So, here we go:
May 2012
We FINALLY get a return phone call from Calvin's Ear Nose and Throat specialists office regarding the CT scan and MRI and the news isn't good. We found out that Calvin has THREE types of hearing loss. 1) His vestibular aqueducts are enlarged. 2) His Cochleas are deformed 3) His auditory nerve in his left ear is not present and the nerve in his right ear is deformed. Any one of these alone would be enough to make it very hard for someone to hear. But because he has all three, Calvin hears NOTHING. World wide, there are only a handful of people born every year with a complete absence of sound. Calvin is one of them.
In light of hearing this, I wanted to make sure that I understood where we were and what our options were. Because Calvin's audiologist (AuD) was out on maternity leave, I scheduled an appointment with his ENT so that she could clarify.
August 2012
We FINALLY got in to see his ENT (apparently it takes a lot of patience to be the parent of a deaf child).We went to the appointment expecting the Doctor to confirm what the nurse had told us on the phone; that due to the condition of Calvin's cochleas, auditory nerves and vestibular aqueducts, he was not a candidate for a cochlear implant. Instead, the Doctor seemed very confident that she could place an implant in Calvin's right cochlea, the one ear that does have an auditory nerve, albeit damaged. When I asked how successful the implant would be, she stated, "Oh very. I have no idea if it will give him any hearing though." Those were her exact words. Seriously? How can that be called a success??
Many sleepless and frustrating nights were had at that point. What would you do as a parent? put your kid through a very challenging and expensive surgery on a "Maybe he'll hear, I don't know"? By September I was thinking, no. Let's not do a cochlear implant. Rob didn't feel the same though, and it was a struggle between the two of us. For every measure that I wanted my son to hear though, I didn't want it to come at the expense of so much else.
I know that to some of you, that may seem unfathomable. To pass up the opportunity to help your child hear sounds downright neglectful. However, the more I have been exposed to the deaf culture, the more comfortable I am with Calvin's deafness. It is so much a part of him now, that I can't imagine him any other way. His personality is strong, and smart and funny. He's quick witted and very bright. Just tonight I caught him playing in his crib instead of sleeping. When I signed, "What are you doing?" to him, he signed back, "Playing" then, "Dancing" and he started to dance. I would miss all of that if it went away. If he suddenly didn't need to sign, we would lose the level of interaction we have with him. I know there are still some who will judge me for saying I am fine without a cochlear implant for my son. But let me ask you this, is there any difference between him HEARING me say "I love you" and him SEEING me say I love you? In our family now, there is not any difference at all. I know that the ability to hear would serve Calvin well later in life. More job opportunities, better communication skills, better relationships etc. But what if all of that can be accomplished even if he never hears a word?
Moving on to October 2012:
We ran another 5k with the Olive Osmond Hearing Fund (I use the term ran very loosely here. Rob and I took a leisurely stroll and chatted while everyone else scooted around us.) and I was fortunate to be able to meet another AuD. She had a suggestion of who we could take Calvin to for a second opinion. He's a Neurotologist at the University of Utah, and difficult to get into, but worth the trip. As she was talking, very suddenly this weight lifted and I felt immediately better about the idea of an Implant. I realized that maybe it's not the idea of an implant that is giving me so much confusion and fear, but the circumstances surrounding it here. Rob felt the same way, so we started the process of getting a referral to go see Dr. Shelton.
And that leads me to tonight. I can't sleep, I have so many questions.. and I really do kind of feel like Dorothy going off to see the Wizard in Oz. I have so much that I am looking for from him. I am hoping above all, that he can give us piece of mind one way or another.
I started this blog to be as educational as I could, and I have not done well by that at all. Please keep in mind that I am not an ENT, Neurotologist, or Audiologist. I am just a mom who has tried my best to understand where we are headed. just like many other moments in my life, I was prepared to have to understand the cochlear implant process long before I needed it. From the first moment we were told of Calvin's hearing loss, I remembered an episode of Scientific American Frontiers that I had watched several years ago, before I ever even met Rob. I found it again and have watched it several times. This is perhaps one of the clearest explanations of the process that I could find, it even shows the actual surgery. Please, if you have the time, watch it. It's about 20 minutes long.
I wish more than anything that every child who gets a cochlear implant could have the kind of success that this little girl has, or like this little guy:
However, that's not always the case. After making the appointment to see Dr. Shelton, we've been able to meet with our original audiologist. Calvin has been re-tested to confirm that he has no benefit of hearing from his hearing aids
This test is called the ABR
This is us in a soundproof booth, I have earplugs in because it would be loud enough to damage my hearing otherwise.
Just as she has been in the past our Audiologist, Kerry, was very supportive and sensitive to what we are going through, but firm in her dedication to helping us do the best that we can for Calvin. After we chatted for a bit, she very gently said, I want to prepare you for hearing the worst when you go to Utah. I have always been concerned about the anatomy of his cochleas, and I want you to understand that it might not be possible for Calvin to receive an implant.
A year ago, I would have been even more devastated than I already was to have heard this. However, this time, it didn't even phase me. I listened to her explain what she meant and I understood the complexity of his case so clearly. I know now that even with an implant, it's likely that I will always have to sign with Calvin. Maybe this is what his first Doctor was trying to tell me, and either I failed to understand or she failed to explain. Or maybe it's what I needed to push me to be proud of Calvin's deafness.
While they are a miraculous medical advancement, cochlear implants aren't a cure all. Not everyone who is deaf can have one, and not everyone receives benefit from them. So while I am hopeful for our appointment, I am going with my heart and my eyes open. I am asking for nothing more than a final say in what is right for Calvin... but even as I write these words I realize that no one can give us that. That is something that Rob and I have to prayerfully decide together. I can ask for clarity, but the courage, heart and intellect to move forward can only come from us.
Please, if you have a moment, say a little prayer that Rob and I will be guided to do what's right for Calvin.
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