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. 

 

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.  

 

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.  

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.  

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. :)  

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.

 

Local lecture by Dr Charles Limb - Building the Musical Muscle

Great local lecture called "Building the Musical Muscle" by Dr Charles Limb who is a CI surgeon from John Hopkins School of Medicine and a music professor in the Peabody Conservatory of Music.  His goal is to use music to help recreate perfect hearing. 

Go to http://client.stretchinternet.com/client/nwuadmin.portal# and search "Limb." Then press "Watch."

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!

Music Lessons

Lily has started piano lessons.  She's been begging to play for a while and now has a month of training under her belt.  A few more lessons and we'll post a video.  

Lily's ability to sing on pitch, recognize songs, sing all the words and learn about music has already gone well beyond everything we believed when she first received CIs.   Adults with AB CIs have reported hearing anywhere from 120 to over 440 pitches.  I'm not sure how that correlates with musical notes but Lily's pitch perception must be fairly good.  

At school, Lily's music teacher has been collaborating with her hearing resource teacher to incorporate best practices from the SPICE CID curriculum. Lily said her music teacher kept her off the plastic risers today, because they were covered in static and his can of static spray is empty.   So we're off to find super-sized cans to replenish the school.  Static season is here.

Lily's Report Card

I'm posting part of Lily's report card to give hope and motivation to parents starting on this Hearing/Cochlear Implant journey.  

Although Lily has just completed one quarter of Kindergarten instruction, her report card covers everything you can imagine, including language arts (reading/writing/speaking and listening) and music.  These are two subject areas that kids with hearing loss might have trouble with.  Grades are 1 to 4, with 4 being Exceeding Expectations.  

Intensive early intervention pays great dividends for the future.  We're so proud!

Playing the Violin with a Cochlear Implant

From the Suzuki Association of America, a story about Emily, Her Cochlear Implant, and how the Suzuki Method Made a Difference in Her Life.  Includes a great video of Emily playing the violin.  

 

 

Top 6 things to bring to Kindergarten for kids with CIs

1)  Backpack full of backup batteries.

2)  Five cans of static spray for the plastic slides, plastic risers, big plastic things in the gym and anything else that crackles.

3)  Audio cords for the laptops if using Neptunes.  Make sure the laptops are unplugged when using the audio cord.  Also make sure you test the setup when using both the FM and the audio cord at the same time.

4)  Articles for the music teachers on "what my kid hears."  Or the recent article in the Volta Voices on "What I wish my Music Teacher knew."  This was a happy accident.  The music teacher was very interested in Lily's ability to hear notes close together.  He brought Lily into the music room to sing a third and she did it.  He was amazed.  We were too.  We knew she could sing reasonably well, but repeating the notes so close together was impressive.  

5)  A pre-meeting should be held with the classroom teacher and others on hearing technology management.  Make sure there is a management plan in place especially for the FM.  Then review everything again the first few days.  There are so many moving parts.  

6) Cookies for the teachers.

We have been blessed with a group of fabulous teachers and administrators who have really gone out of their way to make sure Lily is hearing everything.  I know things are working because Lily has come home each day with elaborate songs containing lots of details, numerous "rules for life" sayings like "I can be OK even when others are not," and specifics about what the media teacher has told them like details of her favorite book as a child.  

Feeling lucky!

Digeridoo at the Library

Interesting presentation from an out-of-state school teacher at the public libraries on Australia, the environment, respect and Lily's favorite, the Digeridoo. This guy was so inspiring and on message that Lily crafted her own Digeridoo when we got home.

Thankfully he brought his own sound amplification system.  It is challenging for Lily to hear the presentation when they don't use a microphone.  

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.

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.

 

TEDMed Talk by CI Surgeon - CIs and Music

Very interesting TEDMed talk (16 mins) by cochlear implant (CI) surgeon and musician Charles Limb, associate professor, Otolaryngology, Head & Neck Surgery, at Johns Hopkins.  He explains the challenges of CI patients hearing music and the brain research that is being done to help restore the full range of human hearing abilities.  The talk even shows a video of a cat with a CI responding to a trumpet. 

Lily loves music and has recently figured out the phrase "That song is stuck in my head."  Her newest trick is dancing around the house singing "I got the mooooooooooooves like Jager" over and over again.  More focus and attention on music therapy would be an incredible addition to the speech therapy that now helps kids with CIs learn langauge. 

 

Music changes our brains

Excellent article on how music changes our brains.   We've long been a believer in incorporating "music therapy" in all forms in Lily's auditory rehab, as there is growing evidence in its impact for listening and language.    

