I know, it's been too long since my last post... We're now finished with antibiotics (at least for now) as of the end of December, and things are still stable. Xian's story has received some media attention lately, and I've got a chapter in a new edited Canadian Lyme book, Ending Denial. Here's the news article:
Hopefully, in publicizing her story we have the chance to help someone else -- as it was though another news story that I found out about tick borne illness.
Xian is doing pretty well -- what seems left for her is a weak immune system (she catches everything and gets much sicker than her sister or I do) and some perceptual and language issues. It's as if her 'sequencer' is not always working. She's still being followed by the child psychiatrist who helped her with the last 6 months of treatment, and who has really been onside as well as sharing Xian's story with the local group of psychiatrists. The pediatrician is now a 'believer' -- and hopefully will now continue to support whatever Xian needs.
We're nearly at the two year anniversary of when we were at the beginning of having some answers and some treatment. Seems like centuries ago. While I was given some hope at that point I don't think I really figured there was any chance of a truly full recovery. But here we are.... I still wonder what our future would have been had I not stumbled upon that article about Ed Sperling (the teenager who had neurological Lyme), and at the same time had a few people mention it via some Internet contacts. While our lives now are in the 'back to normal' realm, it still feels like the past three years are something out of an old twilight zone episode. Xian herself occasionally has small memories return -- this morning she was remembering something from her time in the child psychiatric ward, telling me about not being able to find her way to the cafeteria and being locked in a room by herself (in the time out room). These memories always seem rather dreamlike, and now her aim seems to be to unlock whatever puzzles they hold -- why weren't you with me then, Mom? Why was I in a place with a cafeteria? It's funny but this two years from the start of treatment seems to bring remembering for both of us, and some for her sister as well.