Life is Bliss - Lily's Cochlear Implant Journey

Lily talks about learning to ride a bike

At age 5, Lily's training wheels have come off and she is riding independently.  Here's an interview with Lily about how she learned to ride. 

Hearing is all about the brain

Good article on How the brain processes auditory signals.  It's not that easy.  

Phonak's new Roger

Exciting new update by Phonak with Roger. 

"a new digital standard that bridges the understanding gap, in noise and over distance, by wirelessly transmitting the speaker's voice directly to the listener. Available for the education market beginning Summer 2013, Roger is designed to surpass today's Dynamic FM and equivalent digital systems."

Check out The Hearing Review for more information

More at Phonak

Oberkotter Foundation establishes new national center for professional learning in LSL

Oberkotter Foundation plans to establish a new national center for professional learning in listening and spoken language. It will be launched in spring of 2015. 

This is such a needed resource to support professionals teaching children with hearing loss.  It can't come soon enough. 

Hear to Learn classroom amplification project

Thrilled to update you on our Hear to Learn classroom amplification project. Here's a short video describing our dream. 

 

Kindergarten science fair project on sound

Lily's first school science fair was a huge success.  Of course her project was on sound. 

Titled "How loud is my school?" Lily and I measured various classrooms with my phone sound meter.  Lily made predictions, documented all the measurements and then created a graph with the readings. She learned the word "vestibule"  for the school's entryway, knows decibel is a measure of sound, and can now explain what the "speech banana" is all about. 

While the kindergartners weren't judged on their projects, Lily knew she won when her family came for her "official" presentation, she received a ribbon and her amazing school principal (seen below) discussed the project with her. 

 

Pinkalicious - Community Theater

We recently attended a fabulous community playhouse show called Pinkalicious starring Lily's good buddy Emma.  In the dedications, Emma gave Lily credit for inspiring her to try out for the show because Emma only loves red, while Lily loves pink.  Certainly Emma has inspired Lily to do many things like getting involved in theater. 

Fortunately the theater was quiet and the actors wore microphones.  Lily didn't want to miss a single word!

 

 

Interview with Advanced Bionics Senior Execs

Facinating interview with Senior Executives at Advanced Bionics by our friend Howard.

It will give you a lot of hope for the future of hearing with cochlear implants.  

Dana Suskind, CI Surgeon and language advocate

Loving this recent article in the Chicago Tribune about Dana Suskind, a Chicago area CI Surgeon and language advocate.  Her research program, outlined below, particularly resonated with me.  

Teaching parents about the importance of language is a key component that must drive early intervention engagement.  Tools like LENA help bring awareness to how much and how you are talking and it gives parents a 30,000 word benchmark for real direction.  And this could be applied to any family, not only to those with a child with hearing loss.  

Suskind worked with her University of Chicago colleagues to launch 30 Million Words, a program that sends research assistants to the homes of at-risk children for 13 weeks and educates their parents about the importance of engaging their children in an ongoing dialogue — and, equally important, offers them the tools to do so.

Researchers work with the parents to develop weekly word goals, with an ongoing emphasis on "the three Ts: Tune in, talk more, take turns," Suskind says.

"Babies aren't born smart," she says. "They're made smart. And how are they made smart? Your words."

"All parents should be allowed to know the power they have. If we can change how parents view their language and the power they have to impact their kids' trajectories, it will be amazing."

 

Neptune Batteries - My discovery

I can't believe I haven't posted my amazing discovery about longer-life AAA batteries for the Neptune.  

Lily wears bilateral Neptunes and also typically wears bilateral FMs all day at school that drain her batteries.  We were having trouble with the regular rechargable Duracells making it through the school day. They were also very unpredicatable. 

Then I discovered Rechargable Duracells - Stay Charged.  We now get almost 10 hours of power.  These little batteries have changed our life dramatically, as well taken the burden off Lily's teacher. 

I also see on the Duracell website that they now have a "Quick Charger" and a "15 minute Charger."  These might have to go on our next Wish List. Our current charger takes around 9 hours to charge, so it leaves little room for recharging user errors.   Ahhh technology!

Holidays - Looking back and forward

We've made it through all the holidays.   For some reason it felt like the best holiday season yet. 

Bodie turned one right before Christmas and we can already see the challenges these December babies face.  We're going to have to get much better at Birthday parties, Christmas gifts, stocking stuffers, etc. 

Lily kept questioning us on why she was the only one that got any toys in her stocking.  She's already getting far to clever to trick.  She also kept asking about the logistics of Santa delivering toys around the world.  However, she already understands the concept that you have to "believe" for Santa to come. 

