Life is Bliss - Lily's Cochlear Implant Journey

Baby Lab - 30 months

Lily Observations in the Baby Lab. 

1.  Lily continues to expand the length of her spontaneous utterances.  Some new complexity observed.

    a.  Embedded "wh" pronoun and past irregular - "Look what I found"

    b.  Semi-auxiliary - "Lemme see; Lemme stand"

    c.  Consistency increasing for +s on plurals and tz on possessives  - "comb baby's hair"

    d.  New forms of negation - "I have no crackers."

    e.  Reflexive pronouns - "by myself"

    f.  Noun phrase elaboration - "Your big spoon"

2.  Nice verbal planning observed today! -  "I gonna heat it up"  "Lemme heat up my soup"  "Now eat my soup"

3.  Exciting to see how specific her vocabulary is and how rapidly she picks up new words (jeans, pacifiers, alphabet soup).

    a.  Strong phonological (speech) development supports word learning.

    b.  She attempts difficult words - "Alphabet soup"

4.  Mom continues to provide beautiful recasts - You are filling in the details in your models that sets the stage for additional grammar.

5.  Some complex ideas emerging in her language.  "I know..."  "Now I...(time concept)"  "What else?"

6.  Speech intelligibility is strong for her age - It may vary when attempting a mouthful of ideas.

7.  Additional colloquial ideas - "There ya go, babe"

Audiology Report - 18 months post implants

Here are the highlights from our latest audiology visit in November. 

Results from today's testing indicated speech awareness thresholds (SATs) at 25db HL for the right side and 30 dB HL for the left side. Additionally, speech recognition thresholds (SRTs) were obtained at 20 dB HL for the right ear and at 20-25 dB HL for the left ear.  In the bilateral condition, an SRT was obtained at 20dB HL.  (For the audiologists that read this blog, we're always open to suggestions on how to make this better)

Responses to narrowband noise were obtained today at 30 dB HL and at 35 dBHL with the left processor.  Lily appeared to tire of testing before a more complete audiogram could be obtained.   An audiogram done in May was consistent with these findings. 

The NU-Chips test was administered.  Right CI only - 14/15 - 93%, Left CI only - 100%, Bilateral CIs 14/15 (93%).  The two Lily missed were comb and she touched ham instead of hand.   

Modifications to the Map:  Lily's maps have been stable for quite some time. At this visit, the T and M levels were globally increased approximately 5 cu's on both sides. 

COMMENTS:    Lily continues to make exceptional progress with her cochlear implants.  She is now able to participate in closed-set speech perception tasks. On the NU-CHIPS, which is a task that required Lily to identify words with the same number of syllables, similar vowel and varying consonant, she scored 93%-100%  Lily is ready for a more difficult closed-set task at her next appointment. 

NPR Radio Interview - Niparko and CI recipient

Interesting WYPR Maryland Morning radio interview with Dr John K. Niparko head of the The Listening Center at Johns Hopkins and a professor in the Department of Otolaryngology and Kathleen Galvan, a Cochlear Implant recipient who made a financial contribution to the NPR station because it was the first radio station she had ever been able to listen to.  (thanks to Tiff for finding it)

MacArthur Bates Word Inventory - 28.5 Months

For Lily’s latest scores on the MacArthur Bates Communicative Development Inventory (MBCDI), she was credited with 603 words. 

For girls at 28 months, this word score places her between the 75th and 80th percentile. These are normally hearing kids/girls - Whooo Hoo!!!   The MBCDI ends at 30 months of age – and they see ceiling effects (kids are learning lots of words that are not represented on the scale). 

While this is not a test of overall language proficiency, speech or listening, it is a very interesting measure in language/vocabulary growth. 

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.

How do People Choose a Cochlear Implant?

One of the interesting pieces of research we looked at during our AB Mentor Training was how people choose a Cochlear Implant.  What factors matter to people the most? 

Here are the results, from greatest to least important:

1)  Hearing Performance

2)  Reliability/Durability

3)  Manufacturer Support

4)  User Friendliness

5)  Aesthetics/Cosmetics

Advanced Bionics People

One of the amazing things about our Advanced Bionics Mentor training was meeting the staff and the other mentors that consisted of adult recipients and parents of kids with CIs.

The Staff - From the President on down, the staff was incredibly professional, knowledgeable and passionate.  They believed in what they were doing and were totally committed to helping people hear better. 

The AB President, Jeff Greiner, outlined AB's history, the challenges they faced and what the future may hold.  He spoke frankly about starting a implant device company with seven engineers in the early 90s and what the company had become today.  He described their intense focus on listening and sound quality which has resulted in superior performance.  His confidence in the AB product and staff was apparent  He had a CEO's confidence, yet said this nearly 20-year journey had made him humble. 

