Life is Bliss - Lily's Cochlear Implant Journey

7th Grade Cello Update

Lily is still playing the cello in the middle school orchestra. In fact, this winter she won an award from her orchestra teacher and local friends of chamber music group that was described as: 1) A student that exemplifies teamwork, camaraderie and positive communication with their peers and 2) A student who perform individually very well, but that takes second place to the traits of an effective member of a musical ensemble: teamwork, camaraderie and positive communication. Who would have ever guessed?

Although school ended at Spring Break and the final concert was never held, Lily put on a few online concerts for her family. In this video, she plays a piece she was supposed to perform, along with the rest of the 7th and 8th grade orchestra. Hard to understand all of the music since the cellos rarely have the melody, but you can see the progression of her skill, rhythm, and listening abilities. 

 

Lily Plays the Cello - Year 2

This is Lily's second year of cello.  As a 5th grader she is currently preparing for her upcoming winter concert. It's pretty amazing to see her listening to the notes, rhythms and melodies so carefully.  She is now working on tuning her cello and knowing if the notes are sharp or flat.  We never dreamed that this would be possible. 

Here's a very interesting recent literature review on music and cochlear implants called What does music sound like with a Cochlear Implant.  Very technical, but worth the read.  

However, Lily would disagree with much of the research.   She believes it's hard to understand how kids implanted pre-lingually with cochlear implants hear music. 

 

Advanced Bionics Q90s - Review by a 4th grader

We have loved Lily's AB Neptunes, but decided it was time to move to AB's Q90 Naida ear-level processors.  

Lily's experience and ease of change has been positive.  Here are the Top 8 things we like about the AB Naida Q90s.  

• Lily says she could hear at a level 8 (out of 10) with her Neptunes, but can hear at a level 9 with her Q90s.  
• The Neptune programs rolled directly over to the Q90s so the sound is very similar (according to Lily).
• The ear-level processor wearing hasn't been a problem with the new weight on her ears or keeping them on her head except when she's running or reading upside down.  However I can't imagine how you would keep them on a baby or small child.  Neptunes are still dreamy for this young population and have fewer parts to break.    
• Lily doesn't turn her head so dramatically when trying to hear in difficult listening situations because the T-mics are now in the center of her ears, instead of the microphone being on the side/back of her head. 
• Lily can now use headphones like all the other kids, in addition to steaming music or sound via bluetooth (something other kids can't do!)  
• No more tank tops to hold the Neptune in place and long cords running from the headpieces to the processors. Although she was sad to see the tank tops go.  
• There is much easier access to the Q90s to change the programs or adjust the volume, although Lily prefers set it and forget it.  Her programs include a regular program with auto zoom and wind block, duo phone and super stereo zoom.  
• Lily likes the automatic auto zoom feature that "turns on" in noisy situations. She can hear the sound cut out for half a second before it turns on, however the FM overrides this feature when it's on.  
• Three-year warranties for all the components.  

Things we'd like to improve:

• Lily longs for complete static and waterproof processors. However the waterproof setup of the Neptune totally changed our lives and Lily will still wear them for water activities. The Q90s have a water proof box we could have selected, but we chose to stick with our beloved Neptunes for water.
• The only battery that has an FM connection is the 170. For Lily, the FM is worn during every school day.  The length and weight of the battery and FM receiver becomes quite long, especially on a child.  The 170 batteries last Lily about 14 hours, which is close to a full day but sometimes we have to change them.
• None of the new "mini" batteries are included in the initial purchase of the product.  Especially for children, this seems like an ideal product that would be used on the weekends.

Phonak Pen Review - Experiences of a 4th grader

Lily has been testing out the Phonak Pen for a month now.  We're impressed! 

The primary objective in purchasing the pen was to try the omni-directional mic in the lunchroom for a better listening experience.  Lily has always struggled in this noisy environment and nothing except sitting in a different room helps.  The omni-directional mic, which is incorporated in the pen, seems to be a great improvement over the traditional directional mic of a Phonak Inspiro in this situation, and allows Lily to hear multiple kids at the same time in different directions.

The challenge in the lunchroom comes when the students get too loud and instead of being able to figure out what voice to amplify, the pen amplifies everything including dishes clanking and voices from other tables that are not involved in the primary conversation. At this point, the pen needs to become a traditional directional mic to be useful.  However, the pen's small and light profile makes it less intrusive to hang around someone's neck and truly feels and looks like a pen.  

Lily is also using the pen on the playground.  The pen's capacity to "beam" when pointed at someone, gives Lily increased hearing advantages.  On the playground, she either wears the pen on her neck, keeps it in her hand to beam or hangs it on another kid if they are running around. The disadvantage here is that the range for the pen is much shorter than the Phonak Inspiro, but Lily is use to staying fairly close to her peers to hear the conversation.   

