What a week...what a year

Sorry for the lack of posts...Mama's been out of commission! I do have to give a shout out to the most amazing hubby/daddy out there. Jordan stepped up big time. I even got a home cooked Italian dinner for NYE! He gets the Mr. Mom award in my opinion. I'm sure he has a new appreciation for Grandma being with Brody all day, everyday too :)

Brody loved all the Daddy time!

Brody finished out Christmas with way too many presents. Seriously, you family members are too generous! He was done with Christmas about 9pm Christmas Eve. We headed back to KY. Jordan really wants Brody to always wake up Christmas morning in our house (who can argue with Mr. Mom). So we decided to go ahead and start that this year. Good thing Santa didn't bring too many toys! Grandma and Papa Brown took care of all that! He was worn out after all the Christmases!

One of the many Christmas outfits

 

Mommy and Brody at Great Aunt Bobbie's house (make you feel old to be a GREAT Aunt?)

Worn out Christmas morning

There were a few favorite gifts...I'm sure others will turn into favorites soon!

                                       

Bunny puppet from Great Aunt Penny (you feel old too?)

On the 26th, we met with another opthamologist. His name is Dr. John Franklin. He is the partner of Dr. Craig Douglas, a pretty recognized doctor in the Louisville area. We originally had an appointment set with Dr. Douglas, but he had to cancel due to being sick. Um...can you say God intervening?!? We absolutely love Dr. Franklin! He is probably in his thirties (we were looking for someone to stick with Brody). He worked in St. Louis (an area densely populated with deaf children who have cochlear implants). Although he said he had never had a child with Usher Syndrome of any type, he has worked a lot with children with Retinitis Pigmentosa (the condition associated with Usher's that causes the vision loss). He agreed with most Dr. Fishman had said. Dr. Franklin agreed that Brody's eyes look good right now. However, he did notice that the vessels in Brody's eyes were a little thin which is an early sign of RP. It's also normal for a 6 month olds vessels to be a little thin, but he's looking more closely at them. Brody behaved wonderfully again through the whole appointment! He loved all the lights Dr. Franklin had...who would have thought?!?

The next night, we got together with my parents, grandmother, sister and brother-in-law, and the Rogers Family. They have a set of twin girls who have cochlear implants and an almost 3 year old. My mom wanted my dad, Jordan, and Dany (brother-in-law) to meet the twins. When most people think of a deaf person, they think of the deaf speech or automatically think of sign language. Now, I am a teacher of the deaf. My background is in the oral approach (speech). However, I believe that some sign can be beneficial for children who are deaf. Sure you can hear with hearing aids or cochlear implants, but what happens with a profound loss when those are taken off. They are back to not being able to hear again. Sign comes in handy for bath time or swimming or the beach or when you are across a noisy room and they wouldn't have been able to hear you with perfect hearing anyway. My mom signed with my sister and I and we turned out fine :) Brody will have speech as his top priority, but we have already introduced signs to him. Okay, stepping off my soapbox and back to the Rogers.

Brody loved the girls! It was great for the guys to hear how they talk and see how they function like any normal kid. Sure when the baby was crying, the tv was on, and people were talking it was hard for them to hear...but I couldn't hear very well either! If you don't know any kids who were implanted in their early years and who have had early intervention, you are missing out! More than half you wouldn't believe we're deaf! The advances in technologies!

We spent the rest of the week/weekend at home sick. :( Bad Mom Award goes to me for not dressing Brody all warm and sticking him in the snow for a picture! We can just hope for another snow and pretend that was the first snow...right?!

Hope everyone has an amazing new year! We're cuddled on the couch taking pictures of the dog. I know you are really jealous of our lives. Here's to 2013!

Meet Me in St. Louie

Brody got a new state this week! Missouri is his 6th state in 6 months (Kentucky, Ohio, North Carolina, Tennessee, and Minnesota). Not too shabby. Well...if you count when I made the wrong turn and ended up in Indiana, he's been to 7.

Since finding out about Brody losing his vision, Jordan and I decided we wanted to take him to as many places before hand as we could. We want to give him some good memories. I know he won't remember things right now, but we're going ahead and getting a few out of the way :)

St. Louis was filled with the Massey family! We went to Great Aunt Bobbie's house (Papa Brown's oldest sister). We went to visit the arch. Jordan conquered his fear of heights and small, tight places. I made sure to point out Brody was fine so he should be too :) Brody was thoroughly amused as he slept through the whole thing!

Brody got to play with baby Wesley. Wesley is about 3 weeks older than Brody. It's good to see that although Brody is developmentally a little behind, he was still holding his own! We mastered rolling to the right and left from his belly to back. He can almost go from back to belly. Brody has trouble clearing his arm to be totally successful. He can sit up when he's supported now. There's only a little head bob and lean! It's normal for kids to with hearing loss to have motor issues, even more of a norm for kids with Usher's. All has to do with the vestibular system.