The rest of the staff, including those from the Bionic Ear Association, marketing, manufacturing, product development and others were equally as impressive.  They were all well trained, totally engaged and passionate about helping people hear better.  They could see the big picture.  Almost all of the staff were trained as audiologists and now serve as advocates, business managers, marketers, sales people, trainers, technical advisers, and product designers. 

Other Mentors - The other 40 people at the Mentor Training were adults and teens with Cochlear Implants and parents of kids with Cochlear Implants.    Most of the people there had been helping advise CI candidates for years and could clearly demonstrate how the AB CI had changed their lives so dramatically.  The passion in the room was contagious.  Many of them also had blogs.  Here are just a few.

Kids

http://elliottrocks.blogspot.com/

http://maxandclairesadventure.blogspot.com/

Adults

http://geocobb.blogspot.com/

http://cisoundsx2.blogspot.com/

We are so appreciative to Advanced Bionics for helping Lily to hear.  They realize, as do we, that our partnership with them is for a lifetime.  Now with Advanced Bionics being purchased by Sonova/Phonak, we think even more exciting things are ahead.  If we could only figure out how to purchase stock on the Swiss Stock exchange.  I think the outlook for Advanced Bionics is bright. 

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).

Very Thankful

We are so thankful this year for all the blessings we've been given.  Lily is thriving. She is talking, listening and is a very happy kid.  She says funny things, is sensitive and passionate.  She is a typical two year old, except we think she is brilliant, beautiful and hilarious.  So we are biased. 

We are thankful for all the support our family and friends (who are like our family too) have given us and all the love they give to Lily.  We are also thankful for all the professional support we've received this year.  Lily's team members have become our life long friends and we are glad to be on this journey with you.    

Happy Thanksgiving. 

Advanced Bionics - Great Stuff

Got back from our weekend trip to Advanced Bionics. What a fabulous time we had. We'll post more about the trip soon. In the meantime here's today's press release about the AB merger that will bring some amazing synergies and good stuff for AB families.

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Press release, Advanced Bionics - November 9, 2009
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ADVANCED BIONICS TO BE ACQUIRED BY SONOVA

-- Acquisition to expand Sonova Group’s position as a leader in hearing healthcare solutions --

VALENCIA, Calif., November 9, 2009 – Advanced Bionics (AB), the only U.S.-based manufacturer of cochlear implants (or “bionic ears”), announced today that it has entered into a definitive merger agreement with Sonova Holding AG, the world’s leading provider of hearing systems. Pending regulatory and shareholder approval, the transaction is expected to close within the next three months. The acquisition represents a strategic expansion into the area of cochlear implants for the Sonova Group, enabling the group to offer a comprehensive range of solutions for hearing loss.

“Sonova was attracted to our company for our advanced technology, commitment to our patients and our potential for expansion,” said Jeffrey Greiner, CEO of Advanced Bionics. “Not only will we continue to grow under the leadership of Sonova, but we have taken an enormous step toward ensuring that AB remains the industry’s performance leader, now and in the future. We are truly excited by the technological possibilities that this acquisition will offer our candidates and our recipients.”

The Sonova Group brings together Advanced Bionics, a global leader in cochlear implant manufacturing, and Phonak, a global provider of micro hearing systems. Both pioneers in their field, Advanced Bionics and Phonak have 75 years of combined experience in engineering innovative hearing solutions.

Like Phonak, AB will remain an independent division within the Sonova Group, but will share the elements that have been driving the success of AB’s new parent company over the last decade: global sales coverage, outstanding customer service, a global supply chain, and a dedication to innovation. The partnership will also provide:

Versatile, attractive, easy-to-use products
High-performance hearing devices
State-of-the-art acoustics and engineering
Industry-leading technology and performance innovations
Expanded international distribution
Lifelong commitment to patients’ needs
Attentive, caring customer service
Improved quality of life for patients
In addition, Phonak’s proven capabilities in the field of micro auditory devices will set the stage for AB to develop smaller, higher performing sound processors for patients across the globe. Combined, Sonova, Phonak and Advanced Bionics will provide the most comprehensive product line in the hearing healthcare industry, offering a full range of hearing options for those with mild-to-profound hearing loss.

For the acquisition, UBS Investment Bank acted as exclusive financial advisor and O'Melveny & Myers LLP acted as exclusive legal advisor to Advanced Bionics.