I'm often reminded of the person who told me "there was no proof, I was wrong in believing this, and that they wouldn't even consider this as a part of LIly's therapy."   Glad we didn't listen to this advice.  

Gifts for Kids with CIs

We were asked recently about what to give a family as a gift after their child is newly implanted. Here's a quick list of ideas:

• Hanna Andersson Hats
• Tune Up CD from Advanced Bionics
• Make a Listening Bag
• LIng Sounds Iphone app
• Toupee tape (depending on their processor)
• Any sort of music toys
• Ag Bell Membership
• Carole Flexer/Elizabeth Cole Book listed on blog under recommended readings

New CI Approach Uses Cell Phones to Improve Melody Perception

Interesting new research out of the American Insitute of Physics concerning cochlear implant research and melody perception

"a new system that adapts cellphone sound processing appears to bring cochlear implant technology closer to offering the best of both acoustical worlds: speech and music."

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." 

 

A Valentine's Day Miracle - Tears

Last night  I was feeling sorry for myself and Lily after swimming lessons.  The same teacher doesn't show up each week, so we have to go through the fact that she can't hear in the pool.  This impacts how they teach her and how she communicates with the other kids in the class.  Lily loves swimming but it breaks my heart to have to take her CIs off in the water. (Note to Advanced Bionics - Please develop something waterproof ASAP!!!!)

Then we went to dinner for Valentine's Day and something remarkable happened.  There was a group of men, that turned out to the be the Lincoln Continentals, who were singing together enjoying the evening.  They were dressed in tuxes and in true Barbershop style, they sang sweet harmonies.  We were a few tables away from these men, but Lily could hear them singing. 

After a few songs, Lily asked her Dad and I if we thought they sang "Bring Back My Bonnie to Me?"  We had no idea where she knew this song from and no idea if the men could sing the song.  The next thing we knew, Lily said, "I am going to ask them if they can sing Bring Back My Bonnie."  She hopped out of our booth, walked across the restaurant and looked up at the men and asked "Can you sing Bring Back My Bonnie?"  The guys looked around the restaurant for her parents, found our eyegaze and said "Hey - Not fair sending your kid over to request a song."   We yelled, "this is all her idea."

The next thing we know, the guys are at our table singing "Bring Back, Bring Back, Ohhhhh Bring Back..." Then they told us we were going to be in trouble when she got older because she was so cute and so persuasive.  Could the evening have been any better?  This picture captured how we were all feeling.  Thank you LIncoln Continentals.  You have no idea how much that meant to us. 

 

Music - Resources and Innovation

One of the most frequent inquiries we get to this blog are those from Music Therapists in all corners of the world.  Most of the emails ask for resource ideas to work with kids with Cochlear Implants.  I think this is a growing indication of the language and listening value and benefit that kids can receive from good music therapy.

One of the best music therapy resource is Christine Barton - Check out her 2010 publcation of Music, Spoken Language, and Children with Hearing Loss: Using Music to Develop Spoken Language, as well as all her other publications.  Also Advanced Bionic's Listening Room is an excellent resource for interactive and uniquely designed practice activities for hearing rehabilitation. 

Also check out this interesting story about a music performance designed specifically for Cochlear Implant users.  

 

Music - Melodies

Lily's memory for music is amazing.  We heard an old song on Lily's music box, but it had no words.  Lily recalled that this was the same song from her dance class, which she had only heard twice. 

She remembered and made the comparison from the melody.  According to the research, she is not supposed to be able to do that   :) 

First Dance Recital - The Glorious FM

After three dance classes, Lily had a dance recital.  We had planned to give the FM to the teacher so at least Lily could have some idea what was going on.  There was no way to hear anything in a big gym with 20 kids and loud music playing.  

Because of all the chaos, and the fact that the teacher was standing next to the little ballerinas and not in front of them, I decided to keep the FM. Then it dawned on me.  I could watch the teacher and tell Lily the steps.  Of course this would be a great plan, if we had discussed it prior to the performance, but this is all new territory for us.

I turned the FM on and started repeating the steps.   Lily made all the right moves, or at least the ones I knew how to describe.  In the middle of the song, the teacher saw that Lily and her "soul sister" were in the very the back of the group, where they couldn't see anything, and quickly put them front and center.  It was adorable.  

For the next song, the FM strategy worked just as well, until Lily says in a very loud voice "Mom - where are you?" She could hear my voice with the FM, but she had no idea where I was in the audience.   I whisper that I am in the back under the basketball hoop.  She sees me and there were big smiles.  