This year was such a great one for Lily's hearing.   She received her new waterproof Neptunes this spring, as well as the ClearVoice software that helps her hear in noise.  The ability to go in water and still hear has been remarkable and has changed our lives in so many ways.  The waterproof thrill is not lost on Lily.  She still tells everyone her Neptunes are "WATERPROOF....CAN YOU BELIEVE IT?" 

Lily also started Kindergarten with a personal FM and a soundfield in her Kindergaten room (with a teacher and student microphone).  It has been a remarkable combination.  While she still misses some of the quiet chit chat, she is picking up on a tremendous amount.  Probably more than some of the hearing kids. Her teachers have been a dream and so easy to work with.  This has made a huge difference. 

Lily's soundfield use has also helped launch my drive and work to develop the Hear to Learn project, where we are putting 100 soundfields in 100 classrooms in four elementary schools. Thank you everyone for supporting this project with your donations and encouragement.  We have truly been blessed with kind family and friends who support our dreams.  The project and fundraising is really starting to come together.  Can't wait for you all to see it in action.   

Here's a few more pictures to fill in the last month.  Where has the time gone?

 

Bodie's first birthday

Mannheimsteam Roller at the Lied

Putting reindeer glitter out on Christmas Eve. 

Husker basketball game to watch Uncle Philip's band

Our favorite gift.  Lily's work from computer class.

Bodie is very busy these days.

Service above self starts early. 

Bodie's Language

Bodie's language has exploded.  He's added "Go" and "woof" and lots of beginning sounds to words like book and bowl.  He has clearly built a large receptive vocabulary like shoes, socks, mouth, where is, ...  Language comes easy. 

Like his sister, he now doesn't stop talking.  HIs language and sounds are varied and he can make his wants and desires very clear.  Five years ago, Lily had been through two surgeries and two activations, with just weeks of hearing.  She could also make her wants and desires understood at that time, but what a different journey. 

Music perception - What can Lily hear?

I had a wonderful discussion with one of our blog readers about how Lily might hear the different notes on the piano.  I'm appreciative of her expert explanation and feedback.  
 
Lily, depending on where you play the notes on the keyboard, may be able to tell the difference of 1-4 semitones. In some areas, she’ll be able to tell you that C-C# sound different (when not looking) but may not always be able to tell you which direction they are going. In other areas of the keyboard, she may have to have C-E or larger to tell a difference. In addition, most implants are programmed for speech at around 250Hz, which is the F# below middle C. This usually knocks out the rest of the notes below there, but not always. Her larger challenge would be telling major from minor chords (and honestly, as a trained musician, it can be challenging).
 
Regarding music you have ‘The Good, The Bad and the Ugly.’  The good is rhythm, the bad is timbre and the ugly is pitch. Mainly that is  because rhythm is a significant part of speech and helps us so it’s conveyed very well. Timbre, the ability to detect different tone qualities is harder, but can be learned.   It is hard because of its complex spectral quality. Think about how similar a clarinet and saxophone sound, for instance, now add in the complexity of a cochlear implant’s processing strategy.  Finally,pitch is the hardest, simply because you and I have 30,000 hair cells (each of which responds to one frequency) and Lily now has 18 electrodes to represent those same 30,000 hairs cells. That’s not to say she won’t be amazing (she clearly already is), but that she may have a “sweet spot” for certain types of music perception and production (ie., singing on key in a specific range).

Then Lily's fabulous music teacher, who shows so much interest in this topic (thank you), told us the following:

Semitone is another word for a half step, which would be the difference between one note next to another one on the piano, like B-C, E-F, or B flat-B. Lily was able to sing descending Major triads starting on Eb (E flat) and ending on G below middle C (which is pretty low for a kindergartner) So she sang descending triads in the Major keys of Eb, D, Db, C, B, Bb, A, Ab, and G. I'm convinced she can hear the difference between 1 semitone.

Amazing!

Test of Auditory Processing Skills

At our last audiology visit, Lily took the test of Auditory Processing Skills-3 (TAPS-3) Subtest 8 - Auditory Comprehension.  Basically, the audiologist started by reading a short sentence and then asked Lily a question about what he just said.  Each question got longer and more complex.  Lily received a 28/32 which put her in the 99th percentile.  Not bad! :)

Lily is thinking about the future

After volunteering at Lily's school, I saw this on the wall.  It was by a big sign that said, "The Class of 2025.  When I grow up, I...."   I have no doubt that if this is her goal, she'll make it happen.  It was hard to realize this five years ago when she was born.  Now I know there are no limits.   

Lily's Report Card

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

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

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

New T-Comm for Neptune Available

Advanced Bionics is pleased to announce that the T-Comm™ accessory is now available in the United States and Canada. A convenient new accessory for the Neptune™ sound processor, the T-Comm delivers the natural microphone placement of the T-Mic™, a built-in T-coil, as well as easy connectivity to MP3 players and other popular consumer electronics devices.