About Advanced Bionics
Advanced Bionics is a global leader in developing the most advanced cochlear implant systems in the world. Founded in 1993 and headquartered in Valencia, Calif., AB is the only American company developing cutting-edge cochlear implant technology that restores hearing to the deaf and allows recipients to hear their best today, tomorrow, and always.

AB has the most sophisticated cochlear implant system on the market, the Harmony® HiResolution® Bionic Ear System, with five times more sound resolution than its competitors, designed to allow recipients to go beyond deciphering simple speech to hearing music.

With sales in over 30 countries and a proven track record for developing high-performing, state-of-the-art products, AB’s talented group of 660 technologists and professionals from all over the world are driven to succeed, work with integrity and stay firmly committed to quality.

To learn more about AB and its revolutionary cochlear implant technology, please visit www.advancedbionics.com.

About Sonova
Sonova is the leading provider of innovative hearing healthcare solutions. This globally active group of companies is one of the world's top three manufacturers of hearing systems, the market leader in wireless communication systems for audiology applications and a provider of professional solutions for hearing protection. Sonova is pursuing a clear growth strategy and is intent on building its market share. To this end it is constantly expanding its existing business segments and branching out into other areas of the hearing healthcare industry.

Present in over 90 countries, and with a workforce of over 5,300 employees, Sonova generated sales of CHF 1.249 billion in the financial year 2008/09 and a net profit of CHF 284 million. This financially strong group of companies bases its success on innovation, customer focus and proactive cost management.

The company has been successfully promoting understanding and communication for over 60 years, and is ideally positioned to benefit from the trends in this growth industry.

Sonova shares (ticker symbol: SOON) have been listed on the SIX Swiss Exchange since 1994. For more information please visit www.sonova.com.

Baby Lab - 28.5 months

I can't believe that Lily's had her Advanced Bionics Cochlear Implants for 18 months already.  She speaks very well and non-stop these days. 

Lily comes up with original thoughts, long compound sentences and can make up complex pretend sequences which are amazing Mary Pat in the Babylab. 

Here is our latest report.

1.  Lily built off mom's model and asked her first "why" question in the lab.

2.  Great job of supporting "thinking and feeling" words and supporting Lily's recall (remember when...)

3.  I heard her talk about "pretend" using the word for pretend.  Wow!

4.  You support her imagination in such interesting ways.  She is captivated when you pretend together.

5.  She is able to navigate this pretend world with your support, which results in a lot of talk not tied to here and now. 

6.  What interesting problem solving - sit on Mommy's lap to avoid the truck traffic.

7.  Very diverse vocabulary use - (neighbors) - with a lot of specifics.  I heard many adjectives today in her noun phrases. 

8.  Very positive to hear the speech clarity.  Her words are well formed.  Blends at the end of words - whoops and ones (nz)

9.  We are hearing additional colloquial expressions.  Whoops! yup..there ya go. 

10.  Continuing to increase utterance length. This is just magical to watch.

11.  Lily said "by himself."

12.  Think about acoustic highlighting on /h/ (in here)

 

Lily's First Haircut - "That's not so bad"

Lily had an official first haircut for which she sat very still.   We were pleasantly surprised, because of our previous attempts at giving her bangs a little snip.  It must have been the big cape, the big chair and the big mirrors that captured her attention just long enough for the hairdresser to trim her blond locks.  Lily didn't really have much hair until 18 months, so we were only going for a trim. 

As the hairdresser sprayed her hair down with water, Lily said, "That tickles" which was quite amusing for the whole salon.   After finishing up and getting some candy, Lily jumped down and said "That's not so bad."  Again the entire place erupted in laughter. 

Haircuts were situations that "pre-Cochlear Implant" I wondered how we would do it so she could hear.  Fortunately, it didn't present a problem at all.  When the hairdresser was cutting one side, we just flipped the head piece down and as she moved to the other side we replaced the head piece and took the other one off.   No problem.   Lots of anxiety created over nothing.   

Another Bilateral Benefit - No Off The Air Time

Well we had our first scare with a head bump. Lily was running on the wood floors and slipped. She conked her head on the door jam or floor (we're not really sure which). The spill sent her CI flying and left her with a little bloody scratch at the magnet site. Luckily it doesn't appear to have caused any swelling or problems. We put Neosporin on the cut and left her CI off for a day and a half to let the cut heal. Initially, Lily told us not to put her CI on her "owwie", but after the first day everything seems to be okay. Now she's telling us, "It's all better." 

Luckily through this whole ordeal she was still "on the air" with her left ear. While it's a small sample size, she does appear to respond better when she has both on and working. She appeared to lip read a little more when she was only wearing one and it took more to get her attention in noisier environments, but at least she could hear while her right one was healing.

