Life is Bliss - Lily's Cochlear Implant Journey

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?

Hearing Our Way Magazine

Interesting new magazine called Hearing Our Way for children and teens with hearing loss.  Subscribe on the website to get a free subscription mailed to you today.  

Hearing Our Way is an educational magazine for children and teens with hearing loss designed with language, listening, self-advocacy, and cognitive skills in mind. Independent readers will enjoy the magazine on their own, though students of all ages and reading levels can benefit from using the magazine as a classroom reader guided by a teacher or parent. Articles and features are great discussion starters, and content can be easily implemented into current curriculum, IEP goals, and Common Core standards. 

 

 

 

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. 

Dale Sindell at TEDxCibeles

As a big TEDx fan, I found this talk by Dale Sindell of TEDXCibeles in Madrid fascinating.  (TEDx speakers page)

Dale started losing her hearing at age 19.  After graduating from college, she moved back to Spain, got married and soon lost the rest of her hearing.  Somehow she continued to work in a variety of career roles and then had children, which resulted in her youngest child being diagnosed with hearing loss. 

At that point Dale founded t-oigo.com, a non-profit virtual community which provides information in Spanish for people with hearing loss. Today 30,000 users follow her site each month.  She's also an advocate for bilingual education - Spanish and English for kids with hearing loss.  Such an inspiration. 

 

Vision Loss Boosts Auditory Perception

A facinating new study found that when "they kept adult mice in complete darkness for one week, the animals’ ability to hear significantly improved. What’s more, when they examined the animals’ brains, the researchers detected changes in the connections among neurons in the part of the brain where sound is processed, the auditory cortex." 

"At least in mice, it appears that the brain responds to sensory loss by swiftly reallocating connections among the remaining senses, perhaps providing the animals a better chance at survival.  This could mean that someday people with hearing loss, or other sensory disorders, may be able to  selectively rewire their brains."

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?

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.

Importance of classroom acoustics - Presentation

Incredible flash presentation on the importance of classroom acoustics from Northern Illinois University. 

It gives the viewer a great overview of the terminology and strategies to improve classroom acoustics. 

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.  

 

Barriers for children with hearing loss K-12 in the classroom

New report released by the Laurent Clerc National Deaf Education Center at Gallaudet University to describe the barriers that children with hearing loss aged birth to 21 face in the classroom and with school administration.

Supporting Success for Children with Hearing Loss

Supporting Success for Children with Hearing Loss is a great new resource filled with information about the learning and social issues of children with hearing loss and what you can do to better support the future success of these children. Resources are at no cost, designed to be easy to understand quickly, and practical to use.

Hear to Learn coverage - LJS

Thankful for more coverage of our Hear to Learn celebration - Moms give thanks — loud and clear — to supporters of amplifier project in the Lincoln Journal Star

 

Huffington Post Coverage of Hear To Learn Project

Lily's Mom is amazing (regular readers already knows this). As usual she continues to make an impact for Lily and others. Today she got some much deserved national coverage for her Hear To Learn project to bring amplification to elementary schools here in Nebraska. Check out the Huffington Post blog post and the video (Lily makes a cameo as well).

Technology Can Help Ensure Our Students Hear, Learn, and Achieve.

So proud of the work she does day in and day out.

 

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

 

Hearing is all about the brain

Good article on How the brain processes auditory signals.  It's not that easy.  

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.

Hospital Tweeted a Cochlear Implant Surgery

This morning, in an effort to raise awareness and to provide the public more information on cochlear implant surgery as a viable treatment for hearing loss, the Swedish Medical Center in Seattle became the first hospital to live-tweet a cochlear implant surgery.  The live-tweeting will also include live-instagramming of photos from inside the operating room.

On Twitter see @Swedish or #SwedishHear

 

Nebraska Early Hearing Detection and Intervention Annual Report 2011 - Newborn Hearing Screen Results

The Nebraska Early Hearing Detection and Intervention Annual Report for 2011 has just been released.   This is a must read for anyone trying to gain a broader understanding of the hearing detection and intervention work being done in Nebraska.  (See PDF of 2011 Newborn Screening Annual Report) 

Some of the interesting highlights include:

• Hearing Screens were reported on 25,746 newborns or 98.98% of those born, prior to discharge from the hospital.  This is a dramatic increase since reporting began in 2000, when only slightly more than one-third of newborns received a hearing screening during birth admission.
• 94.92% of newborns passed the inpatient hearing screening, 4.06% did not pass the screening, .64% did not receive inpatient screening and .37% of newborns died.
• 114 infants received a complete audiologic evaluation.
• 43 infants were diagnosed with hearing loss in one or both ears.  Thirty-four were identified with bilateral hearing loss and nine infants were identified with unilateral hearing loss.  The degree of hearing loss breaks down as 33% profound, 12% severe, 46% moderate, and 9% mild.  
• 74% of the 43 infants were referred to the state's early intervention Early Development Network within six months, 9.3% were referred after six months and 16.3% were not referred directly by the audiologist or medical home.    
• There are currently approximately 770 children in Nebraska who are identified by the Nebraska Department of Education with a primary diagnosis of deaf or hard of hearing.   

