Life is Bliss - Lily's Cochlear Implant Journey

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. 

 

2017 Lily Update and More

We think about Lily's hearing everyday, but life now seems pretty normal. Hearing doesn't limit Lily's activities or experiences.  In fact, she seems to gravitate to all things talking, listening and music.

I wanted to summarize Lily's activities and growth through 2017 starting with two videos that featured Lily as a guest host.  These videos were targeted to fourth graders and highlighted special things about Nebraska.

 

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.  

 

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 First - Impressive new LSL resource

Hearing First is an impressive new resource that presents the various aspects of a Listening and Spoken Language (LSL) approach.  

http://www.hearingfirst.org

Through a variety of informational resources, families and professionals can use this site to learn about strategies used to improve outcomes when teaching children with hearing loss to talk and listen.  

Language-rich preschool for Bodie

Lily's brother Bodie has just started his second semester of preschool.  

We selected a language-rich preschool run by a woman who was trained as a hearing resource teacher and who continues to serve kids with hearing loss.  Of course Bodie knows all about the FM that the teacher wears.

We love the intentional teaching and targeted language incorporated into the lessons.  Teachers trained with a strong listening and spoken language (LSLS) focus for kids with hearing loss are able to extend those incredible skills to improve the language of all kids.  

Bodie already has an impressive vocabulary and doesn't stop talking. Takes after his sister!  Who would have ever predicted that!  

 

 

 

Zombie Lily

When a Zombie Walk was held in our town, Lily knew she had to be a part.  Such a fun day for the kids to act like zombies and of course tons of new language opportunities.  

There are no real rules or expectations for what zombies do.  Just look creepy and dead!   Ha!  

Lily's new profession - Forensic Scientist

Lily has long wanted to be an otolaryngologist, teacher, pediatrician, Cochlear Implant designer, Mom and a million other professions, when she grows up.  

However, a new profession, Forensic Scientist, has now entered the mix.  Although Lily has no interest in blood and guts, this new career is closely related to her love of spies and mysteries.  

Flower Girl Experience

A few months ago, Lily got to live out one of her bucket list dreams of being a flower girl for our friends' wedding.  It was a beautiful night with an equally fantastic flower girl dress to match.  Lily stayed on her best behavior, walked down the aisle on cue and danced the night away.  

The only challenge came when trying to communicate in a big converted warehouse that had been transformed into a wedding reception environment. 

Lily occasionally looks to me as her "oral translator" in noise and unless we explain or point out Lily's hearing loss, it often goes unnoticed.  However this night, one of the guests asked why I was repeating everything they said...weren't they speaking English?  I had Lily explain that she uses CIs to hear and that noise was often challenging.  It was a great learning moment. 

 

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.  

 

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

IEP Goals - Second Grade

I share Lily's ongoing IEP goals to help other families in their hearing journeys.  

In IEP meetings, parents are always asked, "What do you want your child's goals to be?"  Especially in the early years, it's extremely difficult to know what is possible, what can help my child, or what should be without spending hours researching and contacting outside professionals for guidance.    

I hope by sharing our story, other families with similar journeys can use these goals as a starting place.  Each goal below has a complex matrix to measure progress.  

Goals:

1.   Contribute to discussions without dominating, accept topic of others by adding relevant information to the conversation and ask for clarification or for confirmation if not sure of what was said. 

2.  Given various coping strategies, Lily will have a conversation with her peers on the playground and in the lunchroom.  (These are noisy difficult listening environments)

3. Improve her ability to advocate for herself by increasing her vocabulary and understanding of the functions of the parts of her CI and FM, her responsibility for monitoring her CI and FM system and by communicating her needs with her teachers.

Second Grade

Second grade seems to be going well.   We had a "pre-meeting" the day before school started with all the second grade teachers and new staff at the school. This was in addition to the regular IEP team transition meeting which also had new faces like a new SLP and Assistant Principal.  It reminded me of the critical need of training and re-training teachers to maximize the educational experience for our kids.   