Online Music Therapy Courses and other CI Experts

Last week, I watched a free online session with Chris Barton, board certified music therapist, hosted by Advanced Bionics. Chris  is an award-winning composer, performer and music therapy guru.  I think I've raved about her before, but this online session reminded me of how well she understands kids with CIs and how music therapy/music training is a must for kids who are learning to listen and talk.

The session I attended was primarily a Q and A, but there are at least seven other free online courses with Chris Barton in Advanced Bionics's Listening Room. 

There are also lots of other sessions in their eLearning Library by some of my favorite CI experts like Dave Sindrey, Mary Koch and Amy Robbins. Specially look at Amy Robbin's intervention Activities for ITSIs (Infants and Toddlers with Cochlear Implants).  Check it out!

You've got a Talker There

Pretty much every where we go now, someone comments on how much and well Lily is talking.  From grocery store clerks and people in the Library, to Realtors and retail check out people.  Not because they see Lily's Cochlear Implants or have any idea of what they are, but because she is talking all the time and her speech is very clear. 

The grocery store clerk said, "She talks so well and you can understand everything she says.  How old is she?"  This is at the same time another grocery store clerk is throwing balls with Lily in the aisle.  Lily is telling him to "throw the ball."  He carefully tosses the ball and she say, "Uh oh, I missed it."  No worries.  He ran and picked it up to throw it again.

The slightly odd thing is on this same trip, a man started signing to Lily.  He could hear, because he had already informed me (unsolicited), that I was debating over two metal pans that were the same.  "No," I said, "One has a lid and the other one does not."  Or as my friend Yvonne would say, "Back off."  :)

Two other people have signed to Lily once they could see her CIs which I find very interesting. Not sure if they were deaf or not.   It will be facinating to watch this new generation of kids with hearing loss and the enormous amount of opportunities that have opened up to them because of their Cochlear Implants.

AB Harmony vs Nucleus 5

Advanced Bionics has posted a new comparison chart versus Cochlear's latest Nucleus 5. Click on the link for more insights.

Skinit for Advanced Bionics BTE

Advanced Bionics has started a very cool partnership with Skinit, maker of "skins" you can put over your Advanced Bionic BTE Cochlear Implant or computer or IPhone or whatever.    Lily can be a Hawkeye one weekend and a Husker the next.  Or maybe have butterflies one week and then Minnie Mouse the next.  Right now we are sticking to basic tan.  In fact, because her hair is finally filling in, we get far fewer stares and questions these days.  The headpieces and cords often seem to just disappear into her hair.  I am sure in a year or two, Lily will be ready for sparkles and rainbows. 

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. 

Cochlear Implant Resources and Services by Company

Here's a new one-stop-shop and resource for professionals working with students with cochlear implants that was developed by the Illinois School for the Deaf.  It focuses on resources and services offered by each implant company.

Education Resource for Public School Teachers on Hearing Loss

Interesting resource developed in Missouri to educate public school mainstream teachers about childhood deafness and to help them understand communication and educational issues relevant to children who are deaf and hard of hearing who use hearing aids and cochlear implants.  It's just the basics, but provides a great introduction.

Internet Capability in Cochlear Implants

When we spoke at the Advanced Bionics headquarters, we envisioned the future for people with CIs. We thought they'd be the lucky ones with "CIA style" hearing.  Maybe listening to someone whisper across a huge field?

Here's a new take by Google.  "Vint Cerf, vice-president and "chief internet evangelist" of tech giant Google, foresees the introduction of internet capability to existing neural interface technology such as cochlear implants, allowing, as an example, web radio played direct from computer to brain." So cool.  More

Let Our Children Hear — And Learn To Speak - South Africa Editorial

A very interesting editorial in South Africa's The Time's called Let our children hear — and learn to speak

Taking Lily's Cochlear Implants off at Night

We have taken Lily's Cochlear Implants off right before she goes to sleep for the past 15 months.  It is a ritual of sorts, except for the last few nights when Lily has asked, NO demanded, that she wear her CIs to bed.  She definitely wants to hear and "count sheep" because "I can't sleep."

It kills me to take her ears off at night, but it killed me even more to hear her saying "I want two CIs on" and crying until we put them back on her  (We were a bit thrilled that she used such a long sentence). 

So Lily has been falling asleep with her CIs on and then we remove them after she falls deep asleep.  This works great until one battery dies and starts beeping.  It can wake her back up because she is still hearing with the other CI.  Alas...

Lily has always napped with her CIs on, so we will continue to live the CI motto "Wear your CIs all waking hours" and then some non-waking hours as well. 

