CI Circle Weekly Round-up May 22-29, 2009

Your editors apologize for the lack of posts in recent weeks (we've been busy getting teeth pulled, chaperoning dances, publishing information booklets and remodeling bathrooms.) So this week we're offering a round-up of discussion topics that came up on the CI Circle Yahoo discussion group for parents of children with cochlear implants. Despite the Memorial Day holiday in the US, the CI circle was quite active with about 180 posts. Topics included:

Finding a lost rechargeable battery
A parent wondered how to go about finding an expensive rechargeable CI battery lost at a playground. She later reported that she solved her own problem: "We posted a photo of the battery and a reward and 4 days later, a gentleman called saying that his grandson had found it!"

Auditory-Verbal Therapy history
A parent from Europe who is putting together some information asked about the history of Auditory-Verbal Therapy. A veteran A-V parent replied that the approach began quite a few years ago and was known as Acoupedic approach and the Unisensory approach (1930s?). These were developed by Helen Hulick Beebe (born in 1909) and Doreen Pollack (same generation.) Daniel Ling (of the Ling 5 or 6 sound test) was slightly younger (born 1926). Some of their first followers included Warren Estabrooks, Judith Marlowe, Judy Simser, Jim and Lea Watson and others.

The Freedom Mini BTE
A parent of an infant asked about the Freedom mini BTE from Cochlear. This on-the-ear option is smaller than the standard size, but does not allow one to plug in any accessories or monitoring headphones. A parent replied their young child's audiologist activated the light option to help them tell if the processor is working. Another parent mentioned that even though one can not plug in an FM receiver to the mini BTE controller, it is possible to use a Phonak MyLink neckloop-type FM. The discussion evolved to include the pros of the Advanced Bionics body-worn Platinum processor (advantages are ruggedness and only having one thing on the head.)

A Mum Moment
(no paraphrasing here, just the post in its entirety)

"oh have to share this mum moment - my "baby" is almost 17 and in year 11. His school has a combined year 11/12 formal and as part of that they have dance tuition with someone from outside the school coming in to teach them. It is good they do progressive style dances with everyone involved, but they use modern music so the kids enjoy the experience with music relevant to them. Sooo because I am in admin at his school, I wandered over to the gym today during dance tuition. There was my boy in the thick of it doing an awesome job following the guy giving instructions, he did have a mic and basic kind of soundfield set up I think it was, but he was giving counts over the top of the music. If you scanned the room, you wouldn't have picked him but for the fact he is one of the tallest kids there. It was a special moment. To be followed by the special moment of the actual formal where he has asked one of the girls in his most of his classes and she said yes. In fact she said yes and then did the Toyota "oh what a feeling" jump as she walked away LOL"

Implant technology
A parent in the midst of choosing a cochlear implant brand for her child wondered how many output circuits the Med El implant has. The answer is 24.

New Cochlear device on the horizon?
Parents discussed what they have heard about new products coming from Cochlear. One parent says her child received a new internal device that is smaller. Another parent said they heard that clinical trials are under way in children in Europe and Canada for this new device. Parents reported hearing that there is also a new BTE processor coming from Cochlear that its called the Mulberry, though this is most likely a temporary name and not what it will be called when released. Rumored features of this new BTE include an integrated FM receiver, being truly waterproof as opposed to water-resistant, being small, and having a remote control. It will also supposedly come in "iPod-like colors." The new processor might be available later in the year.

Trying to buy an FM
A parent wants to buy an FM system for her child for home use (the child has one at school, but it belongs to the school and remains at school.) She recounted the difficulty in finding someone to sell it to her that would take her insurance. Phonak does not sell directly to parents, only to audiologists and schools. The parent could not find any durable medical equipment dealers in Pennsylvania that will purchase it for her and bill her insurance. Phonak: Please make your FM products more available to parents!!!

Using a CI and Hearing Aid together
A parent of a school-age child who currently uses hearing aids but will be getting one implant wondered if there are children who use a CI and hearing aid together. Indeed there are, as several replied. This is called "bimodal hearing" and has advantages over just hearing with a CI in one ear alone.

