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Monday, June 6, 2022

Visit with Dr. Mike

It’s always so neat for me to watch Brody at audiology appointments. A big part of my job teaching the 3 year olds is working on audiology booth work. We work on the task of pointing to named pictures, turning to sound, or games such as putting in a peg when they hear the sound. I honestly didn’t know much after that with kids and audiology until I got to experience all the next steps with Brody. 

Brody now gets to look at a chart of 1-10. 1 being really quiet and 10 being really loud. He can tell Dr. Mike what each tone sounds like to him so he can program the cochlear implant maps correctly. He’s super consistent with it too. Dr. Mike would try to trick him today by going back to certain frequencies and Brody would stay consistent with his choices. An 8 was the most comfortable and where we wanted him. 

We are so thankful for all of our @cincychildrens ENT and Audiology members of Brody’s team! 

After every visit, Brody only wants to go to the cafeteria to get some @larosaspizzeria. Not from the actual restaurants because isn’t as cool of a setting 😂 

All about Usher Syndrome

Brody, age 9, talks about the hearing loss side of Usher Syndrome. 

Kentucky All-Star

Brody and I had the best day getting to meet with Governor Andy Beshear for the signing of the Usher Syndrome Awareness Day proclamation in the state of Kentucky. 

Governor Beshear spent time talking with Brody about Usher Syndrome and the different facts that are unique to Brody. Our goal for Brody has always been that he will advocate for himself. Today he did just that! I was so proud of how much he knew about Ushers already! 

Brody got a private tour to see the room where the pressers happen each day. 

He also named Brody a Team Kentucky All Star and announced it on his video today! 

Thank you to everyone that made today happen! 

Gifted and Talented

We are so proud of Brody! He has qualified for 4 areas in gifted and talented (math, reading, art-intellectual ability and creativity) for this upcoming school year. 

Academics has always been his strong point. He taught himself to read at 3 years old by putting the sounds together that he was learning at preschool and in speech therapy. He stays up to read late into the night to the point I’ve had to take away his books to get him to go to sleep. 

When we first learned of his hearing loss, we questioned all of his abilities. Would he be able to learn? Would he be able to make friends? Would he graduate? Would he get a job? Of course we knew he would be able to do all of those things and more, but as a new parent with so many questions, we were scared of the future. Not anymore. We’re so proud of his accomplishments at just 9 years old. 

Here’s to a future of working for NASA (and having a DJ gig on the side)! Or maybe Google since he saw what their facilities look like. 😂

Vision Appointment

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.