Life is Bliss - Lily's Cochlear Implant Journey

Audiology Report - 18 months post implants

Here are the highlights from our latest audiology visit in November. 

Results from today's testing indicated speech awareness thresholds (SATs) at 25db HL for the right side and 30 dB HL for the left side. Additionally, speech recognition thresholds (SRTs) were obtained at 20 dB HL for the right ear and at 20-25 dB HL for the left ear.  In the bilateral condition, an SRT was obtained at 20dB HL.  (For the audiologists that read this blog, we're always open to suggestions on how to make this better)

Responses to narrowband noise were obtained today at 30 dB HL and at 35 dBHL with the left processor.  Lily appeared to tire of testing before a more complete audiogram could be obtained.   An audiogram done in May was consistent with these findings. 

The NU-Chips test was administered.  Right CI only - 14/15 - 93%, Left CI only - 100%, Bilateral CIs 14/15 (93%).  The two Lily missed were comb and she touched ham instead of hand.   

Modifications to the Map:  Lily's maps have been stable for quite some time. At this visit, the T and M levels were globally increased approximately 5 cu's on both sides. 

COMMENTS:    Lily continues to make exceptional progress with her cochlear implants.  She is now able to participate in closed-set speech perception tasks. On the NU-CHIPS, which is a task that required Lily to identify words with the same number of syllables, similar vowel and varying consonant, she scored 93%-100%  Lily is ready for a more difficult closed-set task at her next appointment. 

Direct Hit

Saturday night we went to a party where Lily was the unwilling recipient of a drink being dropped on her head (and her headpieces). We quickly sprung to the rescue to dry them off and apparently all are working as designed. Whew!

How do People Choose a Cochlear Implant?

One of the interesting pieces of research we looked at during our AB Mentor Training was how people choose a Cochlear Implant.  What factors matter to people the most? 

Here are the results, from greatest to least important:

1)  Hearing Performance

2)  Reliability/Durability

3)  Manufacturer Support

4)  User Friendliness

5)  Aesthetics/Cosmetics

Advanced Bionics People

One of the amazing things about our Advanced Bionics Mentor training was meeting the staff and the other mentors that consisted of adult recipients and parents of kids with CIs.

The Staff - From the President on down, the staff was incredibly professional, knowledgeable and passionate.  They believed in what they were doing and were totally committed to helping people hear better. 

The AB President, Jeff Greiner, outlined AB's history, the challenges they faced and what the future may hold.  He spoke frankly about starting a implant device company with seven engineers in the early 90s and what the company had become today.  He described their intense focus on listening and sound quality which has resulted in superior performance.  His confidence in the AB product and staff was apparent  He had a CEO's confidence, yet said this nearly 20-year journey had made him humble. 

The rest of the staff, including those from the Bionic Ear Association, marketing, manufacturing, product development and others were equally as impressive.  They were all well trained, totally engaged and passionate about helping people hear better.  They could see the big picture.  Almost all of the staff were trained as audiologists and now serve as advocates, business managers, marketers, sales people, trainers, technical advisers, and product designers. 

Other Mentors - The other 40 people at the Mentor Training were adults and teens with Cochlear Implants and parents of kids with Cochlear Implants.    Most of the people there had been helping advise CI candidates for years and could clearly demonstrate how the AB CI had changed their lives so dramatically.  The passion in the room was contagious.  Many of them also had blogs.  Here are just a few.

Kids

http://elliottrocks.blogspot.com/

http://maxandclairesadventure.blogspot.com/

Adults

http://geocobb.blogspot.com/

http://cisoundsx2.blogspot.com/

We are so appreciative to Advanced Bionics for helping Lily to hear.  They realize, as do we, that our partnership with them is for a lifetime.  Now with Advanced Bionics being purchased by Sonova/Phonak, we think even more exciting things are ahead.  If we could only figure out how to purchase stock on the Swiss Stock exchange.  I think the outlook for Advanced Bionics is bright. 

Advanced Bionics Mentor Training

Lily's Dad and I are now official Advanced Bionics Mentors, after going out to Valencia, California and meeting the AB staff, touring the facility again and hearing why Advanced Bionics is the leading Cochlear Implant manufacturer in the world. 

We had previously committed ourselves to helping anyone on a CI journey, but hadn't really thought of ourselves as mentors or advocates on behalf of the AB brand, until we attended the recent training.  

What we understand now about Advanced Bionics is:

1) AB is first in total system reliability.  That means their internal device is over 99% reliable and their external processor has the lowest average 3-month failure rate of only less than 1%.  We've had no problems at all after 18 months of use.

2) AB has the best hearing performance with their:

• HiRes for the best hearing in noise, music and speech development.  And with HiRes 120 I think people are hearing even better, especially music.
• Auto Sound - You don't ever have to change the programs. You set it and forget it.  Even on the BWP, we set the controls and never move them.  The Input Dynamic Range (IDR)/Window is 80dbs, that is the widest of any implant, letting in the most sound possible.
• T-Mic for the most natural hearing and wireless connectivity.  We don't use the T-mic yet, but compared to a regular BTE mic, there are huge sound and usability advantages.  We love the off the ear Mic with the BWP which allows nothing on the ear, but still maintains the same language and listening advantages as the Harmony.  This is critical for a pre-language learner.  