Swimming with a CI
A family that recently had a pool installed asked for details about how children are able to swim and hear while wearing their CI processor. Several people responded that their children enjoy this very much and that it is fairly easy and safe to do. Ingredients include a BTE processor that uses a rechargeable battery (disposable batteries require air to run and may stop working temporarily), a waterproof baggie such as the aLoksak or a large latex balloon, and a lycra or silicone swim cap of sufficient size.
Video of swimming and hearing with an implant processor

Rechargeable 675 batteries
The swimming discussion morphed into a discussion of how to use 675-type Zinc-Air batteries in a nearly airless environment (like the Aloksak baggie.) A parent found that there are now some rechargeable 675-size hearing aid batteries, but no one has reported trying them yet. Sources for the rechargeable batteries are www.batteryjac.com (the same Solar battery, made in Botswana (a sunny place), is also available through Amazon.com) and microbattery.com (675 charger coming soon.)

Happy Summer!
from the CI Circle News editors

If you are the parent of a child with (cochlear implant(s) or if your child is about to get (a) cochlear implant(s), join the dicussion at http://groups.yahoo.com/group/cicircle There is an individual email option, digest option, and no email option (read posts via yahoo website.) Additional information and resources viewable by group members and non-members alike can be found at http://www.cicircle.org

Cochlear Americas Celebration Anaheim March 2009

First up the picture above is the pattern of the carpet that the conference was held - I thought they chose it on purpose, apparently they didn't notice until after we all got there! Cool or what???

WOW what a whirlwind! I travelled from Down Under to Anaheim California for the conference and to meet a very dear friend of mine for the first time.

The Cochlear Celebration Conference was of course put on my Cochlear and was for recipients of the Cochlear brand cochlear implant. There 600 people attending the conference with a 60/40 split between adult recipients and parents of children who were recipients.

While we "grown ups" were attending the sessions at the conference, there was child-care for the kids and "Teen Scene" for the older group. We later found out that the 20 finalists from which the 5 Graeme Clark Scholarship winners were chosen, actually spent some time with the Teen Scene group. What a brilliant idea, what amazing role models for these teens to see - older successful cochlear implantees out there doing their thing in the world!!

When we had break times or other social events, it was so heart warming to see the children and all the friends they had made at the conference. Many of these kids attend mainstream school and so may not get to see a lot of other children with cochlear implants - it was so neat to see the friendships developing and seeing the hugs and tears as they said their goodbyes to each other on the last morning.

The conference was jam packed with information and events. The opening was incredibly moving and brought many of us to tears, even us "more experienced veterans" of the journey. Kassie DePaiva who is a singer and actress of "One Life to Live" spoke at the opening as did her son JQ. They were brilliant and Kassie moved us to tears as she spoke from the heart and as fellow mothers our hearts soooo heard her. Mind you she had us in tears before she began her "official presentation". Her presentation followed a presentation by Jim Patrick (Cochlear's Chief Scientist). When Kassie stepped up on the stage, she asked Jim to come back on to the stage. At which point, she wrapped her arms around him and gave him a big hug and said "this is from all the mommas out there" - well of course we were all bawling our eyes out by then!!!

Rachel Chaikof shot a lot of video at the opening and at the conference so go visit her site to read more and see more photos.

The seminar presentations covered a range of topics including

• Bilateral implantation
• Music Enjoyment with a cochlear implant
• Raising a child with a hearing loss
• Assistive Listening Devices and how they can help you
• Enjoy More Freedom (understanding the technology and the options)
• How'd they do that (a virtual tour of how the Nucleus Freedom Cochlear Implants and processors are made)
• Path to School Success
• Poised for Greatness (a panel of exceptional young adults telling their stories)
• Future technology enhancements
• Hearing Loss and Relationships
• Adult Rehab - tips and tools

The sessions were all very informative and there was a great range of options to suit both parents and adult users.

The morning expo was filled with representatives across many organisations. Many adults took advantage of being able to try some assistive listening devices with support from the companies that provide them. Kassie gave up her time to both meet and have her photograph taken, and sign autographs for participants. She is a wonderfully warm person who truly was just another parent, yet used her acting role to connect with people. She gave up a lot of her time in support of the conference and Cochlear.

