Fun Day

Alison has been part of a study at the University of Michigan on how walking develops in children with Spina Bifida since she was 6 months old. They typically start at 1 month old, and are seen every 3 months or so until 18 months, but when Alison started they were taking them at any age because they wanted to get more babies into the program. Until the babies can walk independantly, they are held up on a baby sized, waterproof, treadmill, which runs at 4 different speeds, to try and get them to make stepping motions. The first two times she went, she “walked” naked (except for the little reflective balls taped to her hips, knees, ankles and tops of her feet so the cameras can pick up her movements), so nothing would interfere with the stepping motions. Then they started sticking electrodes, with wires, on her legs to measure what her muscles were doing, so they had her in black tights (with holes cut out for the reflective balls) to keep her from getting her hands on the wires.

Earlier this week, one of the people working on the study e-mailed me to set up an appointment, in February, for Alison to come and walk again, unless she started walking independantly before then. It was quite a coincidence, because I was going to e-mail her this week to tell her that Alison had started walking a little bit. I directed her to Alison’s webpage, where we have a few video clips of her walking, to see if that’s what they needed to do. After receiving a reply with an emphatic yes, we made arrangements for Alison to come in today at 1 pm.

We made the 1 1/2 hour drive to Ann Arbor, had some lunch and arrived a little after 1, ready to walk. After they got all her reflective balls and electrodes taped on, she was ready to go. They started with the treadmil. It looked like she thought the two slower speeds were pretty boring, because she didn’t really step all that much, but she really got into it at the two faster speeds. After going through all four speeds twice (once for each leg, because they don’t have enough money right now to buy the equipment to use all 8 electrodes at the same time) we took a break while the guys got the room set up for the new part of the study.

Now that she can walk independantly, she also got to go for a little stroll down a mat wired with sensors to track how she’s walking so that they can compare it to the stepping she did on the treadmill. She did a couple of steps the first few times. They moved her farther and farther back until she was about 4 feet away from me. She had so much fun! Everyone clapped and cheered for her when she made it down the mat and she just ate it up. She walked down the mat about 7 times. Once they felt they had enough data collected, it was time to clean her up and take some measurements. That was easier said than done. Now that her wires were unhooked and she was “free” she wanted to check out everything in the room. The first thing she did was crawl over to the big treadmill and climb right up on it. Eventually, they got all the sticky and the marks off, weighed her, measured how tall she is, measured how long her legs are and how big around her calves and thighs are (her leg length is finally longer than her thigh measurement....her thighs used to be bigger around than her legs were long!) and she was able to get dressed again.

While it was a lot of fun today, it was also kind of sad, in a way. We’ll only be going back to the lab one more time. We’ll be going back in March, so they can see how/what she’s doing after three months of walking. Then we’ll be done. The people that we have worked with have been so great. You can see that they love working with the babies and have been just as thrilled with Alison’s progress as we have been. At least Alison will have the memory book they’ve been putting together for her at each visit. And maybe, one day in the future, she’ll be able to say “I was part of a very important study about how walking develops in babies with Spina Bifida.”

Family Relationships

Alison has a picture book. It is made up of pictures of her with her grandma, grandpa, uncle, great-grandma and great-grandpa. Alison’s great-grandpa thinks she is the greatest thing since sliced bread. There are several possible reasons for this. One is that she’s a girl. My mom is his only daughter, I am his only granddaughter, and Alison is his only great-granddaughter (so far). Another reason could be the fact that she has defied all odds and is our little miracle child. The last reason is probably closest to the truth. He gets to see Alison a lot. Maybe not as much as he saw me when I was growing up, but as often as he can given the fact that we live 300 miles away. In the last year, we’ve visited about 12 times. Why is that such a big deal? You see, Alison is one of three great grandchildren. My cousin has two sons, one who just turned 3 and the other who will be 1 in January. My grandparents have seen the oldest 3 times, maybe 4. They have seen the youngest once. They live approximately 5 minutes away from my grandparents.

My grandparents are 86 this year. They are not in the best of health, but they’re doing all right for now. My grandma makes it rather unpleasant to go and visit them, and she doesn’t exactly make it pleasant when they come to my parents’ house. Despite this, I make sure that they see Alison every time we are in town. Because I live so far away there’s not much else I can do to help out, so that’s my “job.” My mom has said she doesn’t know how I can stand it. To be honest, if I didn’t have to focus so much of my attention on keeping Alison out of everything, I probably wouldn’t stand it as well as I do. While I know that Alison probably won’t remember visiting with her great-grandparents until she gets older (and I’m hopeful she’ll have that oppurtunity), I still think it’s important to visit as regularly as we can. I know that when the time comes, we will benefit because of it. She already has Great-Gramp’s sterling silver baby spoon, which I thought would (should?) have been given to my cousin’s son, since he will be the one carrying on the family name. But that’s not why we go. I know they love to see her.

Alison has been a little afraid of seeing Great-Gramp these last few times. I wonder if it’s just a stage or if it’s because she can “sense” he hasn’t been well? In the event that it’s just a stage, Alison has a picture book. It is made up of pictures of her with her grandma, grandpa, uncle, great-grandma and great-grandpa.