Today has left me feeling optimistic.
Joon started out in a bad mood. She didn't want to cooperate with her therapists, and she was very fussy. But then we opened the window shade, and took her over to the window. We sat on the fold out couch that we've been sleeping on, and looked out the window.
We played on the couch for a while, and then Joon started trying to climb off the bed. She turned over and swung her legs over the side of the bed, then lowered herself to her feet.
She was all wobbly and leaned on the couch, but then she got her legs straightened out under her, she turned around, and even let go for a few seconds.
It was awesome.
And then I put down the tumbling mat the physical therapist brought yesterday, and Joon and I played on the floor for a long time. She rolled around and did all sorts of things. It was a huge improvement over the past few days.
Joon is still not drinking, and we need to find out why, and figure out how to get her drink. The physical therapist watched her eat breakfast, and then she asked someone from the swallow team to come in and watch her eat lunch. They were talking about doing a swallow study, which would involve taking her down to radiology again and doing an x-ray video while she's eating and drinking, but they decided to just do an informal study, and just watch her eat. The woman from the swallow team said it seems like the liquid just comes up too quickly through the straw, and she gets too much and gets overwhelmed by it, and that makes her scared to try to drink. So they gave us some thickener to add to her drinks, and we just have to keep offering her liquids and she should eventually drink.
Right now, the neurologists are no longer sure it's ADEM, because of the way she's been responding to the treatment. They're saying it may be NMDA encephalitis. They tested for it, but it'll take weeks to get the results. But the treatment is the same in the beginning, just the steroids and then IVIG, and then if those didn't work, another medication. But that would wait until we get the test results. So right now, we're continuing with the previous plan.