Tuesday had some goods and some bads.
Good: They are pretty confident Joon's condition isn't caused by anything contagious, so she's off of precautions, and we got the all-clear to take her out of the room. We put her in the wheelchair, and took her around the floor. We went to the end of the hall, where the walls are all covered in windows, and Joon looked out the windows.
Bad: She had four seizures. They've been trying to wean her off of one of her seizure meds, and it looks like that's not working out well. When she has her seizures, she still functions normally, but her eyes just bounce around. Sometimes her eyebrows bounce too. But everything else is normal. She still has purposeful movement, and she can vocalize. So they're called complex partial seizures.
Good: We had a nice visit from some friends. Unfortunately, Joon wasn't really interested in playing with them, probably because she wasn't feeling good, but I enjoyed seeing them.
Bad: Joon vomited twice. She didn't want to eat much of her dinner, and seemed like she didn't feel good. Then she threw up what little she had eaten, and seemed happier after that. Then when we were giving her the evening meds, she threw up again. She hasn't done it again since then, so we think it was probably just something she ate, and not another illness.
Wednesday was mostly good. They started the IVIG treatment, and I think it's helping.
The physical therapist and occupational therapist took us down to the therapy gym. Joon was really not in the mood at first, but she slowly came around, and she eventually played with this ball with different animal buttons on it.
Joon had three seizures. They were the complex partial seizures again. They decided to hook her up to the EEG again, for another 24 hours, to see if they could capture one of the seizrues so they could see what was going on.
My mom came up, and brought a lot of Joon's toys. She stayed with Joon for the night, and Andrew and I went home. We watched last week's new Futurama, and I had a hard lemonade and it made me drunk, lol.
We came back up here yesterday. We had a lot of delays, so we didn't get here until the afternoon.
We had to give up our goldfish. We have a 125 gallon tank, which had 9 fancy goldfish (mostly orandas). While Joon has been sick, we've been staying in the hospital and only coming home about once a week, for a night at a time. My mom has been feeding them, but we haven't had time to do anything else with them. The aquariums haven't been cleaned in about a month. When we went home this time, we were down two fish. We know we're going to be at the hospital for a few more weeks, so the rest of the fish wouldn't have very good chances. So we decided it would be in their best interest to be elsewhere. It sucks because we had some really nice goldfish, but it had to be done. We kept Joon's goldfish, and put him into the 40 gallon, and moved the turtles into the 125.
Joon spent the entire day playing with my mom and the toys she brought from home. She was in a much better mood than she had been during the time she's been sick. She walked a few steps while holding onto the bed. While she was sitting on the couch, she tried to get into a standing position. And she said "mouth" and "hey."
She had three seizures, and they were longer than the previous ones had been. She finished her EEG, and they removed the electrodes. The oil they use to remove the electrodes left her hair all nasty, and her hair is tangled from being wrapped up for 24 hours. So we're going to have to wash her hair in a basin again. But I forgot to bring her goggles and the shampoo she likes from home. So hopefully my mom will bring them and we'll be able to do that today.
Since Joon's contact precautions have been lifted, there's been a different dog trying to visit her every day. The hospital has a Prescription Pet Program, where volunteers bring their well-mannered dogs to visit the kids. It's a great program, because it does a lot to help raise the kids' spirits. Unfortunately, they've been showing up when Joon is not in a good mood, so she hasn't wanted to play with the dogs so far. But each dog has business cards with their picture, so we've got a collection of three doggy business cards.
Joon received a gift of a dozen balloons and a bear, from some mysterious online friends! She loved them!