Life is Bliss - Lily's Cochlear Implant Journey

3 1/2 month old receives Cochlear Implant

A 3 1/2 month old baby has received a Cochlear Implant in Oman, Middle East.   As an advocate of early implantation, this is incredible.   What an opportunity for this child to gain all the listening and learning that comes as an infant.  I've heard of one other child being implanted around 4 months in California. As early becomes "standard,"  I hope it causes U.S. doctors and the FDA to look closely at the 1 year recommended implant date.    

20 iPad Apps for hearing loss

Here is site highlighting 20 iPad Apps for Hearing Loss.  They range from apps that check your hearing and will find captioned movies, to apps that teach you about hearing loss and provide tools for augmented communication.  

Lily's Dad and I proposed giving a session about this very subject and more at the 2012 AG Bell conference. Hope someone speaks to this incredibly valuable and rapidly growing resource this summer. 

Classroom Acoustics - 40%+ say they can't hear

Always interested in understanding the importance of hearing in classrooms.  Here is a new Swedish study that says four out of ten students experience problems with their sound environment during their education.

 

 

Inside of the ear video

An interesting 7-minute video that takes viewers through the inside of the ear, to the acoustic accompaniment of classical music.  A narrator describes how the sound waves travel through each portion of the ear, and how hair cells translate the vibrations they induce into nerve impulses.  

For anyone trying to understand how the ear works, this is the video to watch.

 

Babies learn language by lipreading from 6-12 months

Facinating research about normally hearing babies learning language by lipreading.  This type of research supports the early implantation argument for cochlear implants and emphasizes the value of getting in the child's face and talking even when there is minimal hearing.  The research also makes me wonder if this process is similar when hearing comes later or does it move faster when there is more cognitive development.  

"Florida scientists discovered that starting around age 6 months, babies begin shifting from the intent eye gaze of early infancy to studying mouths when people talk to them....They found a dramatic shift in attention: When the speaker used English, the 4-month-olds gazed mostly into her eyes. The 6-month-olds spent equal amounts of time looking at the eyes and the mouth. The 8- and 10-month-olds studied mostly the mouth. At 12 months, attention started shifting back toward the speaker's eyes."

New Baby Bodie Graeme

We are excited to introduce our son Bodie Graeme.  He's a perfect little sweet pickle (as Lily calls him) and we couldn't be more thrilled.  The details...

What about the Name?

Bodie is a name we love.  It's happy, sounds good with Lily and doesn't come with a lot of stereotypes or rhyming words.  It's also not in the Top 10 most popular names.   Of course when we picked LIly, the name was not very popular and now it's likely in the Top 20.  We were going to call him Bodin, with Bodie for short, but why not just go with the nickname.  Bodin can be used for the serious situations.

Graeme (sounds like Graham) is a nod to Graeme Clark, one of the first inventors of the multi-channel cochlear implant, and Alexander Graham Bell.  Two people who changed the course of history for our family.  

In my reading about Professor Graeme Clark of Australia, they said he was called Crazy Clark, because his goal since the 60s was to help deaf people hear.  His colleagues doubted him and thought the goal was unreachable.  This story is a good daily reminder to me to believe and reach for the impossible. Never be detered if that is your goal and always say YES, even though it's much easier to say NO.  

I hope this name will give that determination to Bodie.  I know Lily's already got it.  Yesterday she was determined to go outside in 50 MPH winds and snow and fly her kite.  I said NO, it won't work.  She did it anyway, and wouldn't you know...the kite flew...twice.

Birth Story

The Birth Story is quite uneventful, in a positive way, compared to Lily's birth.  With a scheduled C-Section it was peaceful, planned, no drama, no NICU, and no tears.  Well, maybe a few tears of joy.  Everything was calm and quick.   Loved it.  

When Lily first met her new brother, she came in, climbed up on a chair to see him in the bassinet and introduced herself.  "Hi Bodie, I'm your big sister Lily."  So sweet.

Having another child

For years we never thought of having another child, because we didn't want to take our focus off helping LIly succeed.  At some point, as Lily's abilities have skyrocketed, we felt that adding another child to our family would only enrich our experience and Lily's life.  Hearing or not, we were prepared to take the hearing journey again, if need be, and we would meet every need of this child as we have for Lily.  