We have not been able to try the new Phonak Inspiro Touchscreen which incorporates the microphone into the transmitter (eliminating the long cord and small microphone that gets tangled on everything) and also has an omni-directional microphone when set flat. This is a great improvement for the Inspiro. Unfortunately, the pen doesn't network with the Phonak Inspiro, which is a major disappointment for these different use cases, but it does network with other pens.  The pen also doesn't network with the classroom media hub. Lily must connect with each device as she changes between them and while this isn't hard, it does require a little time and knowhow.    

As for durability, the Inspiro feels slightly heavier, like it could withstand more abuse, but so far we haven't had any problems with the durability of the pen.  The pen does come with a lanyard which cleverly attaches to the pen's clip.  

Another time that Lily uses the pen is in her reading group.  Again Lily uses the omni-directional feature to hear the kids around a table and if needed, she or the teacher will slide the pen on the table closer to the quieter students.  Lily prefers this set up to having additional large student microphones around a table.  

Phonak has also come out with a flat low-profile table microphone, which looks ideal in this "reading group" situation but it has a fairly high price point, so we haven't had the opportunity to try it.  

Overall the Phonak Pen has been a great addition to our hearing technology tools. 

Lily discusses her new cello and plays jingle bells

Lily discusses her new cello journey and plays jingle bells after a month of lessons at school.  

Never did I expect Lily to take on playing a stringed instrument. She takes great joy in making the music and being able to hear whether her notes are sharp or flat.  Who knew this would be possible.  A real dream come true.   

The video also allows new families on this hearing journey to hear what a 9-year-old with CIs might sound like.  

 

Sapheara Live - Kids with Hearing Loss Need Super "Hear"oes too!

We love Marvel Entertainment and The Children's Hearing Institute's Super Hero Sapheara.  She has bilateral pink CIs, a pink cape and boots, and a long pony tail.  Her super power is the pink gem around her neck that offers a protective shield to those around her.  

It's important for us all to have super heroes and Lily has certainly found one she adores.    

 

Sapheara and Blue Ear - Back in action thanks to The Children's Hearing Institute and Marvel Entertainment

The Children's Hearing Institute has announced another collaboration with Marvel Entertainment.

Blue Ear and Sapheara, Super Hear-O's from the comic book Sound Effects (which was awesome!), are back in action again.

CHI has released Scene 1: Rooftop Rescue (Click HERE to download and print) and Scene 2: Silent Threat (Click HERE to download and print).  Scene 3 and 4 will be released in the coming months. Such a wonderful gift to our kids!  

Lily is already planning on how to replicate her costume.   She was also thrilled to see that Sapheara may be wearing AB CIs.   The mention of an "Electromagnetic Pulse Generator" sent chills down our spines with the thought of wiping out every electronic device in the city!  YIKES  :)  Find out what happens next! 

We'd love a giant cardboard cutout of Sapheara.  All kids need a Super Hear-O.  Can anyone help us with this?

AB research in the news

Two new research studies about potential future Advanced Bionics technology.

Use of the Phantom Electrode strategy to improve bass frequency perception for music listening in cochlear implant users.

Integrated Speech Processor Headpiece with patent approval

 

 

 

Fourth grade and preschool bound!

Today is the start of fourth grade for Lily and another year of preschool for Bodie. Who would have ever imagined? Lily continues to achieve at very high levels and remains passionate about reading (and life!). She just finished the new Harry Potter script, after a summer of pouring through books.

Lily has her darling Kindergarten teacher again for the fourth grade. We are lucky she is such a strong teacher and will challenge Lily and help her grow.  

Unfortunately, our favorite principal retired this summer. This was a huge blow to the amazing school and culture she developed.  We are ever indebted to her leadership, advocacy and inclusion focus in a growing school. Hopefully we will cross paths again.  However, our new principal will be great too and has already shown great interest in "hearing issues" and providing strong support and inclusion.  

We are also lucky to be with other families and kids at the school who wear CIs.  We are able to support each other in our kids' hearing journeys.  I'm not sure where we'd be without them!   

Lily continues to wear her Neptunes, and we hope new AB BTEs will come out next year. Lily's been seeing some new advantages in BTEs like using headphones and some directional microphones. She continues to utilize a Phonak Inspiro in the classroom, in addition to a soundfield and Dyna-mics. And the best part is that all the technology worked on the first day of school!  Lily's hearing resource teacher gave a great training to the school's staff last week to prepare them for the technology and best teaching practices.

For new technology, we've got our eye on the new Phonak Inspiro touchscreen because of the Omni Directional Mic capabilities that can be utilized with small group discussions (and no mic wires) or a Phonak Pen (although not able to connect to other devices) or table Mics. Small group situations, especially in noise are very challenging for Lily. When there is one other student, they can wear the FM, but with many students, it's a real challenge.  

So much to think about and stay on top of this year but we're ready!  

 

Cochlear Implants before 12 months? Here's a new study showing benefits.

