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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. 

Thursday, October 8, 2020

2020 Are You For Real?!?

 It's been over a year since we've updated this blog. Whoops!

In December of 2019, we started seeing both our ophthalmologist, Dr. John Franklin, and an optometrist, Dr. Ramiro Maldonado. They are both at the University of Kentucky.  We were seeing Brody tripping a lot and weren't sure if it was his vision starting to go or just his normal clumsy self due to the Ushers. After a few different tests, it was determined that his vision was still in the normal limits in every aspect. We were very thankful to hear those words! It is always a guessing game. People with Ushers lose vision in varying degrees and at different times throughout their lives. While we have an average age that it may happen, we still have no idea to what degree he will lose vision.

Different testing

with Dr. Franklin

Here are some other updates from 2019 that I missed...oops!

We got to see one of our Usher families. Their little boy has the same type of Ushers as Brody and they are a year apart!

He had his picture taken at the Usher Syndrome conference for their Shine the Light on Usher Syndrome project.

Brody presented on Cochlear Implants for his school exhibition night.

Perks of school...lice! This was not a fun weekend!

We sold our first house and moved to Grandma and Papa's neighborhood!

Brody's 7th birthday party at Main Event with his best friend.

Superhear-o 5k

Brody moved up to his white/yellow belt in karate. 

Piano concert!

First Notre Dame game! We saw ND play at Louisville.

First day of 2nd grade!

Took Ella to see some unicorns. She wasn't a fan. Brody tried to help :)

His Marshmello costume went viral on twitter! Marshmello even liked and shared it!

2019 Walk4Hearing with Kacie the Cochlear Koala

Brody one first place in the regional spelling bee

Christmas with the cousins

Christmas piano concert

We got to attend Camp Courageous for Kids again this year. Our kids LOVE CCK. We also get to spend the weekend with other families who have children with hearing loss. The kids have all different activities they can take part in. Some favorites are always horse back riding, crafts, fishing, and swimming.

Brody earned his yellow belt in karate!


Dressed up as Dog Man (his favorite book character) for school.

Brody got 3rd place in his age division at the Kentucky Spelling Bee for kiddos with hearing loss. 


Then we got shut down like the rest of the world :( Brody continued online learning. Ella met with her teacher for a bit each day. I continued teaching my students online as well. Jordan got to stay at work the whole time! We were very thankful for all of the activities our Children's Minister, Ms. Amy, posted for us to do each day. We did many scavenger hunts and experiments. 

Built a fort!
A picture with sunglasses...and Ella's signature pose.

As you can imagine, online learning is hard for all kids. Add in there a hearing loss and it become tiring and frustrating. Thankfully Brody can read captions to help follow along. Many of the platforms that are offered for online teaching do not include captioning which makes learning hard. He did well though. We found an app for captioning that he put on a phone in front of the computer. They weren't the best captions, but they were better than nothing!

First Day of virtual learning.

We tried to convince Dad to get a pool, but we got a blow up one instead. :)

Swimming with Ella.

We celebrated Easter by watching church online and eating with Grandma and Papa. Aunt Sara and Uncle Greg zoomed in for the meal time. 
We're bored in the the house bored!

Brody had different projects for school. We made a color wheel and a time capsule. 


We had a drive-by wedding shower for Aunt Sara and Uncle Greg.

Ella's outfit was on point!

We also camped didn't want to camp outside ;)

What's better than watching TV in your tent lol

We had to say good-bye to Brody's best friend from school who moved out of town. :(

Brody has missed him!

Dad shaved his beard before Mother's Day. We all agreed we were not fans. 

Who is this man?!?

Celebrated our last day of school in quarantine. 

That quarantine hair...

We went and saw Dr. Mike at Cincinnati Children's. Again, I could never say enough good things about Dr. Mike! It is also so cool to see the process of programming when the child is older. I usually only see them up to the preschool age. Brody now gets to tell him if sounds are too loud, just right, or too quiet. He can also give a scale of numbers to say what it sounds like. 

We don't get social distancing when we want to see the computer.

We celebrated Brody's 8th birthday with the grandparents coming down!

Baby Cakes Cupcakes in Lexington!

The Louisville Zoo had really cool lanterns that we got to go see twice!

With the dragon in the pond!

We picked up school lunches this summer and had many picnics. 

At one of our local parks

Brody took golf lessons with First Tee Louisville. They were offering lessons for kids with hearing loss, but he was the only one that signed up! So, they added him to another group.

They spent time swimming at Aunt Sara's.

with Aunt Sara's dog, Jack

If you are in Kentucky, you know that Ms. Virginia Moore is Gov. Beshear's righthand woman. Brody got to participate in a Q & A with her!

Talking to Virginia

We also cancelled our Beach trip and opted for a lake trip.

Brody fishing off the boat. 

Most camps that Brody would have attended ended up being virtual this year. He made an I Love You hand craft for the Hands and Voices camp.

They received a box full of activities!

Aunt Sara and Uncle Greg got married! Brody was the ring bearer and Ella was the flower girl.
Brody and Aunt Sara

Brody, Ella, and me before the wedding

We decided on a last minute trip to Florida. The week before, the KY governor but a travel ban in place to many state, FL being one of them. So we decided to head to Nags Head. There was a hurricane coming, but we decided to brave it. We landed in VA and drove the hour to Nags Head. We were 20 min from the hotel when we got a mandatory evacuation notice for the islands due to the hurricane. So we ended up turning around and spending the week at VA Beach. We only had one day of bad weather and enjoyed the rest of the week.

on the airplane

Swimming at the hotel

On the boardwalk


Dolphin tour!

Lunch dates!

First day back to school with online learning.

We also participated in virtual 5k walks. This one was for our Hands and Voices Superhear-o 5k.

The three of them made it around the 1 mile circle of the neighborhood then headed home. Better than nothing!

Brody also accomplished a hard skill for those with balance issues. He learned to ride his bike without training wheels! He won a bike this summer from the library and we finally got to use it!

Brody won a bike through the summer reading program at our local library.

Brody participated in Mr. B's Bike Camp. If you are in the Louisville area, we highly recommend!

We celebrated his 7th hearing birthday (we celebrate the day his processors were activated). 

We decided to go the first weekend our local pumpkin patch opened incase it got shut down or something happened later on.

Spent the weekend at the zoo with daddy.

Seeing the gorillas up close!

Grew a beard like dad's.

Started in person school on a Monday...and contracted COVID by Thursday. Brody is still feeling fine thanks to the help of Ms. Linda's cookies!

Check out Linda's Front Porch Kitchen if you are in the Louisville area

If you need some good masks, check out NecessarilyNerdy on Etsy!

Boredom is setting in though. We are currently making videos and sending them to me. :) Look out for his (not going to happen) YouTube channel with all Fortnite dances!