I'm sure this won't work as well when she is a teenager.  I can already hear her say, "Mom, please get out of my head!!"

Dancing, Speaking French and the FM

Lily has taken up dance and she loves it.  She gets to dress up, practice her moves and speak french. 

However, the dancing room is a very difficult listening situation. There are wood floors, cement walls, a big mirror, loud music, etc.  There is nothing that helps with poor acoustics, except for the FM. 

With the FM, the teacher is talking directly to Lily and she is following closer than many of the other normally hearing children, likely because they can't hear the teacher. With the 50/50 split Lily can still hear the music, but her teacher's voice is 50% of the signal she is receiving.   Pretty Cool!!

Have I mentioned my campaign for better acoustics?  

 

Singing and Dancing for The Alexis Verzal Children's Hospital

Lily loves music, so dancing and singing to the String Beans, was a highlight last week.  Lily described Curt as a "lonely bean" because he is the only remaining Bean still performing.  She even recognized the music to "I think I need a Bath" before I did.  Her music appreciation and developing skills are beyond our wildest dreams.   

We were there to attend a Holiday Book Drive for The Alexis Verzal Children's Rehabilitation Hospital of which we are huge fans.   Alexis and her family have become friends, as have a number of the staff members at Madonna Rehabilitation Hospital.  My Rotary Club even raised funds to develop a Sensory Therapy Room.  What an incredible place. 

Hanging Upside Down and Anniversary Celebration

Here was Lily's first time climbing a tree with Grandpa Bruce.  Her Advanced Bionics BWP Cochlear Implants stayed on even upside down. 

Lily also loved playing with Grammy and Pap for their 70th wedding anniversary.  Lily climbed all over Pap and convinced him to run the "marathon," which he happily participated in.  Grammy was also quick with coloring books, to Lily's delight, and of course chocolate which Lily can't live without  

At the Anniversary Party, a huge banjo group played.  Lily was in her element dancing and of course singing.  Her favorite song seemed to be "You are my Sunshine."   When we returned home, this same song played on our car CD player.  Lily instantly said, "This is the same song from the banjos."  

Thanks Advanced Bionics for making it possible for Lily to not only enjoy music, but to also recognize songs in a few notes.

Music Therapy Research - CI Rehab for Toddlers

We receive emails and comments from people all over the world on our blog.  The most common topic people have thoughts or questions about is Music Therapy. 

A few weeks ago we received a note from Felicia, a music therapist from Australia, who is interested in working with children who are deaf and hard of hearing.

She found this great article supporting our argument for including Music Therapy in rehabilitation. The article discusses that a Music Therapist in Israel, working with children with CIs, found that spontaneous communication was more frequent and prolonged when music was used.  This is a rapidly growing field of study and one which should be immediately implemented in rehabilitation strategies.  

We didn't know what to do with Lily and music.  Our approach was a gradual one.  According to this research, that seems to be the right approach.   Now Lily demands music in the car, in the house and pretty much anytime she can get someone to turn it on.  She's had a music therapist, been to Kindermusik and now she has music in preschool.  She sings, she twirls, she makes up songs, she picks up words and says "don't turn it off yet.  I want to listen to the whole song."  

Music is critically important to language learning. 

CI Theory

I've posted this CI Theory website before but just went back and found some incredible updates about this guy who has a AB CI and has been using it to work on a next generation CI speech and music strategy.   Check out My Biography and Background and Info about Speech Processor and Work.  

Music Therapy for Kids with CIs

A new doctoral study (video) conducted in Israel and led by Professor Tony Wigram, Head of PhD Studies in Music at the University of Aalborg in Denmark, once again highlights the incredible qualities of music....These sounds and others were played by Dr. Dikla Kerem to two and three-year-olds who have an elaborate hearing aid called a "cochlear implant" surgically placed in their ears. Dr. Kerem examined the value of music therapy in the post-surgery rehabilitation process.... One of the things Dr. Kerem discovered is that music therapy significantly enhances the toddlers' spontaneous communicative interactions, compared to play-based communication.

Music Therapy should be incorporated into the standard practice of therapy for kids with CIs. 

Music 'Tones The Brain'

An article in LiveScience quotes a new study published in the journal Nature Reviews Neuroscience suggesting that learning music can have an impact on other brain functions and abilities such as better hearing in noise, better vocabularies and better reading abilities. Click for full article.

It's a Small World Moment

On the way home from a long day at Disney, Lily entertained the bus by singing "It's a small world after all, it's a small world after all, it's a small world after all, it's a small world after all, it's a small world after all...........on and on.  She never came to the closure of the song, yet her version was exactly how she heard it in the "It's a Small World ride."  The entire bus was laughing and enjoying the innocence of a child.  Little did they know how truly special the moment was. 