AB Cochlear Implant Article in the LA Times

There was an excellent article in the LA Times today called "Cochlear implants open deaf kids' ears to the world."  It chronicles a little boy named Tyler from CI surgery and activation, to speech at the John Tracy Clinic.   Hope we see more mainstream media covering this new generation of kids with Cochlear Implants.  Talk about a changing industry. It's certainly not business as usual. 

My Favorite Panel at the Moog Center Workshop

One of my favorite panels at the Moog Center Parents Workshop was the Kids and their Moms panel.  We've seen a number of panels before, but this one really resonated for me because the experiences of these kids at seven, eight and nine were going to be most like Lily's experiences.   These kids were all implanted with CIs relatively young, they were all bilateral and were all educated with an Oral approach at the Moog Center. 

Each kid mainstreamed in the first grade and continued to do very well.   They all described their "best friends" when asked about a social life.   It was really moving.  Certainly the kids continued to have certain challenges like hearing in very noisy places such as the lunchroom and of course swimming.  (This topic always comes up so please Advanced Bionics, Cochlear and Med-El hurry up with the water proof CIs.)  These parents also had to figure out how to advocate for their kid in this new environment, after leaving the safety and security of the Moog Center. 

It really made me weapy to hear how these kids talked with ease and could answer questions from other parents that were posed from across the room.  It just reaffirmed for me that even though there will be lots of challenges, Lily is going to do very well.

Moog Center's Parent Workshop - We're in Love! Part 1

We spent the last few days at the Moog Center's Parent Workshop.   We are in love with this place.  The workshop had about 15 families with children from one to five years old who had hearing loss.  Some kids wore hearing aids, many wore Cochlear Implants and a few wore both.   

The families were from all over the country and seriously committed to helping their kids learn to talk and listen.  The last question of the seminar from the parents was when can we come back?

The workshop lasted four days and covered topics such as Modeling and Imitation, Simulated Language Learning, Audiology, Benchmarks, Capitalizing on Routine Activities, Mapping, IEPs, Teaching Family and Friends about Communicating with your Child, Parents Share and a Kids Panel made up of first and second graders and their Moms.  Betsy Moog Brooks delivered most of the sessions and seemed to have an answer for every question that the parents asked.   She meant business and was clearly there to make an impact on kids with hearing impairments.   

Bestsy’s mother, Jean Sachar Moog was also there and presented research on Early Educational Placement and Later Language Outcomes.  She highlighted the significant impact two-year-old classes for D/HOH kids can make in later language outcomes.  These two women are leading the way in helping children learn to talk and listen.  What a thrill to be a little a part of their lives.

The research they gave us about the Moog Center says that at three years old 81% of their kids were at or above their age level in receptive vocabulary and 86% were at or above their age level in expressive vocabulary.  At age five, 94% were at or above their age level in receptive vocabulary, 97% in expressive vocabulary, 91% in receptive language and 77% in expressive language.

It seemed nothing at the Center happened by accident.  Everything was recorded, strategic and intentional.  We would move to St Louis in a minute if Lily was not thriving from the services in our area.   Lily had an hour of speech therapy everyday with Laurie, a Moog SLP, and spent the rest of the time talking with Moog teachers in the toddler room.  At the end of the workshop, we knew everything Lily worked on and where they believed we should put our “language and speech” energy.  

They said we should focus on requiring Lily to use two and three word sentences every time she talks.   Lily has a huge receptive and expressive vocabulary, but just needs to move towards more complex sentences.   If Lily doesn’t attempt a two or three word sentence after we model it, they said we shouldn’t give her what she wants.  

This is their model of modeling and imitation.   It seems to already be working.  Lily is talking non-stop and we don’t know where she is coming up with some of the words and sentences she is putting together.  Some of that started before we got to St Louis, but the "strategy" seems to definitely be accelerating her language.  

The facility itself was beautiful, incredibly quiet for the best learning environment and run with an eye for detail.   We are re-energized!!!

Here are some photos of the Moog Center.

(Note the metal slide and static-free play structure)

A Trip to the Zoo - There Is So Much to Talk About

This week we went to the zoo with some of our CI pals that also work with the Omaha Hearing School.  The other kids are about two years older than Lily and are talking beautifully. 

Karen, the director of OHS, commented that all the Moms were seamlessly reinforcing, expanding and correcting everything each other's kids were saying.  We've all had such great training from Karen, I think it is now just second nature.  We are so lucky that the Omaha Hearing School is able to continue serving our community and providing top-notch oral education to this area of the country.

Highlights at the zoo included Lily's first horse ride, catching butterflies, and the worm Karen helped the kids pick up and put back in the dirt.  Oh what she'll do for a language experience. 