I have long believed that implanting kids before 12 months of age was an important and necessary approach for optimizing long-term speech outcomes.  Lily was implanted 7.8 years ago at the age of 10 months.  We would have done it earlier if the surgeon would have agreed.  

Eight years later, the age of 12 month is still used as a guideline for implantation.  

Here's a new study detailing the benefits of implanting kids before 12 months of age.  

 

 

Cochlear Implants in Noise: SNR loss in children using the BKB-SIN

Lily just finished her semi-annual visit to the audiologist.  We arrived with what turned out to be a broken headpiece, and fortunately, were able to order a new one for delivery the next day.  The headpiece had been cutting in and out for the previous few days and created a number of difficult listening situations with just one side.  

With a loaner headpiece, Lily went into the booth for tests.  

In quiet, Lily does very well.  Tonight, Lily was asking if she hears as well as a "typically" hearing person.  When we said yes, pretty much, she was quite proud.  However, noise continues to be a challenge.  Especially when the noise is variable.  

At the audiologist, Lily took an interesting test - BKB-SIN.  The BKB-SIN is a speech-in-noise test that uses BKB (Bamford-Kowal-Bench) sentences, recorded in four-talker babble. The BKB-SIN can be used to estimate SNR loss in children.   Lily's results were as follows.  Essentially, it says for Lily to get 50% accuracy, the signal has to be at least +9db above the noise floor or +11.5 db more than a normally hearing person (in a bilateral hearing situation).  

BKB-SIN Right CI only   SNR for 50% correct:   SNR loss re: normal Left CI only   SNR for 50% correct:   SNR loss re: normal Bilateral CI’s   SNR for 50% correct:   SNR loss re: normal	+14.5 dB 17 dB   +9.5 dB 12 dB   +9 dB 11.5 dB

An individual with normal hearing sensitivity would be expected to score 50% correct at a signal to noise ratio of -2.5 dB.  The SNR loss is the difference between the signal to noise ratio at which Lily scored 50% correct and -2.5 dB.

Hearing Resources

Three great hearing resources for families with kids with hearing loss.  

Jane Madell - A list of PDFs and videos on a variety of hearing related subjects.  I especially like this video showing how to use an FM in the classroom.

Success for Kids with Hearing Loss - Karen Anderson has a fresh approach and highlights many interesting tools and resources.  As Lily gets older, I'm interested in learning more about Interact-AS a school speech-to-text captioning device.  

American Cochlear Implant Alliance - View materials from their plenary and special sessions at their recent conference.  

 

Speech Perception Testing - The Challenge of Noise

We recently went for Lily's six-month CI tune up with her audiologist.  The two hour appointment goes quickly, however this time we were able to do some speech perception testing and examine what happens to Lily's listening abilities when she uses the FM system.

HINT Sentences in quiet:  97%

HINT Sentences in noise (+5 dB signal-to-noise ratio): 71%

HINT sentence materials are at about a 1^st or 2^nd grade reading level, so one might compare her performance on this test to listening to material that is routine or familiar.  A signal-to-noise ratio of +5 dB is not especially uncommon in a typical classroom and noise levels can often be even higher than this.

AZ Bio Sentences in quiet:  84%

AZ Bio Sentences in noise (+5 dB signal-to-noise ratio):  42%

AZ Bio Sentences in noise (+5 dB signal-to-noise ratio) with FM in use:  91%

AZ Bio sentence materials are at about a 6^th grade reading level according to some lectures.  It would be appropriate to use Lily’s performance on this as analogous to listening to material that is unfamiliar or that is new information/vocabulary.

We continue to search for better technology to help Lily hear in noise, especially when it is in a multi-talker environment like the lunchroom or during small group discussion.  

 

Breaking out the Harmonies

Over the winter break Lily discovered and announced she wanted to break out her Advanced Bionics Harmony BTEs and wear them at home. We received the Harmonies when Lily was first implanted, but have never activated them, because Lily has always prefered the Body Worns and done extremely well with them.  

The Harmonies give Lily hearing in the middle of her ear with the T-mics and enable her to slip the CIs on quickly in the morning.  Lily says the only difference between the sound of the BTEs and Neptunes is that she can hear herself chewing and her voice is louder.  However, she does not like how they fall off when she is upside down. And she is upside down a lot!  :)   

Lily also decided to change her standard Neptune headpieces from beige to pink to make sure kids at school saw them.  The first day after winter break she said excitedly that everyone asked if she had gotten new CIs for Christmas.  

A few months ago, LIly declared that she never wanted BTEs.  Perhaps now when AB releases a new processor in 2016???, we'll be the first in line.  

 

Listen to Lily's hopes and dreams - Second grade

Though this recording, you can listen to Lily's hopes and dreams, in her own words, as she starts her second grade year.  

