Today has been an 'interesting' day to say the least. Yesterday another single mom friend and her teenage daughter (we belong to a great group of int'l adoptive single moms locally---they have been great supports both in matters practical and otherwise) came over to sit with Xian while I had a few hours to organize my tax receipts and do a bit of paperwork. I went to my favourite café bakery---Wild Earth---they have free wireless (so I could email my accountant) and also usually have great deals on day old baking. I bought one of the 'mystery bags'---assorted pastries, croissants, cheese buns and such---thinking that Xian and Rachel might like a turnover or something. Well, funny thing, that.... Since we were running late this morning (Rachel still attends daycare most weekdays, to keep some of her old routines and normalcy), I pulled out the bakery bag and gave each girl half of what I thought was some sort of berry turnover in addition to their bowl of fruit salad. Xian gobbled hers up and asked for more---wisely (and little did I know how wise that decision turned out to be) I told her to eat more fruit salad. Rachel ate more slowly. "Mom," she says, as she gets to her last bite, "It's not fruit, it's ham." It was hard to tell what was in the shred she handed me---maybe custard mixed with fruit? It was the right colour for ham, but given the taste buds of a three year old who hoovers in everything without a second thought I was sure she had to be wrong because it tasted sweet. "No, Mom. It's ham," she insisted, looking at me like I was a very, very stupid person. (Okay, I hadn't yet finished my first coffee and was, as usual these days, underslept...) Turns out she was right. Not only was it a ham stuffed savory croissant---the ham was mixed together with some kind of cream cheese! (I later inspected the 'stuffing' of the remaining one.) We're probably talking about 10-15 grams of total protein, or maybe more between the pastry, the cheese and the ham. Xian can normally cope with a bit of sweet pastry, though will sometimes have a bit of an emotional outburst if she's had more than about 5 grams of protein.
But the real proof was in the reaction Xian had about 2.5 hours later---one of her Linda Blair moments at its best---one of the 'full tilt' events where she lost bladder control, had wild hallucinations, screamed blue murder, bit and scratched herself and smacked herself in the face until she had a nosebleed---while I was holding on to her trying to keep her from flinging furniture or herself, she'd manage to get a smack/bite/scratch in occasionally when I relaxed my grasp thinking the intensity was finally easing. During this one, she did what has been typical for such things, screaming for me to cuddle her while also yelling and sobbing, "Go away, go away, I want my mom". Sometimes, it seems, the hallucinations make her unable to recognize me. And the usual, "Make it stop! Make it stop!" "I want to suck my finger! I won't suck my finger! I want to suck my finger!" (and when/if you let her she will bite it until she draws blood, if not stopped)
This time she had a slightly milder 'foreshadowing event'---about 15 minutes of 'just' screaming. At that point I went to the phone and called the metabolics coordinator, reminding him of their request for me to call and see if she could get in to a lab for a blood ammonia if she happened to have an event. Well, the guy was completely thrown by the screaming in the background (and like I said, she was just warming up)---uh, well, he might be able to get the requisition together/sent, but um, well, maybe it would be better to see what we could arrange once Xian has her appointment. I don't think it would have taken much to get him to send an ambulance our way.... Anyway, probably good we didn't head off in the car, given the severity of the rest of the episode once it built up. She's had one in the car, and even with a second adult present (my sister was also with us) it was a pretty scary situation. I've now witnessed and helped her through many, many such events, and I remain as calm as I can during the episode in order to help her gradually calm down---it's very obvious they are deeply frightening to her---what she doesn't need is a freaked out adult on top of what's flooding through her body. But dealing with even one event, even knowing what the 'course' is, really does take it out of a person---just from the adrenaline surge alone. (Yep, I'm thinking big glass of scotch, neat!) I really, really hope she has one of those rare early sleeps tonight.
Xian's psychiatrist called and left a message for me to call her when we were dropping off Rachel, obviously she forgot to check her appointment agenda as we have that appointment tomorrow, which her receptionist then called to remind me about. The message asked whether I'd gotten Xian back into daycare....um, well, without funding to get her an assistant---not likely until she has a diagnosis or something pretty close to one---and without a daycare space, that's really not very likely! And really, since our future is one big uncertainty, getting back into daycare is pretty far down on the list of priorities given the high cost of child care in this city---far ahead of that is figuring out her kindergarten options and getting support lined up before she enters a classroom door. The doc mentioned 'plans' for Xian to be admitted as a psychiatric in-patient (not going to happen, sweetie---that's now in the 'over my cold, dead body' category). Oh, and she wondered about the new symptoms (hmmm, couldn't be worrying too much about them, given that it took you a full week to call back after my frantic message when I thought it might be related to Xian's earlier prescriptions). I chatted with a friend later in the afternoon who said, "You know, I'm kind of feeling a bit sorry for that psychiatrist, but I'd sure like to be able to watch!"