Contact Customer Service for orders and to learn about the special introductory offer.

Call  877.829.0026

Email  customerservice@AdvancedBionics.com

Nebraska Hearing Aid Banks

Great collaboration in Nebraska with three different hearing aid banks targeting everyone from babies to seniors.  Find out more at http://cehs.unl.edu/barkley/HearU/index.shtml

 

Playground CI explanation and competition

Last night at the school playground, Lily saw a little friend that she thought she knew from Kindergarten. Sure enough, the little girl said, "I saw you jump roping today."  And then they were off playing together.

Soon we heard the little girl say to Lily, "What is that circle on your head?"  Lily looks at her with a face that says what are you talking about?  And then says, "Oh, they are my CIs.  They help me hear."

The other little girl pauses and then says "Oh."   Next thing we know they are off playing again.  Mom and Dad just smile.

Soon the girls are playing some kind of chase on the playground equipment.  The other little girl says "go down the slide."  Lily says, "I can't. There is too much static."  The other little girl says, "There are a lot of things you can't do."  So Lily starts making up tricks that the other little girl can't do and keeps saying "No do it like this."  

As the playing field levels, Lily's confidence in herself and attitude makes the difference.  Her ease of making new friends in an instant answer all those worries we had at the beginning of this hearing journey.

 ------------------------

Tonight we again met this little girl on the playground.  The kids rushed up and huged each other.  Then the little girl immediately says to Lily, "Would you like to play with me on the playground equipment, but not on the slides."  Lily says, "Sure."  And off they went.    

Lily's doll has hearing aids

This weekend, Lily's American Girl doll got hot pink hearing aids, or as we like to call them implants.  Lily was truly thrilled to see this adorable doll that now looks even more like her.  She rushed to school today with pictures in hand.  

Thanks American Girl for helping our kids see themselves, with their hearing devices, in their dolls. 

 

Listen to an FM through a hearing aid

I've been thinking and studying FM systems and Soundfields a lot lately.  

Found this fantastic simulation of what speech sounds like when recorded first through a hearing aid, and then through a personal FM system linked to the hearng aid.

The demonstration takes place in an empty classroom while the presenter walks toward and away from the "listener" and while competing voices are played in background. 

If you aren't a believer in Assistive Listening Devices like FMs or Soundfields, you soon will be!!!

 

 

 

Top 6 things to bring to Kindergarten for kids with CIs

1)  Backpack full of backup batteries.

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

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

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

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

6) Cookies for the teachers.

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

Feeling lucky!

Ask Doctor K

This article by Dr. Anthony Komaroff of Harvard Medical School was in our local paper today.  He was answering a question from someone with severe hearing loss that was inquiring about candidacy for cochlear implants.  Very good basic explanation.  

Digeridoo at the Library

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

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

Good Speech Apps for IPhone/IPad

Here are a few useful speech apps for IPhone/IPad that you can experiment with for developing expressive and receptive language in toddlers.  These tools can help learn skills like imitating sentences and answering questions with a picture context, as well as following directions embedded in a sentence. 

• My PlayHome - Following directions - Lite version is free. 
• My Scene - Age 2+ Story Creation - Free
• Outdoor Fun - $2.99
• Toddler Seek and Find - Lots of versions - Good reviews - Free to $2.99
• Fun with Directions - Following Directions - $.99
• What's in the bag - (literally) Guessing - Can be used with all ages** - $.99

 

 

Let's Hear It For Almigal - Book Review

We picked up a sweet little book at AGBell called "Let's Hear it for Almigal" by Wendy Kupfer.  

The story is about Almigal or "Ali," a happy, spunky little girl with a BIG personality who feels unlucky because she can’t hear everything she wants to hear. Written in a similar style to Fancy Nancy and illustrated just as beautifully, Almigal loves to celebrate her friends differences including her own hearing aids.  One day, Almigal can't hear as well and must get Cochlear Implants.  

When I read this book to Lily, the moment I said Cochlear Implants, her eyes got big and her mouth fell open.  I didnt realize just how impactful this type of story could be for her.  Seeing a lively little girl who talks non-stop, loves pink and wears cochlear implants was definitely someone she could relate to.

The story continues with Almigal jumping in a pool and getting in trouble because her CIs aren't waterproof.  Lily instantly started asking why she didn't wear Neptunes.  (My how times change so quickly.)  And then Almigal's dog ran off with her CIs.  While this is something Lily's dog would have done if given the opportunity, there is no way Lily would allow this to happen.  She doesn't take her CIs off.  

The story ends with Almigal's parents putting her to bed and now she can hear them saying that they love her.  Tears!  Great book. Thanks for writing it Wendy.