Love that her hopes and dreams include inventing a static proof cochlear implant and to become a cochlear implant designer.   Hopefully Advanced Bionics will have a job for her in 20 or so years.  

Not sure if that stint is before or after fashion designer and doctor, which she ususally specifies is a Pediatrician and ENT.   She has plans to practice both specialties, every other day, when she is not teaching or being a Mom. 

My (Lily's) hopes and dreams are….

• To open a lemonade stand
• To make a new friend
• To invent a static proof cochlear implant
• To graduate college
• To get a good job as a doctor
• To make an invention that cleans your room or your house
• To get a four in writing
• To get a job as a fashion designer
• To be a flower girl or a brides maid
• To get a lot of Paw awards in one week
• To invent a new color
• To be in the Guinness Book of World Records
• To go in a haunted house
• To invent a new Ticonderoga Pencil
• To invent a new ride
• To make an amusement park
• To invent a haunted house
• To make a humongous roller coaster in Mindcraft
• To make a mansion in Mindcraft
• To build a new invention to carry kids around without adults pushing
• To make a castle in Mindcraft
• To invent an Ipad or video game
• To invent a new Mindcraft version
• To open a candy shop
• To write a library book
• To teach something new
• To make a new taco
• To have kids
• To invent a new writing tool
• To become a Cochlear Implant designer

Softball and Horseback riding

Lily had a number of new sport experiences this summer including softball and horseback riding.  

In softball, Lily liked hitting the best and was very good at it, but thought fielding was a bit boring.   She likes action.  It was fun to see her progression through the summer.  Fortunately her primary coach was the husband of her first-grade teacher, so I'm sure he'd already received lots of lessons in hearing.  :)

We watched carefully how hearing impacted the game.  Certainly Lily had to watch and listen to the coaches more carefully, and I'm not sure if she could always tell where the ball was hit or caught based on the sound of the bat or ball hitting the gloves.  Such small sounds in such large spaces.   We didn't use the FM for softball, but if this was the pros, we'd definitely consider it.

Horseback riding was a a wonderful experience as well.   Lily was ready to be "unleashed" on day two, although the teachers had other ideas.  The riding was slow and gentle, with lots of confidence building time.  While the farm was fairly quiet, it was challenging for me to educate the young teachers on the fly.  

On the last day, one of the Moms of the other students came over to me and said I see Lily has Cochlear Implants.  Instantly I wondered what her connection with the "hearing" world was.   She pulled her hair back and said, "I have one too.  I was implanted after college and have had it about 15 years."  While I was amazed, Lily thought it was only mildly interesting.  Having CIs doesn't seem that unusual to her.  

Hearing Research - Lily's contribution

Lily and her "hearing enabled" colleagues are on the forefront of a generation of kids who are able to maximize technology to hear.  

Because of this, we believe it's important to participate in hearing research whenever possible.  We do it both to benefit Lily's future and the families that will walk in our path.  Over Lily's lifetime we've done a half-dozen studies on language learning and listening.

This summer, Lily will add two more to her research resume.  One study earlier this summer involved a research van coming to our home.  Lily completed numerous listening and language tasks, in the van, to help the University of Iowa understand how kids with hearing loss are learning language, compared to their typically hearing peers.  

The next study will be at Boystown in a few weeks which involves telelearning or telemedicine.   Boystown is studying if providing audiology services for children on-line is as effective as in person mapping.   Here's an Interesting article describing Boystown's future hearing research focus. 

 

 

#HearIam Phonak contest

We entered Phonak's recent #HearIam contest with cute photos of Lily and her Phonak Inspiro FM system.  The prize is a new Phonak Roger Pen, which is a microphone cleverly disguised as a writing pen.  Very cool!  

 

Huskers' Spring Game

Lily and Bodie experienced their first Husker Red/White spring game.  Feels a little like Where's Waldo.  Can you find them on the field?  

While the sound system in the stadium was really loud, it often times wasn't that clear.  Announcements, calls and music should have been captioned for those who are deaf or hard of hearing.  

Some sports stadiums are moving to IPads where people can follow the captioned action, but I hope that progressive stadiums will figure out Jumbrotron captioning before they are legally required to.  

Metal Slide Journey

 

It's been a huge week.  After two years of requests, Lily and the other kids with cochlear implants at her school, can now go down one metal slide without fear of damaging their electronic hearing equipment from electrostatic discharge.  It's a dream come true.   The slide is very fast and very popular with all the kids.  Lily says the slide is a "madhouse."  Building new vocabulary is just another advantage.

We celebrated the slide's accessibility, our donors and supporters with a ribbon breaking, speeches and cookies.  The school's leadership has been so supportive.   Many of the families were there to watch with amazement when the kids' hair didn't stand on end as they sailed down the slide.  Having a metal slide makes it a little easier to breathe knowing our kids have one less barrier and risk to hearing.  

