Three Little Engines

Friday, November 30, 2007

I love these two videos. One, a friend of mine made for a church program. Some of you have already seen it because I sent an email with the link. But the second one I only emailed to Mom & Dad.

http://www.youtube.com/watch?v=WTa73NZ3zik

http://youtube.com/watch?v=hG-vLVkfpXU&feature=related

I admit when I was a selfish child, I hated Thanksgiving and Christmas time. I had Mom & Dad all to myself all year long, until the holidays. Then my older siblings (if you can really call them that! lol) would show up and turn my world upside down. :) Now that I'm much older, and hopefully a little less self absorbed, I love Christmas.

Hope you enjoy the videos if you haven't seen them already.

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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.