Returning from our Mt. Rainier trip, we had some big decisions to make.
Dr. Rubinstein, our ENT at Seattle Children's, helped us understand that a cochlear implant would be the ONLY way to give Cole directionality of sound. All other options would only carry the sound from the deaf ear to his hearing ear. Getting a CI would mean he would be able to tell who was speaking before looking up and searching for a voice. He would be able to hear a car coming and know where to look, etc.
We weren't wild about the idea of Cole's disability being forecasted to the world around him and were nervous about how people would react to him having a CI on his head. Would potential dating partners not be interested in him because of his CI? (If that's true, they aren't the right person anyway!) Would he be angry that we made such a big decision for him and regret having it? (If so, he can choose to not wear his external audio processor.)
Around this time, I found several facebook groups for SSD (single-sided deaf) people and another specifically for those on the path to a CI. Sometimes, a worried parent would ask for someone who regretted getting a CI. *Crickets* The only responses were overwhelmingly positive. Changed lives. Reading these stories over and over again solidified our decision to move forward in the CI Program.
Green lights. Let's do this!
Cochlear Implants for SSD people were only FDA approved in 2019. This means that insurance companies are dragging their feet and not likely to agree to pay for the surgery. Sometimes upon appeal, they will relent, but many times, patients will foot the bill out of pocket. Our surgeon was adamant that we cross every T and dot every I before submitting our request. There are several reasons insurance companies deny a CI surgery and we were going to pre-emptively answer every single one.
1) AGE - The FDA approved CIs for SSD patients ages 5 and over. Cole would be turning 5 in about six months so that gave us just the right amount of time to prepare our insurance packet before his birthday.
2) FAILED HEARING AID TRIAL - This one seemed really silly to us. If you put a hearing aid in a deaf ear, nothing happens. It would be like putting a pair of glasses on someone missing their eye. But nonetheless, we had to prove that wearing a hearing aid would not give him the directionality of sound we were looking for.
3) CLEAR CT or MRI - Proof that the rest of his ear is healthy and confirmation that the auditory nerve is intact and working.
4) PROVEN NEED - This one was going to be the most difficult. Cole is a super verbal kid who is bright and thriving in our home school. Sometimes, children are behind in learning or speech because of their deafness. We were going to need some creative wording from our surgeon and therapists to get this box checked.
We didn't want to turn around and make another trip to Seattle to pick up a hearing device, so luckily our local audiologist, Dr. Rogers, was happy to loan us a BAHA from her clinic. BAHA stands for bone-anchored-hearing-aid. Essentially, the device carries the vibration of sound from the deaf side through the bones of the skull over to the hearing ear. Normally, a screw is anchored in the skull for this device to be attached to externally. Of course, for our trial, Cole just wore it on a strap.
Within a few days, Cole wanted to wear his BAHA full time.
We noticed right away that he wasn't yelling so much. I hadn't realized just how many headaches I was getting and these seemed to stop cold turkey once he stopped yelling so much. Hallelujah!
We have a dear friend at church, Mariann, who has an implanted BAHA device behind her right ear too. She and Cole are bonded for life over their deafness. Mariann always made it a point to connect with Cole and ask how his hearing is going. She wrote us encouraging notes when we first learned of his deafness and even put together care packages for Cole for our trips to Seattle. I love Mariann and Cole's friendship and can't wait to watch it grow over the years.
Mariann gave us a pack of stickers to decorate our BAHA
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