3) Upgradeability without surgery - This was a big one when we made our choice. The internal device is so sophisticated, the software potential is tremendous.  Will Lily have to have another surgery in her lifetime?  I'm certain of it.  But who knows when and what that next iteration will be.  Hopefully it is 20+ years from now. 

4) Outstanding Service - We've had a great experience with the staff, but didn't really test out the service before we selected AB.  Now I would call the company if I was making a choice again and ask dozens of questions.  Also I can't testify to the customer service/technical support because we've never had to use it. That is a good testimony.

For me some of the new comparative studies done by independent centers around the world are a big reason I am excited by AB.  These studies demonstrate that the Advanced Bionics implant with some of its unique components is outperforming its competitors.  While we guessed that their sound performance was best when making this decision for Lily, now the research is confirming it  (citations and research available on request).

Very Thankful

We are so thankful this year for all the blessings we've been given.  Lily is thriving. She is talking, listening and is a very happy kid.  She says funny things, is sensitive and passionate.  She is a typical two year old, except we think she is brilliant, beautiful and hilarious.  So we are biased. 

We are thankful for all the support our family and friends (who are like our family too) have given us and all the love they give to Lily.  We are also thankful for all the professional support we've received this year.  Lily's team members have become our life long friends and we are glad to be on this journey with you.    

Happy Thanksgiving. 

Advanced Bionics - Great Stuff

Got back from our weekend trip to Advanced Bionics. What a fabulous time we had. We'll post more about the trip soon. In the meantime here's today's press release about the AB merger that will bring some amazing synergies and good stuff for AB families.

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Press release, Advanced Bionics - November 9, 2009
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ADVANCED BIONICS TO BE ACQUIRED BY SONOVA

-- Acquisition to expand Sonova Group’s position as a leader in hearing healthcare solutions --

VALENCIA, Calif., November 9, 2009 – Advanced Bionics (AB), the only U.S.-based manufacturer of cochlear implants (or “bionic ears”), announced today that it has entered into a definitive merger agreement with Sonova Holding AG, the world’s leading provider of hearing systems. Pending regulatory and shareholder approval, the transaction is expected to close within the next three months. The acquisition represents a strategic expansion into the area of cochlear implants for the Sonova Group, enabling the group to offer a comprehensive range of solutions for hearing loss.

“Sonova was attracted to our company for our advanced technology, commitment to our patients and our potential for expansion,” said Jeffrey Greiner, CEO of Advanced Bionics. “Not only will we continue to grow under the leadership of Sonova, but we have taken an enormous step toward ensuring that AB remains the industry’s performance leader, now and in the future. We are truly excited by the technological possibilities that this acquisition will offer our candidates and our recipients.”

The Sonova Group brings together Advanced Bionics, a global leader in cochlear implant manufacturing, and Phonak, a global provider of micro hearing systems. Both pioneers in their field, Advanced Bionics and Phonak have 75 years of combined experience in engineering innovative hearing solutions.

Like Phonak, AB will remain an independent division within the Sonova Group, but will share the elements that have been driving the success of AB’s new parent company over the last decade: global sales coverage, outstanding customer service, a global supply chain, and a dedication to innovation. The partnership will also provide:

Versatile, attractive, easy-to-use products
High-performance hearing devices
State-of-the-art acoustics and engineering
Industry-leading technology and performance innovations
Expanded international distribution
Lifelong commitment to patients’ needs
Attentive, caring customer service
Improved quality of life for patients
In addition, Phonak’s proven capabilities in the field of micro auditory devices will set the stage for AB to develop smaller, higher performing sound processors for patients across the globe. Combined, Sonova, Phonak and Advanced Bionics will provide the most comprehensive product line in the hearing healthcare industry, offering a full range of hearing options for those with mild-to-profound hearing loss.

For the acquisition, UBS Investment Bank acted as exclusive financial advisor and O'Melveny & Myers LLP acted as exclusive legal advisor to Advanced Bionics.

About Advanced Bionics
Advanced Bionics is a global leader in developing the most advanced cochlear implant systems in the world. Founded in 1993 and headquartered in Valencia, Calif., AB is the only American company developing cutting-edge cochlear implant technology that restores hearing to the deaf and allows recipients to hear their best today, tomorrow, and always.

AB has the most sophisticated cochlear implant system on the market, the Harmony® HiResolution® Bionic Ear System, with five times more sound resolution than its competitors, designed to allow recipients to go beyond deciphering simple speech to hearing music.

With sales in over 30 countries and a proven track record for developing high-performing, state-of-the-art products, AB’s talented group of 660 technologists and professionals from all over the world are driven to succeed, work with integrity and stay firmly committed to quality.

To learn more about AB and its revolutionary cochlear implant technology, please visit www.advancedbionics.com.

About Sonova
Sonova is the leading provider of innovative hearing healthcare solutions. This globally active group of companies is one of the world's top three manufacturers of hearing systems, the market leader in wireless communication systems for audiology applications and a provider of professional solutions for hearing protection. Sonova is pursuing a clear growth strategy and is intent on building its market share. To this end it is constantly expanding its existing business segments and branching out into other areas of the hearing healthcare industry.

