Sorry I haven't posted in a while, I feel like living in this hospital is like being in a time warp, there is no sense of time here and the days blur together as they go by.
Anyway, since last week, she's been doing really well. She is smiling a lot more now that she can see us a bit better too, which is always wonderful to see. Her eye is healing very well, she no longer has the patch, but she has a plastic clear shield over her eye to prevent her from hitting herself in the eye (which she does do, by the way, with her involuntary movements)
They are weaning her off of the Ativan, and giving her more Clonapin, and Clonadine to help with her heart rate. The Clonapin is more off a long acting version of the Ativan. She must still be getting used to the change in dosages because she's been very active today, didn't really nap much.
The Neuro team also is trying Tegritol starting tonight, so we'll see if maybe that helps with some of the movements while they figure out the diagnosis. No news yet from the muscle biopsy or the CSF (cerebral-spinal fluid) tests. On a good note, Leah will be participating in a research study which will look at her entire gene structure! The genetics team got in touch with the main researchers and they came to talk to us today about it. It's something that in 6 months to a year, hopefully will be available to the public, and they would do this test first, then use that as a guide to figure out in what direction they should head with the diagnosis. It will be a long process though, most likely about 2 months or more. They also told us that they may find something useful, but they may also find stuff that they can't explain or may not help. So, really the research will probably help them more than it will us, but it's better than nothing. We are not really going to keep our hopes up on this test though, it may not result in anything.
She has her left eye surgery on Thursday morning, and if all goes well, she should have her contacts or glasses by the following week. I still have to contact our insurance company to see if they will cover her glasses, I will probably do that tomorrow.
I can't think of anything else to mention, if I do I'll post some more.
Zev and I are going out for dinner tonight, sort of like a date, close to the hospital, so maybe later I'll post some pictures and the new video of her smiling!