Three Little Engines: Perfect outside day

Tuesday, March 12, 2013

Perfect outside day

But first, crafts. Aidan and Damon painted trains, Jace painted a soccer ball. :)

Here is the real owner of the crate. ;) Well, Sunny is in there... He was furious with me for putting him on a slick flooring. Cardboard fixed the problem. Hopefully he uses the litter box!!

The perfect weather to safely let the boys be outside for a bit. Overcast (no sun) and cool temps.

So bubbles!!!

Aidan really enjoyed the whistle style bubble maker. He really struggles with the regular style, fine motor issues and trembling. So if your child has difficulty and gets frustrated with regular bubble wands- find this style. :)

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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.