Present in over 90 countries, and with a workforce of over 5,300 employees, Sonova generated sales of CHF 1.249 billion in the financial year 2008/09 and a net profit of CHF 284 million. This financially strong group of companies bases its success on innovation, customer focus and proactive cost management.

The company has been successfully promoting understanding and communication for over 60 years, and is ideally positioned to benefit from the trends in this growth industry.

Sonova shares (ticker symbol: SOON) have been listed on the SIX Swiss Exchange since 1994. For more information please visit www.sonova.com.

Baby Lab - 28.5 months

I can't believe that Lily's had her Advanced Bionics Cochlear Implants for 18 months already.  She speaks very well and non-stop these days. 

Lily comes up with original thoughts, long compound sentences and can make up complex pretend sequences which are amazing Mary Pat in the Babylab. 

Here is our latest report.

1.  Lily built off mom's model and asked her first "why" question in the lab.

2.  Great job of supporting "thinking and feeling" words and supporting Lily's recall (remember when...)

3.  I heard her talk about "pretend" using the word for pretend.  Wow!

4.  You support her imagination in such interesting ways.  She is captivated when you pretend together.

5.  She is able to navigate this pretend world with your support, which results in a lot of talk not tied to here and now. 

6.  What interesting problem solving - sit on Mommy's lap to avoid the truck traffic.

7.  Very diverse vocabulary use - (neighbors) - with a lot of specifics.  I heard many adjectives today in her noun phrases. 

8.  Very positive to hear the speech clarity.  Her words are well formed.  Blends at the end of words - whoops and ones (nz)

9.  We are hearing additional colloquial expressions.  Whoops! yup..there ya go. 

10.  Continuing to increase utterance length. This is just magical to watch.

11.  Lily said "by himself."

12.  Think about acoustic highlighting on /h/ (in here)

 

Lily's First Haircut - "That's not so bad"

Lily had an official first haircut for which she sat very still.   We were pleasantly surprised, because of our previous attempts at giving her bangs a little snip.  It must have been the big cape, the big chair and the big mirrors that captured her attention just long enough for the hairdresser to trim her blond locks.  Lily didn't really have much hair until 18 months, so we were only going for a trim. 

As the hairdresser sprayed her hair down with water, Lily said, "That tickles" which was quite amusing for the whole salon.   After finishing up and getting some candy, Lily jumped down and said "That's not so bad."  Again the entire place erupted in laughter. 

Haircuts were situations that "pre-Cochlear Implant" I wondered how we would do it so she could hear.  Fortunately, it didn't present a problem at all.  When the hairdresser was cutting one side, we just flipped the head piece down and as she moved to the other side we replaced the head piece and took the other one off.   No problem.   Lots of anxiety created over nothing.   

Online Music Therapy Courses and other CI Experts

Last week, I watched a free online session with Chris Barton, board certified music therapist, hosted by Advanced Bionics. Chris  is an award-winning composer, performer and music therapy guru.  I think I've raved about her before, but this online session reminded me of how well she understands kids with CIs and how music therapy/music training is a must for kids who are learning to listen and talk.

The session I attended was primarily a Q and A, but there are at least seven other free online courses with Chris Barton in Advanced Bionics's Listening Room. 

There are also lots of other sessions in their eLearning Library by some of my favorite CI experts like Dave Sindrey, Mary Koch and Amy Robbins. Specially look at Amy Robbin's intervention Activities for ITSIs (Infants and Toddlers with Cochlear Implants).  Check it out!

You've got a Talker There

Pretty much every where we go now, someone comments on how much and well Lily is talking.  From grocery store clerks and people in the Library, to Realtors and retail check out people.  Not because they see Lily's Cochlear Implants or have any idea of what they are, but because she is talking all the time and her speech is very clear. 

The grocery store clerk said, "She talks so well and you can understand everything she says.  How old is she?"  This is at the same time another grocery store clerk is throwing balls with Lily in the aisle.  Lily is telling him to "throw the ball."  He carefully tosses the ball and she say, "Uh oh, I missed it."  No worries.  He ran and picked it up to throw it again.

The slightly odd thing is on this same trip, a man started signing to Lily.  He could hear, because he had already informed me (unsolicited), that I was debating over two metal pans that were the same.  "No," I said, "One has a lid and the other one does not."  Or as my friend Yvonne would say, "Back off."  :)

Two other people have signed to Lily once they could see her CIs which I find very interesting. Not sure if they were deaf or not.   It will be facinating to watch this new generation of kids with hearing loss and the enormous amount of opportunities that have opened up to them because of their Cochlear Implants.

AB Harmony vs Nucleus 5

Advanced Bionics has posted a new comparison chart versus Cochlear's latest Nucleus 5. Click on the link for more insights.

