Three Little Engines: Aidan's new fort

Saturday, December 29, 2007

Aidan's new fort

Aidan was playing with my feet while I fed Jacen a bottle. Suddenly I noticed he was gone. Looked around and found him here. He's crawled under the table to nap once before, but this still surprised me to find him under Jacen's jumper. Of course, he's holding his CTR car that he won't even set down to brush his teeth or climb into his car seat. Wondering what a CTR car is?

http://www.theremembercompany.com/Team_CTR_Street_Racer_p/rc405.htm

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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.