Tuesday, July 17, 2007

7/17 More Slow Improvements

Another week has passed and I’m finding myself simply shaking my head at the speed of time. Summer is half over already. There’s been camping, and a family vacation, baseball and soccer are winding down while overnight camps are just around the corner. Family life in summer is so busy but so fun.

Josie’s improvement has continued at an agonizingly slow pace. She’s getting stronger but at a snail’s pace…and the great news is that she’s getting around better than she has in over a year! Very good news indeed. As far as her disease goes though…she’s still battling. The lesions on her arm have now scabbed over and are slowly healing. These spots are interesting for sure…they’re not the normal lesion which is typical of Josie. They’re more of a scaly lesion rather than a deep vascular lesion like the norm of old. Another interesting aspect of it is that her fingernail fold capillaries are looking almost as good as normal, and those are a real good indicator of active Dermatomyositis. There have been no other trouble spots developing, thank goodness. Her skin is still showing a definite lacy rash over her back and upper arms, as well as a reddish rash about her face.

Dr. Vehe has been unimpressed with Josie’s skin condition, and though not as shocked as we were, he seems disappointed that she did not respond as well to her Remicade treatment. He ordered up another Remicade dose last week and it seems to have helped out. Josie’s skin is looking better now than it has in a couple weeks.

Her little Jekyll and Hyde personality is a tricky one. She’s so manipulative with her tenacious and unyielding demands on Deb’s time and attention. Many times she won’t allow me to do anything for her…totally depends on her mood…and then she’ll insist on Deb doing everything. What are ya gonna do? All the tough parents and shrinks out there promote some tough love, but one can only take so many 90 minute tantrums before caving. Most kids crack after about five minutes…but not our little miracle girl. It’s probably that personality and determination which kept her alive during those dark weeks late last year.

So we keep moving on hoping for the right formula for Josie’s drug cocktail…that winning recipe will be the one to slap her immune system around and back to its senses. It’s pretty hard to get your body to stop doing what it wants to keep doing…to get it to not fight what it thinks is the body’s enemy. It’s just weird, but it’s a weird with which we have to contend.

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