Skinit for Advanced Bionics BTE

Advanced Bionics has started a very cool partnership with Skinit, maker of "skins" you can put over your Advanced Bionic BTE Cochlear Implant or computer or IPhone or whatever.    Lily can be a Hawkeye one weekend and a Husker the next.  Or maybe have butterflies one week and then Minnie Mouse the next.  Right now we are sticking to basic tan.  In fact, because her hair is finally filling in, we get far fewer stares and questions these days.  The headpieces and cords often seem to just disappear into her hair.  I am sure in a year or two, Lily will be ready for sparkles and rainbows. 

Jumpin' Kate = Jumpin' Lily

This weekend we went to a local community radio fund raiser, which was simply a couple of bands in someone's backyard.   Lily loved it.  She and cousin Ivy were jammin', jumpin' and groovin' to the acoustic guitar sounds of Jumpin' Kate and another guy named Mike who was also terrific, but his name was less memorable.  Lily must get her love of acoustic guitar from me and her Aunt Tiffany.   The band was gracious to wave  and smile each time  the kids ran around the dance floor. 

It was so satisfying to watch Lily dance to the music and listen to the songs.  Carefree and enjoying the sound.  The audience asked Lily questions  between sets like "How old are you" and "what is your name" and she didn't miss a beat.  This would never be possible without her Advanced Bionics Cochlear Implants.  We are so thankful.  

Cochlear Implant Resources and Services by Company

Here's a new one-stop-shop and resource for professionals working with students with cochlear implants that was developed by the Illinois School for the Deaf.  It focuses on resources and services offered by each implant company.

Pretending and Singing Mr Sun

We're having lots of fun as summer draws to a close.  It was a beautiful weekend to play outside and do all those summer kid activities like bubbles, chalk on the sidewalk and play dough on the porch. 

One funny interaction this evening was when were pretending with the play dough that we were having a picnic.  I told Lily we were pretending to eat.  Then asked, "What am I eating?"  She finally decided I was eating a strawberry.  Then I tried to change it and said, "Now I am eating an enchilada."  Lily said, "No Mommy.  It's not enchilada, it's strawberry.  Pretend strawberry." 

Lily has also been growing her singing ability.  Tonight she told me to "Stop singing Mommy.  Shoe singing."  She was playing with her pink sandal and apparently it wanted to sing.  (We don't stifle creativity here.)   Then she started into "Mr Sun, Sun, Mr Ol' (Golden) Sun, Please shine down me."  Totally amazing.  We cheered. 

Check out this article called Bringing Music to Their Bionic Ears: Nurturing Music Development in Children With Cochlear Implants.  By Christine Barton - A music therapist who we adore!

A few more fun pictures to enjoy.

Internet Capability in Cochlear Implants

When we spoke at the Advanced Bionics headquarters, we envisioned the future for people with CIs. We thought they'd be the lucky ones with "CIA style" hearing.  Maybe listening to someone whisper across a huge field?

Here's a new take by Google.  "Vint Cerf, vice-president and "chief internet evangelist" of tech giant Google, foresees the introduction of internet capability to existing neural interface technology such as cochlear implants, allowing, as an example, web radio played direct from computer to brain." So cool.  More

Communicating Her Needs Or Stalling Tactics

Lily is quite the communicator. She's using her new skills to try and convince us to let her stay up later at night. Last night we came home from dinner at Grandma's and before Lily headed upstairs to put on her pajamas she ran over to the kitchen table, jumped into her booster seat, buckled herself in, and said, "I play cards now Mommy". She was referring to activity cards that she played with Mommy earlier in the day from Advanced Bionics Listening Room. She knew that it would be hard for us to say no to just a little more language learning. Clever girl. Here's a photo.

Tonight was a little different. We've been reading the book "Baby Can't Sleep." In it the daddy tries to get baby to fall asleep by counting sheep to her (One sheep chasing fireflies, two sheep playing guitar, three sheep staring at stars, etc.). Lily was a little restless and reached for me to pick her up and said "I count sheep, I count sheep, I count sheep," which sounds remarkably like "I can't sleep." Once I made the connection we counted a few sheep and she promptly relaxed and fell asleep. Ahh the power of language.

AB Cochlear Implant Article in the LA Times

There was an excellent article in the LA Times today called "Cochlear implants open deaf kids' ears to the world."  It chronicles a little boy named Tyler from CI surgery and activation, to speech at the John Tracy Clinic.   Hope we see more mainstream media covering this new generation of kids with Cochlear Implants.  Talk about a changing industry. It's certainly not business as usual. 

We Love the Beach

I Love the Beach has been the theme at Kindermusik this session, so actually going to the beach was the perfect opportunity to build on what Lily was learning.  Of course I love the beach as well; the smell, the sounds and the sunsets.  Reminded me in many ways of living in Hong Kong. 

We dipped our toes/legs in the ocean twice and Lily loved it.  She learned new words like ocean, beach, waves, shells, and seaweed.  She loved getting sand between her toes and putting all the seaweed in a big pile.  

We were really cautious about getting Lily's processors wet. One fall in the water and it could have meant trouble.  We did learn from our tour at Advanced Bionics that even the Body Worn Processors are pretty water resistant.  The real issue for the BWP is the headpiece taking a direct hit.   So with that knowledge, we monitored Lily's jumping in the waves, making sure she stayed upright when the water came in, but she was a little wet when we left.  

