This is the article that was published in
Volta Voices
about
Alexandrea Venable
In the May/June issue
THE GIFT OF THE
COCHLEAR IMPLANT
It is now obvious to me that giving my daughter the gift of a cochlear implant has been the best decision that my wife and I ever could have made. Alexandrea Nicole Venable was born December 26, 1994. When she was 8 months old, Lara and I noticed she was not responding to certain sounds. The books on raising children said that she should love to bang pots and pans together and beat them with wooden spoons. Alexandrea showed little to no interest in this. We asked the doctor about it and she told us that there was nothing to worry about. As time went on, we insisted that the doctor do something, and she reluctantly ordered an audiogram. As the audiologist told my wife, either there is a problem with her hearing, or she is really stubborn. Well, now we know the answer is both! At 18 months, using the auditory brain stem response test, we found that Alexandrea has a severe to profound hearing loss. After extensive investigations into educational methods, looking into assistive technology options to increase Alex’s chances of being successful with
speech, and 2 years working with hearing aids, Lara and I decided on a cochlear implant. We felt this was the best chance Alex had to learn to listen and to speak.
The hindsight that we have now would have come in handy at calming our nerves as we waited at Missouri Baptist Hospital in St. Louis. Lara and I waited for the nurse to come and give Alexandrea medication so she would sleep during the surgery which would place the magnet and electrodes of the Nucleus 24 implant into her head. We knew that what we were doing was best, but the “what if” questions filled our heads at this last minute.
Alex’s Aunt Shelley, Uncle Peter, and her Great Granny showed up at the door to the playroom. This was a real shock because Aunt Shelley and Uncle Peter had come in from New Mexico. This family support was a godsend, and it continued to grow. Alex’s Grandfather and Grandmother Venable also
came in to see her. She had been just a touch apprehensive, but now she was just overjoyed that so many people she loved had showed up at this strange place to visit with her and make her laugh. It was not long before the nurse arrived with a little cup of medication to drink. She did not hesitate to
down this clear liquid, having not been allowed to drink for 12 hours prior to the scheduled surgery. Even though the family was all around, I felt so helpless holding my little girl as she faded into sleep.
Then came the long walk to the surgery area where I handed Alex over to a stranger. Lara was in tears and did not want to say goodbye, and my heart was breaking. Part of me wanted to stop it, to spend a few more minutes holding her, to play with her hair just a little longer. I knew we couldn’t; it was time to go. The family sat with us in the cafeteria for the first hour of the wait. We were told to expect the surgery to last about two-and-a-half hours if all went well. The call came after only one-and-a-half hours. The surgery was over and all had gone well.
Lara and I joined Alex in the post-op room where two wonderful nurses were watching over our child. Alex’s doctor arrived bright and early the next morning to remove the bandages and take a look at the incision site. He was very happy with how it looked. This was our first look at it, and it was not as bad as we had imagined. I have included some photos of Alexandrea’s incision on my webpage, http://home.stlnet.com/~poohbear/family.html. I decided to publish these pictures so that parents considering the implant for their child could see exactly what the incision looks like. That was one thing I really wanted to see ahead of time so I could prepare myself, but it was the one thing I could not find. Alexandrea’s incision is referred to as a large C. I am told that other surgeons use a small C incision that is closer
to the ear. If you are considering an implant for your child, ask your surgeon which type of incision he or she uses and ask him or her to explain the differences. The doctor did tell us to expect that the Alex’s head might swell a little and the incision may bleed just a bit, but not to worry about either. It turned out that there was almost no swelling and the incision did not bleed at all for the first several days. After about a week, it only bled in one small spot, as if a child had pulled a scab off their knee, nothing at all to be alarmed about.
The biggest worry that we had during this recovery time was Alex’s fear. She seemed to be afraid to move her head, and she had spent the first 2 nights after the operation laying with her head turned to the right. She did not want to eat for 2 days, and she would not stand up. We were able to
understand how unbalanced Alex was feeling. I came up with a couple fun activities that we could do with her first laying down, then sitting up a little more, then standing but leaning on a couch, and finally standing on her own after a day.
We started with finger painting but not with her fingers. I dipped her feet in paint and held the paper above her feet as she was laid on the couch. She kicked the paper and made pictures. We also did a lot of foot prints and hand prints. Next, we put the paper on her easel and Alex had to
stand herself up to finger paint. She was very nervous, but putting her hand in the paint took her mind off of her fear, and the nervousness turned to laughter. I held her up for a while, but by the end of the third day home, Alex was up and walking around as happy as could be. Her balance was a little
off, so she was cautious, but still willing to have fun. The creative, hands-on games really helped Alex.
Six months after the operation, Alexandrea is doing wonderfully. She is now 4 years old and attends Central Institute for the Deaf. The parents there make a wonderful support group. In the past 6 months she has gone from
not using her voice for making words to repeating three word sentences. She babbles and plays all the time. She has such a beautiful voice. The implant has given her what she needs to learn to speak, and now she is being taught how to use it.
UPDATE
12-12-99
Alex is no longer attending Centrall Institute for the Deaf.
She is back in her old school district and receiving,
what seems to be,
wonderful service.
We are very pleased with the progess that she has made during the last year.
We were warned by many of the Anti-CI people
that things would turn out bad if we went with the implant.
I am happy to report that the sceptics were
wrong up to this point. Everything is beautiful.