Monday, September 10, 2007

9/10 What's New?

So What’s New With Josie?

Clearly we’ve not been updating the blog here nearly as much as in the past…and for good reason. Things are going well -- well…yeah – pretty well, indeed. Josie continues to improve in both strength and with her underlying disease, but the progress persists at a slow pace -- S – L – O – W.

The great news is that Josie’s Dermatomyositis is as quiet as it’s ever been since she was diagnosed! How cool is that? The continued tinkering with the medication formula seems to have done well so far (kudos to Dr. Vehe), now it’s a matter of carefully peeling away the medicine and get that immune system of hers working properly so it no longer thinks she’s her own enemy. Josie’s immune system is still beaten down with the Remicade medicine on board (she had another dose last week) and the evidence is showing that all this stuff is working pretty well. We skipped a week of IVIG to see what effect it would have and there appears to be no adverse effects so that means sort of an altered and staggered IVIG schedule, hopefully heading toward a complete weaning. Her prednisone (steroid) dose was stopped after being whittled down with no problems. It kind of feels like we’re building a big stack of blocks and we’ve got quite a nicely balanced formation on which we’ve placed some of the last blocks which seem precariously perched, and we’re slowly backing away with hands close hoping it doesn’t collapse, yet it still seems to be teetering and could fall any time. Hopefully, over time, we can walk away with confidence that it’ll stay up and solidify.

Two weeks ago Josie went in for a CT scan of her tummy to make sure everything was as it should be. She had this 8 ounces contrast solution which she was supposed to drink…and of course she doesn’t like to eat or drink anything. So we pull out the trusty 2 ounce syringe and pumped it directly into her tummy through the feeding tube. And I have to say, that feeding tube is sure nice to have…it completely eliminates negotiation for taking medicine or other nasty tasting stuff. Just draw it up and squirt it in – done. Sure, we’d rather NOT have a feeding tube, but now that it’s there, ya gotta love it. Anyway, the CT scan went just fine and there are no leaks in her system (good). There is a question as to which direction all her tummy contents are heading. If you’ll recall, her anatomy is no longer normal. She has two paths out of her stomach: the normal exit (the pylorus) into her altered duodenum and small intestine and the new exit which was created during all that nasty business last fall. The theory was that once her normal track was reestablished that the alteration would kind of fix itself and close off. This is a question which is up for debate and will likely undergo some testing to see for sure. There’s no alarm of anything like that, but it’s a question we’ll have to visit at some time as we move forward.

Hyde is still a problem with almost daily outrageously-ridiculous and unreasonable behavior, but it’s usually short-lived. When he shows his ugly self it usually is met with a couple eye rolls, a little patience and he scampers off…eventually (but sometimes a nap is required).

The biggest news of all is that Josie went back to school last week and is thoroughly enjoying preschool again. We get her all unhooked for her feeding tube and IV in the morning and drop her off. No separation anxiety at all…she’s pumped to be there and I really think she’s having a blast with all the great folks there and meeting new friends. When I pick her up in the afternoon she’s motoring around the gym laughing and carrying on…well animated and having some great kid fun. What a pleasure to see.

Josie’s appetite is improving, but like everything in this recovery, it’s going slow. She’s taking in more food each time she eats, but still just meager amounts and not nearly enough to sustain herself. She’s getting hooked up for nightly feedings and we pump in about 1000 calories overnight so most of each day she’s unhooked. Her weight is good and stable.

So all is (pretty) well with Josie these days. More to come.


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