Nebraska's Newborn Hearing Screen

In Nebraska, the Newborn Hearing Screen is a state mandate (with no enforcement).  Today, approximately 99% of all babies born in Nebraska are given the hearing screen, with about 50 babies annually having some sort of hearing loss.  

About 50% of the hospitals, including ours, are using ABRs for their initial screens.  ABRs have a much lower refer rate (4%-5%) than a tradition OAE (8%-9%).  A refer rate means "failing" the test.  Failing could be for other reasons, besides hearing loss, like fluid in the ears.  A reduced referal rate means a lot fewer parents have to go through the emotional journey of understanding if their baby can hear, reduced cost and reduced use of limited resources.  Bodie passed.  

Is there a difference?

With a newborn baby, it's extremely difficult to tell if the baby is hearing.  Especially for first time parents, if you are not watching for a reaction to sound, you just might miss it.   We see Bodie and LIly with very similar baby behavior, but you can see that Bodie quiets to the Shhhhh sound and reacts to many noises.  

I have noticed that we've gotten used to making lots of noise while Lily sleeps.  Unfortunately or fortunately, gone are the days when we could turn up the TV or music, bang around, cough or vacuum. Restful sleep is a definite advantage for LIly, espcially when Bodie is wide awake in the middle of the night.  

Language

I am very interested to watch Bodie's language develop.  We've been trained by some of the best language pros in the country, and talking everyday all day and creating good listening environments is what we do.

A few Lily quotes

"It's great to be a big sister. "  And this morning, "It's hard to be a big sister.  I don't get any attention."  

The Auditory Brain - Carol Flexer - Speech transcript - So Good!

We are huge fans of Carol Flexer an Audiologist, professor, book author and presenter on The Auditory Brain: Conversations for Pediatric Audiologists.  This link is to a transcript of a presentation and Q&A Dr Flexer made on AudiologyOnline last spring.  So, so, so good!  Mandatory reading.  

What difference can an FM make?

I'm always interested in how things sound for LIly.  

This page contains recordings of speech through a Comtek FM system in quiet and in noise, through the FM (on the lapel of the speaker) and/or environmental (on the body of the listener) microphones, at a distance of three and twelve feet from the listener. Multi-talker babble speech noise was presented from behind the listener at a level of about 60 dBA.

It is not clear if these recordings are through an additional listening device like a hearing aid or cochlear implant, but the differences are still facinating.  

Apps for Kids and Adults with Hearing Loss

Great blog by Tina Childress on Apps for Kids and Adults with Hearing Loss.  These apps can be extremely helpful when teaching kids to talk and listen in ways they love to learn.  

Tina is a bilateral CI user and used to be with Advanced Bionics.  She gave a presentation at Boystown four years ago, which Lily's Dad loved.  She was one of the reasons we chose Advanced Bionics.

TEDMed Talk by CI Surgeon - CIs and Music

Very interesting TEDMed talk (16 mins) by cochlear implant (CI) surgeon and musician Charles Limb, associate professor, Otolaryngology, Head & Neck Surgery, at Johns Hopkins.  He explains the challenges of CI patients hearing music and the brain research that is being done to help restore the full range of human hearing abilities.  The talk even shows a video of a cat with a CI responding to a trumpet. 

Lily loves music and has recently figured out the phrase "That song is stuck in my head."  Her newest trick is dancing around the house singing "I got the mooooooooooooves like Jager" over and over again.  More focus and attention on music therapy would be an incredible addition to the speech therapy that now helps kids with CIs learn langauge. 

 

AB's Neptunes in the Water

Here's a video of a kid swimming with AB's Neptune.  Notice how she doesn't talk much without her CIs, but talks up a storm with her CIs. 

Quantity of Communication Matters

We've understood that quantity of communication REALLY matters since the beginning of Lily's hearing journey.  Now one of our favorite researchers, Mary Pat Moeller, has recently given a presentation on just that topic.

According to ASHA member Sophie Ambrose and her co-presenters Mark VanDam and Mary Pat Moeller, all from Boystown in Omaha, the research shows that quantity of communication matters for hard of hearing children. Children whose parents engaged them in more conversations were likely to have stronger language skills than toddlers whose parents engaged them in fewer conversations.

Previous research has indicated that to promote parent–child conversations and to otherwise facilitate the language development of toddlers with hearing loss, parents should use speech that is child-friendly, such as short, simple sentences, and talk about things of interest to the child.