A new journey has started with Brody's hearing aids. He has started pulling them out when he is mad or wants attention. They are a choking hazard! Fun!

On to Christmases 2, 3, and 4! Merry Christmas Eve!

Ophthalmologist #1

We went to meet Dr. Fishman today. She is a pediatric ophthalmologist that came recommended to us by a few people. The appointment went good! First, they dilated Brody's eyes and took some family history down. They had a spray for his eyes instead of drops. I was wondering how they were going to get drops in a baby's eyes. The spray looked like it was a lot easier to use.

Dr. Fishman used a light and a little magnifying glass thingy-majig to look into Brody's eyes. With Retnis Pigmentosa (what will cause his vision loss), there is clumping of pigment in the eyes. She explained that this is what starts the night vision loss. Brody didn't seem to mind the lights in his eyes. He even slept through the first part of it. Dr. Fishman said everything looks good right now. He is tracking exactly how he should be, his optical nerve looks perfect and pink, and his vessels don't look too narrow. Overall, she gave him a clean bill of health and said his eyes look great right now!

She made some recommendations to help the future outlook. One was to get an ERG done at the Kentucky Lions. She doesn't know if they will do the test on a baby even though she felt it was probably easier the smaller they are. Dr. Fishman is going to call and see about it. The second thing she wants us to do is give Brody cod liver oil. It has natural Vitamin A in it. Some research we have found on Usher's shows that Vitamin A intake can help the vision stay intacked longer. You have to be careful not to get too much though. It can affect other organs. Jordan and I want a second opinion on it before we give any to Brody though! Last, she said she had never had a patient with Usher's before, so she wants all of us to do more research on different parts of it.

Overall, we liked her. We have an appointment with Dr. Franklin next week. He is Dr. Douglas' partner. Dr. Douglas has been recommended to us from A LOT of people, but we couldn't get in to see him till the end of January. He had to cancel his appointment with us today due to him being sick.

Brody has a busy week ahead! Six different Christmases! He'll be traveling to St. Louis to see the Massey side (mom's side). Then, on to Cincinnati/Dayton to see the Fromholts and Winkles (Daddy's side) as well as some of Mommy's sorority sisters. Then, back to Louisville with Mommy and Daddy for Santa gifts. Finally, Grandma, Papa Brown, Aunt Sara, and Uncle Dany will be coming over for Christmas brunch! Worn out yet??? Brody is...

The Vestibular System

 Your vestibular system controls your spatial orientation and sense of balance. It is a part of the vestibulum in the inner ear. The yellow part is the Cochlea. That is where they will implant the electrodes when Brody has his cochlear implants done next summer. Every person has a vistibulo-ocular reflux (VOR). It stabilizes the retina on an object while your moving. This is when you are looking at something, turn your head, and your eyes move to stay looking at the object. (How many of you just did that to test it!?) Since you're constantly moving your head around, the VOR is important. (And that is about the extent of my medial knowledge and research!)

 

Diagram of the Vestibular System

Some children with Usher's Type 1 often have balance issues that are affected. They may crawl and walk late due to these problems. So far Brody has been hitting milestones a few weeks late. He is rolling over from stomach to back now! He is trying to go from back to stomach, but gets too frustrated and throws a fit! We have been working with a wonderful Physical Therapist every other week. We are seeing wonderful results with her.

On Wednesday, we went to Heuser to meet with Dr. Edwards. She did a test on Brody's vestibular system. If you have ever seen an ABR, it is a lot like the test she performed. Dr. Edwards put electrodes on Brody's forehead, behind his ears, and on two muscles in his neck. Apparently it tickled when she put the ones on his neck because he laughed some big belly laughs (wish we had that on video)! The test took about a total of 10 minutes. They found that the right side checked out perfectly. The left side did not have any good waves that could give an accurate measurement. We go back in three months to have follow up test. Dr. Edwards asked if she could follow Brody as a little case study. OF COURSE! The more people watching his development is fine with me.

We have gotten some great recommendations for ophthalmologist. We have appointments with Dr. Douglas and Dr. Fishman in Louisville on Tuesday. I'm not expecting any answers at this point, but we are just meeting the doctors to see if either are a good fit for our family. We would like to find one that can follow Brody for while. We also have some other doctors and researchers we are going to meet with soon.

On a side note...Brody met Santa!

Thank You!

The support and encouragement we have had from family, friends, acquaintances, and people we don't even know has been unbelievable! We are so lucky to have each of y'all in our lives. People keep asking us how we can be so calm and collected already. You know. It is what it is. We can't change the hand we've been dealt, we just have to embrace it and move forward.

