Lily and I drove to Gainesville today to meet with the cochlear implant evaluation team. We were scheduled to meet with them on December 20th, which seemed like an eternity to wait, so when the call came yesterday asking if we were available to meet this morning at 9:00am, I jumped at the chance. It turns out that we met with only one person, Dr. Lori White, and she was a very kind and knowledgable person. She was great with Lily and it felt like she really listened to what I had to say in regards to why I want an implant for Lily. She had some audiology students do a bit of soundbooth testing on Lily and it was obviously inaccurate. Thankfully, she recognized that and will wait to get further testing results from next Wednesday's ASSR. She asked that I get Lily's audiologist at FSU to do another round of soundbooth testing without her hearing aids in her ears so that we have several ways to "prove" Lily's levels of loss. Lily has become very accustomed to soundbooth testing and was faking everyone out by placing puzzle pieces in a puzzle after sounds were made in her headphones. I know her well enough to know that it was not a fair test and that she was just placing the peices down after pausing a few seconds. She would even pause and place a piece down when no sound was made.
We have just 2 more appointments to go to and we will know if Lily is a candidate for an implant or not. We see Dr. Antonelli on November 8th for a follow-up appointment and we may just find out that day what their answer is. Dr. White admitted that Lily is not a clear cut case, as she has a decent amount of residual hearing in her left ear at this point. But she agreed with me that hearing one only one side is a huge barrier to learning (read this man's account of life with one working ear!) and that two ears are better than one. They will also take into consideration that Lily's inner ear anatomy predisposes her to further hearing loss. And weirdly enough, the fact that Lily's cochlea is malformed could work in her favor eventually. She said they are a very conservative clinic and do very few bilateral implants because in a deaf patient with normal inner ears, they like to keep one ear available for future technological developments. When a cochlear implant is inserted, it destroys the cochlea and there would be no going back to it's former state. In Lily's case, her cochleas are already "damaged" so that would make her a more likely bilateral candidate if she should lose the rest of her hearing in her left ear.
One Week with a Cochlear Implant
4 months ago