Three Little Engines: Smart Daddy

Tuesday, May 4, 2010

Smart Daddy

Holy cow can you believe Jace's eyes?

I think this is my new favorite photo of Jace.

Aidan is such a great big brother. He will ask to hold Damon and gives him special attention regularly.

Well, no news yet from the Metabolic Geneticist. More testing has to be done.

But I'm pretty sure Daddy figured out what was causing all of Aidan's drop attacks. He'd been put on B6 and the dose had even been increased. Lincoln suggested we take Aidan off the B6 cold turkey (we'd never do that with a medication!) and amazingly, he's really improved. In fact, he hasn't fallen since. He's talking more too. As a couple days of improvement turned into several now... I'm really thinking it's not just a coincidence. Yea!

1 comment:

Buzybugs pixie.blogspot.com said...: Such cute boys they truly are a blessing in your home. Glad he has done well with the B6; May 5, 2010 at 5:45 PM

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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.