Cochlear Implant HELP Interview with Stuart McNaughton

Stuart McNaughton is the author of "He Is Not Me," a book about his life as a deaf child and a hearing adult after he chose a cochlear implant. Here is my disclaimer. I just purchased the book, so I have not yet had time to read it, but I will likely come back to give my thoughts when I am done. Implanted adults are giving the book rave reviews.

Click the link below to read the interview.

Cochlear Implant HELP Interview with Stuart McNaughton

Many things that Stuart said in the interview really resonated with me. Also, what his mother said struck a chord. Below is the direct quote from the interview.

What do you think your parents’ advice would be to the parents of deaf children today?

I am laughing at this very question.  In fact, I just called my parents and my mother answered the phone.  I posed this question to her, and this is what she said: get lots of advice, do the research, but don’t delay.  I guess this kind of ties in with the Author’s Message on the He Is Not Me website, in which I state that I honestly didn’t start living until I was twenty-three, the day I got my cochlear implant.

That is exactly what many professionals and implant patients told us when we started the process. We did our best to follow that advice, and I firmly believe it was golden. It's vitally important for a child to be implanted as early as possible, if that is the path that the parents intend to take. Time is of the essence. Today we wish we had known sooner that Audrena was deaf. But as it is, we are thrilled with the progress she has made, and we know in our hearts that we made the right decision for her.

Stuart's book is available via Kindle edition, but you do not need a Kindle to purchase and read it. You can download the Kindle app for PC, or the app for the android phone/tablet. Purchase "He Is Not Me" here. You can also visit Stuart's website or Facebook page.

Another Surgery Down. One More to Go!

Audrena had surgery last Thursday. It was a long night in the hotel prior to surgery, as Audrena kept waking up for a drink. She cried, "More drink," repeatedly for at least an hour. It broke our hearts not to be able to give her anything. Then, after she calmed down, she tossed and turned all night, finally settling into a good sleep at 4:00 a.m. Our alarm went off at 4:30, so it was a short night for Mommy & Daddy.

We arrived at Boys Town at 6:00 a.m. for surgery. She had a deep pocket recession in her ear drum that needed to be fixed, and she needed a tube. Dr. L. did both, as well as a cartilage graft behind where the pocket had been to help support the ear drum. He was able to save her from the radiation exposure of another CT scan by doing a visual inspection to make sure the cholesteatoma had not returned. We received a wonderful update from the OR nurse...NO cholesteatoma! I hadn't quite realized how stressed I was about the possibility of another delay until we heard those words. It was like a huge weight lifted from our shoulders.

After surgery, Dr. L. came into the room with a handful of photos. He showed us exactly what he had done from start to finish. It had all been accomplished through the ear canal, so she did not have an external incision. He said we should be able to proceed with the second implant in 6-8 weeks! Music to our ears!

They brought Audrena to us about 45 minutes later. She was madder than a hornet at the iv and kept holding her arm up to the nurse like, "Take it off!" After we got her comfortable, she fell asleep. It was a long afternoon as we took turns holding her while she caught up on her rest after a very sleepless night. By the time we could consider going home, we were both too exhausted to make the drive. Instead, we booked a hotel room. Thank goodness Grandma & Grandpa planned to keep Reyana and Kelton another night!

Audrena finally woke up, starving and thirsty! We gave her some crackers and apple juice, which she kept down. Then it was time to be released. Surgery number four down, and hopefully just one more to go!

Here are a few photos.

Before surgery. She put her coat on and tried to escape!

The play room is wonderful for keeping kids occupied before surgery!

Relaxing with a snack and a drink at the hotel. She was feeling pretty good, and she felt even better after a bath!

New Developments in Cochlear Implant Programming

On the eve of yet another ear surgery, which will hopefully pave the way for Audrena to become a bilaterial cochlear implant recipient, I am excited to have stumbled upon this article about a new implant programming technique developed at Vanderbilt University. I am always so interested to learn about new technology regarding cochlear implants! This one sounds promising. Check out the article using the link below!

 High Fidelity: Cochlear implant users report dramatically better hearing with new Vanderbilt process

Puppies and birthdays!

Grandma and Grandpa have puppies at their house, five of them to be exact. The kids LOVE the puppies. Audrena gets so excited, but she doesn't quite know what to do with them. She wants to hold them, but then she doesn't want to hold them. She picks them up, and she puts them down. She pets them, and she frets over them. If they snuggle up on top of each other like puppies do, she wants them separated. It's like she thinks one is hurting the other. So she tells them, "No! Git!" Then she gently pushes the top one off of the other. If we put the puppies away, she asks for them to be "ou," which is "out" to her (she still drops the t). It's fun to watch her try to figure out what exactly to do with them.

Last weekend, we went to a birthday party. During the fun of the party, we played with balloons. Audrena mastered clapping and exclaiming, "Yay!" I could just clap and shout "yay" as well because I just love it when she adds to her vocabulary, and it was another new word for us!

Audrena also pushes/pulls on us and says, "Git," which to her is "get," as in "get that," or "get up." She brought me a baby doll a few nights ago and said "baby." Up until now, that was part of her receptive language, but she had not actually said it. Those spontaneous things are becoming more common. It's really great to see her blossoming!

