Three Little Engines: Latest Damon

Friday, February 12, 2010

Latest Damon

I love this little smirk.

Definitely the Lear cheeks, and our only boy with them as a baby. Jace didn't get chubby cheeks until he was a toddler, and they are shaped same as from my family. Same as Aidan's.
The Lear baby cheeks are so chubby they droop. :)
It's so hard not to kiss and tickle and squeeze and even grab them. Like, all the time. No, I don't grab them... it's just tempting to (in the loving way!) because they are so.... in your face.

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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.