Will may only be able to wear one pair of shoes, but the young man has quite the accessory collection now. In the past week we've added a few new tricks... new boots, an ab binder and a cooling vest.
TMC Ortho made a house visit on Friday at 5 p.m. to get us squared away with new leg braces "boots" and the ab binder. Thankfully, that's over and we won't be using them anymore.
Another fun symptom of a Mito disorder is hypotonia - low tone. This low tone affects his muscles and decreases his sensory input as well as BMs. Mr. George, our amazing physical therapist, recommended we try and ab binder to do three things: increase sensory input hopefully creating a more focused Will, strengthen his core muscles for increased mobility and help increase consistency of BMs. So, we'll wear this during the day and see how it goes. If it doesn't work out, maybe we can sell it to a really skinny Home Depot worker.
A fellow Mito mommy friend (thanks Laurie!) introduced me to the cooling vest. Most mito kids have low tolerance to the heat or cold. Living in Texas, the heat is obviously a real problem. The benefit of the cooling vest is that it helps Will conserve energy, or apply that energy to other key functions. Instead of his body trying to keep him cool, or not overheat, the cooling vest acts as a little AC unit so his body can focus energy on other things like walking, chewing etc.
Historically, whenever he's outside his face and cheeks are very red and his whole body is warm. It takes him more time to cool off as well. We tried it out this week at school on the playground and it worked like a champ! His face wasn't flushed and he seemed to have a better time playing outside.
Here is the one we bought: http://www.silvereagleoutfitters.com/products/Junior-Hydrous-Vest.html it's pretty cool. Just soak it in a plastic baggie with water for 15 - 20 minutes, wring out the extra water and presto! They also have adult options if you work outside a lot!
We've moved on from playing with all our new accessories to blocks.
Happy Saturday! We're taking off shortly for a much needed haircut!