Thursday, July 3, 2008

Participating in CI/HA research at MIT and Northeastern

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?

6 comments:

Lydia said...

so glad to hear you are doing these studies, Nichole! They are so helpful for future CI users! My son has done some studies at the University of Wisconsin and really enjoyed them. They gave him lots of prizes and toys (he was 7, 8, and 9 then).

elizabeth said...

This is a great blog! I hope you'll consider adding it to the aggregator at Deaf Village (www.deafvillage.com) -- we'd love to have you as part of our community!

Anonymous said...

Nichole sounds to me as an happy and beautifull girl..
Nichole sounds obviously happy with her very interesting and exciting life, and she sounds happy for being where she is today and for the (difficult) choices she has done, and for the (very difficult) choices that her parents have done for her (parent's pride).
Nichole sounds to me as a "normal" teenager that love and is loved by her parents.

cheers!! ;-)

Michelangelo Merisi

Ops. I almost forget!! My older son wears cool eyeglasses and a single CI.. My youngest daughter is just a princess..

Christian's Mommy said...

The studies that you are participating in now Nichole will directly benefit my little guy! Christian is 18 months old and has a CI in his right ear. He's been activated for 2 months. THANK YOU!

BTW, your speech is amazing :)

Miss Kat's Parents said...

I can tell that she has a hearing loss, but barely and only because my child has a hearing loss and I am very aware and always listening for it.

Counsin Bonnie said...

I found that I could easily understand every word Nicole said, even with my radio playing NPR in the background. I could transcribe her words with 100% accuracy. She does have a slight "accent", but not one that is easy to place. It sounds as though it could be from being hard of hearing, or from a slight speech impediment. Certainly something that a listener would register, but not at all difficult to understand or unpleasant to hear. She definitely has a bit of a New England Yankee accent too!