Visit to Santa

Lily visited Santa this year on the first day he arrived.  A little shy at first, Lily informed Santa she would like a pogo stick and a pink sled.  She later remembered she forgot to tell him a bike (already purchased), so she followed up the visit with a letter that she wrote (Dear Santa   I want a bike    Love Lily.) She said the period was so Santa knew the letter was over.   

When Santa asked if she's been good, Lily informed him that she had been a very good helper that morning putting up all the Christmas decorations.  

Communication was easy.  Mom and Dad just stood back and watched the magic happen.  So much to be thankful for this year. 

Preschool art experience

Lily's preschool class has been working with an artist on screen printing.  Here Lily is with the artist describing her masterpiece (flower and bird). 

All kinds of new vocabulary was included like squeegee, silk screen, color theory (red and yellow make orange), etc. 

Lily's teacher gave the artist the FM, which made listening easier for LIly when the artist discussed each child's artwork/t-shirt design. 

Exposure to different experineces and language is so important.  This was a unique one. 

ihear - Long Distance Oral Ed

Distance learning is getting better and better, especially for kids with hearing loss, in remote or rural places, with a lack of accessible services.  Check out IHear by St Joseph Institute for the Deaf. 

Pre-Halloween Fun

Halloween has become a wonderful week-long celebration this year with many parties and events to attend.  Lily's costumes have included both a puppy and a turtle.  Mom's preference is the turtle because there is nothing over her CIs.

We also attended a family art night where we were given a clay pumkin and then were encouraged to transform it into anything.  Thus the creation of the Halloween Fish, Black Cat and Witch.  Any guesses as to who did which one?

CI Video Story: Implanted at 20 months and now a teen

A beautiful documentary on the life of Skye Carter.  She was first implanted as a child (20 months) and now is in her teen years. 

Study: Significant language progress after two cochlear implants

Recent article about research at the University of Wisconsin shows significant language progress after two cochlear implants.  

During our recent trip to participate in the WI research, we got to meet Christi who is quoted in the article. (see picture below)  Very fun to meet the next generation of practitioners who are passionate about serving kids with CIs.   In this photo, Lily and Christi were teasing each other about who would win the Nebraska-Wisconsin Football game.

An ongoing study of 45 deaf children who had two cochlear implants finds that their language skills are within the normal range..."It's a huge success to see these children making such strides in language acquisition," says Christi Hess, a Ph.D. student in communicative disorders...Many, after as little as one or two years with the implant, have language scores within the normal range, especially those who got the implant before age two....It's known that implants made at a younger age deliver results more quickly, and that a second implant helps children both locate the source of a sound and understand speech in a noisy room. But until now, it was not clear if the second implant would improve understanding of spoken language.  "The most exciting finding is that having two implants does correlate with an improvement in receptive language," says Hess.

Hearing loops go mainstream

Hearing accomodations are becoming mainstream, not only because of ADA but also for good customer service.  Check out this recent article in the NYT about hearing loops.  

Videos: Lily's language development 9-48 months

Lily was a participant in a longitudinal study in the Language Development Lab at Boystown National Research Hospital, directed by Mary Pat Moeller, Ph.D. The visits occurred between 9 months and 48 months old. Lily received bilateral Advanced Bionics cochlear implants at 10 months old.

9 months old

 

12 months old

 

15 months old

 

18 months old

 

21 months old - (21 month report)  (22.5 month report)

 

24 months old - (24 month report)  (25.5 month report)

 

30 months old - (30 month report)  (32 month report)  (34 month report)

 

36 months old - Receptive language test  (36-38 month report)

 

42 months old - Language test

 

42 months old - Sounds

 

48 months old - Final Language Test

 

 

Music changes our brains

Excellent article on how music changes our brains.   We've long been a believer in incorporating "music therapy" in all forms in Lily's auditory rehab, as there is growing evidence in its impact for listening and language.    

I'm often reminded of the person who told me "there was no proof, I was wrong in believing this, and that they wouldn't even consider this as a part of LIly's therapy."   Glad we didn't listen to this advice.  

