Life is Bliss - Lily's Cochlear Implant Journey

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."

Talking in Church

This weekend we trekked across Nebraska to a western wedding and then back to the other side for a 100th Birthday party.  Lily did very well on the eight hour journey in the car, only demanding to stop a few times. 

On the trip, we had a couple of strangers say to us, "Boy, she is a talker" and "She is so verbal for two."  Those unsolicited comments are quite fun. 

It also took all our tricks to keep her quiet during the wedding which was held in a small church.

One of the secrets was lots of M&Ms, which we now call L&Ls so Lily doesn't know what we are talking about.  However, then Lily was requesting the M&Ms by color.  "Blue one, Yellow one, Green one. More M&Ms please."   She also kept making comments during the ceremony like "Hi Dale," "I see him," and "More Music."  She was the only one to clap when the songs would end  (I always thoughts the Methodists were clappers).

Every step comes with new challenges, but these are quite fun.

Singing in the Car - A Great Time for Language

We do a lot of singing in the car.  Sometimes we sing the dozens and dozens of kid songs we've learned since Lily was born. 

Lily asks for music a lot.  It sounds like Mur-or, then I correct her with "Mu-sic" and she says "Muuuuuu-si."  Hard word to say. 

Lily knows which songs she likes.  She'll say "No-no-no," indicating that she wants to change the song.  Today she started saying "Next song."  She has a couple of favorite kid songs including one that sounds like Bob Dylan and another that talks about ice cream.  (Of course).  She'll wave her arms and legs around and try and dance to the music. 

We've also started singing the A-B-C song and Lily is really picking it up fast.  She will fill in certain letters and words when we pause.  Grandma has an alphabet caterpillar that has also really helped her learn this song. 

The car is great time for singing, dancing and music. 

Jazz In June

Lily dances to the music at Jazz In June next to the Sheldon Art Gallery.

Songs - Singing and Dancing

Lily loves music.  She loves kids songs (especially Raffe, Elizabeth Mitchell, and the Tune Ups CD by Chris Barton), Kindermusik songs, nursery rhymes, Library Story Time songs, and the Dixie Chicks.  

However, she was not happy today when she turned  on the NPR Classical Station at full blast.   It was the first time I've seen her running screaming out of her playroom.  Fortunately her CIs cap the sound at approx 90 dbs, so no damage was done.  She can listen to all the loud music she wants.  Maybe it was the Classical Music she didn't care for? 

Anyway, we sing a lot around Lily.  Songs she likes, does lots of the actions to, and is starting to sing some of the sounds/words are: 

Twinkle Twinkle
Itsy Bitsy Spider
I'm a little Teapot
Thank You Song
If you are Happy and You Know It
Walk Around Rover
When I Stand Up I Feel so Tall
There's a Baby at the Door
Row Row Your Boat
Ring Around the Rosie
Twinkle Twinkle Traffic Light
Wheels on the Bus
Open Shut Them
Bounce Bounce Bounce

She also responds really well to the Clean Up song which goes xxx away, xxx away, time to put the xxx away.  So simple, yet magically effective.

I don't know how she will feel about music when she is older, but we've seen and read about lots of teenagers with CIs who connect their Ipods directly.  There is a great simulation of what he the Hi Res 120 sounds like on the Advanced Bionics website.  Prior to Lily receiving her CIs, we read so much about how people with CIs have no music enjoyment.  While it might be the case for some adults, it just doesn't seem to be the case for Lily. 

Phrases and Music Listening

We are anxiously waiting and encouraging Lily to start using two and three word sentences.  Her vocabulary is building towards 100 words and this is the next language step. 

Lily has started to say some phrases that are like one long word to her, but really are multiple word phrases such as:  Up up we go; Up, Up, Up whee; All Done; catch it;  Dada car; ahhhhh boom (airplane files, airplane lands), and up above the worl..... (she says this whenever she sees a star). 

The other thing I've noticed more recently is that she is able to hear words in a song on the CD player and respond, especially to her kids' music.  When words like swish, tap, wave, clap, jump or mama are said, she responds with an action or repeats the word.  

It feels like each step is another gift. 

OPA, OPA - Happy St. Patrick's Day!

Lily had a great Irish feast tonight at out favorite Greek restaurant (Long story short, every year the best Irish food is served up at our friend George's greek restaurant for one night only). In addition to the usual boiled potatoes, cabbage and corned beef, a troop of Irish dancers entertains. Lily loved it. What a great day to celebrate. Here are a couple of pics below (and don't forget to see more photos at Lily's Latest Pics on the right side of the blog).

Fast and Furious

The words are coming fast and furious.  I can't even keep up with the expressive language (ok this is a little exaggeration, but we are hearing 4-5 new words everyday) and I've all but given up on tracking receptive language.  Lily is constantly surprising us with another new word she knows.  She is not talking in sentences or even two words together, but if you say "what is this" she'll say purse or Big Bird or Dora or Ivy.  Lots of nouns.  She is also repeating everything, especially words at the end of the sentence. 

