Three Little Engines: If it's messy, Jace is game

Friday, June 19, 2009

If it's messy, Jace is game

Jacen's therapist, Danell, came yesterday. She brought a white tray and washable markers. Both boys liked it, but Jace was thrilled with the whole thing and got quite mad when she put it away. It dawned on me, "why on earth haven't I let them use a white board with the washable markers???" I'd always given them paper and it just wasn't very fun for them. A duh moment. So I got them out today. As you can see, Jace will need a full wiping. And thank goodness those markers are non-toxic. Aidan likes the less messy Magna Doodle version better. :) They couldn't be more opposite, unless one of them had been a girl!

(OXOXOXOX's to Grandpa Weber!!! Sure hope it stops hurting and heals soon, Dad. We love you!)

No comments:

Post a Comment

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.