Perhaps the other thing that I truly noticed most was the accessibility of the senior management of Cochlear for the duration of the conference. Chris Smith (President of Cochlear Americas), Chris Roberts (Cochlear's Global CEO) and Jim Patrick (Cochlear's Chief Scientist) were available through out the conference speaking to adults and parents and having a multitude of photos taken with children! They were there for all the social events including the Volunteers Reception at The Aquarium of the Pacific and the Celebration Private Party at Disneyland. They didn't just put in an appearance and head home, they stayed for the duration of the events and were truly just part of the crowd. They certainly showed a genuine concern and warmth and welcoming of the parntership between user and the company that makes them.

Naomi with Dr Chris Roberts (Global CEO of Cochlear) and Jim Patrick (Cochlear's Chief Scientist).

The event was amazing. It was so well organised and co-ordinated and the ground staff for Cochlear that ran this show, worked tirelessly throughout the conference. It was really one of those "preaching to the choir" type moments, where everyone that was there had in some way seen the amazing change a cochlear implant had made in the life of another personh. It was truly a celebration of the good that come to the lives of many people - many adults described it as "getting my life back" where hearing loss had isolated them, robbed them of their confidence and their ability to maintain their employment. Their implants had given them all that back and so much more. It was great to hear so many positive stories from the adults that can describe to us what it is like for them.

As a veteran mother, I was just blown away by how well these young children that are being bilaterally implanted at such a young age, are doing. Their speech and language was amazing as was their ability to cope in noisy situations like large conference exhibition halls, crowded hallways or large dining rooms. Truly they barely even battered an eyelid with all that noise - it was just incredible. I'm sure that other manufacturers have similar events for their recipients and based on my experiences at the Cochlear Celebration I would encourage you to go - you learn heaps, meet a whole new group of friends and contacts and really just have your spirits lifted.

Oh and of course there was the CI Circle Lunch - more on that in another post, but we did manage to "rope in" a couple of mothers were not on CI Circle (yet) but were keen to be. Through out the weekend we had plenty of time to "plug" our group and our site and you would be surprised how many didn't know about us. Well at the top they do now - I told Chris Roberts (Global CEO) about our site one night and he looked it up later that night. The next day he told me how impressed he was by the webpage and resources it has - so go team!!!!

When they need new devices.......

Having two deaf children who use cochlear implants to hear, I know that there will likely come a day when they need their internal devices replaced.
We all hope the devices will hold out until they are much older and have children of their own, but what if they need new devices sooner? I used to ask myself this question when it recently became a reality for my son.

You worry as a parent that you’ll get a call one day from school telling you that your child’s cochlear implant stopped working after he/she took a small bump on the head with a basketball during recess...
You worry as a parent that your child will wake one day and hear mostly static or odd noises. You frantically change all cables and batteries, anything you can to make it better but it doesn’t help, meaning the device itself is possibly failing…

This is exactly what Rachel Chaikof experienced when her internal device began malfunctioning. Here is some of that story found in more detail as told by mom Melissa by clicking HERE

“In March 2003, Rachel came to my room at 7:15 in the morning very agitated, saying that she put on her processor and heard only loud, painful clashing sounds. She had already changed the batteries and cables. I quickly got out her spare processor. She put that on and burst into tears, saying that it didn’t help. This was different from anything we had ever experienced before, and we all knew without saying it that she likely was experiencing a failure of her implant.”

What happened next? Rachel had surgery six days later to replace that device. However, like a true champion, she attended school in silence until the day of her surgery. This post was made by Rachel herself, a couple of weeks following that surgery to replace the failing device.