The new SLP, who was just out of graduate school, told me that she's already met Lily.   Then she adds that as a student she attended our local parent group meeting Amplify, where we have SLP students "babysit" and she was able to meet kids with CIs.   Feels like a small success that this may have been her exposure to kids with CIs.  

Video - School Poetry performance

Lily reads her poem about bubbles during a first-grade poetry celebration.  

 

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. 

 

 

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. 

 

 

 

Destination Imagination Club

I just finished co-coaching a Destination Imagination group for Lily's school.   Our club contained nine first through third graders and we met each week to focus on Science, Technology, Engineering, Math and Art themes.  

Because this was the first year of the parent-led program, there was lot of experiementing and educating the adults, but overall it was a tremendous experience.  We explored issues of water, verhicles and transportation, communities, insects and spiders, space and animals.  

We discovered that these kids had limitless energy, imagination and creativity.   Hopefully Destination Imagination is one tool that can help to nuture and encourage this type of thinking for many years to come.  

 

Last day comments - 1st Grade

The following are comments made on a sheet of paper brought home today called "One thing I like about Lily Bliss is..."  Certain there were many examples provided for her entire class by her lovely first grade teacher, but it still may give us a little glimpse into the life of Lily.

Lily is funny, you are my friend, you are very kind, you are always listening (my favorite), you have very good hand writing, you are good at playing nicely, you are a good friend, you are very nice, you are very nice and funny, you are the smartest girl on the earth and you are so nice, funny and really smart, I like you, she helps me stay quite in the halls, you are helpful and kind, you are funny, you are nice, you are funny, you are funny, and you are nice. 

Teacher added:  funny, good friend, super speller, and learner.  

Hawaii Adventure

We took a pretty awesome trip to Hawaii in March, to celebrate my parents' 50th wedding anniversary.  I'm not sure why it took us so many years to get to Hawaii, of all the places we've traveled to in the world, but the experience was very memorable for all of us.   Bodie asks daily if we can go back to the pirate ship pool, while Lily often recreates the luau in her grass skirt.   

Exposure to a new culture and a variety of new words like Mahalo, Ohanu, Aloha and whale breaching were amazing, as were the beautiful sunsets and time with family.  Not sure what we would have done without Lily's waterproof Neptune processors.  We were in the pool, ocean or the rain everyday.  

We're currently searching for a yellow hardy hibiscus, Hawaii's state flower, and now understand the theme of Trader Joe's much better.  Need to find an excuse to get back to the other islands, or maybe just revisit Maui and Honolulu.  

We took hundreds of pictures and are currently working to get the photos down to a manageable number.  Just posting a few here to capture the Aloha spirit, to thank my parents for a wonderful trip and to preserve an amazing experience.

 

 

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. 

 

Science Fair: Social Contagion

LIly's second elementary science fair experience was a success.  She studied Social Contagion, the idea that if we observe people who are tired, sad or bored, we become tired and start yawning.   The same is true when we study people who are happy and laughing.  We feel happy and start smiling with those we observe.  

Of course it didn't take much encouragement for Lily to develop a video of herself acting out both roles.  

Next year we hope to complete a cochlear implant or acoustics study, but this year we didn't find the right approach for a first grader.  Backwards engineering or reprogramming her CI seemed a little daunting.  Last year's project measured the noise in her school (there's a lot of it!!).  

Let us know if you have any great ideas for a science fair project we could attempt. 

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. 

Talking to premature babies

Facinating new study about talking to premature babies by a team at Women & Infants Hospital of Rhode Island and The Warren Alpert Medical School of Brown University.

Researchers found that "Premature babies benefit from being exposed to adult talk as early as possible."  Preterm infants exposed to higher word counts at 32 and 36 weeks gestation have higher cognitive and language scores at seven and 18 months corrected age.

It makes wonder why families still have to fight for early implantation.