Baby Grand Piano Performance

A baby grand piano arrived today on the porch from the neighbors.  Lily loved playing every key and button.  She looked so natural, sitting on the tiny little bench and pressing each key to hear the sounds.  We're sure this won't be the last time she has a piano performance. 

Music Benefits

Another study looking at the benefits of music for cochlear implant users. Lily loves her Kinder Music classes.

Dancing Ballet

Lily loves to "dance ballet."  This is mostly made up of running, jumping, twisting and sticking your leg up in the air.  Of course it helps to wear a tutu and in this first photo, snow boots. 

Really any kind of music will do.  If it is live music, it really stirs her soul.  Last night at the mall, Lily discussed her musical favorites with the piano player.  They both agreed that Disney songs were their favorite.  Then Lily danced ballet between a shelf and a makeup counter in total BLISS.

Stage Performance

In the local Children's Museum, there is a stage and lots of costumes.  Lily grabbed this hat, went onto the stage and started singing "Twinkle, Twinkle."  Not sure how she knew the "stage process,"  maybe she is secretly watching American Idol.  She told me to sit down and watch her sing.  What a journey. 

Advanced Bionics Calendar Girl December 2010

Lily is featured in the 2010 Advanced Bionics Calendar "Celebrate Hearing!"  Among the beautiful drawings from AB recipients in China, incredible poems about sound, and photos of people doing amazing things with their implants like running marathons or playing in rock bands, is a cute photo of Lily playing outside. 

Beside the photo is the following paragraph written by Lily's Dad:

"Life is Bliss.  When we gave Lily the middle name of Bliss little did we know how truly appropriate it would become.  Lily keeps shining, reminding us daily of the gifts that make each day wonderful. She sings.  She dances.  She talks and talks and talks.  She picks up words and conversations.  She tells stories about monsters and she tells Mommy how much she loves her.  And with each sound she hears and word she utters we are amazed. Thanks AB for making Bliss an everyday occurrence." 

Beach Angels

While Lily has not yet attempted an actual snow angel, she has now done a number of sand angels.   The sand in Florida was like powder which was nice and cool but couldn't be formed into a ball.  

We were were so happy Uncle John could join us and have Lily's full attention.  Since Lily saw John last, her words have moved from UnJon to UN-CLE JOHN - Usually called loudly.   

The last photo is of Lily singing in her first gig at a local Florida bar.  The musician, who claimed to know every song in the world, involved Lily in singing Feliz Navidad.  He recorded Lily saying "Hello Everyone."   Then he would sing Feliz Navidad, followed by Lily saying/singing "Hello Everyone" over and over again.  Very cute.  Lily was also engaged in shaking the maraca.  

Could we have ever dreamed or imagined Lily would sing her first gig at 2.6 years old?  Hardly. 

 

Lily's First Movie Theater Experience - Fantastic Mr Fox

This past weekend we went to Fantastic Mr. Fox, Lily's first movie at an actual movie theater.  She loved it.  The movie was a perfect mix between a kids' puppet cartoon, although it is stop-motion animation, and sophisticated adult humor with Latin name references and deep emotional struggles.   The primary narration was done by the fantastic George Clooney. 

Lily spent some of the movie climbing up and down on her chair and sitting on the small fence in front of us and was also filled full of popcorn and licorice, but overall she watched and listened to the movie like a champ.  It was difficult to know how much of the movie/language she could understand, but I think this will come as she gets older.

At the end of the night, Lily walk out the big movie theater doors and announced, "I had a great time."  So did we!!  Lily's Dad is now dreaming of the day when we can start going to movies in the theater again on a regular basis.

Dreaming of Cake and Ice Cream

We got to celebrate our little friend Elena's third birthday at a Princess-Batman party last weekend.  It was great fun and Lily was able to try on the birthday girl's dress up clothes.  This cowgirl outfit was a hold over from Halloween, which apparently WalMart drastically reduces immediately following the holiday.  Who knew?  Lots of language opportunities with costumes!

The picture captures Lily's excitement perfectly for the outfit and the party.  Lily continues to talk non-stop especially when it is something she wants to do such asking the birthday girl's uncle to move so she could have his chair (he very generously changed seats), asking the birthday girl's Great Grandparents for the icing roses off their cake (they were all over this request) and singing the Kindermusik goodbye song as we left the party. 

Before we arrived, I was telling Lily that we would eat cake and ice cream at the party, but first she had to take a nap.  She responded, "Then I will dream about cake and ice cream."  Too fun!

