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Monday, March 11, 2019

Bring on the changes!

This post is late, but we have been super busy with little Miss Ella. She cut her finger and it got infected. It was wrapped still when the infection started, so it had blood flow cut off from the tip. Looks disgusting but we are on the right path (after 3 ER visits and a hospital stay)!

We have been very fortunate for Brody's vision loss to have held off longer than other children we know with Usher Syndrome. We originally were seeing Dr. Franklin, his ophthalmologist, every 6 months. Since there haven't been any significant vision changes, Dr. Franklin had pushed his appointments out to a year apart. We went December 3rd to his yearly appointment.

We had been seeing some slight vision changes, but were unsure if they had to do with his Usher Syndrome or if it was because he was 6 now and could tell us what he was seeing. Mostly it is light sensitivity when he goes from outside in the sun to inside a building. We try to make him wear sunglasses to help aid this, but he mostly refuses to wear them. While sunglasses won't prevent the inevitable, it helps in the moment. He complained a lot this summer about "not being able to see" when he came inside (his eyes are adjusting slower than usual) and his teachers had let me know that he had made the same comments at school.

Jordan got to come with us to the appointment. It was his first time getting to experience the joy of holding Brody down while the nurses pry his eyes open to get the dilating drops in! It only took 3 people this time instead of the normal 4 or 5! 😩We're making progress! He understands that with Usher Syndrome, he will lose vision, but he doesn't understand the extent of it. We can't really tell him he's going to be blind or will only see this much, because really every case is different and everyone loses vision at a different rate and with different fields of vision. He just thinks he's going to need glasses and is actually excited about that part because a lot of his friends have recently gotten glasses. 😏

Dr. Franklin had a student with him, which I'm always a fan of because the doctors tend to talk through things more which helps us understand things better. He said that Brody's vessels coming from the nerve continue to be very thin. Often times with Retinitis Pigmentosa (RP) the vessels will also be very pale. Brody's vessels are still a good color, but have remained thin since we first started seeing him. This appointment, they also started see bone spicules in the peripheral retina. From our research, this is what typically shows up for them to diagnose RP if there is no genetic testing done to confirm the syndrome it accompanies. We found a great blog that explains it pretty well. "The word 'spicule' refers to a needle-like shape, derived from the Latin word the tip of a wheat plant. The term bone spicules is used to refer to the type of small cells that are laid down in the formation of new bone matrix. These spicules in the bone have a similar shape to the classic pigment finding in RP, thus the name. But why does the retinal pigment epithelium (RPE) change into spicule shape, and why essentially only in this disease? The answer has to do with how RP develops, specifically the order in which the retina begins to fail. Animal and human models have shown that bone spicules form only in areas of the retina where photoceptors are missing. The first structure to fail in RP is the rod outer segment, followed by the rod inner segment and then the outer nuclear layer. This happens to region after region in the retina, until much of the rod ring is lost. Then the disease can often progress to cone." (https://www.healio.com/optometry/retina-vitreous/news/blogs/%7B35395211-458a-4a0f-9a3f-f942feab0b21%7D/doug-rett-od-faao/blog-why-does-retinitis-pigmentosa-take-on-a-bone-spicule-shape)

This can progress at different rates, but Dr. Franklin said that they are barely showing themselves and we can continue coming for yearly appointments. If we see more change, make an appointment.




Brody has been excelling in his piano. He had his first recital at Christmas where he performed "Jingle Bells."


Brody won the Regional Deaf Spelling Bee this year for 1st and 2nd grade! He was very excited! He came in 4th place at the state level spelling bee.




He also started Karate at the beginning of the year. His balance is horrible (thank you Usher Syndrome), but he is doing his best. We have seen so many improvements over the last month. He often gets "silly" and falls over a little exaggerated. I think he's embarrassed that he can't do it as well as the other students in the group. His instructor is awesome with him though! He is very encouraging. Brody was able to do 5 kicks in a row the other night without falling over! He was so proud!


Monday, May 28, 2018

Kindergarten did not disappoint!