Hopefully the next time we go to the beach, Lily's processors will be totally waterproof and she can splash to her heart's content. If not, we'll have to resort to MacGyver waterproofing methods. 

Building Legos Building Language

After our visit to Advanced Bionics, we journeyed three hours south to Carlsbad, CA.  We found a lovely seaside community with great restaurants, a good beach, a fabulous Sheraton and of course Legoland.  It has a lot of Legos with a few kid rides mixed in.   Here are some pictures of our adventure. 

As you can see, Lily is non-stop action.  She loves to jump, go down slides and actually build with Legos. Lily received a a Lego Duplo set and tickets to Legoland from Grandma and Grandpa for her Birthday.  Thanks!!  There was so much to talk about and new adventures to discover.  It certainly had a major impact on her language. 

Our Trip to Advanced Bionics - Part 2

One of the things that was so fascinating about Advanced Bionics was that much of the production work was done by hand.  We watched each person as they created the internal pieces and slowly took each wire under microscopes and soldered them down.  

As the internal pieces moved down the line, each person's work was check by the person after them to ensure the highest quality standards.  They told us that their rate of production without errors (there was a technical term for this) was amazingly high for hand work, even rivaling automated production. 

The AB Director of Manufacturing, went through every step of the production process with us.  You could tell this guy had a lot of passion for the manufacturing process, for his employees and for the end-user.   He even told us a story about another customer and got a little weepy.   It was clear he was in the business for the right reasons and really wanted to make the best product that was absolutely possible.  He was so excited about all the new innovations they were working on. 

We now also finally understand what the manufacturing issue was with their Vendor B problem and saw the steps they have taken to both remedy the issue (they don't use Vendor B anymore and Vendor A manufactures their product differently) and then emerge as a better company with more risk assessment at every level.  This discussion was very reassuring. 

Lily did receive AB's new Melody the Monkey.   She is so cute and has bilateral cochlear implants, something Lily instantly related to.   Melody is just Lily's size and comes with a pink summer outfit. 

When we left AB in our rental car, Lily insisted that we put on Melody's seatbelt.   The traffic in and around LA was overwhelming.  Made me thankful we live in Nebraska where the streets are wide and the traffic is only heavy in our rush 30 minutes. 

Advanced Bionics - Making The Magic Happen

Here are just a few of the great people who played a part in creating Lily's cochlear implants. The folks at Advanced Bionics were so gracious with their time and spoke candidly about the importance of their work on helping people hear better. They were as excited to meet Lily as we were to have her meet them. We can't thank them enough.

Our Trip to Advanced Bionics - Part 1

We have always wanted to visit Advanced Bionics since the moment we chose the company's Cochlear Implant for Lily.  In fact if we knew it was so easy to visit, we might have journeyed to California much earlier to take a tour, meet the people and  see where the magic happens.

We were in the area for Lily's Dad's work, so added a few days on to trek to Advanced Bionics which is located just North of Los Angeles.  AB has two locations, a factory and a headquarters building, which is soon to become one in a beautiful new facility down the street from their current headquarters. 

While we only requested a tour, we were invited to speak to the entire company about Lily's hearing journey.  AB feels it is important for every member of their company from factory workers to the CEO to hear the CI stories of their customers, both good and those who have had challenges.  With this aim, AB invites about 30 customers a year to speak and requires their staff to attend.

We were one of those customers to speak to the entire  staff in both locations.   It was truly an honor, and yet quite intimidating to talk to those inventing, improving and producing products that have allowed or will allow Lily to hear better. 

We saw it as a rare opportunity to directly impact those who will shape Lily's hearing journey through improved hardware and software.  We saw it as a opportunity to directly thank those who made Lily's implants.  (They pulled a half dozen people off the floor to meet with us, who in part made Lily's implants.)  We also saw it as a time to motivate and inspire the company by demonstrating Lily's success with acquiring listening and spoken language. 

I'd say we left our visit as "believers."  While we definitely identified things we thought they could do better, we drank the Kool-Aid and are so happy we chose AB for our partner in this hearing journey. They even told us and showed us some of the secret stuff they are working on and boy are we excited.

There is so much to report about our visit and vacation, we'll have to break it up in a number of blog posts.  As they say on TV.....Stay Tuned.   

AB On The Brain

So as we're going back over notes and resources from the past two years in preparation for our presentation at Advanced Bionics, Lily's Mom stumbled upon another great blog by a recent AB user and a post about why she chose AB. Good reading and a great summary of AB benefits.

Preparing For Our Advanced Bionics Trip

From the day we chose Advanced Bionics for Lily's implants we've wanted to make a visit to see the company in action. As luck/fate/karma would have it I was going to be in the area attending a trade show for my work. We decided that it would be a perfect opportunity to tack on a couple of vacation days and make it a family adventure as well. So the whole family will be making a trip to sunny SoCal in a few weeks. 

Lily's Mom made a few calls and managed to schedule a tour for us at their facilities. During the conversation, the AB rep asked if we'd be interested in speaking to the employees to share our story. We jumped at the invite to meet the people who've made such an impact in Lily's life. So we're now in the process of prepping a 60-minute presentation to be given to both the manufacturing facilities and AB headquarters. Stay tuned for updates and insights.

