Wearing his left processor and hearing again!
Heading out the door for school.
Great news! Ethan is hearing again! He's not necessarily showing evidence of hearing in day to day situations, like looking at you when you say his name, or even when you say something like "ice cream", which at one time would have elicited a huge response. He tested well in the booth though (down to 30 db) and is showing an interest in saying new words on occasion. He's not "talking", but now and then he'll attempt a word out of the blue and it takes us totally by surprise. It's basically like starting over. He was deaf for over 9 months, so I think he's rediscovering what sounds things make and what meaning is attached to the sounds of certain words. We are obviously still signing everything to him and he visibly understands us once we add the sign to the verbal message. The sign is definitely helping him attach meaning to what he is hearing, so it's a good thing he has such a solid ASL background.
Testing revealed that his right cochlear implant is no longer a functioning device. When the surgeon and audiologist left the OR to give me this news, the first thing I said was "that's great news!"....to which I think they agreed. We've had no idea why he was so adverse to wearing his processors and previous tests had indicated that there were issues with the right side, but the company that made his devices (Cochlear) told us that it passed the integrity test. That test yielded more questions than results and I was sorely disappointed with their assessment and lack of concern afterwards. We're talking about a patient who is nonverbal and basically unable to communicate when he's in pain, where it is coming from, etc. So our best guess is that he generalized the sensations of the failing right device to the left side as well and was fearful of wearing it, even though the left side has proven itself to be in textbook working condition.
With months of patience and the help of a team of autism professionals, we finally got him to wear the left ear again. The mapping process has not been going smoothly and our audiologist has had to resort to unconventional methods to create new maps since Ethan is completely uncooperative. The poor little guy has extreme anxiety around this process, undoubtedly the residual trauma from having the right side go down.
We're still not clear about what we'll do next. The team at Children's would like to see some cooperation during mapping sessions before they can commit to re-implanting the right side. That's completely rational, so we just have to keep working at reducing his fear of the process and hope that we continue to make progress, even if it's only in baby steps.