Three Little Engines

Wednesday, February 27, 2008

I was so disappointed I didn't get the camera soon enough. Aidan helped his Dad put "truck" shelves together. This is when he's cleaning up after it was all over. He had a blast helping Dad put the screws into the pre-drilled holes and using the screwdriver. He feels so important when he gets to help.

We got out the Learn n' Groove table (not sure if that's what it's called or not) for Jacen to play with. Suddenly Aidan acted like he had a new toy. :) Jace didn't mind.

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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.