Saturday, August 15, 2009

Cochlear Implant Confusion

It seems that the declaration we received from Evan's would-be CI surgeon, Dr. Sie, last spring was a little bit...premature.

I called the CI team to see what needed to be done to get things rolling for Evan to be implanted this spring. After review of Evan's chart, there were a couple tests that somehow didn't get done and so his candidacy has been temporarily revoked. The additional tests are tentitively scheduled for September. One of the "missing" tests was the psychologist eval of me (and I seem to remember her meeting with Jeremy, and then exchanging some emails with me in lieu of a face-to-face meeting). I guess they've decided the in-person meeting is not optional. Another missing data piece is aided and un-aided hearing tests in the booth. I tried to explain the reason they don't have any results is because Evan frieks out every time they put him in the testing booth (and they've tried it with him probably 5 or 6 times now, at least). I don't forsee this next time being any different, but we'll try again.

We had some renewed interest in pursuing a CI because Evan seems to be more interested in the little bit of sound he does receive. He really likes something we call "head talking"--he pushes his head (behind his hear) up against our mouth, and likes it when we talk right on his head. Maybe it's the vibration or maybe it just tickles, but it really seems like he's hearing something.

This response has also made us wonder if he would get any benefit from a bone-conduction hearing aid. We did have a loaner bone conduction aid for a short time when he was around 2 years old, and it didn't appear to do much for him. But we want to try it again. His audiologist at Children's has another loaner one to set him up with at his next appointment in September. Obviously, if the bone conduction aid is successful, Evan won't get a CI.


Eva Nichole said...

YOur issues with hearing and hearing aid, CI or no CI is just like ours. We get one answer and then anther. Its a real pain and I can not handle it anymore. At the CHARGE Conference I meet a wonderful ENT and Audiologist who will be working with us after Eva's sugery and recovery. It stinks we have to go away from Childrens but we have to do what we think is right and this clinic has worked with other CHARGE kids and 2 that I know personally.
Good luck I hope it works out soon.
Crystal and Eva

Amy, Mike and Ben Russo said...

Just getting caught up on Evan's blog. How nice having Grandma visiting. But, how frusterating with the CI piece!! I'm impressed with all Evan can do... seems like tons to me!

Catherine said...

The BAHA bone conductor works great for Reuben and when I'm signing with him and maybe he doesn't have his aid on (which he pretty much does all the time, but just say he's fresh out of bed and I haven't put it on yet), then yes, I'll always speak directly into his left mod-sev ear and it works great for him. Other post: I got so behind from the UK trip too and just catching up now, but it really does make sense that there are times when we need to blog (write our own and read others) and other times when we can quite happily skip through life and not be so dependent on our invisible friend: Mr Blog.