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.


Louise said...

Mamma Mia, girl!!! YES & cheers to 2009 bringing on complete return to health for Xian!!! Rachel will be able to kiss that spell goodbye forever and have her sister back!! Xian looks so bright in her photo! Linda-you have done remarkably well for yourself advocating on Xian's behalf in 2008. Although not ever to repeat it...or wish it on anyone else....YOU have been amazing. Blessings to you and your girls for 2009!-Louise and Olivia

Louise said...

Linda--I just read your article for the CB newsletter and although I have quietly followed Xian's story....and she has been in our prayers constantly....reading that, had me a puddle of tears. YAY you sharing that so honestly, pointing out that the medical community is not always listening. Who knows, who you ....and Janet and her son...have helped.