I’m going to be very honest here. There’s so many challenges in front of me right now that I truly don’t even know where to begin.
The way I see it is that I should probably focus on the challenges that I can actually have some kind of impact on. Between the emotional and physical health issues my kids are dealing with, I’ve got to schedule close to a dozen appointments this week.
If that sounds like alot, that’s because it is alot. That’s between all three boys though.
As I’m thinking about this, I will likely have to drive Gavin to the Cleveland Clinic, solely for a blood draw. This is in regards to a specialized genetic screening for something called Jalili Syndrome. The kit that they sent for Gavin to spit into, didn’t go over so well. Gavin produces very little saliva to begin with and is a walking case of chronic dry mouth.
What he managed to spit into the container, A) wasn’t nearly enough and B) didn’t even resemble saliva. I’ll spare you the details but it was disgusting to say the very least.
Poor Gavin was so frustrated with himself but it wasn’t his fault. He wasn’t aloud to have anything liquid, food or medication in his mouth for 30 minutes prior to providing the sample. This was an attempt to avoid us from having to make the trip.
Anyway, that’s another trip that I hadn’t included in the count above because it not something I have to schedule. I just have to drive close to 3 hours pay for parking, just to have his blood drawn…. Of course, I’ll do it.. It’s Gavin. That doesn’t mean I’ll enjoy the drive or cost but I do what I need to do for my kids.
Just to head off the inevitable question. Yes, it has to be done this way because he’s part of a research study and there are certain protocols in place. It’s a small price to pay, in exchange for testing that would otherwise cost tens of thousands of dollars or more and likely not covered by insurance.
The rest of the appointments are things like ophthalmology, speech, physical therapy, occupational therapy, gastroenterology, neurology and the dentist. Some will be for all three boys and some won’t. Speech, OT and PT are evaluations for Elliott and Emmett at Akron Children’s Hospital. I also know there’s some I’m forgetting but I have them written down.