Last Update:

12/27/08

Aubrey Belle was born on March 19, 2002. From the moment she was born, I could tell she was going to be a spirited child. We thought we were going to call her Aubrey, but it didn’t fit. I called her my Little Miss Belle from the very start. When her two year old sister, Emma, said, “Baby Belle”, we knew it had stuck!

Belle passed her newborn hearing screening at the hospital. When I noticed later that she wasn’t learning to speak like her older sister had, it never crossed my mind that she could have a hearing problem. I asked the pediatrician at her 18 month well visit about her delayed language development. She didn’t think it was a big deal at all.

At 18 months, Belle said “mama”, “dada”, and “Emma”. That was it. She didn’t respond when we called her name unless it was in a very loud voice. We thought she was so intent upon what she was doing that she was ignoring us. When she was almost two, Belle’s favorite nursery caregiver at church asked if I thought Belle could hear me. That was the first moment that I thought anything could be wrong.

Hearing Loss Identified

      We received a preliminary diagnosis of a moderately severe to severe hearing loss the day before she turned two. Over the next months, we went through the battery of tests. She had an ABR and a CT scan. Even though I prayed for the results to change, she definitely had a severe hearing loss and Enlarged Vestibular Aqueduct with Mondini malformations. We racked our brains for any family history or cause that we could think of. It was so out of the blue for us, and we were shocked. As she began the process for receiving hearing aids, I began the grieving process. I couldn’t believe that I hadn’t known she couldn’t hear. Then I realized all the words I had said and songs I had sung she had never heard.

     I remember crying tears of joy when she turned to my voice for the first time after receiving her hearing aids. She seemed curious about everything going on around her. I had no idea that we would battle for several months with keeping them on during waking hours. I remember searching the floorboard of the car countless times when she would pull them out and throw them down because she was tired of “listening”. She began seeing a speech pathologist weekly. We didn’t have much down time because Belle’s sister, Hannah, was due the month after Belle received her hearing aids. When Hannah failed her hearing test at the hospital, I thought it was a mistake. When Hannah was two months old, we received her diagnosis of severe to profound hearing loss. She received hearing aids at four months old. During this time we also discovered our excellent ENT specialist, Dr. Wendell Todd, and he began seeing Belle and Hannah every three or four months.
     I really had no idea what I was doing. We were just trying to keep our heads above water with three small children. I had begun home schooling Emma, and we were still attending the weekly speech therapy with little result. When we visited the Auditory Verbal Center of Atlanta for the first time, I felt like I was home. The therapists specialized in working with hearing impaired children and got real results! I knew Belle would be taken care of.

Auditory Verbal Therapy

      We began Auditory Verbal therapy a month before Belle turned three. I am glad now that I had now idea how hard the therapy would be. We began working with Mary Ann Costin who has to be the most dedicated, hard-working, and truly caring professional in her field. The going was slow at first. Belle had no idea what we expected from her. Mary Ann began by modeling to me how to speak to Belle.

I am a former elementary school teacher, so I thought I had some clue. I really didn’t. Mary Ann taught me how to speak to my children in order for them to learn language correctly. The results we have seen with Belle and Hannah are amazing. We spend our entire day in language learning, whether formally or informally. We do structured therapy sessions daily at home, plan trips to interesting places, and speak about everything we do and see all day long during normal daily activities. Auditory Verbal therapy has become a way of life for me.

      A few months after Belle began therapy, we discovered that the hearing in her left ear had deteriorated to a profound level. She received a more powerful hearing aid and plugged right along with language learning. I realized at this point that a cochlear implant would be a real possibility if she lost any hearing in her “good” ear.

Time for the Implant

      The next few months became a blur as we anxiously awaited the arrival of Belle’s brother, Timothy. We decided that private Christian school would be the best place for Emma, since therapy sessions and audiology visits took up so much of the day with the younger girls.  I began some basic research on cochlear implants and joined the Alexander Graham Bell Association for the Deaf and Hard of Hearing. When Tim was three weeks old, I began noticing that Belle was not responding like she usually did. Seemingly overnight she had lost more hearing. We immediately got her in to the audiologist, and I wept when she showed me the audiogram. Her “good” ear was now at a profound loss.

      We already had scheduled an appointment with the implant audiologist, Jolie Fainberg, to get some information on our options for the future. We quickly moved up that appointment and got the process started to be approved for implantation. Meanwhile, Belle was becoming increasingly frustrated at not being able to communicate. We knew that we had to have the surgery done as quickly as possible. Belle’s surgery was scheduled for May 12, 2006, almost exactly two years after she had received her hearing aids.

Update

      Belle has had her implant for over a year now! I don’t even remember her without it. She is thriving with her amazing new hearing and learning so many new things. We are so thankful that she is ready to start school full-time in a few weeks. She is going to love the environment and all of the new experiences she will have. It is so hard to let her go from under my wing, but she is ready to advocate for herself and learn to be her own person.
     Belle continues to amaze us daily. She is understanding most of what we say to her and following multi-step directions. She is expressing her new vocabulary more every day. She has truly bonded with this technology. She wants her processor on every waking moment. She wants to talk about everything she sees and asks so many questions!