We have finished our first year of school! Brody loved every single minute of it! He had the best kindergarten teacher we could have asked for. She pushed him and knew when to help him. She mastered his Mini-Mic (a microphone that goes straight into his ears to bypass background noise in the classroom) and helped him advocate for himself as needed. He was able to remember to pass the mic off to his special area teachers and even remembered to ask the assembly presenter to wear the mic so he would be able to hear! I didn't post for an entire year...so here is a look back!

We started the school year with reading a story about a little boy with processors like Brody. He used his "super ears" to make him a super hear-o!

We saw the solar eclipse when it passed through!

We played soccer!

We did some vestibular testing at Cincinnati Children's Hospital. It didn't really tell us anything thing we didn't already know. It did, however, give us some statistical data to have written down that shows Brody's lack of balance.

His love for reading grew even more!

We picked some pumpkins at the pumpkin patch with Ella Jo.

Brody found a love for Star Wars this year! He was Luke Skywalker and Ella Jo participated as Princess Leia.

Kentucky hosted their first Walk4Hearing in November. In past years, we had gone to Dayton and participated in that walk. Papa Tom, Aunt Jodi, Uncle Josh, and Lily came down to support the Brody Monsters!

Brody changed his career choice a few times this year. For career day, he wore his astronaut uniform.

Brody's class enjoyed a Charlie Brown Thanksgiving!

He wanted to be "fancy" for Thanksgiving at Papa and Grandma's house.

Our Kindergarten school picture...we missed our chance for a hair cut beforehand!

In December, I took Brody to see Dr. Mike (his audiologist) at Cincinnati Children's Hospital. He absolutely blew me away! He was able to push a button when he heard the sound versus just looking at a video screen in the past. He was able to say when things were too loud or too soft and he got a 100% of the words Dr. Mike said when not in noise. Even in noise, he got 80% of the answers correct!

Basketball is probably not going to be in Brody's future again! He was not the biggest fan or the most coordinated athlete.

Some of Brody's best friends from school on Frosty the Snowman day!

Merry Christmas!



Again his Kindergarten teacher rocked!

Brody was student of the week!

We enjoyed a cold winter in Kentucky!



Brody did a presentation on being a mechanic (a new career choice). He went to Mr. Don's garage. Mr. Don showed Brody how to change a tire, look at a heat sensor, and let him look into a car engine!


Brody was 100 for the 100th day of school!

He started sleeping with an eye mask! 😂

We went to Deaf Awareness Day at the Newport Aquarium!

Brody got to participate in the story of Secretariat when the Kentucky Derby Museum came to his school. He played the owner.

Brody loved the Easter Bunny...Ella did not.

We celebrated Easter in St. Louis with my Aunt Bobbie!

Reds vs. Cardinals game! Brody cried because he had picked to cheer for the Reds and they lost...I told him he picked the wrong team! GO CARDINALS!


We went with Grandma and Papa to the Alabama spring football game.






We went to the Balloon Glimmer during Derby week!

Brody's school did a glow run! Jordan didn't realize it was actually running a mile...we probably shouldn't have eaten dinner beforehand!

Brody completed his requirements for Lion scouts and has moved on to Tiger scouts. He loved cub scouts this year and can't wait until next year!


Brody's class put on a musical "E-I-E-I-Oops!" He was a cow in the play.

Brody is playing baseball again this year! This is probably his best sport. This year they can hit off the tee or let the coach pitch to them. He is doing better with the coach pitching.


Brody had an awards ceremony at school the last day. He received 8 awards. He got a kindergarten certificate and a good attendance award. He also got an art award for excellence in art. Brody got two star performer awards for greatest improvement on Math MAP and Reading MAP (MAP is their standardized testing-Brody scored in the high 90 percentiles in all areas). He received 2 Principal Awards for being in the 90th percentile in math and reading. His most favorite award and the award he was most excited about was that he exhibited "Habit 5: Seek First to Understand, Then to Be Understood." This award meant that he listened first then acted. That's right, our child who is deaf won an award for listening!

We could not be prouder of Brody and his accomplishments this year. We had his IEP meeting two weeks ago. They used the words "superior intelligence" to describe him! Love this boy! Now bring on summer!