Three Little Engines: Opposites

Thursday, May 14, 2009

Opposites

Jace is mister tantrum king lately. So he gets time outs either in my arms (in public) or in the playpen or his crib. Aidan climbed in there with him today. I guess that isn't going to work anymore. In this photo, you can totally see their opposite reactions to time out. Aidan thinks it's fun, (obviously why I don't use it with him) while Jace sticks his nose up in the air at me.

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.