AGBell Conference 2012 - Lily's reflection - Video

In the video below, Lily reflects on her trip to Arizona to attend the AGBell conference. Love that Advanced Bionics's mascots Melody and Buddy, as well as Chris Barton the music therapist and author of TuneUps rank right up there at the top of her experiences.  I think she meant to thank AB, instead of AGBell, for her CIs.

Lily also talks about how great it was to swim, but the real thrill was for us to be able to talk with her in the pool because of her waterproof Neptune CIs.   The language, the safety, the fun games...what a difference!

 

Improving literacy for children with cochlear implants

Two new studies have been referenced by the Hearing Review concerning children and Cochlear Implants.  This is particularly interesting for Lily who is entering Kindergarten this fall with minimal services. This research recommends that we remain vigilant with intensive language supports, at least through the early elementary years.  

Both papers are based on a decade-long study that has followed over 100 children with hearing loss and normal hearing, some from birth, with a goal of establishing predictors of future language abilities and the long-term extent of support needed for their success. The studies offer a look at what measures are the most accurate predictors, and the types of interventions that may improve literacy.

In "Measuring what matters: Effectively predicting language and literacy in children with cochlear implants," published in International Journal of Pediatric Otorhinolaryngology, her goal was to evaluate how well various language measures typically used with very young children after they receive cochlear implants predict language and literacy skills as they enter school. The study included 50 children, some with normal hearing and some with cochlear implants. She concluded that before 24 months of age, the best predictor of later language success is language comprehension. In general, measures that index a child's cognitive processing of language are the most sensitive predictors of school-age language abilities.

The second article published in Ear and Hearing, "Emergent Literacy in Kindergartners with Cochlear Implants," examined the early or emergent literacy of young cochlear implant recipients. The study looked at 27 deaf children with CIs, who had just completed kindergarten and had been tested on emergent literacy, and on cognitive and linguistic skills that support emergent literacy.

They found that intensive language support needs to continue through at least the early elementary grades for these patients. Also, a period of bimodal stimulation during the preschool years can help boost emergent literacy skills to some extent.

 

AgBell Conference 2012 - "Bee" a Champ: Spelling for Improved Literacy

"Bee" a Champ:  Spelling for Improved Literacy
Cynthia Robinson, M.Ed, CED, LSLS Cert. AVED, Co-director of Clarke School, Jacksonville, FL

Braid of literacy
- oral language and reading
- drawing writing
- sound symbols
- favorite words
- compare and contrast words
- make slight changes in words and sounds
- mature as readers and writers they expand their vocabulary through reading

When child is reading auditory cortex lights up - oral activity

Words Their Way - Bear and Invernizzi - important book

Spelling patterns and knowledge are developmental

5 developmental stages

1. Preliterate - no relationship to spoken language - lines shapes pretend to read.  Hold a writing implement and write on paper.  Confuse that drawing is the same as writing.  

Progress includes horizontal writing letters and numbers. Use some letter sound matches.  Draw lines for the words.  

2. Letter name stage - establish directionality, make letter sound substitution based on articulation. Miss vowels and digraphs.  Concept of word.  Read pattern books.  Age 5-9

Progress is when initial final and beginning consonants.  Spell short vowel words.  Get blends and digraphs.  Using memory.  Read pattern books and charts and long vowels.  Word wall

3.  Within word - Single syllables.  Primary and secondary vowels.  Common suffixes .  Confuse low frequency long vowels, common. Inflections, unstressed syllable vowels.    Silent reading.  Reading with expression.  Double vowels.  Age 6-12

Progress includes chunks of patterns of sound and meaning.  Experimentation of vowels.  

4.  Syllable juncture - age 10 - to adult
Short and longer vowel are stable.  Spell suffixes.  Confuse vowel and consonant alternations in related pairs.  Reading fluent.  May omit syllables.  

Progress includes spelling and syntax with plurals, learn tion and sion, notice how change in action and stress.

5. Derivational constancy - understand  why structures exist, study meaning of prefix and suffix, spelling and meaning movement. Reading vocab and roots. 


Assessments
- 
Inventory
Bed, train, ship, drive, bump, when, closet, chase, float, went, closet, beaches, preparing, cattle, inspection, popping, caught, confident, flexible, fortunate, appreciation, pleasure, preparing, squirrel 


Kindergarten 
concepts, vocab, letters, sorting, 
By October - spelling assessment - fan, pet, rug, sit, mop
Font sort - sorting letters in different fonts
Rhyming, concept of word

Word study for letter name
Frequency of consonants b,m,r,s,t,g,n,p,c,h,f,d,l,k,I,w,y,z,v,q(u)
Initial sound pictures/word sort
Blend sort

Word study for within word
Long vowel study
Relate meaning to structure
Past tense sort for Ed 

AgBell Conference 2012 - Demystification: Inspiring Children with Hearing Loss Through Self-Knowledge

Demystification: Inspiring Children with Hearing Loss Through Self-Knowledge

Susan Randich, Ph.D., Nancy Smiley, M.S. CCC SLP, LSLS Cert AVEd, Victoria Carlson-Casaregola, M.A. CCC-SLP, St Joseph Institute for the Deaf, St. Louis, MO

Need to empower children through self awareness
Will find a higher degree of success in life
More important than socioeconomic status or parents

How do you demystification?