Hearing Journey Posters, A New Book and Listening Tests

Faye, our Hearing Resource Teacher, has brought a couple of great posters from AB's Hearing Journey website including the Sleepy Time Poster and the "I Heard That" Farm Poster that Lily has loved to explore and talk about. 

She also brought a book from Eric Carle called Papa, Please Get the Moon for Me.  It involved a father climbing up a ladder, on top of a mountain, to get the Moon for his daughter -- something Lily's Dad would definitely do.  Lily soaked the book up as we read it, but didn't react too much.   Then later that same day, as her Dad was holding her, she tried to reach and grab the moon herself.   She's already an independent woman and definitely understood and could apply what she had read.

Lily's languauge continues to grow everyday.  She repeats everything and many of her words and sounds are getting clearer.  Today our SLP Staci was doing a listening test where she would ask Lily to point to the box with the Baby, Ball and Star or Book, Blocks and Heart, etc.  After the exercise was completed, our SLP said Lily had done fabulously and that she usually waits until kids are three to do these exercises, but that Lily was definitely ready for them.  Too fun!

Chat Online with Jeff Greiner, President and CEO of Advanced Bionics

Advanced Bionics invites us to participate in three very cool online chats with the President and CEO:

Putting Patients First • June 9, 2009
Building a Reliable Cochlear Implant System • June 23, 2009
Ease of use and aesthetics of AB’s Cochlear Implant System • July 7, 2009

These sessions are an informal way to address questions and share ideas with the leadership at AB.

To access the Online Chat on the day of the event, simply click on http://advancedbionics.acrobat.com/r55927499/ a few minutes before the start of the session. Then select "guest entry" and type in your first and last name.  Registration is not required.

To learn more about these chats, visit www.BionicEar.com

Coming To A Cochlear Implant Center Near You

We're always on the lookout for up and coming technologies that will make Lily's life easier with her cochlear implants. This often times means looking to Europe or Canada for the latest offerings from the cochlear implant manufacturers. Because of FDA regulations in the US, it often takes longer for these new offerings to make there way through the approval process and to the market. This can sometimes be frustrating - especially for some of these accessory offerings like new battery options or harness options that don't really impact the actual cochlear implant device or the sound processor. However, its nice to know they are looking out for our kids. 

One of the new devices we'll be interested in taking a look at is Advanced Bionics new off-the-ear battery options that will allow Lily to use a behind-the-ear Harmony processor, but not have the bulk of a big battery on each ear (see picture below). We've heard that the behind-the-ear Harmony offers a lot of advantages (like t-mic options, better positioning to take advantage of one's ear anatomy, and digital sound processing). For now, the body worn processor with the single magnet and microphone combo is really ideal for an active toddler, but we'll keep looking for better.

AB Hearing Journey for Babies and Toddlers

A new section on Advanced Bionics Hearing Journey website, targeting babies and toddlers, has just been   launched.  This is an excellent site for free activities and resources to support the development of speech, language and listening skills.  The site features works from Dave Sindrey, AVT and Chris Barton, Music Therapist. 

Always Check The Equipment

When Lily was running around getting ready for bed tonight, we noticed that her left ear processor unit would occasionally beep. This warning beep typically happens when the headpiece comes off or the battery on the speech processor gets unseated, but tonight it was intermittent and didn't appear to be a battery issue. 

Well after 10+ months of heavy usage from an active toddler we discovered that one of her headpiece cords finally gave out. It started to fray at the base where you plug the unit into the speech processor. Luckily we are very diligent about checking all of the equipment each night (and during the day for that matter). For a more detailed test you can check the cord by plugging headphones into the unit and seeing if there is any static when the cord moves. We could tell right away that the cord was fried and quickly found the place of the problem. Luckily, we have a couple of spare cords which we swapped out and got Lily back on the air. 

We've heard that the milage varies for how often people need to replace cords (I'd image it would be similar to wearing your iPod headphones continuously for months - not sure how long they'd last either). Since replacement cords are $39.95 we treat them as gingerly as possible and Lily's good in that she doesn't pull or play with the cords. We've heard stories about parents needing to replace equipment monthly because the kid chews, pulls, or damages the cord on a regular basis. 

In the end it was a good reminder to check the equipment and keep some spares handy. Crisis averted.

Ten Reasons We Chose AB CIs

We read the question "How do you choose the brand of CI" on the CI Circle listserv quite frequently. We thought we'd try and answer how we made our decision of Advanced Bionics, over 11 months ago. 

We made this decision after exhaustive research on the Internet, studying a CI comparison chart, reading all the company material, emailing parents both locally and total strangers, talking with our CI Center, other ENTs, HI teachers, and emailing CI researchers. 

We felt this was a big decision, although the CI manufacturers (Advanced Bionics, Cochlear and Med-El) all seem to get similar end results.  At the time we made our CI decision, there had been very few studies comparing the brands, especially in children.  The studies that do exist are now old and out of date as technology has changed. 