Next weekend we are having Audrena's second birthday party. She has ear surgery next week, so we are unsure how she will actually feel on her birthday. It's hard to believe that last year at this time we still did not know for sure that she was deaf. Three ear surgeries and year later we will be celebrating her birthday and her growth--growth as a child, growth as an individual, growth in physical ability, growth in speech and language. I never could have dreamed we would be where we are now. It's amazing what a year can bring.

A Slight Change of Plans

Audrena saw the surgeon today. This was the "pre-op" appointment before the CT scan. He had been watching her ear drum because of negative pressure and retraction. Today he observed that her ear was full of fluid, and the ear drum issues remain. He plans to do surgery to insert a tube and a cartilage graft. During the surgery, he will inspect her ear to make sure the cholesteatoma has not returned. This way he will not have to subject her to the radiation of the CT scan. We knew it was a possibility that she would need a tube and a graft, but we were just hoping it wouldn't be necessary to put her through another surgery. Hopefully it will be an easy recovery for her! We will keep everyone updated as we go.

Happy Valentine's Day!

Randy picked up Audrena from daycare just after her speech session today. Our SLP reported that they read a book, and it said, "I love you." Audrena repeated back, "I love you!" Happy Valentine's Day!

Bluetooth?

When we first found out that Audrena was deaf and we were still getting used to the idea of cochlear implants, we were talking about it with our friends, Mike and Mari. Mike said something about all the different kinds of technology that people use these days, and people would probably just think Audrena was wearing something like a bluetooth headpiece. I kind of remember just nodding and thinking that maybe there was something to that. Well, as it turns out, I have heard a lot of discussion between CI recipients regarding what random strangers say to them about their implants. Many of them have said that the most common question they get is whether that is some new kind of bluetooth headset! It looks like Mike had the right idea.

Sneak Peek at New Processors from AB and Cochlear

Once again, CochlearImplantHELP.com has pulled through with a spy photo of new technology. Follow the link for a sneak peek of Cochlear's newest processor. I'm amazed at how tiny it seems to be, and I can't wait to see it in person. For those who are not familiar with the different cochlear implant manufacturers, Audrena has an Advanced Bionics implant, so this link is NOT a processor for her implant. It is for the new Cochlear brand implant processor. Med-El is the third manufacturer approved in the US. All three implant companies give excellent results, so it's really a matter of choice and preference for implant recipients or their parents.

CochlearImplantHELP.com Photo of New Cochlear Processor

And of course, I can't show off Cochlear's technology without also showcasing Advanced Bionics because that is what Audrena has! AB is now making the new processor available to anyone receiving an implant, even though it will be released this summer. This means that Audrena will be able to get this new technology for both ears once she has her bilateral surgery! We are beyond excited about it! She currently has two Neptune processors, and we intend to get her two of the new behind-the-ear processors. Then she will have the latest technology and the option of wearing the processor on her ear like a hearing aid, or off the ear as she does now with the body-worn Neptune. The technological capabilities of this new processor are amazing!

Advanced Bionics New Behind-The-Ear Processor 2013

Here is a link back to a blog post I wrote a few months ago when Med-El announced its new processor, the RONDO.

http://audrenasears.blogspot.com/2012/11/interesting-things-are-on-horizon.html

Howard Samuels Interviews AB Senior Executives

Check out this link for an interview by engineer Howard Samuels of CochlearImplantHELP.com with Advanced Bionics Senior Executives. I fully admit that I have not taken time to read the entire interview, but I did skip to section 5 about technology and liked what I saw.
CochlearImplantHELP.com Interview with Advanced Bionics Senior Executives

A Change in the Team

I had hoped to not see this day for a couple years, but I'm sad to say we are losing our much-loved Speech-Language Pathologist. She has helped Audrena grow tremendously in the past several months. We wish her the best in the future, and we will greatly miss her. Our SD School for the Deaf Outreach Team is currently trying to get someone else lined up. They didn't fail us before, and I'm sure they will find someone again who will fit in nicely as part of Audrena's team. Those who know me well can testify that I am a worrier, and I'll likely be worried until sometime next month when we hopefully get settled in with the new SLP.

In the meantime, Audrena has learned a couple of new words. She now says "eat" and pairs it with "more" to request more food. She brings me things from the cabinet, or she points at food on the kitchen counter and says, "More eat!" She also pinches her nose and says, "Pew!" Daddy taught her that one while he changed her diaper. She also says "zip" when we zip her coat, and occasionally she says "out" when she wants out of her booster seat at the dinner table. Overall, Audrena is just getting better with using her words to communicate her needs. She has figured out that words have meaning, and using them will get a response from us.

In talking with our SLP, she told me that no matter what happens, Audrena will be ok. She has already exceeded her IFSP goals with the amount of words she is using, and we are only halfway through the 6 months. She has also exceeded everyone's expectations at this point. I know that Audrena is doing fine, but it's hard to lose a valued member of Audrena's team. Hopefully her replacement will work out perfectly as well.

Also this week we have an appointment with Dr. L. to make sure Audrena is ready for the CT scan a couple weeks from now. I am starting to get a little nervous. I so badly want this scan to be clear so that she can have her second CI!