Three Little Engines: Ears

Wednesday, November 2, 2011

Ears

So sorry for so many no-photo posts together. I'm depriving you of my super-cute lil men.

But I have news and no pics.

Went to the pediatrician again this morning for Jace's ears.

The plan is to try allergy meds first, to see if we can clear up the constant congestion. Then call back in a week if it's not improved enough, for the referral. He promised Jace's ears look wonderful and that he got a really good look at them. That makes me comfortable enough to wait and see. He also said that it's his personal feeling that it's neurological in origin, not physical. Makes sense.

Grateful for a good pediatrician.

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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.