Three Little Engines: Thomas

Monday, December 1, 2008

Thomas

I wish I could say that Aidan earned this shirt as a reward for extraordinary behavior. But it's a small size, and I knew he'd grow out of it before earning it. A co-worker of Lincoln's gave it to us. Her 3yr old is in to Superman, not Thomas. (I find that a bit disturbing, but I'll leave it at that.) Pretty nifty shirt, I certainly wouldn't have spent that much on a shirt. I'm sure it was more than one of the large Thomas engines. Grandma & Grandpa Weber are sure to know that what Aidan is pointing at is the Thomas poster on the wall.

We made another trip to the ER this morning. Thanks to SpideeJace. He fell last night and was obviously hurt. No broken bones, they decided he sprained his hip. Even at the hospital, he was trying to climb everything he could get to.

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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.