Mind Map
Visual of competences, challenges, affinities,

On the map include:
Things I like
I am good at these thing
Things I don't like
Things that help me
Things that are hard for me/things that we need to work on

Pictures for younger kids
Word choice

Step 1 - Form an alliance - no one is perfect
Step 2 - Identify interests and affinities
 Can include sensory issues, strengths and weaknesses
Step 3 - identify strengths, assets, talents,  - avoid something all kids can do
Step 4 - identify weaknesses - 2-3, not reading but sounding out words, make it clear that smart kids have similar issues
Step 5 - How will problems be addressed - therapies, strategies and accommodations 

Dealing with resistance and denials - use humor
Write songs about self

AgBell Conference 2012 - Auditory Skill Development: Basics and Beyond

Auditory Skill Development
Betsy Moog Brooks, M.S., CED, LSLS Cert AVEd, Amy Birath, Au.D., CCC-SPL, FAAA, LSLS Cert. AVEd, The Moog Center for Deaf Education, St. Louis , MO

Increased performance expectation because of early hearing aid fitting (They are getting calls from the hospital)

Speech perception test
- early speech perception test
- 18 months should have 25 words, 1 year post implant should have 100, age 3 - using utterances of 3 and 4 words

*****Auditory memory - ability to repeat back items after presentation - attending, listening, processing, storing and recalling.  May produce benefits for kids with Cis

*****Auditory skill development - clef and wisc tests

Activities - 
- digit span - make one presentation, recall numbers in a row
- word span for unrelated items
- words with different number of syllables

Listening in  Noise - value in practicing.  Auditory training in noise improved performance with CIs.   (Og 2011)
- first in quiet
- multi talker babble
     Auditec.com
      Babel babble (app)
- introduce noise at +10 SNR 
- noise should come from behind the child
- studio 6 audio tool - sound level meters 

Activities
- imitating sentences with a picture context
- following directions imbedded in a sentence 1-4 critical elements
- sentences without context 6-8 word sentence in noise
- riddles in sentences in 3-5 words and each riddle has 3-5 sentences 

I have wings
I cannot fly
I can swim

I am at school
I open and close
People read me

Riddles with 6 or more words

I am made of wood but I might be different colors
I have four legs and sometimes I have two arms
People like to sit on me

Stories with illustrations

AgBell Conference 2012 - What does acoustic accessibility look like?

What does acoustic accessibility look like?

Carol Flexer, PH.D., LSLS Cert AVT, The University of Akron, Kent, Ohio and Jane Madell, PH.D., LSLS Cert. AVT, Private Practice, New York, N.Y.

- Audiologist has the critical role because of brain access
- Everyone in a child's life needs to be involved in communication
- Hearing is access to auditory brain
- Sound must be clear
- Kids need more brain development with more repetition 
- SNR is critical - FM is key
- Repetition in classrooms of what other kids say by teacher
- Any unoccupied class should be no more than 35dbs
- Need single events in classrooms for kids to hear
- What is the important sound going on in the classroom.  Don't have two groups at the same time.
- Dominant tissue in brain is auditory designated tissue.  Must be stimulated
- Earlier is better = brain had plasticity
- Earlier= more practice
- Brain is a probability organizer
- Typical babies are born with 20 weeks auditory development
- 20,000 hours of listening as a basis of reading
- Children with hearing loss need three times the exposure to learn new words and exposure
- Eyes open, technology on
- A child with four hours of aids will need six years to equal one year of an ordinary hearing
- Must have all three -Perfect technology, good program, and parents
- The real ear is the brain
- Must use a pediatric audiologists - All audiologists are not the same
- Children with profound loss at age 5 - 44% are progressive
- 40% of hearing aids were under fit (mp)
- Plan for a progressive loss
- Use FM at home
- Auditory access is not just at home
- Always suspect technology first if something is wrong
- Use Ling6 and 44 phonemes ****** (We heard test with phonemes multiple times)
- Noise noise noise - infants should have FMs
- Turn the music off unless it's adult directed
- Always walk out with a copy of the audiology report
- Behavior tests are more important than objective testing
- Do speech perception testing after mapping
- How does kid hear at 50db, 35db and noise at 5db - thresholds and discrimination each ear and binaural
- If you are not sure if your child is hearing they are not
- CIs should be mapped between 15 to 20 db
- Record specific phoneme errors
- Distance hearing
- Voice quality is an indicator
- Do lings naturally 
- Speech perception qualifiers 
   Excellent 90-100
   Good 80-89
   Fair 70-79
   Poor <70%
- Mild hearing loss places child at 10 times risk

iHear - Online Therapy in Nebraska

iHear, an on-line therapy program for children with hearing loss, is ready to assist families in Nebraska who have children with a hearing loss.

