In our numerous conversations with doctors and specialists I'm often asked when I first noticed something going on, as well as sometimes being asked when the last point was that she was fully unaffected by her condition. While it seems like a fairly simply question, it gets tricky. When did I first get the first sense something was very wrong? Sometime in early fall, after she'd changed into the new (kindy) room. But looking back, things were well on their way by then. I'd simply explained away what was going on---as maybe a new 'phase' or an odd return of sensory issues she'd long overcome from her orphanage days, and I'd been trying to find a cause for her sudden severe insomnia. I remember posting to the CanadiansAdoptingfromChina group, wondering about ear issues (and she did have big earwax plugs removed at the doctor's office---but it wasn't any kind of 'cure', in fact, having improved hearing made things dreadfully worse). I think she'd been dealing with her early symptoms for a while---probably since some point in August, but a daycare room shift the first week of September meant that she could no longer rely on long term memory of old, established routines and patterns to help her--and she'd probably been covering some lapses for a while in her other room.
Since Rachel was starting daycare for the first time, while I knew Xian seemed unhappy, I was distracted with dealing with Rachel's adjustments and upsets for those first few weeks. When Xian made the room change, for weeks she kept putting her belongings/shoes etc. in the old places and kept returning to her old room (even during the day she'd tend to wander back)---her new teachers interpreted this as 'behaviour' related, but I wondered, as it seemed odd, almost as if she actually couldn't remember her new 'locker' and new places for her shoes and really couldn't remember the new routines and expectations. Short term memory issues are now a documented part of her complex set of symptoms, so I am certain the new room put her into a confusing situation, in addition to missing her old friends and teachers. She started refusing to eat certain meals at 'school' and that too was seen as 'behaviour', though we now know what too much protein does to her. While she'd always had bit of a 'drama queen' personality she'd never been known for long lasting behavior troubles--in the past any 'bad days' at daycare predictably came when she was coming down with something or she'd missed some sleep. Since she was now struggling nightly with insomnia the new troubles could be blamed on sleep, though she seemed weirdly untired when severely sleep deprived (even back then she was having trouble falling asleep before 10, for a kid who used to need her 11.5 hours and dropped liked a stone in the past---currently I am lucky to see her drop before midnight and get maybe 8 hours).
What we noticed earlier, in August, quite uncharacteristic for her, was that during a trip to Victoria she suddenly no longer wanted to go out on any outings, refusing the petting zoo, trips to the store for treats with Grandma, and she started having perplexing temper tantrums, or so it seemed---not in response to any particular event or thing, just times when she'd begin by getting irritable and it would escalate to a wild bout of screaming and thrashing around. While I wasn't keeping track of anything then, I have to wonder if it was the beginning of her later responses to too much protein. Because they tend to happen about 2 hours after eating, it took me a long time to figure out the pattern. The other thing we noticed in Victoria was that she had some little moments when she simply didn't seem to be quite "there", laughing quietly or smiling to herself without being connected to anything surrounding her. In fact, my mother and I joked about it a little, even, not knowing what it would foreshadow. In the beginning, though, she still had plenty of moments when she was still her old self---organizing elaborate craft or drawing projects, doing her "Ladies and Gentlemen..." dance routines, acting like the protective big sister she used to be and engaging in her share of sisterly squabbles, too, waxing philosophic about her thoughts about being adopted or Chinese or a big sister ("Mom, did you ever visit your orphanage?" she said once as we were driving somewhere, as she and Rachel were comparing notes about their own prior to adoption---or at least as they imagined them). Way back then I had a vague sense of something being "not quite right" (and that's when I started the first of my Google searches of her symptoms), though at that stage I wondered about ear/hearing issues or things like minor thyroid issues, or maybe something related to sensory integration. In early fall, Xian's urinary issues also started to be more apparent, and it came up in relation to daycare when it would take her "forever" to go as the group was getting ready or in the morning before we left for 'school'---after I spoke with daycare, I discovered she was probably only going a maximum of 3 times a day, plus having trouble "going". She was seen by her doctor for that, plus the sleep issues---had some urine tests and a kidney and bladder ultrasound, and when those were clear was referred for a urology appointment.
