Friday, August 10, 2007

8/10 Time’s just marching right along.

Josie’s doing great! These fevers are still coming every three or four or five days or so, and of course it gets everyone a little bent out of shape (and for good reason). But she seems to be able to take care of it and fight off whatever it is that’s on the attack. Last week she was perfectly fine throughout her stay at the hospital…that was a case of being cautious with the blood cultures coming back positive plus a fever…but no problem.

Earlier this week she again had a 103.5° fever…definitely high, and worthy of a call. They did a blood draw and testing as well as putting her on a course of more hard-core antibiotics. Her white blood cell count was very high at 17,000 or so, which is certainly a good indication there’s trouble brewing. But the next day the fever broke and her white count was back down to 3,000 or so two days after that. We’re liking the way her little body is battling those bugs…now if it would just learn that her own body is not the enemy, we’d be in great shape.

Josie had a nice visit with Dr. Vehe on Wednesday and he was real pleased with her progress. Her symptoms, though not completely gone, have improved! This means things are better with her Dermatomyositis. He decided that it was time to make some further changes with her treatment. We went ahead with her weekly steroid bolus and the IVIG on Wednesday. We’ll be decreasing her daily steroid now and next week we’ll try Remicade again, along with the IVIG. The following week we’ll try skipping a dose of IVIG and see where she stands at that point. Then after a week off give the IVIG the following week. A fine plan I think.

In the mean time she continues to grow strong. She’s maneuvering stairs much better and is getting a touch more fleet of foot. Getting up and down off the floor or bed is no longer a problem. She’ll pick stuff off the floor regularly now too…all good. She’s eating a little more (just a little though) as we continue to feed her through her feeding tube 17 or 18 hours each day. That whole eating thing will take a long time to correct. She’s still getting 12 hours of IV fluids each day too.

Her Jekyll and Hyde personality is still an issue. She’s such a tenacious bugger that when she decides on anything, that’s the way it’ll be, no matter what. Hours of determined stubbornness seems to be involved in some of the most mundane requests…like if she wants something, to just say please or say it nice…she’ll just refuse…or if she wants Mom to put on her clothes but Dad says it’s his turn to do it today…we’ll get through all that too. Those are problems for sure, and I’m glad the be dealing with that than lots of other things.

Summer’s so great and we hope everyone is having a fabulous time. It’ll be coming to an end her real soon…before your know it we’ll be back to building skating rinks.


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