Three Little Engines: Testing

Monday, August 22, 2011

Testing

So the testing has finally begun on Jace.

Aidan has been through these tests twice already. It's the neuropsychologist testing for behavioral and learning disabilities.

It got bumped out 3 months, after having waited 3 months already.

Hmmm. Think they are as overloaded as neurologists, maybe?

This will be good to get some more answers. I'm not at all thinking we will come out of there with full diagnosis, he's only 4 after all. But it should give us some proof and explanations to help his neurologist and behavioralist. More pieces to the puzzle.

Just 9 more appts to go.

1 comment:

Anonymous said...: Only nine appointments? (= You're good at persevering. I continue to pray that your family gets the answers/help you need.
Love you all,
Elle; August 23, 2011 at 5:41 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.