Wednesday, August 13, 2008

Jr. High Student Participates in Bimodal Study: CI and HA

Not every teenage girl entering her Jr. year has the Jr. Prom or Jr. Ring Ceremony on her mind, some are more worried about helping others who may find themselves in her very same situation as a Deaf individual. To give you an idea of Nichole's thought process in choosing to go bilateral, read her letter to her audiologist:

Hi Marilyn,
My dad asked me if I was willing to give up my remaining hearing in my left ear for a second implant. Definitely!! I would give my residual hearing in an instant because as my little investigations have shown, a CI is about 100% better than a hearing aid. The only hearing (without the hearing aid in) I would be giving up is:
-hearing the water hit my ear in the shower
-myself humming with my hands over my ears
-an MP3 player on Volume 30 (maximum volume setting-I can barely hear it)
So I wouldn't be losing anything really except the title of having a hearing loss.
Thank you for the tip on how to turn off the FM microphone but keep the CI one on. It has made school life a lot more tolerable than before : D

This is a video of Nichole's Mapping

And...this is Dean's blog announcing Nichole's participation in the study:

Nichole has been participating in two different research programs. The first is at MIT. They are testing Nichole's hearing ability with her Cochlear Implant. There are a number of different tests they are running. Some deal with her ability to identify vowels, some consonants, others the pitch of musical notes. The main researcher, Ray Goldworthy, who has a single CI himself, is eventually hoping to modify maps to allow CI users to hear better in vaious situations. he even spent some time in Australia at Cochelar learning more about their processors.

The second study is taking place at Northeastern University. Dr. Ying-Yee Kong is the principal investigator on this study, which is looking at people with one CI and one Hearing Aid (HA). They are running similar tests as those done at MIT, but with some variations, including testing in noise. They are interested in testing Nichole, because they want to see how she performs using one CI and one HA, then retest her after her second CI is fully "integrated". The results of this testing will possibly help other single CI users decide if going bilateral is better or if keeping one HA and one CI is best.

Nichole has enjoyed participating in both studies. She likes the idea that all this testing (and it is quite tiring - I know because I enrolled in it as a normal hearing study subject to help out), will eventually help other people struggling with the decision of going bilateral, or staying with a single CI. In addition, she is earning money, which for a 16 year old approaching her coveted driver's license, is a big deal :-), especially at $4 for a gallon of gas.

In addition to the main thrust of the NU study, Dr. Kong recorded Nichole speaking in order to determine if her speech generation improves, declines or stays the same after going bilateral. Here is a 3.5 minute long MP3 sound recording of Nichole telling a story. They gave her just the starting point, and told her to make up a story on the fly (thus some "ums" as she pauses to figure out where to take the story next).

I thought some parents of smaller kids would be interested in hearing how Nichole speaks. Keep in mind that she was not diagnosed with a hearing loss (70dB flat - moderate-severe bilateral sensori-neural hearing impairment) until 18 months old, and only spoke a handful of words to that point. She started wearing hearing aids at 20 months. We did Auditory Verbal therapy until she was 3 years old (though of course we continued doing it at home). Her hearing stayed at that level until her teenage years, when it started getting worse. She was at about a 100dB loss when she/we decided to get her first implant (right side) at age 15 (last year). This recording was made on July 2, 2008, just before her surgery to implant her left ear.Of course, I understand Nichole perfectly, but I would really like to hear from other parents to see what they think of her speech. Does she sound "normal" to you, or can you tell she has a hearing problem? I am too close to tell. Any comments?
(To listen to Nichole speaking click on Dean's Blog and download audiofile)

Note: I'm back from Dublin. My kids hugged and kissed me BEFORE asking for presents...We're definitely making progress.

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