Dr. Swoboda's follow-up visit

We had Maya's six month check-up with Dr Swoboda in Salt Lake City this week. Charlie, Maya, me and my parents went on the trip. Just 2 nights this time. Maya did very well during the entire visit. After we went over the same questionnaire as last visit, it was time for the EMG-type test. Since Maya is still congested, the team questioned whether we could give her a sedative. Last time she had a medicine called versed and it made her CRAZY when she came off of it. We decided not to take the risk and not sedate her. The doctor tested the shock on me and it was nothing, so I didn't feel so bad doing that to her. They put these stickers on her hand and then zap. The probes stay on her for a while we talked to the doctor. Charlie and I were busy entertaining Maya with Barney DVDs and blowing a million bubbles. It worked! She didn't fuss hardly at all. Such a sweetie. The results, unfortunately, were not great. Maya's numbers have gone down since the last visit. It is upsetting considering how much stronger she appears to be. Dr Swoboda said it was typical for her age to show signs of strength, indicating it could be more behavior-related than anything else. She says try 6 more months of the medicine and we can get a good indication whether it is working or not. In our hearts, we know the medicine is working. Maya's therapists think it, too. We have heard such wonderful things in the past couple of months about how great Maya looks. We kind of question the results.

As for the rest of the visit, we opted out of doing any bloodwork this time since it is used for their research purposes. Her nutrition results were not surprising - she isn't eating enough. Luckily for us the doctors understand and see this all the time with kids her age so they didn't scold us or anything like that. Bottom line, we are feeding her the right foods. She just needs more of it and also needs a multivitamin. We used the cough assist machine and suction machine in front of Abby, the wonderful nurse, and Maya didn't cry as much. Abby reassured me that I did a good job and to keep it up - and to get the cough assist to 2 times per day. The team was happy to hear about Maya getting her recommended 2 hours of stander time. Her physical therapy visit went pretty well, too. Maya is reaching for toys and using her head less to balance herself. She is able to roll from her stomach to her back. We discussed Maya's knee/hamstring being tight on her right side. They said it wasn't too late yet and we could still save her leg from getting a contracture (permanently) by stretching her constantly. Maya will need bracing while she sleeps so that her legs are straight. If you haven't seen Maya sleep, she sleeps in a frog-legged position. This position is not good for a long period of time and since she doesn't stand much, she doesn't get her leg straight enough. Over time, this can get stuck and she won't be able to stand straight at all. Definitely important to stretch her! So overall, this was a good visit. We don't trust the numbers on the EMG test, and are convinced the meds are working. We go back in March/April.

We did have some fun on this trip and took Maya to the zoo. We thought she would be interested in the animals at this age, but she still didn't care much for it. Here is a pic.