Three Little Engines

Thursday, February 7, 2008

I'd put Jacen on the chair several minutes earlier. Aidan asked if it was okay for him to get up there too... so I had to get the camera out!

Aidan looks a little nervous here, as he should be. :)

Tickling.

Shortly after this, Aidan got off the chair. Jace grabs and scratches really hard! Right now, he'd win "king of the hill," hands down.

He tries so hard to crawl... gets up on all fours, he's even pushed himself forward. Jace so wants to move around on his own. He gets so mad at me when I don't take him where he had in mind. Which is often, apparently!

Aidan is so sweet to his little brother. I was nervous when he reacted so negatively to no longer being an only child. But he's a perfect big brother.

1 comment:

BeantownFam said...: Your boys are so darling! Spencer knows how Jacen feels...he wants to crawl all over on his own but can't quite go where he wants yet. Aidan does look like he's a great big brother! :o); February 10, 2008 at 6:28 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.