Three Little Engines: My Jace

Sunday, December 2, 2007

My Jace

He's just so blasted cute, I have to share!

His mouth has been hurting him for quite a while now. Poor guy. Aidan teethed really early too. I had no idea it was possible so young, but Aidan's Pediatrician assured me I wasn't going nuts.

Covering himself. :)

2 comments:

Erin said...: What a little sweetheart!! When they're that cute, you wanna just kiss and hug 'em through the computer screen!; December 3, 2007 at 7:46 AM
Carolee said...: He is a real cutie! I'm glad you started a blog so we can watch your boys grow from a distance!; December 4, 2007 at 3:00 AM

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.