Three Little Engines: Lazy Saturday

Saturday, September 5, 2009

Lazy Saturday

Jace loves ice cream bars. It's always quite a chore to clean it all up. He's worth it though.

Exploring, while waiting for Daddy.

My Little Man.

Who doesn't give genuine smiles for the camera anymore. No genuine laughs anymore either. 4yr olds. I love him anyway, and know at some point they will return.

We spent all day running around and I'm totally beat. Did get an NST in there too, and Damon is still doing well.

Of course, these photos don't do them justice at all, mostly because they are from my phone. Another couple stopped us today (this actually happens often) to say, "you have the cutest boys we've ever seen." An overstatement, I'm sure, but yes, they are pretty darn cute.

1 comment:

Buzybugs pixie.blogspot.com said...: They are pretty darn cute.. I love his smile and aren't 4 year olds the funniest kids.. Your such a cute Mom.; September 7, 2009 at 11:27 AM

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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.