Thursday, July 15, 2010


We haven't been getting much sleep. Last night, Joon had her EEG. She wasn't very happy about having the electrodes attached to her head. She kept trying to pull them off, and then cried when I told her not to. Then she got up at 4am. I changed her, then fed her, then Penny woke up and I changed her and fed her. Then Joon started freaking out about the electrodes again, and she woke Penny back up. After a while we gave up on going back to sleep and just went and grabbed a coffee instead.

They took more blood for more lab tests. Then they told us she couldn't eat or nurse until after her MRI, which was scheduled for 3:30 pm. The physical therapist and occupational therapist came in and worked with her for about half an hour. She was really not in the mood, probably partially because she was hungry. Then the speech therapist came in and worked with her. Joon did a lot better with her. They played with a toy, then the therapist brought out these two little voice recorders things. You can use them to record a word or phrase, and then Joon just has to hit a big button to get it to talk. She started working on teaching Joon to push the button, and left one of the recorders with us. I recorded "No." and told Joon that if we're doing something she doesn't want to do, she can push the button and we'll know to stop.

The neurology team came in and checked her out again, and then the infectious diseases team also came in and examined her and asked a bunch of questions. The head neurologist told us about the EEG results. He said Joon had one little seizure, but we hadn't even realized it had happened.

They took the EEG electrodes off, and her hair was all full of glue, and the oil they had used to unstick the electrodes. A couple of nurses helped me bathe her. They put some water in the tub, and then I sat her on the side and put her feet in the water. She was excited, and immediately stood up. She was voluntarily bearing weight on her legs, but she still couldn't balance, so I had to hold her up. She sat in the tub for a couple of minutes, but then she started freaking out. I had to pick her up, and they used a washcloth on her while I held her. Then I had to sit on her bed and hold her in my lap while they washed her hair with a basin of water under her head.

A little while later, they took us down to radiology. Andrew took Joon back into the MRI area and stayed with her while they sedated her. They did another MRI (her third), and then while she was sedated they did her second spinal tap. While we were waiting for her, my mom arrived. She hadn't been able to get up to Denver until today, because she was working. She had off today, so she came up. Joon woke up, and we went back to be with her. We stayed in the recovery room for about half an hour, then went back to our room.

We all hung out for a while, and ate spaghetti that my mom made for dinner. Then the metabolic team came up and talked to us. They said today's MRI looked normal, though the one done last week had a couple of spots. That's a good sign. They said they've done a bunch of tests for metabolic problems, and the ones they've gotten results on so far are all good. Some of the other tests will take longer, possibly as long as three months.

Andrew and I packed up some of our stuff, and then we came home, along with Penny. Andrew is going back early tomorrow morning, but Penny and I are staying here a little longer. I have an important appointment early in the morning, and then Penny has her two-month appointment the next day. So we're going to stay here until after her appointment. I miss Joon so bad already, and feel awful for being away from her. I've never been away from her for this long before. :(

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