Three Little Engines: Worn out

Thursday, November 20, 2008

Worn out

After a morning of hard work creating and imagining.

He just abruptly stops and lays down for a nap. Aidan has always been like this. I never had a set nap time for him because of it. I remember the dishwasher repair dude that came to our loft while I was pregnant with Jace was disgusted with me because my 2yr old son was asleep on the floor. He obviously doesn't have any boys like Aidan. He is so into his projects he won't stop for anything.

1 comment:

Grandpa Weber said...: I'm glad you invited me to view this blog. It helps me stay con-
nected

Many thanks,

Brent; November 20, 2008 at 5:21 PM

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.