Sunday, October 26, 2008

A long overdue update

Xian’s continuing to make progress and lose symptoms. She still has her ‘bad days’ every month, but they are more and more predictable, usually hitting about a week every month unless there are new meds in the mix which seem to increase the bacterial die off.

She’s looking gradually more like the child she used to be, with her remaining illness in less 'obvious' areas. She’s now able to remember things that happened earlier in the day or week and can answer ‘or’ questions (Do you want milk or water? For months she couldn't hold two ideas in her mind at once.). But she’s still a bit more easily distracted than she used to be, and can lose her train of thought if she's interrupted, or if there's too much 'going in' at once. The hyperactivity is mostly gone and only resurfaces mildly during her herx periods or when she gets too much stimulation. At least some of the time her 'off' button seems to be working okay now. Xian’s drawing is also starting to come back in bits and pieces---she’s back to drawing flowers, objects and including exactly the same sort of detailed eyes she used to do, and doing very meticulous colouring (we brought colouring books to Seattle--the same one she used two months ago, and there is a huge difference in what she can do now). She’s also wanting to do a lot of writing--though now what she used to do in correct order is often in reversed or scrambled order, interestingly (apparently not unusual with Lyme to lose some 'sequencing' skills or do have some strange perceptual quirks). Her fine motor skills are pretty much back and now improving beyond where she used to be. In kindergarten they’ve been sewing and Xian hand stitched a little pillow and insisted on making a princess doll and actually managed to do it all by herself. The woman who has been working as her assistant said Xian was the best at sewing in the class. Quite a change from a kid who couldn’t uncurl her fingers or hold a pencil or wasn't even able to care about such things. Daycare staff have made the similar observations about her fine motor skils. She and Rachel are both pretty much back to where they were: getting into mischief together, arguing over toys and competing with each other to do everything 'faster' (well, except getting ready in the mornings). Xian’s pain responses are fully back (remember, she couldn't even feel an IV insertion...) and for the first time in many months when she fell and bonked her cheek (big bruise!) she cried very hard. (Rachel was quite alarmed at this new development and cried too. She said, “I thought she was died!!”)

We'll be finding out what medication changes she'll have soon. She's finished her round of sulfa---she was supposed to finish after a month, but we had a little extra and I extended it to go to when she has her periodic die off, because I figured it might be good to kick those spirochetes a bit harder when they are 'down'. She's had some die off symptoms this week too, so hopefully we've smacked down a few more bacteria.

I've been in contact with the CBC producer who is going to be working with me on the radio mini documentary on Xian's story and she has some interesting ideas---she's hoping we can get Xian to try to tell as much of her story as she can, and was quite interested in the fairy tale interpretation that both kids keep returning to. For Xian, I'm sure it does feel like waking up from one of those 'sleeping beauty' type bad spells. The Disney Sleeping Beauty video is out again and the girls have been watching the clips on BestofDisney on Youtube...though Xian is also quite convinced she just might be Snow White---now that she has her proper Halloween costume. Will try to get some pictures---I just hope those costumes will hold up until the big day, they are getting a lot of wear already. Xian's 'cheek bonk' happened when she was trying out those princess shoes and tripped over a box---I guess the bruise is a sign of things moving back to normal, as she used to love wearing all those dress up shoes!

Thursday, October 16, 2008

"Before" and Three months of Treatment

Here are two pictures: one is a picture of Xian at the height of her illness -- she has what I've been told is a pretty classic neuro Lyme "blankness". The picture in the car was taken in September and you can see that her 'spark' is back.

Will post an update soon, but thought that these two pictures provide a pretty clear picture of the changes since Xian's started on her treatment.