 

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!

Lily's shadow/brother

Being Lily's brother/shadow has its good times and bad.  Mostly good.  We already have Bodie swimming and he has taken to it incredibly quick.  No fear, just floating on his back. Lily stands ready during the lesson to assist with high fives and waving under the water.  

Last week, I also found Bodie perched next to Lily eating an after school snack and devouring a book.    I think Bodie already has that love of reading like Lily does.   While Lily doesn't read 10 books a day anymore, we try to encourage her to read at least one book or an hour of reading each day to build her language skills.   When not nestled up to Lily, Bodie's favorite spot to read is on Grandpa's lap.  They cover such favorites as The Fire Truck book, Tiny Hands and Max and Ruby. 

 

 

Understanding Harry Potter

After being invited to a Harry Potter birthday party, we figured that Lily/we needed to get up to speed on all the lingo, names, potions and culture surrounding the book series. 

Since that time, Lily has read the first Harry Potter book and watched the movie.   There are so many details, stories and characters to remember.  I can't keep them all straight.  After the party, Lily came home and turned our foyer into Diagon Alley, a street where Wizards buy their tools. Note the hat, cape, wands, owls, potion books, etc.   Such imagination and a switch from the "Lily's Rainbow Spa" which is a permanent fixture in our bathroom. 

 

 

 

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.  

 

Little Free Libraries

Over the holiday break we've hit a few of Lincoln's newest Little Free Libraries, a library craze happening all over the country. Their theme is "Take a book, leave a book."  

It was quite an adventure finding the libraries, discovering what was inside and then convincing Lily it was alright to take a book at each stop. She had them all read by the next day so we'll have to make another journey to return a few books in their place.  

By January 2014, thre are supposed to be 10,000 Little Free Libraries all over the country.   

 

Children's Creativity Museum San Francisco and Metal Slides

Lily's highlight in San Francisco was a trip to the Children's Creativity Museum.  It's a small children's museum, which has incorporated technology into nearly every exhibit.  

Lily loved the animation focus.   Not only did we complete a clay animation video, but Lily was also trained by world-famous sand animator Gerald Conn who was in San Francisco for an Innovators residency.  

Lily's segment is the purple and yellow jellyfish moving through the center of the screen.

Outside there is a park with the greatest metal slides known to man.  Lily was in heaven as she sailed down the slides with no fear of electrostatic discharge destroying her cochlear implant hardware or software.  Wish every playground could include options for kids with CIs.   Total joy!

 

 

The greatest museum ever! Exploratorium - San Francisco

We journeyed to San Francisco for a quick trip in December.   While we've been to San Francisco a number of times before, we had never been to the Exploritorium.  It's been open for 50 years, but just recently reopened on Pier 15.  WOW!  

I thought it was the best museum that we'd ever been to. That includes children's museums, science museums, and Smithsonian's all over the world.  The creators captured the balance perfectly between engagement and education, art and science.  There was even a large exhibit on Harold Edgerton, a Nebraska native who invented the strobe light.   Years and years of school science fair experiments in front of us.  We finished the day by riding a cable car ride which Lily insisted we try.  

Merry Christmas from Lily's family

Merry Christmas to all our blog readers.  We hope the information and inspiration we provide on this blog is helpful to you. We've loved hearing from people around the world about their own hearing journeys. 

It's certainly been a fun five plus years of documenting Lily's hearing journey and beyond.  Someday Lily will read this and be able see the journey she helped so many take with her.  

Life today is bliss.

 

Lily's Card Shop

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

 

Santa Claus visit

A great trip to see Santa today.   Lily is asking lots of questions like why don't all the Santas look the same?  How is it possible for Santa to get all over the world in one night?  Shouldn't he be working on toys, instead of talking with children all day?  

We've been ringing the Christmas bells and asking Lily if she can hear them.  She always says, "Yes I can hear them. I believe!"  (even when the bells aren't ringing).  Smart little kid!