We Love the Beach

I Love the Beach has been the theme at Kindermusik this session, so actually going to the beach was the perfect opportunity to build on what Lily was learning.  Of course I love the beach as well; the smell, the sounds and the sunsets.  Reminded me in many ways of living in Hong Kong. 

We dipped our toes/legs in the ocean twice and Lily loved it.  She learned new words like ocean, beach, waves, shells, and seaweed.  She loved getting sand between her toes and putting all the seaweed in a big pile.  

We were really cautious about getting Lily's processors wet. One fall in the water and it could have meant trouble.  We did learn from our tour at Advanced Bionics that even the Body Worn Processors are pretty water resistant.  The real issue for the BWP is the headpiece taking a direct hit.   So with that knowledge, we monitored Lily's jumping in the waves, making sure she stayed upright when the water came in, but she was a little wet when we left.  

Hopefully the next time we go to the beach, Lily's processors will be totally waterproof and she can splash to her heart's content. If not, we'll have to resort to MacGyver waterproofing methods. 

The Fourth Of July - Sounds To Celebrate

July 4, 2007, came 20 days after Lily was born. We sat on the porch that night and watched the fireworks. Each loud boom did nothing to stir Lily. We already knew she had failed her newborn screening and watched anxiously for any sign that she could hear what everyone for miles around could hear that night. No such luck. We cried. We worried. But most of all we wondered what life would be like for her, for us, for those around her.

July 4, 2008, came 66 days after her right ear was activated (and 44 days after her left ear). We sat on the porch and watched the fireworks and heard the booms. Lily did too. We cried. We laughed. We rejoiced in the power of her new ears and her ability to begin to distinguish sounds.

July 4, 2009, 750 days after Lily was born we sit and watch the fireworks and hear the booms. Lily hears them too and asks for "More, more, more!" She tells us the colors of each one - "Green, Yellow, Red, Blue." We cry. We laugh. We celebrate the sounds of the season. 

We still worry about every little bit of Lily's life, but we're happy and excited in the moment and confident that there will be many more celebrations in the future. Happy 4th everyone!

Our Trip to Advanced Bionics - Part 2

One of the things that was so fascinating about Advanced Bionics was that much of the production work was done by hand.  We watched each person as they created the internal pieces and slowly took each wire under microscopes and soldered them down.  

As the internal pieces moved down the line, each person's work was check by the person after them to ensure the highest quality standards.  They told us that their rate of production without errors (there was a technical term for this) was amazingly high for hand work, even rivaling automated production. 

The AB Director of Manufacturing, went through every step of the production process with us.  You could tell this guy had a lot of passion for the manufacturing process, for his employees and for the end-user.   He even told us a story about another customer and got a little weepy.   It was clear he was in the business for the right reasons and really wanted to make the best product that was absolutely possible.  He was so excited about all the new innovations they were working on. 

We now also finally understand what the manufacturing issue was with their Vendor B problem and saw the steps they have taken to both remedy the issue (they don't use Vendor B anymore and Vendor A manufactures their product differently) and then emerge as a better company with more risk assessment at every level.  This discussion was very reassuring. 

Lily did receive AB's new Melody the Monkey.   She is so cute and has bilateral cochlear implants, something Lily instantly related to.   Melody is just Lily's size and comes with a pink summer outfit. 

When we left AB in our rental car, Lily insisted that we put on Melody's seatbelt.   The traffic in and around LA was overwhelming.  Made me thankful we live in Nebraska where the streets are wide and the traffic is only heavy in our rush 30 minutes. 

Advanced Bionics - Making The Magic Happen

Here are just a few of the great people who played a part in creating Lily's cochlear implants. The folks at Advanced Bionics were so gracious with their time and spoke candidly about the importance of their work on helping people hear better. They were as excited to meet Lily as we were to have her meet them. We can't thank them enough.

Our Trip to Advanced Bionics - Part 1

We have always wanted to visit Advanced Bionics since the moment we chose the company's Cochlear Implant for Lily.  In fact if we knew it was so easy to visit, we might have journeyed to California much earlier to take a tour, meet the people and  see where the magic happens.

We were in the area for Lily's Dad's work, so added a few days on to trek to Advanced Bionics which is located just North of Los Angeles.  AB has two locations, a factory and a headquarters building, which is soon to become one in a beautiful new facility down the street from their current headquarters. 

While we only requested a tour, we were invited to speak to the entire company about Lily's hearing journey.  AB feels it is important for every member of their company from factory workers to the CEO to hear the CI stories of their customers, both good and those who have had challenges.  With this aim, AB invites about 30 customers a year to speak and requires their staff to attend.