Here are our top 10 reasons that we chose AB.  Of course science and innovation continue to improve (thank goodness), so we made the best choice for Lily at the time and tried to predict which manufacturer would continue to come out with the best technology to allow our daughter to hear. 

1.  AB Harmony BTE is lighter weight than Cochlear Freedom and looked a little sleeker.  It also has a solid head piece and not a wagon wheel design. 
2.  Option of a Bodyworn Processor with nothing on the ear (great for babies - we've loved this, although at first it seemed huge) and/or a Behind the Ear Processor.
3.  The internal device is set up for easy upgrades in the future.  Lots of space and flexibility. Devices now being used are only using about 10% of the total computing capacity. 
4.  AB has independent output circuits allowing current to be sent to each electrode individually creating the option to steer current in the future or fire individual electrodes. This is how they get the HiRes 120 mapping strategy (see reason #8).
5. The "device failure" issue is now not an issue, since the vendor manufacturing the faulty equipment was replaced two years ago, AB has just as low number of failures as the other companies.
6.  Rechargeable batteries are cheaper/last longer (although you can use disposable batteries with the BWP if you need to and a new battery pack option is about to be released for the BTE similar to Cochlear's popular battery pack).
7. T-mic that fits in the ear.  Makes using the phone and ear buds for Ipod's easier and optimizes the ear shape for sound. 
8.  HiRes 120 processing strategy.  Probably one of the biggest reasons.  Fast processing strategy. Creates 120 virtual channels to achieve the best sound for the user, primarily for music. 
9.  Widest Dynamic Range at 80 dbs. Studies seem to indicate that a wide IDR will help a lot in noisy situations, like a classroom.  "Normal" hearing is in the range of 120 db.
10.  AB has a 3-year warranty for the body-worn, and they extend the warranty another 3 years for the BTE.

We have been very happy with our choice (so far).  Knock on wood.  Is there a computer equivalent to this?   Lily's CIs have worked very well and nothing has had to be replaced, not even a cord.  Now we want the AB scientists to work night and day to improve the technology, so hearing impaired people can be on an even playing field (or hear better) than normally hearing people.  We ask so little :). 

CI Airport Security

When we go though airport security, I always have TSA pat Lily down, instead of going though the metal detectors.  This way, she doesn't have to take the CIs off and the TSA is more than happy to do it.  Lily is never thrilled about the patting, but it is usually quick. I have an official "I have a CI" card from Advanced Bionics if we are ever challenged.

Here are some quick facts about CIs and Airport Security.

Metal detectors and security scanners will not damage the implant or sound processor. However, individuals with a CI passing through security metal detectors may activate the detector alarm.  CI users also might hear a distorted sound caused by the magnetic field around the security scanner door or hand-held scanning wand. Turning off the sound processor before passing through security screening will ensure that those sounds, if they occur, are not too loud or uncomfortable.  TSA outlines the specifics.

X-ray machines will not damage the sound processor; however, x-ray machines have the potential to damage the electric microphones used in most cochlear implants and hearing aids. 

Spare lithium batteries, which CIs run on, are allowed in carry-on baggage if they do not individually exceed 8 grams (~100 Watt hours) of  equivalent lithium content. 

In addition, the FAA has confirmed that Advanced Bionics cochlear implant recipients are exempt from powering off their sound processors when instructions are given to turn off cell phones, music players or anything with an on/off switch. The FAA regards the cochlear implant in the Hearing Aid category and hence is exempt from being switched off.   For more information, see Advanced Bionics FAQ for air travel.

Taking the Ears Off

It kills me to take Lily's ears of at night or when she gets in the bathtub.  I feel like I am taking her hearing away.  I am, but right now there are no other options.   Lily doesn't seem to mind, but she doesn't know any different.  We don't hear much when we are sleeping anyway, but I long to tell her, "Go back to sleep" and have her hear me.   Her CIs fall off periodically though out the day, but we get them right back on her head (when we hear the beeping) and she doesn't miss a beat. 

Lily's Dad and I are so attuned to the pitch of the CI beep that we can hear it though all kinds of noise. Sometimes we will hear that same beeping from a truck backing up and we have to stop and figure out if it is Lily's CIs.  I am so grateful to the Advanced Bionics CIs that are allowing her to hear, seemingly very well.  She hears the vent in the bathroom banging softly, the click of the thermostat and the wind outside.  Nosies I filter out.  Lily is constantly alerting us to sounds.  She points to her cheek when she hears something unusual. 

Researcher are working on an internal CI device and for me it can't come soon enough.  Some groups are saying it may be available in five to ten years.   I've read about human trials going on and the challenge comes with the internal microphone.  People can hear their own blood pumping and other internal noises.  The external microphone is still superior. 

Someday maybe Lily will have Superhero Hearing.  Her Uncle Chris would be quite jealous I think.  She'll be able to hear across rooms, though walls, and of course read lips.  Maybe she'll work for the CIA?  With her determination, I am already certain that she'll be able to accomplish anything she desires. 