Therapy via IPads for children with cochlear implants

Great story on using IPads for teletherapy in a program called BabyTalk.  For newly implanted children under three, this program helps babies in Northern California learn how to listen and speak.  It's a partnership between Stanford School of Medicine and Jean Weingarten Peninsula Oral School.  

Lucile is one of about 17 other hearing-impaired toddlers from across Northern California — from Salinas to the Oregon border — to participate in a new "teletherapy" program called BabyTalk, a collaboration between the Stanford School of Medicine's Department of Otolaryngology and the Jean Weingarten Peninsula Oral School for the Deaf in Redwood City. - See more at: http://med.stanford.edu/ism/2013/december/babytalk-1209.html#sthash.OYDThTLM.dpuf

Lucile is one of about 17 other hearing-impaired toddlers from across Northern California — from Salinas to the Oregon border — to participate in a new "teletherapy" program called BabyTalk, a collaboration between the Stanford School of Medicine's Department of Otolaryngology and the Jean Weingarten Peninsula Oral School for the Deaf in Redwood City. - See more at: http://med.stanford.edu/ism/2013/december/babytalk-1209.html#sthash.OYDThTLM.dpuf

Lucile is one of about 17 other hearing-impaired toddlers from across Northern California — from Salinas to the Oregon border — to participate in a new "teletherapy" program called BabyTalk, a collaboration between the Stanford School of Medicine's Department of Otolaryngology and the Jean Weingarten Peninsula Oral School for the Deaf in Redwood City. - See more at: http://med.stanford.edu/ism/2013/december/babytalk-1209.html#sthash.OYDThTLM.dpuf

Lucile is one of about 17 other hearing-impaired toddlers from across Northern California — from Salinas to the Oregon border — to participate in a new "teletherapy" program called BabyTalk, a collaboration between the Stanford School of Medicine's Department of Otolaryngology and the Jean Weingarten Peninsula Oral School for the Deaf in Redwood City. - See more at: http://med.stanford.edu/ism/2013/december/babytalk-1209.html#sthash.OYDThTLM.dpuf

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.

Long-term improvements in oral communication and peer relations in children with CIs: parental testimony

New study out of Penn State showing long-term positive outcomes of cochlear implantation. 

The research shows that on average, children improve in oral communication skills and have better peer relationships years after implantation, rather than immediately after. Even implant recipients who performed poorly several years after the procedure continue to improve....What helps deaf adolescents cope in middle school? The findings of their study suggest that deaf children should be supported in their early development to build healthy levels of self-esteem and confidence. The degree to which implanted children are accepted by mainstream schools – whether they are understood by their teachers and peers – can also help improve their peer relationships.

 

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.

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.

 

A purpose? We found it!

I haven't posted forever, but think I'm coming up for air now.  I ran across this post on a blog which I've followed for a number of years and thought it perfectly captured how I'm feeling now.  We met this family at AGBell last year.  Just substitute Lily's name and I could have written it myself.  However this Mom has boy triplets who are seven-years-old (one of which has CIs and one with hearing aids) and one three-year-old girl with her own set of challenges.  The family is amazing.  When does she have time to blog?

http://thelawrencetriplets.blogspot.com/2013/10/a-reason-purpose.html

Her blog post is titled "A Reason, A purpose?"  And I think it captures a big part of Lily and my purpose, at least right now.  We've connected and mentored and been mentored by so many families around the world and in our hometown, many of who have become very close friends.  And many who have gone on to mentor others.  Which is amazingly cool.  Families almost always thank us for giving them "hope" which is so desperately needed, especially in the early days.  

It seems everywhere I go, we are introduced to people with hearing loss or people with children with hearing loss.  It may be fate or our network crossing, but it truly is some of the most satisfying work I do.

Lily inspires them all.  She too, like Cormac in the blog post, has a love of life and the ability to inspire others.  She also has a great skill at listening and spoken language, something we've focused hard on since she was two months old. It's paid off.