We were one of those customers to speak to the entire  staff in both locations.   It was truly an honor, and yet quite intimidating to talk to those inventing, improving and producing products that have allowed or will allow Lily to hear better. 

We saw it as a rare opportunity to directly impact those who will shape Lily's hearing journey through improved hardware and software.  We saw it as a opportunity to directly thank those who made Lily's implants.  (They pulled a half dozen people off the floor to meet with us, who in part made Lily's implants.)  We also saw it as a time to motivate and inspire the company by demonstrating Lily's success with acquiring listening and spoken language. 

I'd say we left our visit as "believers."  While we definitely identified things we thought they could do better, we drank the Kool-Aid and are so happy we chose AB for our partner in this hearing journey. They even told us and showed us some of the secret stuff they are working on and boy are we excited.

There is so much to report about our visit and vacation, we'll have to break it up in a number of blog posts.  As they say on TV.....Stay Tuned.   

289 Words ++++

As part of the Baby Lab, we fill out the MacArthur Bates Word Inventory.  As we are now only keeping track of expressive words, this inventory is getting harder and harder to do.  Lily is saying so much. 

To fill some of the areas on the inventory out, we have to resort to saying "Lily, what's this?"  And she'll know.  And we will think, "How does she know that?"   We've checked 289 words, but I think she probably knows another 100 or more that aren't on the list. 

We are so thankful for all the supports we receive, for her Cochlear Implants and that she is just a great kid, with a good sense of humor and lots of patience for her passionate parents. 

Happy Birthday - Lily Turns Two

Lily turned two today and had a heck of a party with family and friends. She had an "Oswald" cake and way too generous grandparents and friends who filled the living room with presents. 

Last year at this time she was just beginning to use her "ears" to recognize and respond to sounds. Tonight I was filling out the doctor's checklist for her 2-year check-up tomorrow and she's meeting all of the developmental and language milestones on the list (20+ words, two-word sentences, use of pronouns, following 2-part commands, etc.). Wow! What a great birthday gift. 

Here are a couple of pics from the party. Enjoy!

Jazz In June

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

Preparing For Our Advanced Bionics Trip

From the day we chose Advanced Bionics for Lily's implants we've wanted to make a visit to see the company in action. As luck/fate/karma would have it I was going to be in the area attending a trade show for my work. We decided that it would be a perfect opportunity to tack on a couple of vacation days and make it a family adventure as well. So the whole family will be making a trip to sunny SoCal in a few weeks. 

Lily's Mom made a few calls and managed to schedule a tour for us at their facilities. During the conversation, the AB rep asked if we'd be interested in speaking to the employees to share our story. We jumped at the invite to meet the people who've made such an impact in Lily's life. So we're now in the process of prepping a 60-minute presentation to be given to both the manufacturing facilities and AB headquarters. Stay tuned for updates and insights.

A CI Success Story for Inspiration

Here is a great article about a successful 18 year old, who is a bilateral CI user and the co-valedictorian of her high school.

Boys Town Cochlear Implant Run

We survived the Boys Town Cochlear Implant Run.  Lily's Dad ran the five-mile race and the rest of us walked the one-mile race, very quickly.  Then it was off to face/arm painting (a first for Lily) and a visit with our audiologist Jeff who was staffing the information booth.  Jeff is a pro.  He always answers all of my questions very seriously, including those I start with, "Is it true that...? and I read on the CI Circle that..."  

A couple of pictures to summarize the day. 

Great Moments In Photography - Kabloom Studios

This weekend we had Khara of Kabloom Studios come over to shoot some professional pics of Lily. It was the first time we have used a professional photographer since Lily's implants. There were a couple of great moments. The first one came when we didn't have to explain to Khara that our daughter can't hear so you'll have to make her smile/laugh/etc. with something other than funny sounds (a standard for most children's photographers). The second great moment was watching Lily interact with style and ease. Khara would ask Lily to do something like "kick the ball." Lily did everything asked of her on the first try and "worked the runway" like a pro. Can't wait to see how the shots turn out.

Cochlear Implant Mapping At BoysTown

Lily had her mapping appointment yesterday to adjust her computer program to make sure she was getting access to all sound frequencies. The map is remaining pretty consistent between visits which is good news. We have been going fairly regularly, first a mapping every month, then every three months. Now we're not due back for six months. The best news though is that she's consistently responding to speech sounds in the sound booth at 20 decibels and tones between 20 and 30dBs. 

