I meant to share this last week but just never got around to it.
It’s been many months since I received any news from the Cleveland Clinic in regards to the genetic testing Gavin had last year.
Last year, Gavin had a very specific genetic test performed to diagnose something called 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.… Read More
Gavin’s IVIG infusion was different this time around. As a result of being shorted on supplies, he missed one infusion last Friday.
Today was the day we played catch up.
He received 1.5 times the normal dose, which amounts to 45cc’s infused subcutaneously into his belly.… Read More
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.… Read More