 

Why employers should care about hearing loss

Good commentary about the cost of addressing hearing loss in the workplace.   

ClearVoice - Interview with Advanced Bionics

Interesting technical Interview with Tracey Kruger, VP of Marketing at Advanced Bionics, discussing ClearVoice Speech Enhancement Technology.

"ClearVoice is intended to help AB recipients hear better in very difficult listening situations. It analyzes the environment and separates the sound coming into the microphone into different bands. It analyzes each band to determine whether or not the information in it is primarily a speech signal or unwanted noise. It is the first algorithm available in the market that enhances speech, improving the signal-to-noise ratio, to help recipients hear better in very, very challenging listening situations."  

Lost and Sound - A new documentary

Lost and Sound is a new moving creative documentary, made by a partially deaf filmmaker.  It weaves its way through a startling world of sound and silence, via the ears and brains of these extraordinary people as they try to re-discover music after deafness: a dancer deaf since birth, a young pianist who lost her hearing as a baby, and a music critic facing sudden partial hearing loss.

Deafening Affects Vocal Nerve Cells Within Hours

Interesting article showing that portions of a songbird's brain that control how it sings have been shown to decay within 24 hours of the animal losing its hearing.  Sceintist predict something similar likely to happen in human brains as well.

3 1/2 month old receives Cochlear Implant

A 3 1/2 month old baby has received a Cochlear Implant in Oman, Middle East.   As an advocate of early implantation, this is incredible.   What an opportunity for this child to gain all the listening and learning that comes as an infant.  I've heard of one other child being implanted around 4 months in California. As early becomes "standard,"  I hope it causes U.S. doctors and the FDA to look closely at the 1 year recommended implant date.    

Inside of the ear video

An interesting 7-minute video that takes viewers through the inside of the ear, to the acoustic accompaniment of classical music.  A narrator describes how the sound waves travel through each portion of the ear, and how hair cells translate the vibrations they induce into nerve impulses.  

For anyone trying to understand how the ear works, this is the video to watch.

 

AB's Neptune Cochlear Implant Approved - WoooHoooo!!!

To say we're excited about Advanced Bionics's Neptune Cochlear Implant being approved by the FDA is an understatement!!!  Now how fast can Lily get one and get in the bathtub or the pool or the beach or get the next greatest thing - ClearVoice?  Let the the countdown begin. 

Advanced Bionics is thrilled to announce that the NEPTUNE™ sound processor has received FDA approval in the United States. Now AB recipients and candidates have the choice of a Neptune or Harmony sound processor for hearing their best with AB.

World’s First Waterproof Sound Processor
AB continues our history of innovation leadership with Neptune, the first and only SWIMMABLE sound processor in the world. Whether you or your child enjoy taking a dip in the pool on a warm day or bonding at baby bath time, Neptune delivers hearing during those important moments.
 
Industry’s First Freestyle Design
The lightweight Neptune processor features the industry’s first freestyle™ design, allowing you or your child to hear the world with the comfort and beauty of nothing on the ear. Neptune gives you the freedom to choose your wearing style—in your hair, on your arm, under your collar, or in your pocket—without compromising performance. Whether you want to show it off or tuck it away discreetly, the freestyle design lets you wear it just how you like.
 
Usability and Durability
Built Kid Tough™ for rugged use, Neptune is ideal for every age and every lifestyle whether you live in a humid area, love to swim, enjoy sports, connect in the classroom, or travel across the globe. Neptune carries an IP68 rating that offers maximum protection against solid particles and various forms of moisture, which means that you can hear your best in all weather, all sports, and all terrain.
 
Performance
To ensure you hear your best all of the time, Neptune is compatible with the industry’s most advanced hearing technology for the best possible hearing performance, including ClearVoice™, HiRes Fidelity 120™, and AutoSound™.

For more information

Hearing loops go mainstream

Hearing accomodations are becoming mainstream, not only because of ADA but also for good customer service.  Check out this recent article in the NYT about hearing loops.  

