Three Little Engines: Conversation

Wednesday, November 23, 2011

Conversation

During dinner last night, Aidan announced, "I told [his speech therapist] about all the white metal poop!"

Wish I'd been able to see her face.

And am grateful he saved it for her, instead of the other parents in the waiting room.

(For the upper GI, they had him drink that liquid metal stuff so all of his poop has looked like super tight wadded up aluminum foil.)

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.