Three Little Engines: Still on their own growth curve

Tuesday, February 3, 2009

Still on their own growth curve

Jacen is in the 13th percentile, which is up from 9th... woohoo! And Aidan is still in the 5th. :)

Obviously we don't eat at this table. I put it that high so that Aidan could play with his trains free from Jacen's demo efforts. Of course that was before Jacen figured out to climb up there. I haven't bothered moving them down because Aidan's used to standing to play here.

They love these curved tracks for megablocks. Disappointing they aren't available anymore.

Jace is stuffing a fry in there. Psss... don't tell the pediatrician I bake them fries.

Ya!

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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.