Mild hearing loss = Brain Atrophy in Older Adults = Early Intervention

Interesting article in Science Daily

A new study by researchers from the Perelman School of Medicine at the University of Pennsylvania shows that declines in hearing ability may accelerate gray mater atrophy in auditory areas of the brain and increase the listening effort necessary for older adults to successfully comprehend speech.

Apps - An Emerging Tool for SLPs

Excellent article on Useful Apps for SLPs and parents.  Now Lily will want her own IPad or IPhone.  

Gifts for Kids with CIs

We were asked recently about what to give a family as a gift after their child is newly implanted. Here's a quick list of ideas:

• Hanna Andersson Hats
• Tune Up CD from Advanced Bionics
• Make a Listening Bag
• LIng Sounds Iphone app
• Toupee tape (depending on their processor)
• Any sort of music toys
• Ag Bell Membership
• Carole Flexer/Elizabeth Cole Book listed on blog under recommended readings

You are stuck with me!

As our family left an event, in two cars, Lily realized she wanted to be with Dad. 

After lots of tears, I said, "Well you are stuck with me."  Lily said, "No, I want to be stuck with Dad."  I responded, "That hurt my feelings."  This is a phrase Lily often uses.  She replied, "Well, I want to be stuck with Dad and you."  She is very egalitarian.  Pause....Lily continues, "What does stuck with you mean?" 

So much to language to learn and experience.

UW Madison's Binaural Hearing and Speech Lab - Research with CI kids

We spent the last few days at the University of Wisconsin's Binaural Hearing and Speech Lab.  This was our second visit and it's always eye-opening to understand how Lily is hearing. 

Over 2.5 days, Lily participated in a variety of hearing games including:  identifying words and sounds in noise and quiet from various directions, language comprehension, speech perception and production, and non-verbal IQ.  These games were broken up with lots of breaks, stickers, contests and prizes which were real drivers for Lily. 

The researchers that performed the tests were wonderful as well.  They were all  women working as professors at the University or on their undergrad, graduate and post doc degrees in speech or audiology.  And all were focused on careers with CI kids.  Wonderful to see the future of this emerging industry.  Thanks to Shelly, Christie, Kristie, Shelby, Yi, Sara and Sara for all your great work.   

Our observations of the research are that nosie significantly impacts kids' hearing, localization is hard for CI kids and Lily is doing fabulous with her speech, language and listening.  Lily's actual results will come in a month or so.

Here are some pictures of our experience. We also made stops at the Madison Children's Museum, the free Madison Zoo and State Street (downtown hotspots). 

For every family that can make a trip to participate in this research, we highly recommend it.  Check out the UW website for more information. 

Hearing Care in Developing Countries

Great article explains promise and challenges of bringing hearing care to developing countries.

Curtains that squelch noise

Interesting article about the use of modern sound absorbing cutains that squelch noise.  Think of all the possible uses.

An intro to FM - Terrific Phonak Seminar/Video

Here is a terrific seminar/video on FM technology from Phonak.  Well worth the time to watch.  It covers everything from SNR to how scores for "hearing in noise" improves as people get older. It also describes those who would benefit from an FM including children and adults with hearing loss (even unilateral hearing loss), people with MS, children with autism, non native learners, those with auditory processing disorders, etc.

 

Music may help ward of hearing loss

New research indicates music may help ward off hearing loss as we age.  

"Musicians were 40 percent better than non-musicians at tuning out background noise and hearing the sentences...The musicians were also better able to remember the sentences than the non-musicians — and that made it easier for them to follow a line of conversation." 

What is up with Noises? Excellent Video

Interesting video on The Science and Mathematics of Sound, Frequency and Pitch.

 

5 Ways to Listen Better

Great Ted Talk by Julian Treasure about Listening.  One of Lily's teachers wanted to start a listening magnet school.  She is ahead of her time.  

Talk/Listen - Our Mantra

At a recent Big Omaha event, this photo was our "Message to the future."  Listening and spoken language is always on our mind.  Such a clever idea for engaging attendees.   See facebook.com/writeourfuture. 

Sound IQ test

Love this Sound IQ test from Starkey Hearing Foundation.  What do you score?

Therapy idea: Using old cell phones

Great article on using old cell phones to help kids practice talking and listening.  

From articulation to turn taking, from tone to giving details, here's a new life for an old broken cell phone.  

