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Two Steps Forward, One Step Back

Posted Mar 02 2011 8:43pm
I'm pleased to announce that CJ's hearing aid is back and seems to be helping him tremendously. Actually, we got it right after the New Year, but I haven't been so great about blogging. (Look at me doing a great job at catching up, though!) He was so very excited to get it just in time for snow because he could wear it sledding and not have to worry about his cochlear implant flying off as he whisked through the air at speeds upwards of at least 2 miles per hour.

His teacher and Deaf ed. instructor as well as his speech teacher all report that he is much more accurate in his hearing with his aid on. This is GREAT news, and I'm so delighted to hear that he's finally doing better and has hearing on both sides. Well, we think he has hearing on both sides now. So, having the hearing aid in and functioning represents the two steps forward. We're always grateful for two steps forward, right?

It wouldn't be life if there weren't a little opposition, though, so we must prepare ourselves for one step back. We took CJ today to his audiologist to make sure his aid was programmed to the best possibility capabilities and to check on the status of his processor. While he was very compliant, they never did get to test the aid. The audiologist ran a test called NRT (Neural Response Telemetry), which checks each electrode in the implant to be sure it is functioning correctly. Here is a better explanation of how it all works.

We have done a few tests before and it appeared that some of the electrodes might not have been working, but attributed it to the fact that not all 22 electrodes fit into his damaged cochlea. This time, though, it became very clear that only TWO of his 18 possible electrodes are working. TWO!?!? This is definitely a big fat UH OH! The audiologist was going to be meeting with our doctor today to determine what to do next. The plan is more than likely to do a CT Scan of his cochlea to see exactly what is going on. That's the only 100% accurate way to be sure what is happening, but the suspicion is that tissue has grown over some of them or perhaps nerve endings have died...or something like that. If that's the case (which we have a sneaky feeling it is), our only option is to remove the current implant and re-implant him.

The baffling thing is that he passed his hearing test as if it was all working. We think there is a chance the other 16 electrodes haven't been working for a LOOOOONG time, and he has learned to compensate for that. I remember him telling me over and over that it didn't work, and I would adjust his processor for him and he would tell me thank you and walk away. Apparently that wasn't quite enough.

So, we've taken one step back...maybe. I hate that he may have to endure this surgery AGAIN and be retrained to use an implant, but I'm grateful that technology is there to help him in the first place. And, even with one step back, two steps forward is still positive progress. We always love positive progress, right?
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