Singing and Dancing at a Coffee Shop

Here's Lily, the short rainbow, singing and dancing with her friends at a coffee shop.

Lily Sings Her ABC's

Lily made a quick recording on my iPhone of her singing the ABC song. American Idol here we come.

Download Lily Sings ABCs

Advanced Bionics Mentor Training

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

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

What we understand now about Advanced Bionics is:

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

2) AB has the best hearing performance with their:

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

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

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

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

She's Got A Good Ear

We've got about 100 posts we want to share since we've been on the road from LA to NYC to Columbus, OH, but for now here's a quick story that made Lily's Mom and me light up inside.

We were having dinner with Grandpa Bruce at a restaurant in Los Angeles when Lily decided to show off her singing skills with a rendition of the ABC song. As she made her way through the ABC to the LMNOP to the "jazz hand" big finish, the waitress stopped and commented, "She's got a good ear." All we could think of was "You have no idea." Smiles and laughs ensued. What a great moment.

Music and the Cochlear Implant

Hearing Health Magazine recently released a variety of articles on Music and the Cochlear Implant. 

In the first article, Ward Drennan, PH.D. writes, "The primary weakness of CIs is their inability to deliver pitch information. There has been a long-standing controversy regarding what acoustic information normally hearing people use to allow them to perceive pitch." 

He continues later in the article, "The CI encodes frequencies according to place. Unfortunately, however, most of the fine timing information that could contribute to pitch is lost. The implant divides incoming acoustic information into 12, 16 or 22 channels, whereas normal hearing gleans information from 30 to 40 channels. Even in the best scenario, place information is already degraded relative to normal hearing. The degenerated condition of the auditory nerves of implant recipients further limits the end result to eight or nine functional channels. Additionally, CI-users lack information that hair cells normally “gather.” Groups of hair cells and their associated nerves, working in tandem, have the ability to capture the detailed pitch timing of each wax and wane of the acoustic wave up to 3,000 to 4,000 hertz. This ability is almost completely lost in the implant-user, who rarely gets such information greater than 300 hertz. Thus, the refined pitch, chords and melodies in music that normally hearing people enjoy often become a garbled, blurred mess when heard via a CI. For the CI-user then, the ability to perceive both place and timing information about pitch is marginalized.  Despite these unfortunate limitations, rhythm perception, an essential element of music, is nearly normal in CI-users. "

He goes on to say, "The brain is the CI-user’s greatest asset. With training and effort, the CI-user can utilize the garbled mess they hear, perhaps finding cues in the implant stimuli, and make the best use of music based on memory. Also, in the vein of Charles Ives, in which any sound might be considered music, the CI-user can learn to find aesthetic value in the “new” sound. Perceiving art, and art in sound, is primarily a state of mind." 

Finally he discusses Cochlear Implant company strategies to improve music listening including those of Advanced Bionics and Cochlear.

Great articles!!!

Jumpin' Kate = Jumpin' Lily

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

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

Stop Talking...Time To Be Quiet

I didn't think we'd ever see the day where I would want Lily to stop talking.  Well it's already happened.  At night we have to tell Lily to stop talking and go to sleep.  At just two years and three months, Lily goes on and on and on.  Last night as she was going to sleep, she even composed her own song.  It went something like this:

Go to sleep.  Go to sleep
Lay down
Mommy and Daddy
Turn on TV

There were other words in there that I didn't understand.  It was definitely to a song, that we had never sung before. Other Cochlear Implant parents said this would happen.  I just didn't realize it would happen so soon.  Pretty ironic. 

Pretending and Singing Mr Sun

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

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

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

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

A few more fun pictures to enjoy.

Music Therapy and Its Link to Listening and Reading

New research on music therapy and its effectiveness at teaching listening skills, especially in noise. 

Incorporating a music therapist for kids in early intervention, for a range of issues, seems like an increasingly good public policy idea. 

"The findings strongly support the potential therapeutic and rehabilitation use of musical training to address auditory processing and communication disorders throughout the life span.....Better perception in noise was linked with better working memory and tone discrimination ability. The results imply that musical training enhances the ability to hear speech in challenging listening environments by strengthening auditory memory and the representation of important acoustic features."

The researchers have also looked at the link between music and reading.

"The Auditory Neuroscience Lab at Northwestern has helped establish the relationship between sound encoding in the brain and linguistic abilities by showing that the very neural sound transcription processes that are deficient in children with dyslexia are enhanced in people with musical experience. Based on this collective work, poor readers may show greater benefits from training programs that include music as well as speech sounds."