Mild hearing loss = Brain Atrophy in Older Adults = Early Intervention

Interesting article in Science Daily

A new study by researchers from the Perelman School of Medicine at the University of Pennsylvania shows that declines in hearing ability may accelerate gray mater atrophy in auditory areas of the brain and increase the listening effort necessary for older adults to successfully comprehend speech.

Technology has changed the teaching of deaf students

Interesting article from the National Association of State Directors of Special Education concluding that Technology has changed the teaching of deaf students

Hearing Care in Developing Countries

Great article explains promise and challenges of bringing hearing care to developing countries.

Parents Magazine Covers Cochlear Implants

Great article in the most recent Parents magazine discussing kids and cochlear implants.  

The author, Debbie Waldman, did a great job capturing a positive story about the very engaged Bennett family and their 4-year old daughter.  

It is a real story about a little girl who receives Cochlear Implants and now talks like a champ in a mainstream environment.  This story is sure to educate all families about hearing loss and give those families hope who find themselves on a hearing loss journey.  

It also avoids the old tired story that is often covered in the media which says deaf people hate cochlear implants.  While there certainly are haters, this attitude is rapidly changing.  

Ironically, Lily was going to be the featured kid in this article.  

We spoke with the author at length, multiple times, over two years ago.  It seemed that because Lily was implanted at 10 months (before the 1 year FDA guideline), Parents Magazine editors were worried about running her story.  

Alas...Cochlear Implant implantation before one year is fairly standard and the research continues to show that earlier is better.   While we're disappointed Lily's story wasn't told, we are thrilled that this article ran.  It's a story that should be told every year!!   

Thanks Parents magazine for covering an important issue that impacts thousands of families everyday.  

 

 

Phoenix was HOT

It was over 100 degrees everyday in Phoenix, but that didn't deter us from seeing the (air conditioned) sites. From the Diamond Backs to the Science Museum, there was lots to see, do and talk about.  

We swam everyday to stay cool and even saw a guy with an AB CI at the In-N-Out Burger.  Lily's Dad loves this place.  Good eats.    

The biggest take away for Lily was the saying "Don't hug a cactus, unless you have practice."  With so many cactuses, we heard this phrase a lot.  Lily also enjoyed talking about the lady's voice on the GPS and asking endless questions about how the GPS knew where we were.    

Nebraska EHDI Program Community Outreach Coordinator

The Nebraska Early Hearing Detection and Intervention Program (NE-EHDI) seeks a qualified candidate for a half-time (20 hours per week) position as a Community Outreach Coordinator (Staff Assistant II) at $14.897 an hour.

 

This position will be hired through the State of Nebraska’s temporary employment office and is grant funded. The Community Outreach Coordinator will need to have time flexibility working opposite hours of the Community Health Educator Audiology Graduate Student, and be comfortable in shared office space. Hours will vary according to the Community Health Educator’s II class and clinic schedule changes each semester.

Under limited supervision, this person performs outreach via phone, fax, and mail, to families identified with a baby or child who is deaf or has a hearing loss and assists the Community Health Educator with reducing children “lost to system.” The Community Outreach Coordinator will need a broad understanding of issues faced by families with a baby or child with a hearing loss. Strong communication skills, ability to work independently and collaboratively with others, knowledge of appropriate community services and support, ability to work with diverse families and provide unbiased information, detail-oriented, and ability to maintain client confidentiality. Prefer individuals who have experience working with children who are deaf or hard of hearing. Bilingual skills in English and Spanish a plus.

 

For more information or send resume to: Kathy Northrop, Program Manager Nebraska Early Hearing Detection and Intervention Program 301 Centennial Mall South Lincoln, NE 68509-5026 [email protected]

 

Deaf Education Evolving with Implants

This article describes the impact of cochlear implants on teaching methods for kids who have hearing loss.  Like the Omaha Hearing School, the article provides a good description of the Clarke School for Hearing and Speech, an oral preschool.  While teaching methods are not one-size-fits-all, when children have access to sound at a very young age, an Oral approach maximizes that opportunity for listening and spoken language learning.

99-year-old gets Cochlear Implant

It's never too late to improve your hearing.  A 99-year-old gets a Cochlear Implant.

Hearing Loss Infographic

Great Hearing Loss infographic from Rachel at Cochlear Implant Online

Storing Sounds In The Inner Ear

Do we store sounds in the inner ear?  Interesting research article exploring this theory.

Microphone Array Embedded in Eyeglasses

Interesting research article on Microphone placement embedded in eyeglasses for CIs or hearing aids.