Xian seemed to perk up for a few weeks at the end of September---my parents arrived for a short visit and over the time they were here she seemed more or less back to her old self, improving a little with her sleep (though not entirely) and seemingly now adjusting to the new routines in her new daycare room. She had a hearing test about that time and did very well, including happily going off for the testing on her own with the audiologist and being very cooperative--something that seemed to show a return to growing independence and self-assurance. But, by Halloween the sleep troubles returned with a vengeance and she was now showing more obvious memory difficulties. At the time I simply thought she was being stubborn---doing things like putting her pajamas on over top of her clothes, needing constant reminders to follow our morning routine--and she also started needing much coaxing to get her to eat to the point where I was feeding her and so was her daycare teacher. She suddenly became unusually clingy---standing and leaning against me during household tasks when normally she'd have been off playing with Rachel---I'm sure now that whatever was going on for her was scaring her, though I then wrote it off as a bit of temporary 'weirdness'. Halloween brought me to my senses and made me clearly aware that Xian had something seriously wrong going on. The same kid who had been delighted for the past two years with the kiddie events at our nearby mall (including lovely indoor trick or treating, craft events and a petting zoo) seemed disconnected and afraid, and while she enjoyed picking out a costume at the Disney store (on the big markdown day), though needing some coercion to go into a crowded, noisy store---she and Rachel were hot pink "Jasmine" girls---she mostly just wanted to wear her costume at home and play quietly, rather than venture anywhere with it. At daycare, she was reacting to any sort of extra sound---acting out during music, rushing to turn off the tape recorder if one of the teachers dared put on some background music, and having occasional violent tantrums to the extent that she was sometimes moved to the director's office (at least a couple of them happened after lunch, which would be consistent with more recent patterns). Then, at least, she was able to talk a little about what was going on---while not able to explain why, she could at least tell me that she had to go to Vivian's office and she "had a bad day." Around then, she was starting to talk about her thinking not working occasionally and being incredibly upset and apologetic when she was reprimanded---she did seem to have some of her own awareness that something was going wrong and that she was disappointing the adults around her. What had been occasional moments of disconnected smiling/laughter/moving around erratically became worse---and could no longer be explained as a true reaction to something funny---she had them following meals and sometimes in the evenings, and they were observed at daycare. She also had periods of staring that began--she'd pick up a DVD box and look at the image for an hour if not stopped.
And then, she began having whole days where she barely spoke--a weekend where I counted six words---and many periods when she wouldn't respond to questions or conversations. We returned yet again to her doctor where the possibility of a seizure disorder was mentioned---the ped thought she might be having many absence seizures every day and she was referred to a neurologist and for an EEG, though she ended up with both a bit quicker when I couldn't let things drag further and took her into the ER (twice, actually--the second time I refused to leave until they admitted her). Will share our hospital experiences eventually....
Looking way, way back, I often wonder if her trip to China and getting ill there a year ago January may have contributed somehow to the illness. She managed to drink some bathwater (we think) and the day before we headed home she was incredibly ill....it took her nearly a month to improve completely, between the gastro symptoms and fatigue, probably in combination with jet lag. The intestinal symptoms lingered so I had her tested for parasites but nothing turned up. Otherwise, though, she was back to her old self fairly quickly---and making great adjustments to her new role as a big sister, considering that little sister had a strong mind of her own when it came to Xian's belongings and was quite 'smack happy' with her big sister in her first weeks home with us. (Xian, after being bashed on the head by 26 month old Rachel in China was known to comment, "Thank you, oh thank you for getting my sister!" And she really wasn't being sarcastic. She learned to defend herself a bit better once we were home and back in her own turf, though, and some days were a bit like the WWF around here for a bit!)
The thing I wish I had a better record of is something I'm classifying as "last moments" (though I hope they are only temporarily that and that we'll get to witness her regain the lost skills and interests). When was the last day she was fully "the old Xian"? "What was the last fully interactive conversation I had with her?" "When was the last day she could still draw a picture?" (one of the more recent declines) "When was the last time she could still enjoy climbing on a playground structure?" (I have pictures from one of the last times she did, at the end of September, but I don't truly know when the interest and the ability left her.) "When was the last time she responded as a big sister?" and of course, "When was the last time I wasn't living with the clutch of fear in my belly?" and "When did our 'normal' life end?"
But although Xian's experienced a long overall decline in many of her abilities, she also has some degree of fluctuation---a lot more earlier on, but still over the day some abilities come back, sometimes in brief glimmers, and sometimes she shows surprising and unexpected memories or abilities. For example, when she was being tested by the neuropsychologist she could do puzzles, and often she is able to do them at home if they don't require too much manual dexterity. Some days, even though she may not be responding much to us, she'll sing along and imitate Dora's actions in a video. She's managed to find (and sneak) hidden chocolate. Her language is sometimes very clear (with surprising sentences, such as her response once to my mother, "Grandma, it's a joke!!" when Rachel was being silly next to her) and sometimes she cannot find the right word, calling clothing "pajamas", toast becomes "butter", "Scooby Doo" meaning the Enchanted video. Her pronunciation also shifts---usually in the morning her speech is slurred, and I am "Mamal" Dora is "Doral" with "L" added to most ending vowels and consonants less articulated. Anyone who has spent much time around her notices that it's like some drug or toxin or hormone is coursing through her system and sometimes there's more of it and sometimes "the old Xian" almost breaks through.