I went to a funeral this week. A former student at my school passed away after battling serious health issues. Her mother spoke at the eulogy and said something that put things in perspective for me. She said that if you look at a child who has a disability, they are almost always the happiest child you have ever met! They don't care if they have something "wrong" with them, they live life to the fullest. So you shouldn't feel sorry for them either! Just continue to love them and cherish them as you would any other child. That's what will make them feel wanted and loved.

Jordan and I are blessed to have such good people in our lives. Brody doesn't know most of you yet but I think he's blessed to have you in HIS life too.

THANK YOU!

The beginning

Brody was born in June of 2012. Although the pregnancy was filled with horrible morning sickness, it was overall a relatively easy and laid back time of our lives. Brody is our first child, first grandchild on both sides, and first great grandchild on one side. He was supposed to have a easy, spoiled life!

8 lbs 7 oz, 21 inches long

Labor was a piece of cake! It only took four hours of labor from start to finish. The doctor barely had time to scrub in when we got to the hospital. No drugs (which I was pretty proud of myself for) and we were home in 3 days. Brody was almost a month early and was pretty jaundice. We came home with a bili light bed (it looked like a portable tanning bed in a suitcase). He was in it about a week filled with about another month of follow-up blood tests to make sure all of the jaundice was gone.

Bear Bryant meeting Brody and trying to figure out the light bed

While all of the jaundice was being worked on, Brody had also failed 2 newborn hearing screenings in the hospital and a follow-up test a week after we left. The clinicians said it was probably just fluid on his ears. He would be fine! My mother and I are both hearing impaired teachers. We know the field and the success with hearing aids and cochlear implants. I have never understood how a parent can not know their child is deaf. Clearly you should notice right? WRONG! We are both trained in the field and figured if he was startling and turning towards noise, then he may just have a mild hearing loss. After going to The Heuser Hearing Institute in Louisville, we found out though a series of test including ABRs that he was profoundly deaf in both ears. Who would have ever thought my child would have a hearing loss?!? That was my job; I was supposed to teach children with hearing losses then go home to my perfect little family. However, it was just a hearing loss. I could deal with that. He would get cochlear implants and strive in life. Brody could still play sports, get married, hold a job. He would be fine!

The day we found out about his hearing loss, we were fitted with a pair of loaner aids some mother had turned in. They found a pair of stock earmolds another family had turned in that fit him perfectly. At three and a half weeks old, he was wearing hearing aids. CRAZY! Most kids don't get them that early. Brody for sure responds to music. We almost always get a reaction out of him (stops crying, stops sucking the paci, or raises his eyebrows and looks around). His first ABR had no response. Since then, he has had some waves showing that the auditory nerve is working! We are on track to get bilateral cochlear implants. We have met with Dr. Bush and decided on him to do the surgery. Brody will go into surgery for the implants in June. We can't wait! Brody started First Steps with Miss Paula, his deaf Ed teacher, and Miss Pat, his physical therapist. He is doing great! He started rolling over around Thanksgiving and is starting to hold his head up much better. We are working on helping him distinguish between the presence and absence of sound with Miss Paula. Not an easy task!

Getting his new hearing aids at Heuser

While all of the hearing piece was coming together, we were waiting on the genetic testing results to come back. On my way home from work, I received a phone call from the testing center. I was sure there was nothing to find and they were going to say he had Connexion 26, a common diagnosis I see in my students. They are what we call "vanilla deaf ." No other problems. But that was not the case . The clinician said my little Brody had Usher Syndrome Type 1b. I was completely in shock. There are students at our school with it. I knew what it was. I was completely devastated. This couldn't be happening to my baby! He already has to deal with deafness, why him. With type 1, he was born profoundly deaf. He will also start to lose his night vision, peripheral vision, and develop tunnel vision. This is the type of stuff that is supposed to happen to other people so you can feel sorry for them and hug your own kids a little tighter. It's not supposed to happen to your own child.

Then the hard part came, I had to call my husband and tell him. He says I'm his rock, but in all reality he is mine. When he got home, he just held and rocked Brody. We were thinking the same questions. Why, why, why?!?! Then, Jordan went in to research mode. He found websites, articles, power points, and blogs of people, children just like Brody, who live long and happy lives. They have families. They play sports. They go to college (and graduate). They are successful. Someone should really pay him to research!

So here we are. Brody is 5 and a half months old. He's healthy. He love Mickey Mouse and football. He is stuck in a family that is divided between Alabama and Notre Dame (roll tide). He is funny. He is loud (yes deaf kids are loud). He gives the best cuddles. He is a blessing to Jordan and I. We may have a long road ahead of us, but through our faith in God and each other, I know we can handle it!