I was proud to work with the other CI families to help to begin to make our school's playground accessible for all kids. This journey has moved the school's PTO to invest in "inclusive" playground equipment going forward. In fact, another new piece of equipment is going in this week.  I was thrilled to hear that other parents thought that all kids, no matter the ability or disability, should be able to access the playground and not just be able to get on the rubber surrounding the playground. 

While the two-year-old equipment was ADA accessible, it wasn't inclusive.  With kids of varying abilities served in mainstream classrooms, it seems playgrounds are an area that needs to be given another look. 

Bilateral vs Unilateral CIs in Children

Interesting study from Ear and Hearing of Spoken Language Outcomes in children with unilateral versus bilateral cochlear implants.  

Children with bilateral CIs achieved significantly better vocabulary outcomes, and 8-year-old children with bilateral CIs had significantly better language outcomes than did children with unilateral CIs....The outcomes were also significantly predicted by a number of factors related to parenting, child characteristics, and family background.

When Lily was implanted six years ago, the big debate was one or two implants.  Our sense was that she had two ears, so she should have two implants right away.  There was very little research about the benefits of two implants at the time. Many families were debating about "saving one ear for future technology."  I don't hear that phrase today.  Two implants seem like a standard practice. 

Do chickens hold the key for hearing loss

Chickens have the amazing ability to restore their own hearing, and this trait inspired the Hearing Health Foundation to seek a cure for hearing loss in humans.  I knew there was a reason we got chickens!

Check out this interesting article on the research and the Hearing Health Foundation's chicken video.  Curing hearing loss in 10 years?  Maybe?

Early Cochlear Implant Switch-On

Interesting research summary on the Safety and Functional Results of Early Cochlear Implant Switch-On in Children.   That means instead of waiting for four weeks before they switched the implant on, they only waited for one week.   Even five years ago, Lily's implant center only waited 10 days.  

"This is the first study investigating the safety and the effects of an early cochlear implant switch-on in children. Results show that such a procedure is well tolerated by pediatric subjects and free from complications. Impedance measurements suggest that the earlier switched-on subjects benefit of lower and more stable impedances than subjects undergoing 1-month switch-on."

 

Cochlear Implant with no external hardware

Fascinating article on the future of cochlear implants.

Researchers have developed a new, low-power signal-processing chip, which sits in the middle ear, that could lead to a cochlear implant with no external hardware. The implant would be wirelessly recharged and would run for about eight hours on each charge.

Cecilia - A little girl who changed our lives

The night before Lily's implantation we watched a marketing video from Advanced Bionics about a little girl named Cecilia who received a cochlear implant around the age of two.   She was independent, confident, talking, seemed really smart and had great parents.  We loved her and always wondered what happened to Cecilia?  This was a little girl who helped us believe Lily's CIs were going to work. 

I had an update a few years ago from Mary Koch, her therapist in the video, and then tonight I stumbled upon this jewel.  An update video.  Today Cecilia is at the top of her class and an accomplished athlete.  She's getting ready for college.  Celilia said she couldn't imagine a life without sound.  What a great way to end the day. 

Check out the Alfred Mann Foundation (http://aemf.org/)  and scroll to the bottom of the first page for the video.

Lily's quoted in the newspaper

Reading the morning paper, I saw a story about Lily's elementary school and a new local food program.  Half way through the article I read, "First-grader Lily sat in the elementary lunchroom, bit into the day's barbecue-coated lesson and summed up her experience with a single word:  Delicious."   The reporter was directed to Lily because the Vice Principal knew Lily would have something positive to say.  HA!  

Lily now thinks she is famous and wonders when Bodie will be the newspaper.   Just another amazing day!

Gene therapy to improve cochlear implants?

Facinating article on new research that has investigated the possibility of using gene therapy to prevent the death of nerve cells in the inner ear in people with certain types of progressive hearing loss.

Family uses media effectively to gain cochlear implant coverage

Great story of a family overcoming an insurance denial by Conventry for Cochlear Implant coverage.  He even received Advanced Bionics.  

 

Lily's Card Shop

Sharing a entrepreneurial spirit with her Dad, Lily describes her card shop.  

 

Study: Hearing preservation

Interesting study on Hearing preservation for Cochlear Implant outcomes.

http://www.audiologyonline.com/articles/effects-hearing-preservation-for-cochlear-12078

 

New device helps understand how brain processes info from a CI

A new imaging device was launched on campus today, helping researchers in the ARC Centre of Excellence in Cognition and its Disorders (CCD) and HEARing Cooperative Research Centre (CRC) better understand how the human brain processes information from a cochlear implant.

For the first time, scientists can use a well-established brain imaging technique called MEG, or magnetoencephalography, to measure brain function in recipients of cochlear implants, including young children. The new device overcomes the electromagnetic restrictions of cochlear implants, enabling researchers to gain valuable insight into this established and effective solution for people with hearing loss.

