Tuesday, July 15, 2008

The princess begins to wake up

In most fairy tales, the princess suffering from a bad spell caused by a poisoned apple or a pricked thumb wakes up suddenly after the kiss by the prince. (Though around here, we're partial to the Dora version, where Boots the monkey falls asleep after eating the enchanted apple and needs a hug from a "true princess" to wake up.) With tick-borne illness the awakening is a slower process, the "enchanted" one awakens a little more each day. Because it's gradual, I do want to keep track of the little steps---partly as 'proof' for Xian's doctors and because who knows what value it may have later. (Maybe there will be some publication or other out of this...).

Xian's had a few new milestones over the past couple of days. Yesterday she completed a large puzzle---Rachel had started it and put in all the 'easy' outside edge pieces (it's one of those larger cardboard puzzles in a frame) and Xian completed it except for four middle pieces which were quite similar. She's also sometimes been able to answer "or" questions properly (i.e. "Would you like water or milk?"). Since the onset of her illness Xian's been stumped by them because she's not been able to remember two things at once---sometimes not even been able to answer direct yes/no questions when she's been very ill. She's also slowly adding more nouns. But this morning was a real step. We brought Rachel to daycare and they were having French (which is done via music/movement) and the teacher (Xian's old daycare room teacher) invited us to come in, too. Now as everyone who's been in contact with her since the start of her illness knows, Xian's had horrible auditory sensitivities and a lot of trouble with music in particular....it was one of her initial 'clues' last year in daycare, as she started having great difficulties every time there was a music activity. Xian was thrilled to be invited in (looked alert and happy---another change from the glazed expression), and participated quite fully, watching the other children and listening to the instructions, dancing when there was dancing, singing or repeating when those were required. Blew me away, really! (And her sense of dance/rhythm seems to be fully intact, too!) She did have a few little moments when a pitch or sound bothered her (she'd let out a bit of a yell), but only a couple of times. We had a chance to chat with the teacher for a few minutes as we were leaving (and caught her up on the diagnosis---she's continued to show a lot of concern about Xian's situation), and Xian's been invited back for music/French each week, which we'll try to attend. (Rachel, on the other hand was a little monkey because her mother was present---so will have to work on that a bit! She was happy to have us there---a little too happy, if you know what I mean...). Xian's now looking alert and aware far more--tends to glaze out if she's not feeling well, or if we're in the car she'll tend to zone a bit. She was very smiley first thing this morning and really didn't react all that badly to the mepron---had a little reaction after her azith. dose, but not nearly as bad as the past few days.

Switching the order of her meds does seem to work better--as well as taking them a few hours apart. I think it's been a bit hard on her system to take them closer together. Xian's still struggling with sleep---somehow I suspect that's going to be one of the symptoms to leave last just because that's the one that causes so much impact on all of us. But, she's not sweating quite as much at night and she's tolerating more variety of foods, with any 'bad' reactions a lot milder than they once were. So, definitely seeing the medications working, thankfully.


Louise said...

Another wonderful post!!! YAY for Xian!! Like her teacher, I am sure many who have known the 'real" Xian are awaiting the awakening. It's heartwarming to hear. Continued prayers Linda.-I like what was written inone of your last comments about your fierce mamma's love. Some people would not have had the stomach to advocate as you have. Hats off to you!@!

Sampsons said...

Continues to be fabulous news! I'm sooo happy for you, Xian and Rachel that there seems to be a light shining at the end of this tunnel.

SI said...

What a relief it must be to know that treatment is working!