To test the levels they pump either a voice or a specific frequency tone into the booth and watch to see if she responds by looking in the direction of the sound. When she responds the operator activates a visual stimulus to reinforce the action. In this case a dancing Minnie Mouse or Winnie The Pooh doll. Lily quickly mastered the game and by the end was saying "Minnie" or "Pooh" when she heard the tone in addition to turning to the sound. Our trip to DisneyWorld earlier this year is paying dividends.

Here's a pic of Lily and Mom in the booth taken on the closed circuit TV that allowed Dad to watch what was happening.

Vivosonic - ABRs Without Sedation Or Anesthesia

One of the Google ads running on our site attracted my attention. It was an ad for the company Vivosonic that has developed a new ABR procedure that "enables recording clear responses without the risk or additional cost of sedation." It also allows the test to be administered in a variety of settings like schools, rather than a doctor's office. Here's a link to the product and a pretty good video outlining how it works.

When we took Lily in to the audiologist after her newborn hearing screening, we were told that she would need to be totally quiet and still to get accurate results. Because she was so young, we were able to test her by timing the doctor's appointment with her nursing and sleeping schedule so she slept through both ABRs without needing sedation. However, if she was any older or any more active that would not have been an option. Looks like now, parents may now have a better option. I'm not sure how prevalent this new technology is, but it's nice to see it becoming available. It's hard enough as a parent having to go through MRIs, CAT scans and CI surgery itself without having one more medical sedation.

Is anybody familiar with this product?

Quick Lily Language Observations

Lily and I get stuck in the rain quite often and it is usually when we are at the park.  Today, fortunately, I brought umbrellas.  As the rain started coming down and we were sitting under the umbrella, Lily listened for a moment and then said tap, tap, tap, just like the sound of the rain drops hitting the umbrella. 

On the way back to the house, as we were peering out from under our umbrellas, we saw two campers.  She had been noticing this huge camper and then saw a much smaller camper. but noted that they were both campers.  She loves saying, "Two."  I told her this is a big camper and that is a little camper.  She repeats "big - little, big - little."

I also asked her today, "What is your Kindermusik teacher's name?"  She said "Shawna."  Correct.  Then as we were driving by her SLP's building I said who works here?  She said "Staci."  Correct.  I am loving this extended memory. 

Yeah for Cochlear Implants!!!  None of this spoken language would be possible without them. 

Speaking Gigs

In celebration of Lily's one-year hearing birthday on Wednesday, we've decided to undertake a new venture. We are currently developing a presentation revolving around our journey from initial days of diagnosis through our daily adventures in learning to listen and talk. If you have a need for speakers from the parents' perspective, contact us for availability. 

New Research on Cochlear Implant Failures

I came across this research abstract at COMD News website. The post highlighted new research published in the ORL - Journal for Oto-Rhino-Laryngolgy. The research looked to "present a failure analysis after cochlear implant revision surgery in a large series of children and adults and to assess the outcome and audiologic performance." 

The researchers looked at 56 device failures in a variety of children and adults, looking at multiple brands of devices as well. Here's how the failures were categorized; "The most frequent causes for revision were hard failures (58.9%), most commonly caused by traumatic impact (37.5%), especially in the pediatric population. Soft failures were less frequent (21.4%)." 

The good news:

"Surgical reimplantations, although challenging in some cases, were performed without complications and with an electrode insertion depth comparable to that at the time of the initial implantation in all patients. The average audiologic performance improved by 2.4 dB in pure-tone perception levels after reimplantation. Conclusion: The cochlear implant failure rates vary between children and adults as well as between different implant manufactures. However, cochlear reimplantation is safe with excellent and predictable results in audiologic performance."

Here's a link to the Research Abstract.

Boys Town Memorial Day Run - Join Us!

Every year Boys Town National Research Hospital holds a Memorial Day Run to raise money and awareness for its Cochlear Implant Center. It's a really well run event with over 2,500 runners and walkers. There's a Children's 1-Mile Fun Run, a 1-Mile Walk/Run and the 5-Mile Walk/Run. Here's a Memorial Day Run Video from the event.

Last year, we met several friends and pushed our kids the 5 miles in their strollers. This year, I've decided to take a run at the run, while Lily and her Mom will likely gather a group to walk the race. It's a really fun time with children's activities and trophies for winners. Here's a pic from last year where Lily got to say hello to Dr. Lusk, her CI surgeon.

If you'd like to participate or donate, here's the registration link. Hope to see you there!

49th Annual Pancake Fundraiser

Susan and I volunteered at the annual fundraiser for the local CI Sertoma club. The event was well attended with over 1,200 people partaking in tasty pancakes. The proceeds went to fund a local hearing aid bank and other initiatives like sending CI kids to camp.