Monday, April 7, 2008

The Bad Days….

We’ve had a rough weekend. Snowed in on Saturday for most of the day---spring snowstorm brought a pile of the wet slippery stuff, and didn’t get out much Sunday. Xian’s been having unpredictable fits of screaming and crying---not as severe as the usual reactions to too much protein (and I’ve been monitoring that fairly well), but enough to make excursions unwise unless they are strategically planned and short. I have a feeling that Xian’s new mood swings are connected to what’s going on hormonally in her body---bad enough for a 11 or 12 year old, but I’m sure it’s worse for a kid who cannot make sense of any of the myriad of things she’s experiencing---and she’s continuing to show further signs of hormonal imbalance. Her sleep troubles are worsening---in the fall, the late nights meant usually she’d fall asleep around 10:30, and now we are often looking at post-midnight with 7:30 or earlier wake ups. So, it’s exceedingly rare to have those couple of quiet hours in the evening to help recharge my batteries---it was important time even before Xian’s illness. I’m fighting off some virus, which I am sure is influencing my level of fatigue and gloom.

Rachel’s been having a hard time lately---talking a lot about wanting Xian’s ‘spell’ to break and to be able to do some of the things that we used to way back before it all started. What’s hard for both of us are seeing the little glimmers of the ‘old Xian’, enough to remind us of what life used to be like. It makes us hopeful, which in some ways is harder than just dealing with the ‘new Xian’ in the moment and not thinking too much about what she used to be, or our future. The ‘old’ is usually combined with the ‘new’---on Saturday night when I’d taken Rachel up to bed and left Xian watching Cinderella downstairs, she’d found a pen…..scribbled all over a pillow case, and when I took it off later to spray and wash it, I found she’d written two of the letters of her name on the pillow, underneath. Over the past few weeks, she’s barely managed to grip a pen….so it was a surprise, even if the old Xian would have chosen a more suitable writing surface. We’ve been collecting a few of those McDonald’s Disney princess toys---Xian’s shown little interest in any plaything for over a month. But while I was doing something upstairs she managed to take the little cardboard ‘jewels’ and trim off the insertion tags and put them back into the tiara and the ring, so they looked prettier. Attention to detail and similar kinds of ‘aesthetics’ was fairly central to her personality prior to this illness. She’s been wearing the tiara and ring---something she would have done in the past (Xian was the kind of kid who went to daycare in full ‘regalia’, including those hard to walk in princess shoes).

No appointments yet this week---having three days worth to get to last week, and some early ones was fatiguing, but it’s equally challenging just sitting around and waiting for test results. Each set of new tests brings along new conditions to worry about (the untreatable ones) as well as the hope that maybe they'll find something that will give some answers and a course of treatment. With Xian's testing roller coaster now going into the seventh month, it gets harder and harder. (And I thought adoption waiting games were difficult---those were both beach holidays in comparison with this...). With me feeling crappy and Xian having the mood swings we’re not really up for our usual distractions---heading out to the drive thru to pick up a coffee or one of those McDonald’s toys. I figure given our odds for the rare and unusual, maybe it’ll also work for ‘rolling up the rim’ at Tim Hortons. So far, I’ve managed a free coffee…. Maybe I should be considering lottery tickets.


Louise said...

I am sorry you had a rough weekend and that you aren't feeling well yourself.
While your blog is medically "deep"it is wonderful you have opened this. There could be the odd chance of someone somewhere reading and knowing how to help.
Please let me know what I can send/do from Ontario to help. Prayers -of course. Girl, you and your girls are #1 on my list of shared lotto winnings.
Do you have respite care available for when you need a break?
Take care. My thoughts are with you.-Louise

MyGirlElena said...

My name is Maria. I found your blog through the SWT Message Board. My heart goes out to you. It is tough for me dealing with one healthy child. I just don't seem to have enough time and I wish I could give her more. So I imagine how difficult it must be for you trying to care for both girls and give them both quality time.
Anyhow, I know you probably don't want any sugggestions, but I read something similar to what you are describing with your daughter (I think it was in a Reader's Digest) and the child turned out to have something in her adrenal glands.
I haven't read all your posts and maybe you've already checked this out. But just thought it was worth mentioning.
Take Care and God Bless!!