Thanks to the Omaha Hearing School Foundation, St. Joseph Institute for the Deaf has received a grant to provide speech and language therapy services via the Internet to children in Nebraska and western Iowa.  

This is an incredible opportunity for families to receive high quality therapy from SLPs or Hearing Resource teachers that are certified AVTs or AVEds and also LSLS certified who work with kids with hearing loss everyday.  

On-line therapy is a great addition or supplement to a child's current therapy or as an alternative for families who cannot access highly-trained therapists in their area.  

For more information, see http://ihearlearning.org/

Why employers should care about hearing loss

Good commentary about the cost of addressing hearing loss in the workplace.   

Experiences hearing on the Prairie

Lily and her preschool class took a "field" trip to the Spring Creek Prairie.  It was a beautiful day to listen to the frogs and birds, the wind and even the trains.  

The prairie guide provided a lot of instruction and guidance to the children during the tour, so we used the FM.  We were surprised when the guide told us that she frequently uses an FM with kids out there.  It was incredible to observe how much teaching involved whispering.  Thank goodness for the FM.

The two pictures below are of a "Velcro" plant that sticks to the kids' shirts and a snail.  Of course how can you hold and examine a snail without talking about its similarities to a cochlea.  

We have had a lot of discussions lately, driven by Lily, about her CIs and cochlea.  Various questions like why she has a CI and we don't, when can she stop wearing it, why she says "what" all the time, if her ears still work a "little," what advantages she has that kids with ordinary hearing don't have, etc. Even questions comparing herself and her buddies.  

I found myself explaining genetics to a four year old when another parent's explanation of "that is just how God made us" didn't satisfy Lily anymore.  Sometimes these discussions break my heart and sometime I think it makes her stronger and more confident.  

When she moves to a new environment with new kids, they always have lots of questions.  One little girl came up to me last week and said Lily had "plugs" in her hair.  Lily just says, "They help me hear" and moves on.  It's impressive to watch her make friends and build relationships in an instant.  At any park she'll find a kid and say "Do you want to be my friend" or "Do you want to play with me?"  She never fails to leave somewhere without a new "friend."  

What was I so worried about?

Advanced Bionics ClearVoice Report - The Car

This week we tested ClearVoice in the car, on a busy street, to understand how it works best.  

With the window open, the wind was blowing in Lily's face, and she could still hear me talking, actually quite well. This was quite novel for Lily because normally we would always drive with the windows up.

Thank goodness for ClearVoice and for beautiful spring days in Nebraska.  

Swimming Lessons with Advanced Bionics Neptunes - A whole new experience

Here's another short video of Lily's swimming lessons.  I thought the video illustrated a couple of cool things.  First she jumps in the pool and her CIs stay on.  Then her CIs are underwater while her teacher is giving her directions and she can still hear.  And finally just that Lily can now "save herself" is fabulous.  

Every day I give thanks to the incredible scientists and engineers that invent this stuff, those who fund it and everyone else in between. Keep it up!!   Life changing!

 

 

AB Neptunes and running through the sprinkler

For the first time in her life, LIly ran through the sprinklers on a hot Nebraska Spring day.  At first she thought the water was freezing, but once she got the hang of it, she was unstoppable.  

Lily loved the experience thanks to her new Neptune waterproof CIs.  I loved the experience because I could still communicate with her, even in her wild and crazy state of mind.

Airplane Pilot or Flight Attendant - Decisions

Lily talked her way into her first cockpit.  Now she needs to visit every cockpit on every plane.  The pilots and flight attendants are all so kind and gracious to her.  Makes Lily's decision of being a "Pilot or a Flight Attendant when she grows" up even harder.  

ClearVoice and T-Comm - Advanced Bionics Cochlear Implant Innovations

ClearVoice

Last week Lily received ClearVoice, Advanced Bionics' new sound processing innovation that enhances speech understanding. ClearVoice is also the industry's only sound processing technology that has been clinically proven to deliver superior hearing performance in noise.  

Within seconds of having ClearVoice activated, LIly tested 77% in noise and 100% without noise.  This test was done with sentences that were pretty complicated.  As the test progressed, it seemed her hearing improved.  Lily had a test in noise a year ago and averaged somewhere between 50-70% accurate.  We return in six weeks to do a comparison test.  During this visit we also had her maps slightly adjusted for some of the higher pitches. We like her to hear around 20db or less on all pitches.  

