Life is Bliss - Lily's Cochlear Implant Journey

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

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. 

Blog Friends

I am an active reader of many CI kid blogs but don't comment much.  Occasionally, in the early days, I would send off emails asking questions and hoping I too would have a CI Rock Star kid. 

One of our favorite blogs was and still is Turn on My Ears, featuring Drew and his amazing family.  We met them this summer at the Moog Parents Workshop, although I felt like I already knew them.  Then we had the opportunity to meet them again in Columbus, OH last week.  Drew is doing amazingly well.  

One of the first things that Drew's Mom said to us was something like don't you wish we could have fast forwarded to this day to know that they would be talking AMAZINGLY well already.  We could have saved months of crying in those early days.   YES!  Lily's Dad and I totally agree!!

Here are Drew and Lily talking about being "King of the World." 

We are also thinking about our friend Landri who we met through our Blog and was activated with her CI this week.  Can't wait to hear this little one tell us she's "King of the World."  It won't be long.

Santa Claus at the Gas Station

We've started teaching Lily Christmas vocabulary.  Actually with simple exposure to words once or twice, she is able to understand the meaning and use the words immediately.  She is already talking about Christmas decorations, snow angels and candy canes. 

Lily is also trying to figure out Santa Claus.  She knows Santa brings toys to kids and that he wears a big fur coat.  This basic information got us into a little bit of trouble when Lily and I were in the gas station recently. 

There was a very tall woman, maybe from Africa, with a huge shoulder to toe fur coat.  Lily saw her immediately and said "Santa Claus!!!"  The woman with some sort of accent said, "What did she say?"  I said, "She thinks you are Santa Claus."  "What," she said confused.  I responded again, "She said she likes your coat."  The woman responded "I like her coat too!"  Lily was wearing her leopard print coat with hot pink accessories.   

You never know where Santa may be or the friends Lily will make with all this talking. 

Fun With A Flashlight

Last night we were reading Goodnight Gorilla, one of Lily's favorite books (special thanks to Uncle Chris for picking this one out). The story is about a mischievous monkey who escapes and unlocks the cages of all the other animals in the zoo as they follow the zookeeper home for a good night's sleep. The zookeeper has a flashlight and Lily likes to follow along in the book while she points her own flashlight. After a couple of readings Lily began pointing the flashlight all over the room stopping at each item and naming them - "Lamp... door... another door... fan... dresser." What a fun vocabulary game. 

Upcoming Moog Center Workshops

As you may remember we had a fantastic experience this summer attending the "Helping Your Children Learn to Talk" workshop in St. Louis. It was without a doubt one of the best couple days you can spend and well worth the investment. Well, the Moog Center is taking applications for this summer's training and offering a variety of other programs for parents and educators alike. Here's a listing. Check it out and don't forget to tell your educational professionals as well.

January 21-22, 2010 - $300 

Pediatric Cochlear Implant Programming 

A workshop for cochlear implant audiologists who work with infants and children. This workshop will focus on cochlear implant programming techniques for optimizing access to sound for infants and young children.  Protocols for monitoring progress in children at various developmental levels will be discussed.  Instruction will include live demonstrations, videos, and presentation of relevant case studies.  Seating for this interactive workshop is limited. CEU’s available.  Contact:  Connie Ciavirella at 314-692-7172 or cciavirella@moogcenter.org 

 

February 18-20, 2010 - $350 

The Earlier They Get Started, The Faster They Learn To Talk. 

For teachers and SLPs providing early intervention services to children with hearing loss. This workshop will focus on techniques for helping parents work with their own children and strategies for professionals working with very young children to develop spoken language skills.  Instruction will include live demonstrations, videos and hands-on opportunities.  Seating is limited. CEU’s available.  Contact:  Betsy Moog Brooks at 314-692-7172 or bbrooks@moogcenter.org 

 

July 7-11, 2010 - $150 

Helping Your Child Learn To Talk 

A Workshop for Parents of Children who are Deaf or Hard of Hearing, ages 2 to 5 

This four-day workshop will provide parents with opportunities to learn strategies to help their children learn to talk while their children receive daily individualized instruction by a staff member of the Moog Center.  Each day is packed full of activities for the children and information for the parents.  Children over age 3 may receive speech and language evaluations, for an additional fee.  Contact:  Betsy Moog Brooks at 314-692-7172 or bbrooks@moogcenter.org 

 

September 2010 – Date to be determined. $150 

Strategies for Professionals of Mainstreamed Students with Hearing Loss 

For SLPs and teachers who have a student with hearing loss in their classroom. Learn effective strategies that work with students with hearing loss who are mainstreamed into your school setting.  Topics to be 

discussed include:  hearing loss and effects on language, academic difficulties, assistive listening devices, and support services. Contact:  Connie Ciavirella at 314-692-7172 or cciavirella@moogcenter.org 

 

October 2010 – Date to be determined. $300 

From Assessment to Practice:  Developing Spoken Language Skills in Children with Hearing Loss For SLPs and Teachers of the Deaf 

This workshop will focus on accurately assessing language levels, identifying areas for language instruction, selecting appropriate goals and objectives, and planning lessons for children with hearing loss.  Topics include:  Using norm-referenced language evaluation tools to diagnose strengths and weaknesses, using criterion-referenced language rating forms to select goals and mark progress, and implementing targets into a variety of language lessons. CEUs available. Contact:  Connie Ciavirella at 314-692-7172 or cciavirella@moogcenter.org 

 

November 2010 – Date to be determined. $300 

Conversational Language Activities for Deaf Children For SLPs and Teachers of the Deaf 

This workshop will focus on implementing language goals into a variety of conversational language activities for children with hearing loss.  Topics include:  Modeling and imitation techniques for correction and expansion of language, selecting appropriate language goals, planning conversational language activities to meet language goals and a variety of ideas for many different kinds of conversational activities.  This workshop will also include classroom observations and some hands-on practice. CEUs available.  Contact:  Connie Ciavirella at 314-692-7172 or cciavirella@moogcenter.org 

 

For your convenience, the Moog Center offers onsite workshops for larger groups.  If your staff or district is interested in scheduling one of the above workshops onsite, please contact Connie Ciavirella at 314-692-7172 or cciavirella@moogcenter.org 

 

Visit the website at www.moogcenter.org for complete workshop listings and information about the Moog Center’s publications.

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.

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)

 

The Halloween Experience

There is not much Lily missed about Halloween.  We had the whole experience including making cookies, reading loads of books, attending lots of wonderful Halloween parties and of course Trick or Treating.  Thanks to everyone who added to the flavor. 

Lily learned all about skeletons with bony fingers, cackling witches that say "Hee Hee Hee" and that a "Thank You.  Happy Halloween" always follows the neighbors filling your basket with candy.  We shared many fun experiences with our friends and family and Lily is already plotting next year's costume.