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.
Gavin has more of an adult frame and he's very weak. For right now, they're working in strength training and Gavin seems to really like it.
don't know what else to do...but I owe it to Gavin to get him to his therapy appointment and I really don't think Emmett's sick. I don't doubt that he's not feeling well but it's nothing contagious..... Read More
Gavin has a really, really big day today. This has been a long time coming and frankly, it's taken much longer than it should have and that's my fault. Here's what's going on......
"..............I'm not super excited about this added level of responsibility but it's a parents job to do whatever is necessary for their kids......" Read More
He's not doing anything on purpose and each one of these things are accidents. I've no doubt that he's frustrated with himself as well.
This was a more painful infusion because it's more fluid being pumped into his skin but Gavin did really well.
I will say that when things like this pop up, it's really scary because these infusions are potentially a matter of life or death...