There was a hiccup with Gavin’s latest genetic screening
There was a problem with the genetic sample that Gavin provided the Cleveland Clinic
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March 29, 2016
Important Update to Gavin’s genetic testing for Jalili Syndrome
I received a call last year out of the blue from a genetic counselor at the Cleveland Clinic because Gavin's specialist at The Cole Eye Institute had reason to believe that Gavin may in fact have Jalili Syndrome.
January 15, 2016
Gavin’s #IVIG infusion was different this time
This was a more painful infusion because it's more fluid being pumped into his skin but Gavin did really well.
December 19, 2015
God grant me patience because I’m gonna need it today
We finally made it. We arrived at 10:30 am for a 10:00 am appointment. It should take about an hour to get to the Cole Eye Institute and I gave myself an hour and a half to avoid being late but the drive took 2 hours. Between potty breaks, getting pulled over, road construction, getting off in the wrong exit and more construction, it took an extra hour. I'm not in a really good place at the moment and my stress level is approaching stroke levels. Happy thoughts. I'm going to think happy thoughts and pretend we aren't late and everything went perfectly. That's all I have left to do at the moment.
August 25, 2015