Audiology Visit

Every six months we make a visit to the Boystown Cochlear Implant Center for a mapping session with Lily's cochlear implants.  Everything tested well this time with just a few tweaks to her left CI in the higher frequencies. 

Hearing levels -

Thresholds with Right CI - 10dbs to 20dbs

Thresholds with Left CI - 15dbs to 25dbs

Lily also had two hearing tests.  HINT-C Sentences (live voice in the auditoryy-only condition) in quiet R CI 47/53 (89%), L CI 50/54 (93%), Bilat CI 48/53 (91%) and PBK-50 Words (which was a man's recorded voice at 60db SPL) Bilat CI 21/25 (84%) words, 63/70 (90%) phonemes

Audiogram:  Speech recognition threshold at 30db HL for right and left sides. Lily repeated ed spondee words to the softest level she could recognize.   

 

 

IEP - 4 years old

At 4 years old, the following are Lily's IEP goals for the next year.

- Given visual/verbal cues, Lily will improve her speech production of /l/, /l/ blends and initial and final /th/ from the baseline of 10% accuracy in imitation of single words to 80% accuracy in sentences and structured speech as measured by the LPS SLP Articulation Data Collection Chart.

- Given a structured activity, Lily will produce phrases/sentences with correct use of comparatives and superlatives, words denoting time, nouns with two descriptive adjectives, and a variety of prepositional phrases (at least 12 each) improving from a baseline of 25% to 80% as measured by the LPS ECSE Grammar Rubric.

- Given an interaction with a teacher or a peer, Lily will improve her social communication skills (maintain/stay on topic of conversation for 3-4 turns, advocate for herself when she doesn't hear or understand a peer's comments or questions), improving from a baseline of 2 points to 4 points,as measured by the LPS SLP Social Skills Rubric.

 

Happy Fourth of July!!

Fourth of July always means flashbacks to when Lily was just three weeks old. We sat on the deck, while these incredible "BOOMS" went off around us.  She had no reaction.  We just sat there and knew something was wrong. 

Flash forward four years.  We sat on the deck and Lily didn't stop talking.  In just a few minutes, we heard...

"Now everyone in the whole wide world can see the fireworks."

"I'm a cricket."

"Are fireworks power?"

"I'm a little scared but it's fun.  I'm coming over there so I won't be scared."

"Wow!  There's a purple one over there."

"What is that light coming across?"

"I want milk, but Dad is not going to get me any because he didn't hear me."

"There's another colorful one."

"Can you read this part to me."

"What a great day.  I'm squealing for joy."

"Let's pretend we're at Kim's house and I'm a little girl."

"Did you hear another one go 'eeeeeeeehhhhhhhhhh'."

Clearvoice - Another software upgrade coming soon

We're also anxiously awaiting Clearvoice, new software from Advanced Bionics, already released and "approved" in the rest of the world.

Clearvoice helps CI users hear better in noise.  It seems 4-year olds are constantly in noise and so the software can't come too soon.  Here's an interesting article on Advanced Bionics' Clearvoice and its impact on music listening and enjoyment.  

Deaf Education Evolving with Implants

This article describes the impact of cochlear implants on teaching methods for kids who have hearing loss.  Like the Omaha Hearing School, the article provides a good description of the Clarke School for Hearing and Speech, an oral preschool.  While teaching methods are not one-size-fits-all, when children have access to sound at a very young age, an Oral approach maximizes that opportunity for listening and spoken language learning.

Lily's 3rd Hearing Birthday

We had so much to celebrate, we decided to journey to San Francisco for the party. Not only was it our anniversary, but it was also Lily's third hearing birthday.  

It's hard to believe three years ago as her Cochlear Implants were activated, we were hoping to see a response, any response. Fast forward to today. Life is so normal, actually better than normal.  Lily says amazing things like "Can you flare your nostrils" and "we are the same height."  

The only thing that seems different is she beeps at the end of the day when her batteries run down (I suppose we all beep in one form or the other when our batteries die). We are thankful everyday for the miracle of her Cochlear Implants. No one even asks us what they are anymore, but we love to talk about them if they do.

Lily did try and explain to a stranger on the ferry that it was her "hearing birthday and that she has CIs that are stuck to her head with magnets." The stranger just smiled, having no idea what she was talking about.  I just smiled, knowing very well what she was talking about. Lily's Cochlear Implants have allowed her to live fully, without missing a beat, in the hearing world. 