Lily's comments about ClearVoice thus far have been that the car seems quieter and the conversations are easier to hear.  She's also been picking up the words to songs more easily.  We've been using ClearVoice on the Medium setting and are now waiting for a noisy activity to try the high setting.  So very very cool and it was free (except for the cost of our visit of course).  I've had a number of people with "ordinary hearing" ask if they can use ClearVoice. 

T-Comm

The FDA on April 2, 2012 approved the "T-Comm"  T-Mic /Telecoil for Advanced Bionics Neptune CI processor.   See Advanced Bionics website under T-Comm Accessory - Coming to the U.S and Canada in Summer 2012 for more information.  There is even a picture.  Benefits include: 

• Lightweight accessory—compatible with the Neptune™ sound processor 
• Delivers the natural microphone placement of the patented T-Mic™ 
• Offers easy connectivity with the T-Mic that lets you wirelessly use earbuds, headphones, cell phones, and other popular audio devices 
• Features a built-in T-coil, which picks up sound if you have a compatible telephone, neckloop, or other accessory
• Availability in the United States and Canada is planned for summer 2012 at a special introductory offer

 

Observation Report of Lily at Preschool

The following is an interesting observation report of Lily at preschool made by her Hearing Resource teacher.

"I arrived just as they were cleaning up.  Lily helped without any reminders.  Then they met as a group. One of the students has a birthday coming up, so they discussed that.  The kids were shouting out--I'm 3, I'm 4 etc.  Lily is saying I'm 6, I'm 6.  I'm trying to figure out what's going on when she looks at the student beside her and says, "April Fools."  Then they went outside to listen to a book, Twas the night before Easter.   Lily participated when her teacher paused-nonverbally asking for a group response.    Next was the egg hunt.  The teacher had told them that some eggs are easy to see and some are challenging, so decide if you want to find the easy ones or the hard ones.  Well, I guess Lily wanted the hard ones, because she passed a lot of very visible ones and kept looking in some very challenging places.  After a little bit, the kids who had found their one egg were taking them into their backpack.  I guess this motivated Lily to find anything she could, because she immediately picked one up.  She followed all instructions/directions, interacted with peers, and participated actively."

FM classroom simulation for kids with hearing loss - Video

Excellent "how to" and "why" video on using an FM in the classroom.  Teachers take note!

 

Lily starts micro soccer

This weekend Lily started pre-K micro soccer.  It is structured so the girls have a 25 minute practice, then a 25 minute game.  Soccer is pretty new to Lily so the explanation of corner kicks seemed to go over her head. However when she got home, she explained to us why and how to do a corner kick.  Amazing.

There were also some little girls who likely had older brothers because they were very aggressive and masters of ball handling already.  Lily enjoyed the experience which was the most important part.  The only challenge came when hearing the soft-spoken coaches who had no idea what Lily's cochlear implants were until after the game.  

Next time, we plan to bring the FM to help Lily hear the voice of the coach a little better.  You can see in the picture that Lily is likely missing what the male coach in the middle was talking about.  I think the female coach was doing a little "translating" for the blue team.  

And now with Lily's Neptunes, if it happens to rain during a game....NO problem!

Lily wears her Advanced Bionics Neptunes in the pool for the first time

We've started swimming lessons again now that Lily has her new Neptunes.  What a difference.  The swimming teacher is able to talk with her in the pool and even when she is underwater.  

The headpieces stay on fairly well, however for next week we've added a second magnet in each headpiece to make them a little more secure.  Lily wore the processors on her sleeves with the clip and we ran the cord through her shirt and up her back. The goggles went over the cords.  

There are so many pieces and parts.  I'm sure we'll get the hang of it soon.   

In the video below, Lily is playing on the step while she waits for her lesson.  

 

Advanced Bionics Launches ClearVoice in the US

More great news.  Advanced Bionics' ClearVoice has been approved by the FDA!!!!  

Built on AB’s proprietary HiRes Fidelity 120™* technology for high-performance hearing, ClearVoice has been designed to automatically analyze and adapt to each listening situation encountered throughout the day, separating the distracting noises from speech so that communication can be a truly effortless experience. The technology was developed to help recipients communicate clearly and confidently in a variety of challenging listening situations, including restaurants, cars and classrooms—without ever needing to change a program or make an adjustment to their sound processor. MORE

Lily should receive ClearVoice in early to mid-April.  Then bring on the challenging listening environments. 

Advanced Bionics Neptune Cochlear Implants - A Dream Come True!

It's official!  Lily is the newest kid to wear Advanced Bionics Neptune Cochlear Implants.   They truly are a dream come true.  The implants are very light, sleek, small, and most importantly waterproof.  They will also support the new ClearVoice software which is weeks away from being approved in the US by the FDA (we hope!).

