Three Little Engines: Family Photos

Friday, November 21, 2014

Family Photos

A very sweet neighbor and ward member Toni offered to take family photos for us, shortly after Aidan and I returned home from the hospital.

I made the mistake of downloading several new Thomas and Herbie videos for Aidan that morning.

He was so upset he couldn't watch them, that it took Lincoln tickling him to get any kind of smile from him. Consequently, he refused to smile for me. :)

Mommy goof!!!

She still managed to get a lot of really great photos.

These are just some of my favorites.

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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.