Three Little Engines: Funny Little Man

Wednesday, December 22, 2010

Funny Little Man

Aidan used to make me laugh all the time. Yesterday, he was able to communicate humor for a second again. It was nice and I want to remember it.

I was dropping him off at DT. Had already dropped Jace off at OT, so he wasn't with us. The DT was moving a cart from the office out into the main room. There was a ruler sitting on the table nearby. Aidan ran over, grabbed it, stood it up vertically and walked and wobbled with it like a cane and yelled, "Look! I'm an old man!" :)

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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.