BEA Event

The second to last weekend in March (or the penultimate weekend for fellow word geeks ;)) Peter, my mom, and I went to the first Pediatric Bionic Ear Association meeting in the SF Bay Area. We met some friends for lunch at a great Deli (thanks for the recomendation, B.!), then caravaned over. I thought it would be packed, since we have at least three major CI centers around here.  But when our three cars pulled in to the tiny parking area at JWPOSD we had our choice of parking places.
Wrong day? Wrong place? Why weren't there more cars?

There was a mom and daughter going in to the school, so I was pretty sure we were at the right place. Inside there was a table of AB equipment to look at, games set up, a snack table, an AB Rep, but only a few other people.  It was designed to be a social event, so I felt bad there weren't many people.

One sweet girl, whose mom had driven a few hours to come, took an instant liking to Peter. I think she would have taken him for the afternoon if I had let her! She had two CI's, and lived in an area with very few other deaf or CI people.  Her mom had brought her because A. likes meeting other people like herself.  I was so happy to meet her and her mom, who is an active participant on one of the yahoo groups I am in.There was one other girl there with a CI, but I didn't see the two interact much.  The girl who liked PJ, A., seemed like any other girl, except for the fact that she had things on her head.

The other girl had come from much closer- her soccer practice in San Jose, as evidenced by her jersey and shorts ;). Her mom and I talked a bit. The girl is a twin, and her sister is hearing. Both were born very premature, and while in the NICU one needed really powerful drugs to fight infection- saved her life at the cost of her hearing. But now they are both amazing kids and doing great. The one thing the twin with the CI didn't do was play basketball. Her mom had played, and had that dream for her daughters, but the noise level in the basketball court was not something the twin with the CI liked. I know I don't want to put any limitations on anything Peter might want to do, but I filed "acoustic environment of various sports" away as something to think about later.

I also talked to a member of the Adult Bionic Ear Association for a bit. T. has had his CI for about 5 years now.  He lost his hearing really suddenly as an adult due to an unknown cause.  He loved his CI, but was on the fence about getting a second one, even though as the noise levels rose in the room he had more difficulty hearing. (Two CIs help hear better in noise) He did say that if he could have done both at once he would have, but insurance wouldn't cover that when he got his first. One thing that I learn from him is that they use different strategies to map kids and adults. I have not learned much about MAPping yet, but I am sure I will. He said that he was initially really frustrated because he would hear voices well, but his dog's bark was wrong, and when they fixed it so the dog sounded like himself again, the phone would sound weird, and so on. Finally after many sessions his CI Audi suggested mapping him like they map kids- with sensors stuck on his head, and having a computer analyze how his brain reacted to different levels of different auditory nerve stimulation. He said it was an amazing breakthrough that had made all the difference, and that everything sounded so much better after that. I am glad to know the kid mapping works well!

My mom hadn't been involved in much of the CI medical visits, so I thought this would be a good opportunity to see the actual devices, meet users, and meet my friend B., too.  We talked to the AB rep, and she showed my mom the outside pieces, and let her hold one of the pieces that goes under the scalp. The electrode is so small and flexible it is hard to believe what it can do! There is a new Behind The Ear (BTE) processor coming out, but we couldn't see one, because they can't show them at all until the FDA clears them. But my mom did get to see the cute little waterproof Neptune processor, though none of the kids at the event were wearing one.

I think my mom was most impressed with a little 22-month old who had been implanted at 16 or 18 months. The little boy knew all his color words, and impressed my mom as being more than age appropriate in language. I am not sure this experience changed anything for my mom, but I know it gave her some really good examples of what is possible.