Sunday, June 15, 2008

Busy, busy, busy...

Have been getting transport and such organized for the Seattle trip. Xian and I are taking the Clipper from downtown Victoria to downtown Seattle---certainly a better deal than flying or car rentals and ferry rides. (The Clipper is a fast ferry and the trip takes about two and a half hours---so saves us time, too.) The hotel where we're staying has free wireless, so hopefully I'll be able to update the day of Xian's appointment. Xian's got a passport (as do I) so just have to bring along the copies of her adoption records verifying that I am her sole parent---good luck to any custom's agent trying to get Xian to answer questions about who I am and what's going on. (The last time someone asked her that question -- in her last Emerg visit in April she told them I was "Uncle Bill"!) I do have a letter from her pediatrician mentioning that she's ill, so guess that might be worth bringing along, too.

Rachel's had a bad cold all weekend, so we've been close to home. She's feeling better today aside from coughing fits and being a bit needy. She's reminded me a few times that "it's not a bad spell, though. It's just a cold and a froggy throat." Xian was headachy yesterday and was irritable most of the day, not eating much, and wanting to lie with her head on the tile floor, though she did have a couple of good periods where she was playing with some little Dora figures in a game set Rachel has---the interesting thing I notice when she does imaginary play is that often her vocabulary improves, temporarily, but then she's back to getting frustrated that we don't understand what she's asking for minutes after the play ends. (Lately she'll say, "I want it. Get it for me," giving no clue what the "it" is -- so we go through twenty questions or asking her to take us and show us.) She was happier today--I was also more careful about her diet -- she did have a touch more sugar yesterday and that didn't help things much--but also seemed to have sore hands a lot of the day. She has them clenched tightly and they get very hot and sweaty, and she has more trouble holding objects. (I had to feed her part of her dinner---and she also had trouble climbing in and out of the car earlier in the afternoon.) Sometimes it will be one hand and not the other. It's a bit better now--enough that she can pick up potato chips;-), but will get her into a warm bath tonight and see if it helps.

On Friday I heard back from the director of the school I originally had wanted Xian to attend before she got sick. We had a good chat and I shared some of the complexity of her condition, the changing diagnoses that no one can agree on etc., and she said that they have space in their afternoon Kindergarten (our preference, given Xian's at her worst in the morning) and she's willing to do the legwork to get an assistant in place before the start of the school year. (The director is a former Ministry of Education bureacrat and if there's anyone who knows how to get something in place, she's the one -- as I shared with her what's now being investigated in terms of Lyme disease, her comment was, "Well if it is, someone in Alberta gov't needs to hear about what's happened.") So, the plan is that Xian will begin there, with support, and we'll review in a month to make sure it's working for her and the best option in terms of whatever needs she has at that point. After my conversation with the speech therapist at Xian's preschool program at the Glenrose (who was telling me we need to find a special program---and get her wait listed etc., and perhaps not start her in K. in the fall until a space appears), I started thinking about what they've seen in that program (two afternoons a week) -- Xian's been very quiet and nonverbal there, though will speak to the adults. But, in the program the rest of the kids are boys (7 of them), a number of them have their own speech/communication issues and the others have social communication/behaviour issues -- so not kids who are going to elicit conversation from Xian, although she certainly smiles and makes eye contact and will play alongside them. When I contrast that with what generally happens after her program (we leave to pick up Rachel at daycare where they are usually playing in the playground)--normally she ends up pulling littler kids in the wagon, or playing chase/tag games with the kids her age, or getting involved in something because her old friends engage her--I have some doubts about the benefits of a segregated classroom. And, while she certainly has speech issues a lot of the time -- the lucid periods she has seem to indicate that her speech is still intact, just not really accessible to her all the time. So, not really sure that lots of speech therapy would be the answer, if what's going on (Lyme, or whatever) is the real cause of the problem. I contacted a friend who is the head of the SLP program on campus to get a bit of a second opinion--and she agrees (and she also volunteered to see if she can find anything about speech/language issues and Lyme disease---so it'll be interesting to see what comes up, and if there are ideas that might work for Xian). I figure that a) if Xian does have Lyme and begins treatment soon that she may be in a very different state come September, or b) even if she doesn't, she's made gradual improvements since her very low point in February, so that whatever is going on she does seem to be fighting it off gradually--and so she could improve regardless and c) a month in a regular classroom, with support will probably provide a lot more useful information about what's actually going on, including the fluctuations, if she does end up needing a special placement---the problem with most of her assessments is that they can't be taken as "typical" for her, because there's really very little that is constant. A number of Xian's good friends from daycare will be in the same Kindergarten and I think that familiarity is very important to her now, given that her memory is patchy. Hopefully all will work out, but it seems a much better idea than running around frantically trying to find nonexistent special placements without knowledge of their programs---the only spaces I could find in the calls I made were for preschool programs rather than Kindergarten. Now if someone was giving me a "for sure" diagnosis with any sort of proof it would be a different story, but we're still in the realm of everyone waiting for someone else to come up with one and in the meantime using small windows of observation to come up with something just for the sake of providing a label.

Will be trying to contact Xian's ped's office next week to see if her lab results are in and if they'll give me copies to take with me. I can bet they'll find some way to prevent me having them right away---either because no one there will understand them and will want to consult someone else, or if there are positives they'll want us to have an appointment first (but none will be available for weeks), or no one will be able to get someone to consent to give them to me, or....I'm sure I could have a contest to come up with possible reasons! But we'll see, maybe I'm just getting cynical. Good to know that the Seattle doctor can access them, so at least I should find out the results through her---they are supposed to be faxing them, I think? I just hope that they are positive and clearly so---weird to want to see something show up, but Lyme is at least a treatable option.

1 comment:

Louise said...

This seems like such positive news!! I had to cry when I read that Rachel clarified her cough was not a "spell". Dear sweet girl.Xian looks radiant in her picture on the swing. I so pray for quick resolution----and this Dr. in Seattle suggesting treatment--YAY halleluiagh, already! I agree that the Gov't needs a wake-up call about what Xian has gone through. All sorts of "warnings" and info for both Lyme disease and West Nile and yet such a struggle to difinitively diagnose AND treat LYME. Unnacceptabel. Safe travels Linda,safe travels.