Three Little Engines: Thanksgiving

Thursday, November 22, 2007

Thanksgiving

For breakfast we had grilled ham and cheese sandwiches. Strange, I know, but that's what they wanted, so that's what I made.

Aidan happy as can be right in front of the TV with his sandwich and rocker.

Jacen is our 2x4.

Aidan, just playing.

I used to stroll Aidan around like this to sooth him, when he was Jacen's age. We got it out today to give Jace rides, and Aidan wanted to "drive" the stroller. So this was his first stroller drive. :)

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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.