Three Little Engines: The only Halloween

Friday, October 23, 2009

The only Halloween

This is about the only Halloween we'll be doing. Aidan put this together while I was in labor. :)

Another photo of our new munchkin.

Mom has been working herself crazy, helping with Damon. Dad came to me and asked I take a photo... I brought the camera in and saw why he wanted one. :) Such a great Grandma!

2 comments:

Grandpa Weber said...: Jacen looks pretty well in his post surgery photo. I hope he's feeling a little better. Damon and Aidan look great too. I'll bet the roundhouse is still use.; October 25, 2009 at 4:34 PM
Buzybugs pixie.blogspot.com said...: Such a precious picture..; October 26, 2009 at 2:12 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.