We first met with a first-year resident and shared Lily's background with her. She was young, most likely with no kids and no clue what it is like to be the parent of a child facing a big uphill battle in life. She was a bit condescending and I was glad that our interaction was brief. Despite bringing in an entire notebook of copies of all of Lily's audiological testing, OAE results, language testing, etc, she wanted us to do a "quick" round of audiological testing in the soundbooth before we met with Dr. Antonelli. This "quick" session with the student audiologists turned into about an hour and a half of unnsuccessful testing. Part of the reason it took so long was because Lily was tired, the other part was probably because of their inexperience.
After talking with the older, more experienced audiologist on staff, we made plans to return on September 19th to do more testing with her first thing in the morning when Lily is at her best.
We finally met with Dr. Antonelli, who is a really nice and very smart man, around 6:45pm. Dr. Antonelli was first briefed by the first-year resident and then we had a chance to ask questions and find out his plan of action for us. Because Lily's hearing loss is not complete, she is not a clear cut case for a cochlear implant. There is more testing to do. So on September 19th, we return for a CT scan (hopefully non-sedated), the before mentioned audiological testing, and more dental work for Charlotte. I am hoping to schedule an Auditory Steady State Response (ASSR) for the following day. This would need to be a sedated test for Lily but I think it is really important for her to have this one before Dr. Antonelli and his team meet to discuss Lily's case. The ASSR is a newer test and it is more precise than the ABR. It may give us the clearest picture yet of Lily's hearing loss. Dr. Antonelli mentioned that this is a test he would like Lily to have so I am going to take the initiative and try to have it scheduled while we are there for our next visit. We also found out that the brand of implant that they use there is Cochlear. (There are 2 other brands out there, Advanced Bionics and Med-El. Some clinics offer all three brands and let you choose, others only have one or two to choose from. This all depends upon what brand the surgeon has been trained to implant.)
It was difficult to talk and listen to Dr. Antonelli because Charlotte and Lily were so tired. They were wild and took turns jumping off the footrest of the examination chair while we talked. I had a list of questions that I had intended to ask but it was too hard to ask questions. Right as we were about to leave, Dr. Antonelli asked if there was anything else we'd like to discuss. I almost let the moment slip away and then attempted to ask the question that had been burning in my mind for so long: "How would implanting Lily with one cochlear implant be different from a child who is bilaterally implanted? Do you bilaterally implant children at your clinic?". I am not sure how it actually came out because I burst into tears as I spoke. It had been a long day and I felt like we were about to leave with no answers and no idea where he stood on bilateral implants and whether or not Lily even had a chance to receive an implant there. He answered kindly and said that is what they do, they do bilaterals all the time. There was more to his response but I was preoccupied with getting my tears under control. His response did give me hope though.
I barely slept that night after we got home as my mind swirled around the day's events. I think that appointment made me really think about *why* I want a cochlear implant for Lily. The chance for as normal a life as possible is certainly part of it. The chance to learn as naturally as possible from absorbing language around her rather than having it drilled into her head during intense therapy is also pretty appealing.
I wrote Dr. Antonelli an email the next day when my thoughts were clearer than at our appointment. Here is part of my email to him:
”. I have really been researching a lot about cochlear implants and specifically about the benefits of binaural hearing. It seems to me that Lily has nothing but good things to gain from hearing from both ears. From what I have read, binaural hearing helps young children acquire language more naturally and allows for better speech perception, more natural and balanced sound, and better sound localization abilities. For those reasons, I have chosen to seek out your advice and expertise. I just want my daughter to live as normal a life possible and it seems to me that a cochlear implant will help us realize that dream for her.
We have chosen at this time to pursue Auditory-Verbal Therapy with Lily and we are very lucky to have Janet Kahn as our therapist. We will officially begin therapy on September 11. Part of my desire in choosing AV is to have Lily a part of the hearing world as much as possible. I have my doubts that this will be possible with Lily only having limited hearing in one ear. I don’t want her entire childhood revolving around rigid therapy that keeps her from learning in the most natural way possible, which to me is through play and acquiring language from listening to the world around her.
If Lily does not qualify for a cochlear implant we may change gears completely in regards to how we choose to communicate with her. It seems too hard on her (and by this I mean that I really think pushing AV therapy on her when she understands so little could break her spirit and that is the last thing I want to do) to continue on the AV path if she does not receive more access to hearing. We will likely switch to a Total Communication education for her so that we may fill her up with language as quickly as possible. I feel like we have already lost so much time. This choice means that Lily’s entire future will be changed dramatically and her choice of education, employment, and relationships with others will be very limited. This is obviously not what we want for our little girl.
I heard back from him almost immediately but he was not able to reply with anything other than a request for a form that gives him permission to discuss Lily's case with me via email. I have since faxed in that form and have not heard back from him. I honestly don't expect him to reply. He is a very busy person- I'm just glad I had the chance to express myself more clearly.
On a different note, Lily and I met with the most incredible family yesterday. We were originally to meet last week on Wednesday but we met yesterday instead. The mother, father, and 15 year old daughter were kind enough to share their experience of life with a deaf child with us. Our stories have some similarities although we have a much easier path to follow than they did 15 years ago, mostly because Lily has some residual hearing and knows what sound is and their daughter had never heard any sound until the age of 2, when she received her first cochlear implant. She had a long way to go but all the hard work has paid off. She is extremely bright and articulate and they are so wonderfully supportive of her. I hope that we will continue to meet with them. I would love for Lily to have such a great role model in her life.
-Kriste
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