Three Little Engines: Snow... even before Halloween

Saturday, October 6, 2007

Snow... even before Halloween

Sorry for the constant bib in the photos... with the acid reflux, it's easier to change a bib than an outfit every time. This shows Jacen's a Lear for sure, falling asleep anywhere, any position.

Unfortunately, I guess this is only more proof for Mom & Dad that they don't want to be in ID. Only yesterday it was nice and warm. I might as well still be in CO for the "bi-polar" weather we've got. :)

2 comments:

Carolee said...: Wow -- that snow is something! Those boys are cute. It will be fun to see pictures and video of them more often.; October 6, 2007 at 1:35 PM
BeantownFam said...: I'm so excited you entered the blogging world! It's so nice to see some pictures of your adorable kids. That's crazy that you have snow already. Take care!; October 6, 2007 at 1:55 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.