Advanced Bionics Calendar Girl

Every year Advanced Bionics solicits photos of kids using its products for use in an annual calendar it produces. Well ours arrived in the mail today and Lily is front and center as one of the kids highlighted in January - way to kick off the new year. Over 260 photos were submitted. It's great seeing so many other smiling, happy kids and it must be a great motivator for parents and employees at the company to see what a difference the technology is making. You can order the calendar here. Happy new year!

Live Online Mapping

Today Lily had her six month mapping appointment.  She was hearing between 25-30 dbs and preferred listening for voices instead of what we would call "white noise" sounds.  Our Audiologist Jeff said the ideal listening range is between 20-30 dbs.  Lower than that can introduce a lot of noise which may interfere with speech perception. 

With Advanced Bionics, Lily has a dynamic range of 80 dbs so she hears sounds from 20-100 dbs.  Her maps were turned up just a little bit in the high frequencies, but our Audiologist believes they are close to ideal.

Lily's appointment was also broadcast online so friends and family could watch, with a password of course.  Boystown is experimenting with online distance mapping, which will be a great service for those people living in rural areas. 

The photo is of Lily on camera/online in the sound booth, identifying which way a soft sound is coming from.  Our Audiologist says things like, "Lily Lily, ba ba ba ba, Uh-oh Hi Lily, Over here," while Lily is being distracted with toys by another Audiologist. 

Another AB BWP Tip

The Advanced Bionics Body Worn Processor (BWP) is really easy.  There are three dials.  The first dial turns the CI on to a specific program, the second dial is the volume and the third dial is the sensitivity.  Since we don't ever change the sensitivity or the volume, we set the dials and then taped them so they don't move. This has worked very well.  Before the tape, the dials would change every time they rubbed on Lily's pockets.   Now we know if the lights are flashing, Lily is hearing at the right levels. 

Tips for the AB BWP

We have a bilateral baby, meaning Lily has two cochlear implants.  She wears the Body Worn Processors by Advanced Bionics, which have been surprisingly easy to manage.  So far after five months, nothing has broken, not even a cord.  Knock on Wood.   One adaptation we have made is putting a little dot on the head piece and on the bottom of the cord.  This way if both head pieces fall off, we know the one with the dot goes on the right.  The same goes for the bottom of the cord.  If we put her processors on after a nap, we know the cord with the dot goes in the processor with the dot or the right processor.  We've also labeled the left and right processors with an "L" and "R".  If a cord would happen to get switched, the CIs don't work.  So we watch for blinking green lights on her processors as the signal that everything is a Go Go Go. 

CI Off

Lily is an active girl. Whether climbing on furniture or rolling around with the dog, she takes on life head on.

This can be challenging, especially when her CI magnets fall off. We've been trying to reinforce the importance of noticing when they fall off by getting her attention and saying "CI Off." We're also trying to teach her to advocate for herself by alerting us when they do. Typically the audible beep from the AB device lets us know, but we want her to get into the habit of speaking up for herself when they fall off.

Anyway, she's a quick learner and has started to say "Uh Oh" and points to her ear/back of her head when her CI's are off. We're so proud. Next step is to teach her to put it back on herself. Baby steps.

Cochlear Implant Workshop at Boys Town

Lily and I will be on a parent panel at an upcoming workshop sponsored by Advanced Bionics (Susan is teaching that night, but will be there in spirit). The workshop, titled "Current Trends in Cochlear Implants," will be held at Boys Town National Research Hospital on September 11th. I went to a similar session last year as we were beginning our journey and it was quite helpful to hear real-life stories and talk to parents who had gone through similar experiences. It'll be nice to be on the other side of the panel to try to help others who are navigating similar circumstances this year. If you're interested in attending, here are the details:

Where:
Lied Learning & Technology Center
Boy's Town National Research Hospital
425 N. 30th Street, Room 311, Omaha, NE 68131

When:
Thursday, September 11, 2008 • 6:00 pm – 8:00 pm

RSVP:
Linda Luallen (Linda.Luallen@AdvancedBionics.com, 800-678-2575, ext. 1467)
Complimentary child care will also be available if needed.

BWP Tank

This little tank from Target was re-engineered by the Grandmas to be Lily's Advanced Bionics Body Worn Processor holder. It keeps everything in place and is super comfortable under her clothes on hot summer days.  As you can see there are pockets on the sides for the processors, a pocket in the back with Velcro to keep the cords in place and a little flap at the top to run the cords up the center.  Works like a charm.  Email for exact dimensions.   

What Does It Sound Like?

What does it sound like to hear with a cochlear implant. From what I've read, it seems difficult to describe or simulate. Basically each person's brain translates and processes the electrical stimulation a little differently so results seem to vary. Hopefully Lily will be able to tell us in her own words later on our journey.

Having said that, here's a link to the Advanced Bionics website that talks about their HiRes sound processing strategy (the one Lily is using).

About halfway down the page is a link to a simulation of HiRes 120 that plays a musical piece simulated first through a traditional cochlear implant, then through the Hi-Res, and finally as the original sound. Pretty impressive technology.

How Does A Cochlear Implant Work?

Needless to say we're getting asked more and more about "What's that on your daughter's head?" or my favorite "What's she connected to?"  Here's a video explanation about how the whole system works.