So I realized I never made and update this summer that I should have so I will start there.
Late June Chris and I were contacted from Childrens Hospital Genetics team. They had FINALLY after 14M heard back from the Jouberts Syndrome research team at Seattle Childrens Hospital (one of the two genetic syndromes Korbin was suspected to have had)
They wanted to invite us to participate.
What this means...They collected our blood samples and are running tests to see if we both have any genetic markers.. which means if we did that we would be "carriers" making it possible to affect or pass on to other children we may have. What this also means if we are that gives us the knowledge that at some point Kayla needs to be tested so she knows for her future. She has a 50% chance of being a carrier and in genetics that is HUGE. At this time they wouldnt allow us to include her in the blood draw for testing b/c she is 6. But they made a note that we would like to at some point have her tested IF we come back positive on anything.
They told us this could take weeks(its been 5), months or even years to get our results.
So in the meantime..well nothing we carry on as usual
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