Three Little Engines: Damon

Friday, January 27, 2012

Damon

Damon usually plays with toys sort of aimlessly, not really with how it was intended. And much of the time he's sucking on it. I've noticed his purposeful play with toys is increasing, and I'm glad. Hoping he's truly leaving this stage. He actually requested this toy this morning. With a word! It was just "that" (to be more accurate it was "at,") while pointing, but hey I'll take it!!!

Here, Damon is saying, "eh-ee, et, go!"

1 comment:

Buzybugs pixie.blogspot.com said...: Ok, Damon is sprouting right up.. He is growing way way fast. I love his little toy- it looks like so much fun.; February 1, 2012 at 10:03 PM

Okay, here's the thing:

For those who don't know already...

My oldest, Aidan, was diagnosed with a severe form of Epilepsy called Lennox-Gastaut Syndrome that is not treatable by the time he was 5yrs old. Then Jacen, with mild Cerebral Palsy w/seizure disorder, and Damon with Epilepsy. Later, after extensive testing, specialists said we are dealing with an untreatable neuro-degenerative genetic disorder that all three boys have. Genome sequencing results are still pending for mitochondrial forms that all testing and history points directly to. Heartbreakingly, Aidan passed away September 14, 2014.

All 3 have had varying degrees of developmental delays and regressions, but the same symptoms and in the same cycle. They are just at different stages of the disorder. The genome testing will hopefully provide an answer to the specific genetic markers causing all this so we can maybe, just maybe, make them a little more comfortable as they pass away. Jacen and Damon have now been diagnosed with LGS as well. And Jace is on Hospice. This is my journal.