Lily is certainly maturing into a little, or as she sees it, BIG girl. You'll notice the high-flying trampoline that she wanted to do "for her birthday." Absolutely no fear. She flew up in the air about 20 feet as she was strapped to a harness, over and over again.

We also got to see our dear friends in Napa and SF. Thanks for all the hospitality.

One of the best ways to teach new language is through experiences and San Francisco offered endless opportunities for this.  From the great food at Fang's to the various forms of transportation (no a ferry boat does not have wings), from the children's museums to the public art work, we loved it all.  

 

Excellent explanation of how our hearing works

Here's an excellent explanation of how our Hearing Works. 

Restaurants offer hearing assistance

Restaurants are finally geting it.  Helping customers hear in noisy situations is huge.  Of course it is in Sarasota, Florida.  Older customers = Big business. 

Two local restaurants -- Caraguilos and Owens Fish Camp -- are the first in the nation to offer a tabletop sound system that sends clear, understandable voices from a microphone directly into a hearing aid or cochlear implant, according to a new local hearing loss group.  Permanent "hearing loop" systems have been popular in Europe for years, but the new portable system has been adapted for use in the U.S. by St. Petersburg's Complete Hearing Solutions...

99-year-old gets Cochlear Implant

It's never too late to improve your hearing.  A 99-year-old gets a Cochlear Implant.

Teenager

Tonight as Lily was going to sleep, she asked me, "How long will it be until I am a teenager?"  When I put up all ten of my fingers she said, "10 weeks.  I don't think I can wait that long."

Hearing Loss Infographic

Great Hearing Loss infographic from Rachel at Cochlear Implant Online

Omaha Hearing School....How do I love thee?

This weekend we attended a fabulous fundraiser for the Omaha Hearing School.  It was at the top of the Midtown Crossing Condos overlooking the city.  A perfect space, with fabulous food from local restaurants, a giant deck with temperatures like bath water and a packed room of supporters.  

At the end of the evening, the Director asked if we would address the crowd and tell Lily's story.  

Talking about Lily comes easy, as did my gratitude and thanks for all the support we've received.  Since Lily was two months old, we've worked weekly with the Omaha Hearing School.  They've shaped the way we teach Lily to talk and listen, with remarkable results.  They've provided unending support for our family.  They've set our goals higher than we ever thought possible.  

After Lily turned three, driving to Omaha for the mainstream preschool twice a week has been a major commitment. However, we sleep well knowing Lily is in an incredibly language-rich environment with great acoustics, and teachers who are highly skilled and committed to maximizing the technology.   The Omaha Hearing School staff is extremely flexible to Lily's needs and they take parent input seriously and act upon it. Dreamy, I know!

After we spoke at the event, a Omaha Hearing School graduate spoke, who is now age 26.  She is a gorgeous young woman who graduated from college at the top of her class and is a successful CPA.  Her family still generously supports the school and feels they can never "Repay" the school for how they have helped their daughter. Her Dad gave us a squeeze and through a few tears said he agreed with everything we said.   Pretty special.  

To any of our readers who want to invest in a organization that changes lives, here's your chance.  The Omaha Hearing School is an incredible 501(c)3 which is making a major difference in the lives of kids who have hearing loss in Nebraska and the surrounding area.  We hope you will consider a contribution.   

Storing Sounds In The Inner Ear

Do we store sounds in the inner ear?  Interesting research article exploring this theory.

Microphone Array Embedded in Eyeglasses

Interesting research article on Microphone placement embedded in eyeglasses for CIs or hearing aids.

All Preschool Programs are Not Created Equal

Good article on Hearing Families called All Preschool Programs are Not Created Equal.  The article examines a study of 8-to-10 year old children with hearing loss who were all in mainstream elementary schools and had always used oral language.

When they compared the outcomes to a comparison group of kids with normal hearing, they found that half of the kids with hearing loss were far behind normal hearing children their own age. But the other half, showed age-appropriate skills, despite their hearing loss.  When they tried to understand the split in the hearing loss group, they saw that all of the kids on age level attended preschool programs that were either specifically for children with hearing loss or private preschools with low teacher-student ratios. The kids whose skills fell behind the kids with normal hearing, all attended special education preschool programs that were not specifically for hearing loss, but had kids with many different kind of disabilities all together.