Follow Kenan's Story by Email

Tuesday, June 26, 2012

We Love Summer Series
















We Love Summer #3: Diving into a Mangolicious Popsicle, just in time for tooth #5 and #6 to make their appearance along with molar #1 presenting. When he raises his arm up as pictured, it means, "don't stop!". The sound of motorcycles revving down the street in the background, another favorite, not pictured. 

We Love Summer Series





















We Love Summer #2: Watermelon! 

We've expanded Kenan's tastings to fresh fruit and vegetables so that his lips, tongue, teeth and face get to experience different temperatures and textures. Plus, it just tastes better! (This is highly controlled to prevent overwhelming and choking him.)

Wednesday, June 13, 2012

Meet "The Grasshopper"

*
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.

Sunday, June 3, 2012


With curtain drawn
The shower sounds its rain
My tears fall
Then are pulled down the drain
My son will not die
No, not today.