The following five videos show Lily trying out her Neptunes in the bathtub for the first time.  While she is apprehensive to actually get in the tub with her CIs on, she quickly adapts and then plays and talks non-stop.  

There are so many wearing options with the Neptune, we didn't know what to try first.  While Lily is always a bilateral CI wearer, in the video we tried one Neptune attached to the armband.  If she went swimming, we might sew little pockets on the inside of her suit.  Lots of wearing gadgets are included in the Neptune kit to experiment with like a headband, swimcap, armband, lanyard, and clip.

Make sure to watch all the videos and you will see the evolution of Lily's first water exploration.  Expecially facinating is Lily playing with her own voice.  She asks, "Why does my voice sound different?"  She also discovers the sounds of the bath like the faucet and blowing bubbles in the water.   Swimming lessons start tomorrow.  

We're filled with joy.   One more sound barrier busted!  Tears!

 

  

  

 

 

 

Nebraska Online Speech Therapy for kids with hearing loss

UPDATE for online speech therapy opportunity for Nebraska kids with hearing loss

If you are interested in high quality listening and spoken language online speech therapy, go to www.ihearlearning.org....or call direct to Cheryl Broekelmann at ihear 636.532.2672.  

The cost per session is $35/half hour for families.  There is some money for scholarships and St. Joseph staff are currently working to see if insurance plans will cover the cost.

Internet Therapy Offered to Nebraska Children with Hearing Loss

Just when things are wonderful in the Cochlear Implant world, they get even better for kids in Nebraska.

We received a note today letting us know about new Internet Therapy for Nebraska families who have children with hearing loss from the St. Joseph Institute for the Deaf.   (see our iHear Nov 2011 blog post)

Our beloved Omaha Hearing School, although now formally closed, has reformed as a foundation and has funded this opportunity to provide speech and language therapy services over the internet to children in Nebraska and Western Iowa.   Services will be provided though St. Joeseph's innovative and groundbreaking internet therapy program called iHear.  

“By 
working 
with 
St 
Joseph
 Institute 
for 
the 
Deaf, 
the 
mission 
of 
the 
Omaha 
Hearing 
School
 Foundation 
to
teach
 young 
children 
with 
hearing 
loss 
how 
to 
listen 
and 
speak 
remains 
vibrant,” 
says
 Britt 
Thedinger,
 MD,
 an
 otologist 
and
neurotologist 
and 
a 
board
 member 
of 
the 
Omaha
 Hearing
 School 
Foundation.
 

SJI’s 
ihear 
program
 enables 
children 
with 
a 
range 
of 
hearing 
impairments
—
from
 cochlear 
implant
 recipients
to 
those 
who 
use 
hearing
 aids
—
to 
work 
with
 skilled 
listening 
and 
spoken
 language
 specialists 
via 
the 
secure
internet 
link.
  

Essential 
to 
the 
program’s
 success 
is 
its 
collaborative
 coaching 
model,
 in 
which 
the 
ihear 
staff
 coach
 a
 parent 
or 
educator 
present 
with 
the 
child
 in 
each
 ihear
 session.  
The 
coaches 
are 
then 
able 
to 
reinforce
 the 
exercises 
and 
lessons 
learned 
in 
between
 the 
therapy 
sessions.  
Children
 enrolled
 in
 the 
program
 typically 
are 
scheduled
 for 
two, 
half‐hour
 therapy
 sessions 
per 
week.

Thanks Dr. Britt 
Thedinger for your commitment to Nebraska's kids.  We'll provide more details on this program as we receive them.  

For
 more 
information
 about ihear,
 visit www.ihearlearning.org

 

 

Kids 18m - 36m with Cochlear Implants needed for research study at UW Madison

We've participated in a few Cochlear Implant research studies over the last four years.  Every time has been a fabulous learning experience for us and for Lily.  We've also felt a great deal of satisfaction in helping to advance the study of Cochlear Implants.   

A new research opportunity for kids 18m to 36m with at least one Cochlear Implant is starting at the University of Wisconsin - Madison.  This study looks at how toddlers with cochlear implants hear in noisy environments and localize sounds.  We're in a similar study which we've blogged about before.  

The researchers play games with the kids, take lots of breaks, give prizes (Lily took home 20 bouncy balls and her very first Barbie) and there is enough time to have a bit of fun in Madison.  The researchers go to great lenghts to make it a wonderful experience for the whole family.  

If you have any interest in particpating in this or similar research, I'd encourage you to contact the lab.  Let us know if you have any questions. 

DOWNLOAD UW Cochlear Implant Research Flyer for kids 18m-36m

Deafening Affects Vocal Nerve Cells Within Hours

Interesting article showing that portions of a songbird's brain that control how it sings have been shown to decay within 24 hours of the animal losing its hearing.  Sceintist predict something similar likely to happen in human brains as well.