Rollin’ rollin’ rollin’!
My first update of the summer – good grief! But I promise, no news is good news! We’ve been making the most of the summer and staying busy. I do have a lot to share though, so I’m going to do it in a couple of separate updates so it’s not so long that you won’t want to read it all!
The most exciting news is that Brady is the very proud new owner of an electric scooter!! He absolutely loves it, and it fits him perfectly. I am so thankful for Amanda and Mike, who both recognized that Brady did not need a power wheelchair! During this journey of finding a mobility solution, we were told repeatedly that scooters aren’t made for children (they are sized for adults). I had two stipulations: 1) whatever we ended up with needed to fit in my beloved, already paid for mini-van (we are not ready to purchase a new vehicle, let alone a modified one = big bucks) and 2) I needed to be able to load and unload it by myself. Brady’s new scooter is perfect for all of these reasons.
When and how much will Brady use his scooter? Not very often and not very much. I want everyone to understand that the scooter will not and definitely should not replace Brady’s walking. Dr. Swoboda advised us a long time ago to follow the “use it or lose it” rule. Generally speaking (with SMA), the earlier a child uses a power chair or scooter the sooner they will lose the ability to walk. Walking is important exercise, and we want Brady to walk for as long as possible. It is in his best interest to stay active. However, there are times when the use of the scooter is appropriate, usually when long distance walking is required, such as a trip to the zoo or mall. Up until now, we have relied on an umbrella stroller or wagon, but he’s outgrowing these. And the scooter gives Brady independence, which is very important. The stroller and wagon make him dependant on someone else. We want Brady to be independent and take an active role in his own care, not rely on someone else.
So, the scooter is a pretty big deal here, and as far as we know, this is the first one in Oklahoma that has been adapted to fit a child, which makes is very intriguing for a lot of people. I am thankful for Mike, who designed it, because he was able to “think outside the box”!
Brady has another exciting announcement…..he has his first loose tooth!!
My next update is going to be all about our amazing trip to the national Families of Spinal Muscular Atrophy (FSMA) conference in Cincinnati, OH! We just returned last week, and I have lots to share with you! Thank you so much for reading my updates and following the boys’ progress. I started this website 3 years ago, and it has been an amazing communication tool for us. We appreciate all of you taking an interest in Spinal Muscular Atrophy and helping spread awareness of this disease.
