Tuesday, October 02, 2007

10/2 Disease Fighting Back

Unfortunately Josie’s Dermatomyositis is making a bit of a comeback. Over the last three weeks things had been pretty much the same with little change…that is until this week when her upper arms and thighs started showing signs of increased disease activity. There are splotches on her skin which are sure signs that things are worsening. This is real downer news because she was doing so well and improving for so long. Her medication had been slowly drawn back and she was looking darn good. It’s not like she’s got a flesh eating bacteria or anything like that…it’s just – activity. Her face is also splotchy and red and scaly…more signs of activity.

Last week Dr. Vehe was hoping to delay further medication, expecting things were continuing to go well. And it was clear he was disappointed at her appearance during her most recent visit last Wednesday. He ordered up another infusion of Remicade which Josie received last Friday. And it’s been our experience that Josie responds well to Remicade, but this time there appears to be not much obvious improvement…total bummer. Next step is to go with another hyper-expensive dose of IVIG (processed human immunoglobulin) which will happen in the next couple days.

On the physical therapy front…there’s really been not much change for some time now. The progress is so slow you kind of need to take mental snapshots in time to compare, and her mobility and strength might be just a smidge better over the last month, but it’s really tough to tell. Her appetite is still almost zip…just a few nibbles here and there. She gets almost all her calories through the tube feedings nightly. She’s been done with the nightly IV hydration for some time now. The good news about that is that she’s free from bags and IVs for most of every day, and that’s much more convenient.

The great news is that she’s so enjoying going to school a twice each week. There’s no hesitation. When we arrive she just heads on out and starts having fun with everyone. All the teachers there are so friendly and encouraging. When I pick her up in the afternoon, without exception, she’s always laughing and playing with the other kids. She really seems to have so much fun.

So, a new battle with this disease seems to have started, and we continue to soldier on with a frustrated smile. One of these times she’ll kick it. And I’ll say it again…we’re quite lucky to even be having this battle as the war was almost lost last winter…so we’ll take it.


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