BAD NEWS FOR MAELYNN

The day before we left for our SLC vacation, I took MaeLynn to Seattle Children’s Hospital for her audiology test. She was amazing and her tester was so impressed with her ability to stay on task, be consistent, and well behaved that she was very confident the test was extremely accurate (not bad for a two year old).

Unfortunately, the results showed that her BAHAs are not doing much good as she indicates a loss of moderate to severe. In many areas she came back worse than Amornthep before his cochlear implants. However, because her Cochleas do not indicate any damage, and she does hear normal in some ranges and frequencies (but these ranges and frequencies are in areas we normally don’t detect anyway), Seattle’s policy is not to do a cochlear implant. I asked her then what other choices we have to improve her hearing and she said the BAHA is her only option. But, unfortunately, it is already programmed at full capacity. It does give her a little more vibration to hear better, but compared to normal hearing and even what Amorn hears with his imploants, it is so subpar that it is practically nonexistent.

Thus, she said we just have to come to terms that manual language will be her only language (ASL). I have no problem with ASL because we use it every day, but what I do have a problem with is that she can’t hear a horn honk, or have any type of hearing awareness for safety sake. One of the things I told Seattle when they were fighting me to implant Amorn was that if he could hear a horn honk and it would save his life, then to me that would be success. That comment was what finally convinced them that my expectations were not unreasonable and they went forward with the implants.

In MaeLynn’s case, I asked her audiologist why the cochlear implant team feels that keeping normal hearing, even though it may be practically non-existent, is better than cochlear implants that can amplify one’s hearing to normal? This viewpoint makes no sense to me. She completely agreed with me and not being on the cochlear team, is frustrated with this policy. She said she was going to speak with the team and hope that since we are already a cochlear implant family, they may overlook their policy; however, I should not get my hopes up. She suggested I write a letter to the team explaining my case, but I personally think a phone call is in order.

Once again I must go to battle with Seattle. If she lived in a deaf community, I feel she really wouldn’t be disadvantaged. But, the fact remains she lives in a hearing world and, therefore, all her friends and associates will be hearing and very few will know sign language. At least Amornthep now has the choice to sign his whole life, or work on using his hearing and vocal communication with the aid of the cochlear devices. He is working really hard right now to speak as he desperately wants to talk with his friends at church and school. With MaeLyn, I fear she will feel left out with her peers because she will not have the choice to try to communicate with her hearing friends. She will only have sign as her communication and most everyone we know does not know sign language. I pray they will either let me know some other alternatives, or work with me to provide her the best possible outcome!