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Friday, December 7, 2012

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!

1 comment:

  1. That was rough to read, I made it almost to end before busting into tears . I admire your courage and strength. I don't know you, but I know your father, what a great guy he is. I wish all the best to you and your family. I will certainly be praying for Brody as well as you and your husband. God bless you.