Wednesday, September 17, 2008

Little by Little...

Is how Rachel talks about Xian getting better. However, since she started the antibiotic to hit the Bartonella, she's made a few 'bigger' improvements. Last week sometime her short term memory started coming back and now she is able to remember (most of the time) the names of her teachers---both old and new, and events that happen to her during the day. A funny thing happened a few days daycare one of her old teachers is named Alison, but when Xian was in her class she used to call her "Annie"---I'm not quite sure how it happened, some sort of imaginary play name that just sort of 'stuck' and then it was Xian's special name for her. As Xian was going to sleep she was telling me about something that happened with 'Annie' and I was thinking she must be talking about one of the kids in her new school. Well, Alison mentioned to me yesterday that Xian was calling her 'Annie' again...something she hadn't done since probably early last fall just before she really lost her language. Xian's also been talking a lot about the children who were her good friends in daycare last summer (and who moved last fall). Sort of like her 'old memories' end just as she was getting sicker. Her speech is really improving---she's no longer slurring words together and most of what she says is understandable now, getting closer to her pre-illness speech. She's slowly losing the impulsiveness and hyperactivity, though still seems to need to test out 'consequences' to her actions. (Yup, like this morning inserting beads into her nose---I hope we got them all out as I really don't want to have to bring her into the ER for removal!) She's still having a harder time remembering sequences of things or the 'what happens next' aspects to her day, but her kindergarten had a great idea for getting her to put the activities on a sort of chart and today Xian and I took pictures of each 'school' and hopefully we'll be able to use that to help her sort out where she's going after lunch when she moves from daycare to kindergarten. While she still presents some challenges to her teachers and daycare workers they've all been commenting on the progress she's making, and it does seem that every day something gets a bit easier for her.

She hit the next 30 day mark yesterday---she had a few ups and downs over the weekend and her eyes/head has been bothering her a bit. Other than that the only real signs this time around of her herx/die off reactions have been a few mild fevers/sweats and the dreaded insomnia. However, now she's managing to stay in bed even if she's having trouble sleeping---last night she watched "Dora" in my room until she finally fell asleep. (Last month when she was having trouble sleeping she couldn't seem to stand being 'on her own' and was getting up to all sorts of antics when she wasn't sleeping.) We see Xian's pediatrician on Friday, and I now have some information about a Lyme specialist in Ontario who may agree to consult -- he's an infectious disease specialist, and one of few in the country who treats Lyme according to the ILADs guidelines. I've been in contact with a mom whose two young daughters were treated by him---they both had quite complex cases, though live in Ontario. It would be nice if we didn't have to keep travelling to Seattle---as much as the specialist there has helped, the travel is not easy, especially when there's also Rachel to consider.

Rachel's finally getting over her cold, and has been enjoying the great weather and all the opportunities to play outside with her daycare buddies.

And I'm finally getting around to accomplishing a few of the things on 'the big list' of all the stuff that went to the back burner when Xian was so sick---dentist appointment, car maintenance and this afternoon I'm getting my hair cut. Even the house is starting to get clean and a bit more organized.

Will try to report back after Xian's appointment on Friday.

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