Three Little Engines: Baby boy names

Monday, July 7, 2008

Baby boy names

This is always so hard for us. Lincoln and I don't agree on names at all. He keeps talking about Charles something. No offense to anyone who likes that name, but please, not for my baby! I absolutely love the name Noah. Lincoln hates it. I thought since we have a pattern going here with Aidan and Jacen, that Nathan goes quite well. Lincoln said, "I'm not too thrilled with that name either." Meanwhile the rest of his "suggestions" are even worse than Charles. At this point, I'm holding out for Nathan. I'll let you know if it changes. :) And I'm open to suggestions, as long as they aren't like... Burl.

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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.