Maya gets her 1st powerchair

November 29th -
Maya got her first powerchair. A Koala made by Permobil. It was an overwhelming day already since Kaden was only a week old and now something else new to learn. It was also a bittersweet moment for Charlie and I. Another chapter in the world of SMA. We are so very excited for Maya to be able to explore like other children, but so sad to have to use this type of equipment. The manual chair is an "at-home" thing, but the powerchair is for outside and that takes on a whole new issue. We also worry about her wanting to use it all the time and that would bring on issues like not using her arm muscles or creating a curve of her back (scoliosis).

All of Maya's excitement, however, helps us get over our sadness and fears. She loves the independence. We don't have a lift for the new car (we got a Ford Expedition EL a few weeks prior) so right now the only time she is getting in her new chair is when the weather is nice and we can go outside. I thought she would throw a fit not being able to use it in the house, so I covered it up with a blanket the day after we got it. She got up the next morning and said, "mommy, why did you cover up my car?" Ha! I tried ignoring it, but ultimately removed the sheet and she got over the fact that it was her outside chair. The moment I realized how much she loved it was when we were out on a walk (yes, we still call it going out for a walk even though it kills me to say that) and she wanted to see all the Christmas decorations. She told me that she loved her new chair and that she was happy to be able to go faster (since she can't go as fast in her manual chair). It was then that I realized how much she needed that chair. Now I get to see what a curious little toddler Maya is and that finally brought a smile to my face.