are doing better, too. That is the blessing of Hope’s being a challenged sleeper and Daisy’s being terrified of thunder-snow-storms: we are up often enough with one of the other ‘children’ at night, that before we go back to bed, we just rotate Joy in her cast like a giant rotisserie chicken on a spit.

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