Wednesday, October 17, 2007

10/17 Different Strategery

We’re still here, plodding along…trying to gain the upper hand – again -- against Josie’s disease. I’d like to report that it’s going great, but it’s not. Then again, it’s not going terrible either…it’s just -- going. Josie’s skin is still presenting signs of disease activity with areas of red splotchiness, and other areas continuing to show signs of breaking down again, but they’re holding fairly steady. Her finger nail fold capillaries have presented with slightly more inflammation over the last couple weeks, too. The last dose of Remicade didn’t appear to have much of an impact…but it’s hard to say whether her disease activity would have been worse without it … a.k.a utter frustration…and a big sigh.

Today Josie is getting another dose of IVIG which has always seemed to be a good thing. The real question is how best to now approach this disease attack. Our arsenal is the same, but it’s a matter of rejiggering the formula to convince her immune system that all is well and that it’s OK to leave her good tissue alone.

Her tube feedings are going pretty well, but we’re finding it difficult to get in all the calories she needs. We’ve become semi-slackers regarding the mandatory 1000 calories of tube feeds and absolutely need to redouble our efforts on the nutrition front. Still, Josie’s appetite continued to be weak, weak, weak. So last week we put her on an appetite stimulant drug, which seems to be working (to a degree). We’ve also tried throwing a meal into the blender on the puree cycle, and then injecting the dinner frappe directly into her stomach via the feeding tube. This seems to be a decent trick to load in normal food, but doesn’t help much on the eating-by-mouth-and-desire training regimen. Work in progress for sure, and we do need to pay more detailed attention this eating strategy.

Josie’s muscle strength is stable…some would argue it’s better, and I guess it could be, but it’s hard to tell week to week. Physical therapy is going well still and she’s working out hard and well during those sessions. She’s also working hard at play while at school, and she tries to run at some point of each day – especially at school, but is still not able to leave the ground like a normal running kid. She’s just not strong enough for that yet so she’s got the wiggly speed-walk running style thing going on. As her siblings are all starting hockey now, Josie is gearing up for lots of winter skating, and it’s hard to believe how quickly time has blown by this fall as we head downhill into winter over the coming weeks.

So we plug away and regroup our collective thoughts (more like to smart doc’s figuring it out) on how best to re-conquer Josie’s disease.

Thanks for your continued support of Josie and our whole family. We greatly appreciate all your heartfelt thoughts as Josie keeps fighting on.

I’ll get a nice picture of Josie on here real soon. It’s been a while, hasn’t it?

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