3/12/09

Lily has been sick with a cold lately (us too) so her whole schedule is off (not that she really had one, but it's been wackier than usual). I've been contemplating getting her evaluated again to see where she is at since she is doing so well, but I don't think it would satisfy anything except my own curiosity. She hasn't had many seizures lately, thankfully.

We brought her to see the wholistic dr. again on 3/9, and he explained all of her test results from her stool and urine. It was a lot to take in, and I'm still trying to sort things out. They took some blood too and will have to take more next week to satisfy all the testing that is needed. They did find some yeast, so we will be putting her on some antifungal medication, as well as increasing her folinic acid so that she will better tolerate her MB12 shots. I may eventually try the diet with her, but we'll see. My first goal is to get her off the bottle, we'll see how that goes.

She is back to sleeping really crappy now. Last night she was up from about 2:15am to about 5:45am. So she slept from 8:15pm to 2:15 then from 5:45 to 10:45. Total sleep time is ok, but not an ideal situation! She went down for a nap today at 4:45pm so she won't go to bed till late tonight, but at least if she goes to bed late she has a better chance at sleeping through. Yesterday we did no nap (because she got up at 11am after another similar night) and it didn't help her sleep at night. We've tried every schedule there is, nothing seems to work...at least not for long. She was funny last night though. I was soooo trying to sleep and she was doing everything she could to get me to stay up. As I drifted in and out of consciousness she would open my mouth wide with both hands and hold it open with all her might. She would roll on me, climb on me, tickle me, and the best one...kiss me (she woke me up with 5 in a row!). She really does try to fall back asleep, but even with the melatonin it is useless.

She hasn't had many seizures at all this week. We've been home a lot more though I'm not sure that has anything to do with it. Though maybe the lack of seizures has been triggering her horrible sleeping pattern? When she was having them a lot was when she'd sleep well. I guess that makes sense. I have to make her an appointment with a neurologist, and more than likely have a 24hr EEG done. I want to avoid that at all costs. The hour long one we did was the worst hour of my entire life, and I could just not imagine doing that for 24hrs, though if we could capture her sleeping would probably be a good thing.

Anyway, Lily is doing very well with her eye contact and experience sharing. She really seeks out my company. She's sought me out before to help her with things or to use me to get what she wants, but lately she has just been taking me to where she is to just sit with her. She is doing well on the potty, though it'll be a long while before she's potty trained. She amazes me daily with new skills and understanding. The other day she put away all the silverware, all by herself. She has been throwing appropriate things in the garbage (on her own) and can follow two step directions usually fairly easily. She still hasn't lined up any more toys!!! She has shown no interest in any of her figure sets except for her mickey ones that she plays with in her Mickey Club House (which she uses very appropriately). She has been spinning more and dragging her head across the floor(that's a new one) and of course is still looking at her hands a lot. She seems to substitute one action for another. All in all, steady progress.