Three Little Engines: The falls

Monday, September 5, 2011

The falls

Took advantage of the cold crisp Fall morning with daddy's help for a stroller ride at the falls.

See the smirk on Aidan's face?

Now you know what he was thinking. :)

1 comment:

Anonymous said...: Thanks so much for the photos! As always, I love the pics of the boys. It was a nice surprise to see you and Lincoln in one. (= Keep it up!

Love to everyone,
Elle

P.S. I'm not ready for bundled-up weather myself, but I'm sure that Aidan is grateful for it.; September 5, 2011 at 1:51 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.