More

 

Cochlear Implant history and pioneers

The 2013 Lasker~DeBakey Clinical Medical Research Award honors three scientists who developed the modern cochlear implant, a device that restores hearing to individuals with profound deafness. Through their vision, persistence, and innovation, Graeme M. Clark (Emeritus, University of Melbourne), Ingeborg Hochmair (MED-EL, Innsbruck), and Blake S. Wilson (Duke University) created an apparatus that has transformed the lives of hundreds of thousands of people. Their work has, for the first time, substantially restored a human sense with a medical intervention.

Check out their incredible video interview of cochlear implant pioneers Graeme M. Clark, Ingeborg Hochmair and Blake S. Wilson and an extensive description of the history of the development of the cochlear implant. 

It's hard to believe the FDA only gave its inaugural approval to a multichannel cochlear implant in 1985 for treating adults who could hear before they went deaf. 

Class presentation on cochlear implants and other fun stuff

Lily and I have now given two presentations on hearing and cochlear implants at her school.  The first was a presentation to her own class.  We started by asking if there was anything different about Lily.  One child said she had braids in her hair.  Then another one said she had strings on her back.  Love it.  Lily answered all their questions, showed off her Buddy/Melody and American Girl Doll with CIs, and tried to act out each point we made about Dos/Don'ts, FMs and how her CIs worked.  The kids were most interested in the FM and radio waves, as well as the stuffed animals. 

Then one day after school a third grade teacher, who was instructing her class about sound, asked if we could come talk about Cochlear Implants and hearing.  Her class had read a small piece about cochlear implants in their textbook and they were very interested in the subject. 

This presentation was a little more complex with descriptions of the ear, why people have different types of hearing, how a CI works and then questions.  Every child had their hand in the air and they asked dozens and dozens of terrific questions until the bell rang.  They all said that they had tubes or an ear infection at one point, so they could understand when someone was not hearing as well.  A very compassionate bunch.   Their questions ranged from how does a CI work to what happens if someone can't pay for an implant. 

We tried to inspire the students to become scientists, engineers or inventors that helped people.  At the end of the presentation, Lily had taken her headpieces off to "demonstrate" so many times, that her batteries died.  I'd left my purse in the car, which always has batteries in it, and Lily had left her backpack down the hall, which also has batteries in it. 

So....in a small panic...I looked around and saw remote controls in front of me.  I began to open them up and in the second remote I found a AAA battery.  I took it out, put it in Lily's CIs and crossed my fingers that it had enough power.  It worked.  The third graders cheered and clapped and thought it was very cool. The teacher said Lily may now have a third grade "fan club."  LIly was perplexed by the comment, but soon was thrilled by the idea.  Always a language opportunity. 

Advanced Bionics releases new Naida CI, electrode and HiRes Optima

Advanced Bionics has just introduced the Naída CI Q70 (Naída CI) processor, HiFocus™ Mid-Scala electrode, and HiRes™ Optima Sound Processing. 

With Naída CI, AB brings performance and wireless connectivity and now cochlear implant recipients have access to the combined technologies of AB & Phonak.

Benefits of new Naida CI:

• 55% improvement in speech understanding in noise when AB ClearVoice™* and Phonak UltraZoom features are used together
• 100% wireless connectivity—streaming from consumer electronics by leading brands, including Apple, Samsung, and Nokia
• All-new Binaural VoiceStream Technology™ designed for improved hearing in noise
• Bimodal streaming—media can be streamed to a compatible Phonak hearing aid and a Naída CI sound processor at the same time!
• 40% smaller than the previous behind-the-ear sound processor—incredibly lightweight for barely noticeable on and off-ear comfort
• First-ever bilateral feature for easy use and peace of mind—each processor can be programmed for both ears so the best ear can still hear if a second processor is misplaced
• Compatibility with AB performance innovations, including ClearVoice, AutoSound™, HiRes Fidelity 120™*, and HiRes Optima Sound Processing
• All-new, discreet T-Mic™ 2 microphone

In addition to the Naida CI Q70 Advanced Bionics has also recently received approval for the HiFocus Mid-Scala Electrode (designed to protect the delicate structures of the cochlea) and for HiRes Optima Sound Processing (which offers optimized battery life)!

We are definitely going to get the HiRes Optima soon for Lily's Neptunes.  It's another trip to the audiologist, but well worth such an increase in battery life.  

Currently, Lily's batteries will die around 4pm.  She is starting extracurricular Spanish class this week that, you guessed it, ends around 4pm. So what should I do?  Go to school and change the batteries between school and class?  Ask the teacher to do it?  Or get this HiRes Optima ASAP. 

We'll also be investigating the Naida CI which looks exciting, although we love her Neptunes.  Lots of exciting new options to think about.  

CI Toolkit for parents and teachers

Recently I received The Cochlear Implant School Toolkit which was funded by a Small Business Innovation Research Grant from the National Insitute on Deafness and other Communication Disorders for review. 

