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).

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.

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.

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!

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.

3-D Scanner May Lead to Better Hearing Aids

Ran into an interesting article in the latest issue of Fast Company that looks at MIT's latest 3-D digital ear canal scanner. The technology will enable a better reading of the shapes and shifts in the ear canal than the traditional silicone ear molds. While the technology isn't likely to effect Lily and other cochlear implant users, it could be a big advance for those requiring hearing aids. MIT hopes to commercialize the technology by 2011.

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.

Research on the Importance of Adult-Child Conversations to Language Development

In the latest LENA Newsletter, the featured expert was Dr. Frederick Zimmerman, chair of the Department of Health Services in the School of Public Health at the University of California, Los Angeles.  As the lead researcher, he discussed "Teaching by Listening: The Importance of Adult-Child Conversations to Language Development," which was published in the July issue of Pediatrics.  The following summarizes the findings of the study.

The results supported our hypothesis that parent-child interaction is best when it's a two-way street. We found that each additional 1,000 adult words a child was exposed to led to a .44 increase in the child's PLS-normed score, whereas for every additional 100 conversational turns there was a 1.92 increase in the PLS-normed score. For both stimuli, these changes were approximately one standard deviation from the norm. Therefore, in that standardized sense, adult-child conversations were approximately six times as powerful at aiding language development as adult speech input independent of conversational exchanges.

Communicating Her Needs Or Stalling Tactics

Lily is quite the communicator. She's using her new skills to try and convince us to let her stay up later at night. Last night we came home from dinner at Grandma's and before Lily headed upstairs to put on her pajamas she ran over to the kitchen table, jumped into her booster seat, buckled herself in, and said, "I play cards now Mommy". She was referring to activity cards that she played with Mommy earlier in the day from Advanced Bionics Listening Room. She knew that it would be hard for us to say no to just a little more language learning. Clever girl. Here's a photo.

Tonight was a little different. We've been reading the book "Baby Can't Sleep." In it the daddy tries to get baby to fall asleep by counting sheep to her (One sheep chasing fireflies, two sheep playing guitar, three sheep staring at stars, etc.). Lily was a little restless and reached for me to pick her up and said "I count sheep, I count sheep, I count sheep," which sounds remarkably like "I can't sleep." Once I made the connection we counted a few sheep and she promptly relaxed and fell asleep. Ahh the power of language.

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)

Garmin GPS - Learning To Speak With A British Accent

This past week our family went to St. Louis to visit the Moog Center for an intensive workshop (more info about our experiences to follow). 

Since we're not from the area we borrowed my Mom's Garmin GPS system to get around town in our rental car. We programmed each trip around the city and it gladly spouted directions (although not 100% accurately). We set the Garmin's "voice" to speak with a British accent. Lily quite enjoyed it and after a while she began to imitate the words, "Turn Left", "Turn Right" at every turn. By the end of the weekend we began to wonder if she would eventually learn to speak with a British accent. Who knows, maybe we should use it more often ;-)

AB On The Brain

So as we're going back over notes and resources from the past two years in preparation for our presentation at Advanced Bionics, Lily's Mom stumbled upon another great blog by a recent AB user and a post about why she chose AB. Good reading and a great summary of AB benefits.

Comprehensive Hearing Resource for Parents and Professionals

We received a BEGINNINGS manual at a conference we attended a few months ago.  This is the most comprehensive hearing manual I have seen in our hearing journey.  It gives brief, but thorough information about early intervention, communication options (great videos), assistive technology, audiology, school issues and legislation.  It is especially ideal for parents of newly identified kids and those who are early in their journey.

I just discovered they have an online version of the manual and that they offer additional information through a newsletter and videos which may be helpful to parents of kids who are deaf or hard of hearing. 

The mission of BEGINNINGS is to inform and empower parents as they make decisions about their child. In addition, BEGINNINGS is committed to providing technical assistance to professionals who work with these families to help the children achieve full participation in society. 

