We have a super long day ahead of us. It begins with early morning bloodwork and getting the kids ready to spend the day at my parents house. While the boys are at my parents house, the rest of us will spending the day at the Cleveland Clinic.
Gavin has a long day of testing at the afore mentioned Cleveland Clinic.
The purpose of this testing is to rule out and or discover the cause of Gavin’s vision problems. For awhile now, Gavin’s been experiencing periods of time where his vision goes completely black, like someone turned out the lights. We have been unable to determine the cause of these episodes and our goal for today is to at least rule a few things out.
There are two areas of particular interest because they are the most likely of several extremely rare possibilities. The first is neurological in nature and the other has to do with his eyes themselves. I’ll explain a bit about what we’re looking at and why.
The first part of the day will be spent with Gavin in the EEG lab being monitored for seizure activity. Gavin was diagnosed with epilepsy about five years ago but has absence seizures and they’re hard to detect, especially with a kid who’s prone to staring off into nothing. It’s also really hard to identify these when the person impacted is severely cognitively impaired.
The second half of the day will be spent having extensive exams of his eyes.
During his last detailed neurological exam a few months back, his specialist suggested that he believes that the len in each of Gavin’s eye may have become detached. This is something that can happen to people with Ehlers-Danlos syndrome. This could account for the episodes of vision loss or black outs where he can’t see anything for a period of time.
Gavin with be returning to the world famous Cole Eye Institute at the Cleveland Clinic for this exam. His doctor is amazing and while we don’t know what to expect, there’s comfort in knowing he’s in good hands. This will likely be the longest part of the day and while these appointments are back to back, they aren’t in the same location. Time will be of the essence.
By the time we’re done and on our way home, we will all be physically and emotionally exhausted.
I’m hoping we leave with good news because that would be a great way to start off the New Year. If it’s not good news, we’ll rally and deal with whatever comes our way.