“Thursday, April 10, 2003
I can hear again!
This afternoon, today, I was sitting in the audiology room, waiting eagerly for my hook up so I could hear again. My audiologist handed me the Sprint processor, the body worn one, to start out with for mapping. I put the microphone and the magnet on my head. My audiologist started to press the keys on the keyboard to map me. I heard some beeps. She asked me if I could hear them or not. I would either say, “Yes, I can” or “No, I don’t hear anything.” My audiologist turned the processor on and I heard some sounds, but not too well. All I heard was mumbling sounds and it sounded soft. My audiologist raised it a little and it sounded better but still mumbling and hard to understand.”
“On the way home, I asked my mom to test me by saying one word to see if I could understand what she was saying. She said some words and at most of the time I was able to understand without any problem. My brother even tried saying ‘hamburger’ while he was in the back of the car, and I was able to get it.”
You can find more from Rachel on this subject also on her blog at:
Cochlear Implant Online


Rachel has actually had two device failures. If you continue to read more of her story from her site you’ll read that the second time around after her device failure, she required more intensive audiological intervention. Today however, she is happy and hearing well with those bilateral cochlear implants at age 22. She’s presented at events and spoken around the world about how grateful she is to have the opportunity to hear with her cochlear implants.

Our situation was a little different. My son needed to have a new device inserted recently because he developed a very rare and hard to conquer infection. In fact, we went months not really certain what was causing his intermittent pain. He could hear very well and heard no strange noises to lead us to believe that his issues were with the device itself. Finally he began showing other symptoms of infection and when several types and courses of antibiotics didn’t work, he had it removed. Four months later he had not just one cochlear implant inserted but became bilateral also.

My questions were: Will he ever hear as well as he did before he had his first device removed? How long will it take to retrain him to understand speech? After four months will they be able to get the electrodes back in?
You may notice these concerns are far different than before with his first cochlear implant surgery. Having been thru the actual surgery before, I felt more comfortable with that part of it and knew the benefits of having the cochlear implants and hearing anything were outweighing my uncertainties of just how well he’ll hear. At this point I was just hoping that the sound he might access be enough to aid his speech reading.

So I for one can take comfort in reading about those who have been thru this before like Rachel. I am finding like with Rachel’s case, my son is quickly picking up on learning to listen/hear much quicker than I anticipated. He too, could already do some repeating of simple sounds before we left the first mapping session. He’s only four days out now and can hear things like music (as long as I tell him what song is playing), he can hear me in another room sometimes, and he is beginning to understand some speech and is inconsistently turning to his name. He walks around saying “I can’t believe I can hear!” He had been used to the silence since we needed to wait four months before reimplanting his ear that was infected. Most of the time, when these kids are in need of a new device, it may be unfortunate and even unpredictable. But in many cases, it’s not like starting completely over, they have that experience behind them now and things usually move along where before, they sometimes have no prior experience to sound.

Here is my son talking about his truck he customized, while I do a quick listening check with him, covering my mouth to see if he can actually hear and reproduce the sounds I make. He has enough access four days out to aid in his speech reading, just as I had hoped. We are standing on the bridge now between needing visuals (speech reading) and being able to hear without visuals. There are no guarantees that he will be able to keep this device, should his infection return, but if he does, we have no doubt that after his auditory training he will be hearing as well if not better now that he’s bilateral, than he did before. Rachel’s story is just one from cicircle that I take comfort in, knowing that we could possibly follow the same path having bumps in the road we must overcome.


(We decided to clip the processor to his shirt rather than tape it to his ear on the side that had previously been infected, so we can watch for redness and itching. That's why you'll see it with a longer cord vs. the regular BTE on the opposite ear.)

He will begin Auditory Therapy next week and is expected to need that for about a month with weekly one-hour sessions. Typically we would be doing Auditory Verbal Therapy but he doesn’t need the speech part of it, he only needs the auditory training, the learning to listen again. I think there are many cases where parents want to send their kids to a listening boot camp (even if they have typically hearing children).



**these infections are extremely rare and in fact I found only one other mom on cicircle with this experience, she has helped me tremendously! Even our doctor had not seen a case like this before. My daughter also uses bilateral cochlear implants and has never had any issues to date. I personally feel that cochlear implants have improved my children's lives and they both are very grateful to have the opportunity to hear. Despite our recent bump in the road, I would not have changed my decisions in regards to allowing them to have that opportunity **


Val Blakely
Cicircle News Staff