She received all 4s, the highest grade in Language Arts, which is dreamy. Her reading test, after the first quarter of the first grade, placed her at the end of the third grade. She could read beyond this, but began to lose some comprehension.  She also received 4s in "Confidence in Self" and "Singing," among others, which is pretty awesome. These are both areas which we have worried about for years.   

But I also see Lily's 22-month-old brother listening with ease, picking up words out of songs on the radio and speaking in four-plus word sentences already.  He probably knows more than 500 words.   At the the same point in Lily's life, she was not yet putting two words together, but she knew 200 words or so and we documented each one.  That early childhood hearing matters.  Lily's certainly caught up, but we certainly can't let up.  

Lily struggles hearing especially when it's noisy or kids have soft voices.  I watch how much she misses when I volunteer in the classroom or when Lily is outside the school.  It's tough.  

One Mom told us she used to tell her daughter with CIs, who is now in high school, just to run after the girls when they run, even though her daughter had no idea what game they were playing or why they were running because she couldn't always hear the conversations.  The Mom said the girls would make it very clear if they didn't want her daughter there.  I think that was pretty good advice. :)  

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. 

The Spa Experience

Lily has been begging and pleading with me to get a "facial" ever since she read the sign "now offering facials" at the local nail place.  The power of reading (and definitely more trouble for Mom and Dad). 

We're not sure about how her spa obsession happened months ago.  We certainly don't visit many spas, but Lily has turned one of our bathrooms into her "spa."  No one is to move any of the "spa accessories" which include cups, soaps, tooth brushes, lotions, hair brushes, curlers, pillows, hand towels, etc.  

Finally after weeks of stalling, I took Lily for a "junior facial" as she named it.  I struck a deal with the facial lady and she did a modified facial that her daughters love.   I felt a little bit ridiculous taking a six year old for a facial, but I have to say it was fabulous.   There was warm steam, massage, lotions, exfoliation, rotating brushes, and soothing music.  Again, a language experience.  :)  Lily did not move for 15 minutes.  I kept making sure she was breathing.  She loved it! 

The lady suggested I play soothing music for Lily to help her fall asleep. We didn't even go there or explain what Lily's CIs were.  And we skipped the head massage.  When it was my turn, Lily watched very carefully so she could learn how to provide this service in her own spa.  

This evening she gave Bodie her "signature facial."  Good thing he is an easy going kid.

Apple and Peach Picking

We made a quick trip to an incredible orchard this weekend to pick apples and peaches. The founders of the orchard had a fabulous property and you can see the years of hard work that went into building such a grand place.  Lily was shocked when I told her the family's foundation actually donated funds to our Hear to Learn soundfield project.  Coming full circle in Nebraska.   

It was a hot day but there were no lack of apples and peaches to be picked.  Of course we had to sample the products as we waited for the hayrack ride to pick us up deep in the orchard.  Lots of language exposure like Gala apples, Johnathan apples, Golden Delicious, cider, carmel apples, ripe, rotten, peach pit, kettle corn, etc. 

Bodie took it all in, while Lily made plans for her next apple picking adventure.  What a great day.   

Babies hear their Moms before birth

New research reinforces what many people had believed—babies hear what their moms say and their brains recognize these words after birth. 

The researchers' conclusion was that “The better we know how the fetus’ brain works, the more we’ll know [about] early development of language.   If we know better how language develops very early, we may one day be able to develop very early interventions [for babies with abnormal development].”

Whenever I read research like this it reminds me how critical early intervention is for children with hearing loss.  Not only did Lily miss the first ten months of hearing after she was born, but likely she missed another six or seven months of sound as a fetus.  The implications of that amount of language missed is hard to comprehend. 

You'd never know it today, but it's important for us never to forget. 

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. 

Summer Fun

Lily recently learned the photographer's phrase "Work it baby!"  She thought it was hilarious.