Our girl is off for summer so Kenan is getting alot more "Tamsen Time". Here we were yesterday morning en route to the playground in Kenan's brand new, suped up, set of wheels: aka Kid Kart. *(We are working on an official nickname- all are welcome to make suggestions.) It is a custom fit, adaptive seat that allows his body to be in proper position: head, spine, hips, legs and feet in alignment. There are many issues that need to be considered falling outside of the direct symptoms of Krabbe: scoliosis, hip dysplasia, prolapsed vital organs to name a few. For instance, because Kenan can't support his own body and never made it to weight bearing, his hips are migrating out of their sockets and if not addressed, can dislocate. Special leg braces are being fabricated, but until then, we put his legs in "froggy position" when sleeping to help push them back. It can be overwhelming, all of the forces against him, both in the cause and prevention of morbidity. Ironically, an entire anti-aging industry has turned gravity into our enemy. We take for granted how absolutely crucial it is to the human body and our existence. The next time I start to complain about a wrinkle, I'll stop.
*Thank you 4.5 year old Riley of NY for giving us the nickname. From one boy to another, he was very thoughtful to consider a green animal that could both fly and hop.
