Three Little Engines: Just playing around

Friday, March 28, 2008

Just playing around

An old toy, but he sees it, he'll play with it! For some reason he likes using his hand better than the hammer. :)

Lately, I've been finding Aidan at the frig and freezer often. He'd just stand there forever looking around, if I let him. Usually he does pick something out to eat or drink, though.

Telling me how he wants a train, while looking at the "All About Trains" dvd. I'm assuming since he has train sets already, he's talking about a real train. :)

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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.