Three Little Engines: Hhhholy cow! Aidan is 3 years old!!!

Saturday, February 2, 2008

Hhhholy cow! Aidan is 3 years old!!!

I can't believe Aidan is already 3! We kept things really low key. When Daddy came home from work, he brought the packages from the PO. Gifts from Mommy & Daddy and Grandma & Grandpa Weber.

I chose not to tape Aidan when he first saw the rocket from Grandma & Grandpa Weber. He is much more calm here. He was obviously THRILLED, with his frenzy that equaled, or maybe even surpassed, the dump truck. Here, he is just taking it all in.

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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.