Programming Changes

I'm excited to say that we are transitioning into doing Audrena's programming here at USD's clinic, rather than driving more than 2 hours each way to Boys Town. While we love Boys Town, it's just more convenient to do things here. We already have a standing appointment every week for Aural Rehabilitation, so Audrena gets speech therapy and audiology services as needed. I have said it many times before, and I'll say it again. USD is very fortunate to have Dr. M (whom we just call by her first name, J.). She is an asset to this entire area because we just don't have a wealth of people who know cochlear implants, and the icing on the cake is that she is just great.

Last week we met with J. to get Audrena's new ear mold for her hearing aid, and we had hoped to do some work in the sound booth. Audrena is not getting the /s/ ("sssss"--think "snake"), so we knew she needed some adjustments to her programming in the high frequencies. As it turned out, Audrena was ready for a nap and in no mood to be in the booth. J. did some other nerve measurements, called NRIs, and because Audrena wouldn't cooperate for any other testing, she made adjustments based on those. When Boys Town had done their threshold testing in the operating room, they told us that electrodes 15 & 16 may or may not be useable. So because those electrodes handle the high frequencies like the /s/, and because they still were not testing good for J., she changed the programming to turn them off. As she explained, that would shift those high frequencies down to electrode 14. This would hopefully give Audrena access to those sounds that she was not previously hearing. She also made some changes to Audrena's M levels, which doesn't mean much to those who don't understand implants.

Over the weekend, we watched to see if Audrena seemed to be hearing better, specifically the /s/. I got responses from her just a couple times, and only in really quiet situations. So we probably will need to keep working on things. J. wants to see Audrena when she is sleeping to perform some testing on a reflex in her inner ear. It's hard for me to explain because, while I understand the basics, it's still a bit above my head. Basically, there is a reflex that happens in the ear in response to sound, and that reflex is pretty golden for programming CIs for a small child. It corresponds almost exactly to where the levels need to be set. I'm not sure when we'll attempt that, but I do know Audrena will have to be really tired. We would have to rock her to sleep and hope she stayed asleep when they stick the piece in her ear. It was a challenge for the first ABR, and she's older now, so it will be interesting. We'll see what J. thinks on Thursday and go from there.

In the meantime, "uh oh" and "more" are regular parts of Audrena's vocabulary now. She also gets really excited to see dogs and barks in response. Her "woof woof" is not very pronounced yet, but she's trying. She has begun to vary loudness and pitch as well, which is great. K. is starting to use the speech hoop now for discrimination in therapy sessions since Audrena was doing so well without it.

I also just got word from surgery scheduling that the CT scan is scheduled for March 7, 2013. Let's hope for an all-clear! We can't wait till Audrena can have two "ears."

"No no no no, Mama!"

Here is a video clip of Audrena with her new favorite thing to say. She loves to shake her finger at us and say, "No no no no!" You'll see in the video that at this point it still comes out as "Mo mo mo mo." This isn't the most clear video in terms of how things sounded, but the other clips I have are a poorer cell phone quality, so I'm using this one for the blog. Her "Mama" at the end doesn't sound that much different from the "mo mo" in this particular clip, but others are better. We were so excited to get some video of Audrena talking because normally when the camera comes out, she stops performing! I love her little giggle before she says it.

Audrena has also been using "more" very regularly now, and also "uh oh" fairly regularly. What a joy to hear her little voice forming words!

Way to go, Toys R Us!

I was browsing The Great Big Toys R Us Book and noticed something neat. On page 31, they feature a boy with a cochlear implant next to the Crayola easels. Way to go! Now if we could just see more companies featuring CI kids, Down Syndrome kids, kids in wheelchairs, you name it. I would love to see it!

Interesting things are on the horizon!

Med-El has come out with a unit called the RONDO that combines the processor with the mic and headpiece. It eliminates the need for cords or anything worn on the ear. I have my questions. The first one being wouldn't a person need a stronger magnet, thus risking skin breakdown? I think it wouldn't be great for a toddler or child, as there is a greater risk of losing the entire processor. However, with that being said, I think great things are on the horizon for implant users. I could see this being a fantastic option for an adult. It's almost a complete "freedom." I foresee the other companies eventually following suit to develop a similar product, as they are always competing to give their patients the best technology. Here is a link from the Cochlear Implant HELP website to the information on the RONDO.

http://cochlearimplanthelp.com/2012/11/08/med-el-announces-the-rondo-single-unit-processor/

She has a sucker stuck in her hair.

I can't believe I forgot to share this story when it happened! Last month, my sister came to spend the day with the kids. She took Kelton and Audrena out to lunch, and after they picked Reyana up from school they went to a carnival in the park. Then, since she had my van, they picked me up from work.

On our way home, we stopped at the grocery store for some supper items. Reyana, Kelton, and Audrena were all squished into the race car shopping cart. As I was paying for our groceries, Audrena was squirming around in her seat. Her implanted side was facing away from the cashier, a high school-aged boy. As she turned very briefly, he caught a glimpse and said to me, "Ummmm, she has a sucker stuck in her hair."

I explained, "Oh, that's not a sucker. It's a cochlear implant. She is deaf, and it allows her to hear." He had this mortified look on his face, and by that time Kelton had climbed out of the cart and bolted for the door. I took off to catch him, and Darci stayed with the girls as she paid for her groceries. I could see her showing him the different components of the implant and explaining how it works.

She and the girls caught up to us, and as we all got into the van we were laughing so hard that the tears were just pouring out of our eyes! We couldn't wait to get home and tell Randy the story. That poor cashier was so embarrassed, but we had the opportunity to educate him a bit about what a cochlear implant does. There are three other people in town (that we know about anyway) that have them. Now he will know what it is when he sees one.

A sucker. It does kind of look like that at a glance. Audrena was wearing her "tropical sea" colored headpiece, and the cord is white. So I have hung onto that sucker story because some days if I don't laugh I will cry. It's better to laugh, and that cashier gave me a good reason to. Thankfully the bad days are getting fewer and farther between, and the laughter is taking over. And what can I say? I love my little red-headed, four-eyed child with a hearing aid and a sucker stuck in her hair!

30 Years of Cochlear Implants!

A friend pointed this article out to me, and of course I had to pass it on.

http://www.foxnews.com/health/2012/11/05/cochlear-implant-celebrates-30th-anniversary/

The part of the article that surprised me was this. "Weber said about 52,000 Americans have been implanted, but the number of Americans who can actually benefit from an implant is around 1 million."

Had Audrena's left side implant not been delayed, she would have been somewhere between Boys Town's 495-499th implant. But there are 1 million other Americans who could benefit from a cochlear implant. Now, that's not to say that all of those 1 million people should be implanted. We all know that, for various cultural and lifestyle reasons, they're not for everyone. The statistic amazed me, though. 52,000 is such a small number in comparison to 1 million, and it's a small number over a 30 year time frame!