Thursday, December 25, 2008

Mamma Mia, Happy Holidays!

We've had a busy couple of days -- and fortunately for us, Xian's been having a good period with very few symptoms and a bit of appetite improvement. Considering we've had lots of social events (which tend to still be a bit harder for her to deal with than 'life at home') she's done very well. Will try to post a few pictures of both girls once I have a chance to actually get both of them in one picture and where one of them isn't doing something goofy...which is what I have so far! This year's holiday is far different from Xian's last Christmas---which was mostly spent in hospital in a fog. My own recollections of last year are a bit of a blur, and I have to confess that my preparations this year definitely brought back those feelings from last year, when it was clear Xian was very ill but there were no answers. This year, though, Xian has been an active participant---she and Rachel have been in charge of our tree (a four foot silver tinsel number). Our holiday music has been a bit unusual. I finally managed to get a copy of the movie DVD "Mamma Mia"---we've had the CD and both girls love singing along in the car, well, until the CD player in the car decided to pack it up...that's on my Jan. to do list. We have the DVD that includes the 'sing along version' and both girls are keen to belt out "Mamma Mia", "Money Money" and more. (Fortunately they are mostly uninterested in the story line and haven't yet noticed the couple of curse words...though I guess it's a sign of Xian's recovery that she's now trying to 'expand her voculary' in such ways occasionally!). I'm hoping that one of these days they'll go to bed early and I can actually pay attention to the movie instead of being the musical theatre director (they prefer to sing while being videotaped).

Xian's also hit a new milestone. She actually has a bit of a real cold, with a cough and 'froggy' voice. Rachel and I have had it for a few days, and what's been typical since Xian has been sick with Lyme is that she'll look pale and seems to have something 'extra' she's dealing with, she won't actually show any typical cold/flu symptoms. From talking to other Lyme sufferers, it seems that the lack of cold symptoms happens to quite a few folks who've been more severely ill...given that Lyme messes up the immune systems, I have to wonder if it doesn't mess up the ability to mount a response to viruses. Anyway, while normally a kid with a cold won't be anything very exciting, this seems like a pretty positive indication that Xian's immune system is 'coming back'.

We're off to another dinner with relatives. It's nice to have a break from our hectic morning routine and all the school/daycare drop off/pick ups/transfers, and given all the weather/travel problems I'm very glad we decided not to go anywhere for Christmas. We do have another Seattle appointment, but not until towards the end of the holidays--hopefully by then that Pacific Northwest snow will be finished.

Happy holidays to everyone and all the best for 2009 -- I can't say I'm at all unhappy to see the end of 2008, and am hoping that 2009 sees a big remission to Xian's illness.

Friday, December 19, 2008

Long overdue....

It’s been a while since our last update. Life has been pretty busy with work—a little too much, too soon in terms of Xian’s needs. Her time on the Amoxicillin hasn’t been too much fun (she had her azithromycin switched for amoxi at the end of Oct.), as it makes her feel nauseous fairly constantly, which also has an impact in terms of getting her to eat enough and take her other medications (one needs high fats and the sulfa/Bactrim irritates the stomach). The work I was doing in November required helping with some morning classes, and that was pretty difficult---having to get food and the meds into Xian (pretty much an hour and a half process on a ‘good day’) and then half the time having to figure out whether she was feeling well enough to actually attend daycare or school. She’s definitely thinner at the moment although her appetite is slowly improving again. She’s also had on and off sleep issues as the meds have given her die off – a bit more constant this cycle, too. Not quite sure how I will manage with work in January, though I’m meeting with my boss next week before the holidays. One of our issues, especially in regards to work, is that people believe because we now know what she has and she’s getting treatment that everything is fine and 'back to normal' now---not realizing that we’re still dealing with months of meds, lots of medication side effects and cycles of bacterial die off that make her feel very ill and also give her periods where significant symptoms will return temporarily, including the neurological ones. We will likely be dealing with chronic illness until her treatment ends, but because she looks so much better than she did (and her issues aren't immediately visible) the assumption is that she's all better and I can do everything I used to be able to do.

Everything pretty much takes me twice as long as it used to in terms of work and I can’t accommodate much that’s ‘last minute’--we're also still dealing with many appointments as well as the Seattle trips every 2nd month (we're now nearing the $10,000 mark for our expenses there, with no real hope of reimbursement, although I am certainly going to try). My Christmas wish for this year is that the local medical community will finally step up to the plate in terms of Xian’s illness, and be willing to consult with a Lyme specialist directly so we won't have to keep making those trips. The really strange thing is that I was contacted directly by one of Xian's specialists to ask if I would share the contact info for her Lyme specialist for another child's family...pretty sad state of affairs when the doctors are coming to us, don't you think? Though I guess it's at least a positive move that someone is recognizing neuro Lyme symptoms and that the child may be able to at least get treatment before degenerating completely.

The good news is that cognitively Xian continues to make gains and lose symptoms, even as she’s dealing with ongoing physical discomforts. Her memory of when she was very sick is also coming back in bits and pieces and she does seem to have memories of times when she was unable to communicate, though that’s a bit frightening for her. She also is quite aware that there have been changes to her personality and she’s been talking a lot about “the Old Xian” and “the New Xian” She decided she needed her hair changed (bangs cut) to make herself look different as "The New Xian"---she doesn’t like how she appears in the pictures from last year when she was much sicker. I’ve been pushing to get some speech assessment/support at school which looks like it’s in the works---language seems to be her biggest area of frustration because she can’t get things out as easily and knows she’s not able to speak as well as she could before. She still has minor slurring/pronunciation issues, which get a bit worse when she's having bacterial die off---I’ve heard that with Lyme there can be vagus nerve issues, which would probably explain the speech, swallowing, and digestive/urinary issues she tends to experience all at the same time. They are all improving gradually, but come back often enough to remind me that she's far from finished her treatment, even while she's far ahead of where she was a month ago. Her biggest gain in the past month has been getting her drawing skills back--she's now back to spending a lot of time working on detailed and very recognizable drawings, including trying to represent pictures she sees elsewhere. (The new thing is drawing "Batman girl").

It’s strange to think that a year ago Xian was beginning her series of hospital stays….a pretty horrible time for all of us. I have to wonder what might have been if she’d been accurately diagnosed back then and it’s hard not to feel angry with a medical system that eventually simply shoved her out the door with no prospect of diagnosis or treatment, especially when earlier treatment would have made a world of difference and spared her and our family a lot of suffering.

We’re having a low key Christmas this year---mostly focusing on activities the girls want to do, and we’ll head to the coast just before the New Year and spend a few days in Vancouver to bookend the next trip to Seattle, which I am truly hoping will be the last one. While the Lyme specialist there has been essential to Xian’s recovery, travelling with the kids and with Xian often feeling crummy, dealing with meds and Xian’s diet while away, border crossings (which are always 'interesting' as a single mom of adopted kids…) etc. is pretty exhausting. The next trip, I figure, should be somewhere with a beach and activities for the girls.

Will try to post some new pictures once I get around to actually taking the ones I'll be sending with that email Xmas card.