Realized I’d been updating social media this last year but not the blog. So just ignore these if you’ve been following me!
Brody saw Dr. Franklin yesterday at @shclexington. These appointments are hard. Brody has EXTREME anxiety with the eye doctor. I’m talking crying, screaming, shaking, and full on anxiety attacks. The main culprit of it is the eye drops to dilate his eyes. Since it was mentioned a month ago to him, he’s been thinking about it. With his anxiety, you can’t change his mind that nothing bad will happen.
We started seeing Dr. Franklin when Brody was a year old. Even from that age, we’ve had to hold him down in the chair, stabilize his head, and hope we got enough of the drops in to not have to do it all again. This appointment was no different. I can’t say enough good words or praise for how awesome Nurse Steven was though! He was so amazing although I didn’t realize that there was a bug picture in the book they use to check depth perception and Brody lost his mind again. 😫
The actual appointment went well. Other than some slight farsightedness, his vision continues to look great. He doesn’t need glasses for it at this moment. I was concerned about the night blindness and his peripheral vision with all his tripping. Those are still checking out to not be issues. We go for an orthotics appointment in June. He used to wear braces in his shoes but has “graduated” from them for a few years. I’m hoping they will give his feet some better support to help control that balance a little more.
The ironic thing about Usher Syndrome is that everyone’s field of vision seems to be affected differently. You could go completely blind, have 20/20 vision but only be able to see a pinhole, see black or white splotches randomly in the vision field, etc. It’s also a gut wrenching wait. Having the genetic testing done early is a blessing and a curse.
We’ve known since Brody was 5 months old that he had Usher Syndrome. We love that we’ve had the opportunity to learn all about it and to build a support system over the years. We hate the waiting game for the vision loss.
So here’s to another year of waiting and speculating, but also another year for more research and moving closer to a treatment.