Included in the toolkit were:

• A Parent’s Guide to help parents prepare their children, their children’s schools, and themselves for their children’s entries into mainstream classrooms
• A lesson plan and DVD for typical children with activities to create peer acceptance and to smooth the integration of children with cochlear implants into mainstream classrooms
• A website with supportive and interactive features for parents, teachers, and children
• A Teachers’ Guide & DVD that provide concrete strategies and examples for teaching a student with a cochlear implant, tips for creating an inclusive classroom, suggestions for classroom modifications, and testimonials from parents and teachers who have been through the mainstreaming process with a child with a cochlear implant.

All of the pieces are well done and an impressive advisory panel guided the toolkit's development. 

The research-based teacher's toolkit should be standard reading for each teacher that has a child with a cochlear implant.  The guide has been espeically useful for Lily's school.  Lily's teacher is very willing and open to learning everything and anything we provide to her.   It includes basics information such as learning about CIs and hearing loss, working as part of a TEAM, understanding challenges, setting up a classroom and refining and reporting your progress.  It is easy and quick to read while providing tons of resource materials. 

The company that developed this toolkit is also working on The Cochlear Implant University which will support high school and college students with cochlear implants and their parents as the student transitions to higher education.

The toolkit is a must read for all famlies and teachers who work with kids with Cochlear Implants. 

Cochlear Implant Balance Research Study

We've participated in various cochlear implant research studies over the past five years because we feel it's important to give back and help advance the field.  

Last week, Lily was in a balance study at Boystown that was trying to determine if there was a connection between cochlear implantation and balance issues.  The researchers asked Lily to walk, hop, stand on a balance board, spin around in the dark, do eye tests while shaking her head and twist her head for some kind of nerve measurement.  

We learned that Lily had great balance and eye sight.  The physical therapist said that knowing she reads really well and can ride a bike without training wheels also indicates that there are no balance issues. All in a days work!

 

Lily's first piano recital

Lily, age five, has her first piano recital after five months of lessons.  We call her Beethoven, she calls herself Lady Gaga.  In the video she is performing Twinkle Twinkle and This land is your land. The set up takes longer than the song. 

The early laugh came because the paper clips we had on the pages flew off when she opened the book.  Near the end of the second song you can hear her brother cheering her on when he shouts her nickname "Coocoo."

With Cochlear Implants and determination, anything is possible.

 

Auditory Brain Stem Implants for children in the US

If a Cochlear Implant doesn't work for a child with no auditory nerve, there may be a new option in the US. Check out this recent story about a 3 year old boy implanted with an Auditory Brain Stem Implant.  

This type of implant has been used in Italy for three or four years now, but this is a first Brain Stem implant for a child in the US.  So exciting.  Researchers are not sure if it will give the child full access to language but it certainly gives the child sound.  Great video demonstrates the child's reaction to sound.  

Phonak's new Roger

Exciting new update by Phonak with Roger. 

"a new digital standard that bridges the understanding gap, in noise and over distance, by wirelessly transmitting the speaker's voice directly to the listener. Available for the education market beginning Summer 2013, Roger is designed to surpass today's Dynamic FM and equivalent digital systems."

Check out The Hearing Review for more information

More at Phonak

Oberkotter Foundation establishes new national center for professional learning in LSL

Oberkotter Foundation plans to establish a new national center for professional learning in listening and spoken language. It will be launched in spring of 2015. 

This is such a needed resource to support professionals teaching children with hearing loss.  It can't come soon enough. 

Optimizing cochlear implant programming

Here's some research I'm watching for improved CI programming.

At Vanderbilt University they are performing Image-based frequency reallocation for optimizing cochlear implant programming.

The major goal of this project is to assess the clinical utility of an image-guidance system for Cochlear Implant (CI) programming assistance that we are currently developing. For each CI recipient who participates in this research study, state-of-the-art image processing methods are employed to detect, using pre- and post-implantation CT, the position of the CI relative to the neural stimulation region and to analyze electrode stimulation patterns. Using the important information these spatial analysis techniques provide, we reprogram the CI recipient’s processor. Programming parameters include which electrodes are active, determining the relative power of each electrode, and determining an electrode frequency allocation table. Improved hearing performance for research participants will demonstrate that image-guidance can lead to more effective CI programming and better hearing restoration.

 

Chinese Cochlear Implant

Nurotron, a Chinese cochlear implant has been launched in the Chinese mainland for patients aged six and older. In China, there are 28 million deaf people and 30,000 babies born without hearing each year. Priced at $16,000, this could have a interesting impact on the implant market. 

AB swimming girl

During swimming lessons, Lily kept knocking her Neptune waterproof headpieces off with her goggles. We pulled out the AB swim cap and like magic, the headpieces stayed on and she didn't spend most of the time readjusting them. 

