Three Little Engines: Jacen's bee video

Sunday, July 13, 2008

Jacen's bee video

Baby Einstein's has a dvd for baby first sounds. Jace loves the "buzzy bee" (as Aidan says) on it. This is him squealing at it, with his full attention on the bee. All except to drink... he's our little camel. He loves these little juice boxes from walmart, full of juice, water, or milk. As for the video, he'll often stand right in front of the TV, slapping the bee on the screen, hollering at it. We have such cute boys!!!

No comments:

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.