Three Little Engines: Spoke too soon

Friday, April 24, 2009

Spoke too soon

They aren't anywhere near better, but they are okay. Such cuties. THANK GOODNESS for that carpet shampooer!!! Love my Hoover. No parent with carpeted floors should be without one.

2 comments:

Erin said...: Ugh Rachel! I'm sorry you guys are going through so much right now. I hope your little guys start doing better soon.

And ditto on the carpet cleaner comment.; April 24, 2009 at 1:52 PM
Buzybugs pixie.blogspot.com said...: This is such a cute picture.. Look at the cuddle bugs..; May 1, 2009 at 12:25 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.