Lily loves the stretchy purple cap.  When she saw the big AB on the side, she announced that she was an "AB girl."  She also asked me how she did swimming lessons when she couldn't hear in the water.  It's only been a year since she received her waterproof Neptunes, but already she has forgotten the water challenge.  Thank you AB.  You should see her swimming skills!  

Cochlear Implant Insertion Video

Fascinating video of a Cochlear Implant electrode array being inserted into a cochlea. 

 

New mapping strategy

Vanderbilt has developed a new mapping strategy which is worth watching. Adult Cochlear implant users report dramatically better hearing with new process.

Interview with Advanced Bionics Senior Execs

Facinating interview with Senior Executives at Advanced Bionics by our friend Howard.

It will give you a lot of hope for the future of hearing with cochlear implants.  

Dana Suskind, CI Surgeon and language advocate

Loving this recent article in the Chicago Tribune about Dana Suskind, a Chicago area CI Surgeon and language advocate.  Her research program, outlined below, particularly resonated with me.  

Teaching parents about the importance of language is a key component that must drive early intervention engagement.  Tools like LENA help bring awareness to how much and how you are talking and it gives parents a 30,000 word benchmark for real direction.  And this could be applied to any family, not only to those with a child with hearing loss.  

Suskind worked with her University of Chicago colleagues to launch 30 Million Words, a program that sends research assistants to the homes of at-risk children for 13 weeks and educates their parents about the importance of engaging their children in an ongoing dialogue — and, equally important, offers them the tools to do so.

Researchers work with the parents to develop weekly word goals, with an ongoing emphasis on "the three Ts: Tune in, talk more, take turns," Suskind says.

"Babies aren't born smart," she says. "They're made smart. And how are they made smart? Your words."

"All parents should be allowed to know the power they have. If we can change how parents view their language and the power they have to impact their kids' trajectories, it will be amazing."

 

AB's new BTE and eletrode

New information is coming out on Advanced Bionics' new Behind the Ear (BTE) processor.  Check AB's website for all the latest details. 

Also reports of a new HiFocus Mid-Scala Electrode from Advanced Bionics which has recently received approval in Europe.  See press release for latest info. 

 

Neptune Batteries - My discovery

I can't believe I haven't posted my amazing discovery about longer-life AAA batteries for the Neptune.  

Lily wears bilateral Neptunes and also typically wears bilateral FMs all day at school that drain her batteries.  We were having trouble with the regular rechargable Duracells making it through the school day. They were also very unpredicatable. 

Then I discovered Rechargable Duracells - Stay Charged.  We now get almost 10 hours of power.  These little batteries have changed our life dramatically, as well taken the burden off Lily's teacher. 

I also see on the Duracell website that they now have a "Quick Charger" and a "15 minute Charger."  These might have to go on our next Wish List. Our current charger takes around 9 hours to charge, so it leaves little room for recharging user errors.   Ahhh technology!

Music perception - What can Lily hear?

I had a wonderful discussion with one of our blog readers about how Lily might hear the different notes on the piano.  I'm appreciative of her expert explanation and feedback.  
 
Lily, depending on where you play the notes on the keyboard, may be able to tell the difference of 1-4 semitones. In some areas, she’ll be able to tell you that C-C# sound different (when not looking) but may not always be able to tell you which direction they are going. In other areas of the keyboard, she may have to have C-E or larger to tell a difference. In addition, most implants are programmed for speech at around 250Hz, which is the F# below middle C. This usually knocks out the rest of the notes below there, but not always. Her larger challenge would be telling major from minor chords (and honestly, as a trained musician, it can be challenging).
 
Regarding music you have ‘The Good, The Bad and the Ugly.’  The good is rhythm, the bad is timbre and the ugly is pitch. Mainly that is  because rhythm is a significant part of speech and helps us so it’s conveyed very well. Timbre, the ability to detect different tone qualities is harder, but can be learned.   It is hard because of its complex spectral quality. Think about how similar a clarinet and saxophone sound, for instance, now add in the complexity of a cochlear implant’s processing strategy.  Finally,pitch is the hardest, simply because you and I have 30,000 hair cells (each of which responds to one frequency) and Lily now has 18 electrodes to represent those same 30,000 hairs cells. That’s not to say she won’t be amazing (she clearly already is), but that she may have a “sweet spot” for certain types of music perception and production (ie., singing on key in a specific range).

Then Lily's fabulous music teacher, who shows so much interest in this topic (thank you), told us the following:

Semitone is another word for a half step, which would be the difference between one note next to another one on the piano, like B-C, E-F, or B flat-B. Lily was able to sing descending Major triads starting on Eb (E flat) and ending on G below middle C (which is pretty low for a kindergartner) So she sang descending triads in the Major keys of Eb, D, Db, C, B, Bb, A, Ab, and G. I'm convinced she can hear the difference between 1 semitone.

Amazing!