Today we also attended the SNRP Bowling Day for students who have a hearing impairment.  Lily dazzled them with her Kindermusik Walk Around Rover Song and her Good Bye song from library story time.  She hears these songs well and does all the actions including getting on the ground and "shaking her tail."  She was even saying "run, run, run" as she ran around Mommy fast and furious, for the second verse of Run around, Run around, Run around Rover...

Disney World Magic Moments

A quick trip to Disney World's Magic Kingdom and Animal Kingdom created all kinds of magic moments for Lily this past week. 

Some of the best moments included Lily dancing to the pre-show music for the Magic Kingdom parade.  She was not only dancing but she was running around, laughing and squealing with joy.  The rhythm and music was clearly moving her soul, until she ran into a drain pipe.  Fortunately, she regrouped quickly once the parade started. 

Another magic moment happened as Lily watched the Lion King show.  She again was dancing in her stroller to the music, kicking her legs and waving her hands.  She was growling like a lion and squeaking like a monkey.  All the "animals" in the show were coming up to her and giving her high fives and big smiles.  Lily was in animal heaven. 

Getting What You Want - ABBA

Lily can communicate very well even with her 15-20 words.  Yesterday she was pushing on Grandpa's back while he was sitting in a kitchen chair and saying Up Up Up.  Finally, Grandpa got up and then Lily ran around in front of him and threw her arms in the air and said Up Up Up.  She then pointed to the stairs that go to the basement.  Grandpa agreed and downstairs they went.  This is special Lily and Grandpa time when they listen to ABBA (Take a Chance on Me, Dancing Queen, Fernando and really anything Grandpa can pull up on YouTube).  Lily will sit and listen to the music as long as Grandpa will sit there with her.  Every time a song ends, you will hear "Mor, Mor" and then ABBA starts singing again.  ABBA is also great because the videos from the 70s are just pictures of them dancing around and singing. Lots of face shots, long boots and bright lipstick.  Namaste

Bumble Bee Song

We've started singing a few songs with actions over and over again.  One of LIly's favorites is Bringing Home a Baby Bumble Bee. She has begun to anticipate the actions and words.  When we pause, she looks at us with anticipation.  Then we pinch her and say, "Ouch, it stung me."  She'll immediately scrunch her shoulders and say Ouuuu and smile.  She is also recognizing the word Ouch in other contexts.  Very cute and exciting. 

WORDS:  I'm bringing home a baby bumble bee.  Won't my mama be so proud of me.  I'm bringing home a baby bumble bee.  Ouch!   It stung me.  :)

Singing Songs

Lily is singing.   OK it sounds like humming or moaning or babbling to a different song, but she is getting the idea.  She sings most to Grammy's little musical piano.  We have a huge list of songs and nursery rhymes we are supposed to be introducing and incorporating into our daily routine.  The first five songs on the list include: Wheels on the Bus; Itsy Bitsy Spider; Row, Row, Row Your Boat; Open Shut Them; and Head, Shoulders, Knees, and Toes.   As we sing and do the motions, we're trying to get Lily to recognize the song and imitate or initiate the motions.  There are 30 songs on the this list.  Lots of singing to do!!

Beans, Beans, Beans

Lily's day was full of beans. It started with a trip to see the local children's band The String Beans. They're kinda like The Wiggles but with less dancing and more Nebraska references. If you're looking for fun children's music, check out their CDs. They're quite good. The Beans were playing a show as part of Bryan Hospital's Health Fair. There were plenty of carnival-type games and activities for kids and booths from local vendors - from Kinder Music to the Local Blood Bank. Lily had a great time and we met up with her friends Ivy and Anya as well.

Later in the day, the family went out to the El Salvador Cafe. Lily has been mastering the spoon and tonight she seemed to master it with a bowl of refried beans. She devoured the bowl and had a great time doing it - as evidenced by the picture below.

We're off to give her a bath.

Kazoo and Blowing

Lily has been blowing for a couple of weeks now, which according to our Handprints and Footsteps Speech Therapist Staci, is quite good for her age.  She said most kids don't blow until 18 months.  Today, Lily got out our bag of musical instruments and began to blow and make sounds on the Kazoo.   This involves blowing and sound making.  No easy task.  She was even mimicking my sounds, both high and low.  Ahhh a musician in the making. 

Music and CI guy at the Library

This morning Faye, our LPS Hearing resource teacher, brought a darling CD called Circle Group which Lily and I will be exploring this week.  Lily loves to dance, spin, shake and bounce. This morning she was bending her knees and grooving to the music.  This of course was after we moved her away from the piano that Grammy gave her.  Lily loves pushing the song button and banging her hands on the table.  It's an upbeat way to start the morning. 

Then on our trip to the Library, we saw a 70-year oldish gentleman with a CI.  I have this urge to rush up to everyone with a CI and talk with them about their experiences and let them know we are a member of the "club" too. This time I restrained myself and then when I changed my mind he was gone.  Lesson: Don't hesitate.