BEGINNINGS a non-profit agency, located in North Carolina, works to provide an objective approach to meeting the diverse needs of families with children who are deaf or hard of hearing and professionals who serve 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. 

Comprehensive Article on Hearing Loss and Causes

Not a new article, but an excellent summary titled Newborn Hearing Screening — A Silent Revolution by Morton and Nance in the New England Journal of Medicine (May, 2006) about causes of hearing loss, both environmental and genetic. 

Otoacoustic Emissions (OAE) and Tympanometry

Interesting article and photos about which parts of the hearing system are screened with an Otoacoustic Emissions (OAE) test and a Tympanometry.   Lily had a OAE in the hospital on Day 10 (as part of the mandatory newborn hearing screen), one at the first audiologist's office and another one at the second audiologist's office.   The audiologists have also used the tympanometry on a couple of occasions and Lily's eardrums work just fine. 

Here is a sample of the article to get you really excited:

"The three main parts of the ear are the outer ear, the middle ear, and the inner ear (cochlea). When the hearing system is functioning as it should, sounds enter through ear canal, causing the eardrum (tympanic membrane) to vibrate, which in turn moves three small bones in the middle ear (hammer, anvil, stirrup).  This movement stimulates fluid movement in the inner ear (cochlea) and the sound signal is transmitted through a nerve to the brain. At the same time, the inner ear emits small signals, called  "otoacoustic emissions" that move back through the middle ear and into the ear canal.  These emissions are picked up and analyzed by the OAE screening equipment."

"A health care provider can often perform tympanometry which measures the movement of the eardrum.  This helps the provider know whether there is fluid/infection in the middle ear.  Tympanometry cannot test the functioning of the inner ear."

AB Hearing Journey for Babies and Toddlers

A new section on Advanced Bionics Hearing Journey website, targeting babies and toddlers, has just been   launched.  This is an excellent site for free activities and resources to support the development of speech, language and listening skills.  The site features works from Dave Sindrey, AVT and Chris Barton, Music Therapist. 

Glad We Got A Stokke

Unlike our current stock market investments, the investment in our Stokke stroller is looking better and better. Today's CNN points to a new study published by the Dundee University's School of Psychology, which states that babies in strollers should face their parents or risk long-term development problems in their children. The study found that "children not facing the person pushing them were significantly less likely to talk, laugh and interact with their parents." By turning the buggy around, parents' rates of talking doubled. While I'd take the findings with a big grain of salt, it does validate our experiences with our "parent-facing" contraption.

LENA - Every Word Counts

Last week during Karen's visit she mentioned that the Omaha Hearing School had just purchased a new speech language measurement system called LENA. It's a new technology that measures and analyzes the amount of language a child receives in their everyday environment. Basically the baby wears a tiny speech listening device that measures sound and then connects to a computer to analyze the conversations that take place throughout the day.

We're excited to check it out. In the meantime, for more info about it, check out LENA's website that offers links to research about language development, sample videos and activities, and some parent testimonials.

Speech Sounds - The Basics

Cochlear has a great resource that provides a rich overview of all the speech sounds, along with activities and examples that can be used everyday. Well worth checking out - Speech Sounds for Parents and Professionals.

Auditory Brain Development

Great PowerPoint on Auditory Brain Development: A Paradigm Shift for Children Who are Deaf or Hard of Hearing by Carol Flexer.  She is a AVT, author, professor and speaks all over the world on developing listening and talking in children with hearing loss.  See her book on the left side of the blog. 

Her main ideas include:

- Hearing is a first-order event for the development of spoken communication and literacy skills.
- Anytime the word “hearing”is used, think “auditory brain development”!!
- Acoustic accessibility of intelligible speech is essential for brain growth.
- Signal-to-Noise Ratio is the key to hearing intelligible speech.

