Alison's clinic appointment went really well. Her doctor was very happy with her progress. We still have a few things to keep and eye on; she in-toes a lot when not wearing shoes, so she has to wear her shoes more often at home and, when manipulating her legs, the outer rotation in her hips is a little bit too loose, but these are things her doctor is comfortable with us keeping an eye on instead of treating right now. The hip problem, in particular, would interfere with her mobility because it would require braces, and he doesn't want to do that to her at this point, especially since it hasn't been affecting the way she stands or walks.
Her pediatrician has jumped the gun once again with regard to her back and the fact that she doesn't stand without holding onto/leaning against something. Dr. Barr stood her up and felt along her spine, watched her walk and said her back is fine. It seems to him the problem is more with her feet. He also feels the most likely cause for her not standing is the mild Chiari malformation that she has. One of the "side effects" of having the open lesion that babies with spina bifida have is that the cerebellum, or hindbrain, slides down into the top of the spinal column and becomes deformed and compressed. One of the (originally unintentional) benefits to fetal surgery is that once the lesion is closed the brains of these babies tend to move back up into a more normal position. That was the case with Alison, so she only has a very mild case of Chiari. Anyway, she will eventually stand on her own, but it will just take a little longer than normal. Dr. Barr has had patients that have been as old as 4 before they were able to stand without holding on. I hope Alison doesn't take that long. So that's two less things we have to worry about.
I know that treating a patient with Spina Bifida is not something that Alison's pediatrician does every day (she could possibly be one of the only SB patients he's ever had, and she is definitely the only SB fetal surgery patient he's ever had), and he's just trying to do the best he can for her, but it makes it hard for us when he overreacts to things like this. I'm glad we have had Dr. Barr to fall back on. Unfortunately he is retiring at the end of June. But, he has great confidence in the doctor that is taking over the clinic, and the Dean of Kinesiology had good things to say about him too, so that's reassuring.
From the doctor's appointment we headed over to the Motor Development Lab to go walking! Alison always has a lot of fun when she goes there. This time was a kind of follow-up to see how she's doing after walking for 3 months so all she had to do was walk down the special mat over and over and she didn't have to walk on the treadmill at all. I was worried that she wasn't going to walk the whole way down the mat, because she didn't want to cooperate to well when Dr. Barr was watching her walk (she'd walk towards us for a few steps and then spin around and take off the other way or she would head right into the nearest open door). After she got all her markers and electrodes on, they sent her down on a trial run and she took about 5 steps on the mat an veered off the side and stayed there until she was about 4 feet from the end of it which was where she proceeded crossed back over and walk on the other side of it. Using some cardboard blocks, Ugo created some "road blocks" in a couple places along the side of the mat and she did great the rest of the time.
All during the time Alison has been participating in this study they have been making a memory book for her. It has height and weight charts, pictures of Alison and little synopses of how Alison did each time she was there. Today they finished the book and added a little "diploma," signed on the back by everyone involved with the study, in honor of her completing the study.
Alison had to get up early this morning, and we hoped she might snooze a little in the car on the way to Ann Arbor. Well, that didn't happen. We were sure, however, that she would sleep on the way home, because that would be during her regular nap time. Well, that didn't really happen either. She did sleep, but only for about 15 minutes. Kevin settled her down for a nap once we got home, and assured me that she was "out" before he left to get his hair cut. That was at 2:45. At 3:00 she was awake. By 3:30 she was wailing, so I went to get her. We rocked for a little bit and then went to lay down in our bed. She laid there for about 15 minutes and then decided it was time to play. By dinner time she was practically falling asleep in her highchair, but she wouldn't give up. I left her with Kevin and went and got my hair cut and she was in rare form by the time I got home. We tried laying down again, but she would not give up. Shortly thereafter I had enough of the whining, so we started getting her ready for bed. She almost fell asleep in the bathtub! It didn't take long after that for her to finally give up. Here's hoping we all get a good night's sleep.
