Joon's condition has remained unchanged over the past few days. She has improved a lot in the past week and a half, but she's still nowhere near where she was before. I'd say she's on the level of a 9 month old right now. She can sit up unassisted for short periods of time, but she can't stand without support. She can now roll over and crawl a little bit. She's eating well again, but she still can't drink. The only thing she can say right now is "Yeah."
Before she got sick, she used to be quite advanced in her speech. She had started talking early, and quickly had a very large vocabulary. She loved talking, and would spend all day chattering away, all the time. She'd tell everyone long stories about things she had done, and she could spend twenty minutes telling you all about going for a walk around the block. She'd make up fabulous stories about her toy animals, and make up dialog for them. She talked for hours and hours every day, and now, all she can say is "Yeah."
A few days ago, I was watching some videos of Joon just being her normal self before she got sick. She was talking and singing, running and jumping. Andrew said "So she's never going to be like that again?" I told him I don't know, the doctors here are really great, and I'm sure they'll be able to help her. But I wasn't sure. For a long time, I thought she'd be back to normal any day. I was confident that this would just go away. But now, I don't know. Most of the time, probably 90% of the time, I think she'll be okay. But the rest of the time, I'm scared. I'm terrified that she's recovered as much as she's going to, and this will be it.
When I was reading about ADEM, some things said she had a good outlook, and some things made it seem more negative. Overall, I felt like she would probably have a good prognosis, and I was feeling okay about this.
I asked the doctor today what he thought of her long-term prognosis. He said he doesn't know, she might make a full recovery, she might recover half of what she lost, or she might not recover any more at all. He said each possibility is equally likely.
I'm having a hard time keeping positive about it. It's all just so uncertain. We have no way of predicting how she's going to do. She could be like this for the rest of her life.
I have a few videos of her that were recorded in May and June, and some from the past week.
This one was from May 15, right after Penelope was born. Joon was jumping on the trampoline, then she "read" a book to Penny, making up the words as she went along. Then she sang Penny her own version of Hush Little Baby, promising that Grandma will buy her lots of things, like a balloon, a whale, and a watermelon.
This was from June, and she was talking about The Wiggles, and what each one does, Anthony eats, Murray plays music, Jeff sleeps, etc. We talk about the "Where's Jeff?" song, which talks about places Jeff sleeps. Then she talks about the birds eating dragonflies.
The next two videos show what Joon is like now. The first video is of her relearning to eat, and the second is of her playing with her dad. They both show how her motor skills are impaired, and she can't talk.
It just breaks my heart to see the huge difference. Watching these videos and thinking about how she was before, I miss my little girl, even though she's right here next to me.