Lily Featured in SNRP Publication

With Lily's great personality, brilliant mind and striking good looks, it's likely she'll be featured in all kinds of publications someday.  Maybe the cover of Rolling Stone.  Perhaps Time Magazine.  Certainly Yoga Today.  Already Lily, and our trip to the AGBell Conference, was featured in the Fall edition of the Southeast Nebraska Regional Program (SNRP) newsletter.  See page three - Parent-to-Parent Corner. 

Download SNRP Fall 2008 Newsletter.pdf

After the Legislature closed the Nebraska School for the Deaf, they divided up the state into regions to serve students who are deaf or hard of hearing.  For our region, SNRP provides a variety of services from lending materials and sign classes to social events and training opportunities.   

AG Bell Presentation Materials Now Available

Susan, Lily and I had a fantastic time at the AG Bell Conference in Milwaukee this past June. Fabulous information, insights, and inspiration. For those not able to make it, AG Bell has now made the presentation materials available online. I'd highly encourage you to browse and learn from these. Great research and great info from professionals from around the world.

Also, while not a requirement to download, consider becoming an AG Bell member so resources like these can continue to be available to parents and their families. Happy surfing.

Cochlear Implant Workshop at Boys Town

Lily and I will be on a parent panel at an upcoming workshop sponsored by Advanced Bionics (Susan is teaching that night, but will be there in spirit). The workshop, titled "Current Trends in Cochlear Implants," will be held at Boys Town National Research Hospital on September 11th. I went to a similar session last year as we were beginning our journey and it was quite helpful to hear real-life stories and talk to parents who had gone through similar experiences. It'll be nice to be on the other side of the panel to try to help others who are navigating similar circumstances this year. If you're interested in attending, here are the details:

Where:
Lied Learning & Technology Center
Boy's Town National Research Hospital
425 N. 30th Street, Room 311, Omaha, NE 68131

When:
Thursday, September 11, 2008 • 6:00 pm – 8:00 pm

RSVP:
Linda Luallen (Linda.Luallen@AdvancedBionics.com, 800-678-2575, ext. 1467)
Complimentary child care will also be available if needed.

Back to School Tips

While Lily is a few years away from going to school, it's never too early to start planning and advocating for your child. Tonight we're going to a parent meeting with Lincoln Public Schools (LPS) where they're supposed to inform parents about the changes to the curriculum and services for the upcoming year. I'm sure we'll give more rundown once we know more.

In the meantime, here's a link to and article "Deaf or Hard of Hearing Child? What to do BEFORE School Starts" from the Hearing Exchange website with helpful tips for what to do before the first day of school to make the year go better.

Changing Lives and Swimming

I got a call yesterday from the Mom of Abigail who said, "You've changed our life.  Abigail is swimming with her CIs on.  She could hear at swimming lessons the entire time and the look on her face was priceless."   Everyone says you can't swim with CIs but some brilliant parents have figured out a way to seal the CIs in a plastic bag and attach it to the kid's head with a swim cap.  Works like a charm.  I learned this was happening from my favorite resource, the CI Circle, an online Yahoo Group.  There are 1500 people that chat about everything related to kids and CIs.  For new parents and professionals, this listserv is a must read.

Starting Places

For those readers out there that want to get started learning about hearing loss and the resources out thre that helped us tremendously in the early days of finding out about Lily's hearing loss, here are a couple of the great resources and other's blogs that helped us through some dark times.

Resources:
Omaha Hearing School and Boys Town National Research Hospital (who knew both of these guys were in our backyard)
John Tracy Clinic
AG Bell Association
Oral Deaf Education
CI Circle - Great Yahoo! discussion group for parents

Cochlear Implant Companies:
Advanced Bionics
Cochlear Americas
Med-El

Other Parent Blogs:
Turn On My Ears - Drew's Blog
Elliot & Oliver's Story

There are literally hundreds of more places our research has taken us, but these should give everyone a good first start.