Is Noise Killing You?

A recent Fast Company article highlights a new study from the World Health Organization and the European Commission's Joint Research Centre.

"The report, Burden of Disease From Environmental Noise, claims that western Europeans lose up to 1.6 million years of healthy living annually from noise pollution, compared to 4.5 million years lost for air pollution (noise is only second to air pollution in environmental hazards, according to WHO)."

Click here for the WHO report (PDF download).

Flintstones Hearing Loss Video

Fascinating Flintstones video demonstrating how various hearing loss sounds from a Mild loss to a Severe loss.  

1-Sided hearing loss lowers language skills

Interesting article on the impact that even a unilateral hearing loss can have on kids.

“Now our study has shown that, on average, children with hearing loss in one ear have poorer oral language scores than children with hearing in both ears,” she says....“Parents, educators and pediatricians shouldn’t assume that having hearing in one ear means children won’t need additional assistance.”

3D Sound?

Here's a story about virtual reality with 3D Audio.  This professor has found the musical sweet spot for sound.  Think of the potential application in hearing aids or Cochlear Implants.  

"Surround-sound can give you a sense of an explosion happening at a distance, but it's not accurate," says Professor Choueiri, sitting in his custom-built acoustics lab on campus.  "With 3D audio, I can get a fly to go around your head… or if you want to really scare somebody, you can put a sound inside their head." 

 

Audiologist - 9th Best Job for 2011

According to careercast.com  - Audiologist is the 9th best job for 2011.   Good work environment, low stress, low physical demand and strong hiring outlook. Average income: $63,208.00

Annual Noisy Toy List

Did you purchase any of the 2010 Top 10 Noisiest Toys?   Each year, the Sight and Hearing Association, along with researchers from the University of Minnesota, tests toys and puts out a list to help parents combat hearing loss in children. 

Hearing loss can be cumulative, meaning that hearing loss occurs from being exposed to loud noises consistently, over time.  Avoid toys that are louder than the recommended 85 dB.  

2010 Ten Noisiest Toys

1. Bell Riderz Block Blaster  from Bell Sports, Inc. - 129.2 dB
2. Cars Shake ‘N Go Ramone from Mattel, Inc. -.119.5 dB
3. Transformers Optimus Prime Cyber Sword from Hasbro - 110.1 dB
4. True Heroes Sonic Battle Blasters from Geoffrey, LLC - 110 dB
5. CAT Mini Mover from Toy State Intl Ltd. - 104.8 dB
6. Rocket Boost Iron Man 2 from  Hasbro - 103.2 dB
7. Road Rippers Rush & Rescue Fire Truck from Toy State Intl Ltd.-101.6 dB
8. Interaction Morris from Learning Curve Brands, Inc. - 98.7 dB
9. Proto Bat-Bot Figure from Mattel, Inc. - 98.6 dB
10. CAT Honk & Rumble Wheel from Toy State Intl Ltd. - 96.6 dB

New test can screen all deafness genes

Gene testing is fast moving.  Here's the latest research from one of my favorite Universities.  For $2000 and 1-3 months, their new test, which will be out in the spring, can screen all known deafness genes.  

Wisconsin Study and Bilateral Cochlear Implants

Interesting article about the Wisconsin research study on bilateral Cochlear Implants that Lily was involved in and more proof that bilateral CIs make a big difference. 

Noise At The Office

As the father of a child who hears with cochlear implants, better acoustics is a hot button issue to me as you all know. Sound quality has a profound effect on productivity, stress-levels, and all kinds of communication issues. Thankfully new research is looking into the effect noise has on people’s experiences. The linked article at Harvard Business Review provides info on some sound strategies, research and tips for making your office environment more sound friendly. 

Deaf people can "rewire brains"

Interesting article from the BBC about the power of the brain and what happens when you don't use parts of it.  People with hearing loss likely have a better visual field.  

This has always been my theory about young children learning language and why it is critical to frontload all services to take advantage of early brain development.  

Screening Newborns for Hearing Loss - New Research

New research supporting the benefits of the Newborn Hearing Screening.  

Nebraska has mandated newborn hearing screening and that is how Lily's hearing loss was identified.  

Even when babies fail their hearing screens in the hospital, not all parents are following up with immediate tests. That means many deaf and hearing-impaired babies aren't getting the early intervention, such as hearing aids and language therapy that they need for long-term success. 

Doctors aim to provide babies with hearing aids by 3 months, although they can be fitted with the devices as early as 1 month.  The earlier that kids get help, the better.