Three Little Engines: Still waiting

Friday, October 21, 2011

Still waiting

He's just so perfect. I adore this smile.

Here's one of the pages he worked on at OT earlier this week.

I've come to the conclusion his improvement is from the freezing weather. :/

1 comment:

Anonymous said...: It's so good to see Aidan smile! He's had so many rough days...weeks...months. Prayers are still with him and the family.
Love to everyone,
Elle; October 24, 2011 at 8:28 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.