Three Little Engines: Playing

Friday, September 16, 2011

Playing

I think playing trains and cars is more entertaining for me than them.

Damon, with his "Oh NO!" every few minutes, evil baby laughs (no, he's not evil, they just sound evil) and little happy feet stomps.

Aidan, just happy to have his brother there with him.

Jace was at the dda. We enjoyed some down time after finishing homeschool for the day.

Nervous about Aidan's appts next week. I should be used to it by now, but I'm not. In fact they get more and more nerve racking each time. I'll be relieved when these are over.

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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.