Monday, December 03, 2007

12/3 Birthday Fun

Josie is five years old! What a fun day yesterday. We had some friends over with cake and decorations and presents and ice skating and a cozy fire and everything…it was perfect!

Josie had been looking so forward to her birthday for some time now…counting down the days until she would be five. And when the day finally came yesterday she was very pleased with herself. She did make a point to inform us that she was no longer a child…she is “now a big girl”. And “five-year olds are very smart…a lot smarter than before”. So now that we’ve been straightened out that we can move on to college.

The weather has been good and cold – just perfect for finishing up the skating rink, which Josie’s been very eager to try out. She gave it a go and was out there skating with the whole family. Her sister, with whom she argues regularly, was helping her move along with great encouragement, while at the same time her brothers were more interested in racing around the rink insisting they would be careful and not wipe her out. Seemed to work out well for the most part. Now to get her confidence and wobbly legs to work together, then we’ll be in great shape.

Josie had another dose of IVIG on Wednesday. It’s just an ongoing maintenance struggle here…all the medicine is now a total routine. We draw up all the syringes of liquid medicine (ursodiol, protonix, plaquenil, cellcept, vitamin C, vitamin D, calcium, fluconozole, (maybe a couple more…I’m trying to visualize the med-drawing routine in my head here), and fire it all right into Josie’s feeding tube a couple times each day (in fact, many times Josie just does it on her own. On those days I have to do a double take and ask her if I did it, or what happened, as I get very confused sometimes…and then she straightens me out again). After that, in the evening, we hook her back up to her feeding bag and pump for a night for continuous food –– routine.

And that routine is keeping this nasty disease held back, and it’s trying to break through with its relentless pressure and patience… just waiting there for a little opening and, wham, it can come back with a vengeance. But Josie’s doc’s are watching close, ready for anything that may rear up. For now it’s maintain, and wait and watch.

Everything else is going pretty well. Josie’s Mr. Hyde imitation performances are still coming, but not as frequently. Maybe I can use the I’m-ready-to-go-to-University-because-I’m-a big-five-year-old-and-that-makes-me-so-smart psychology on her when she gets into a Hyde-summoning snit. Think that’ll work? Worth a try, I guess.

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