Life is Bliss - Lily's Cochlear Implant Journey

Lily Plays the Cello - Year 2

This is Lily's second year of cello.  As a 5th grader she is currently preparing for her upcoming winter concert. It's pretty amazing to see her listening to the notes, rhythms and melodies so carefully.  She is now working on tuning her cello and knowing if the notes are sharp or flat.  We never dreamed that this would be possible. 

Here's a very interesting recent literature review on music and cochlear implants called What does music sound like with a Cochlear Implant.  Very technical, but worth the read.  

However, Lily would disagree with much of the research.   She believes it's hard to understand how kids implanted pre-lingually with cochlear implants hear music. 

 

2017 Lily Update and More

We think about Lily's hearing everyday, but life now seems pretty normal. Hearing doesn't limit Lily's activities or experiences.  In fact, she seems to gravitate to all things talking, listening and music.

I wanted to summarize Lily's activities and growth through 2017 starting with two videos that featured Lily as a guest host.  These videos were targeted to fourth graders and highlighted special things about Nebraska.

 

Advanced Bionics Q90s - Review by a 4th grader

We have loved Lily's AB Neptunes, but decided it was time to move to AB's Q90 Naida ear-level processors.  

Lily's experience and ease of change has been positive.  Here are the Top 8 things we like about the AB Naida Q90s.  

• Lily says she could hear at a level 8 (out of 10) with her Neptunes, but can hear at a level 9 with her Q90s.  
• The Neptune programs rolled directly over to the Q90s so the sound is very similar (according to Lily).
• The ear-level processor wearing hasn't been a problem with the new weight on her ears or keeping them on her head except when she's running or reading upside down.  However I can't imagine how you would keep them on a baby or small child.  Neptunes are still dreamy for this young population and have fewer parts to break.    
• Lily doesn't turn her head so dramatically when trying to hear in difficult listening situations because the T-mics are now in the center of her ears, instead of the microphone being on the side/back of her head. 
• Lily can now use headphones like all the other kids, in addition to steaming music or sound via bluetooth (something other kids can't do!)  
• No more tank tops to hold the Neptune in place and long cords running from the headpieces to the processors. Although she was sad to see the tank tops go.  
• There is much easier access to the Q90s to change the programs or adjust the volume, although Lily prefers set it and forget it.  Her programs include a regular program with auto zoom and wind block, duo phone and super stereo zoom.  
• Lily likes the automatic auto zoom feature that "turns on" in noisy situations. She can hear the sound cut out for half a second before it turns on, however the FM overrides this feature when it's on.  
• Three-year warranties for all the components.  

Things we'd like to improve:

• Lily longs for complete static and waterproof processors. However the waterproof setup of the Neptune totally changed our lives and Lily will still wear them for water activities. The Q90s have a water proof box we could have selected, but we chose to stick with our beloved Neptunes for water.
• The only battery that has an FM connection is the 170. For Lily, the FM is worn during every school day.  The length and weight of the battery and FM receiver becomes quite long, especially on a child.  The 170 batteries last Lily about 14 hours, which is close to a full day but sometimes we have to change them.
• None of the new "mini" batteries are included in the initial purchase of the product.  Especially for children, this seems like an ideal product that would be used on the weekends.

Phonak Pen Review - Experiences of a 4th grader

Lily has been testing out the Phonak Pen for a month now.  We're impressed! 

The primary objective in purchasing the pen was to try the omni-directional mic in the lunchroom for a better listening experience.  Lily has always struggled in this noisy environment and nothing except sitting in a different room helps.  The omni-directional mic, which is incorporated in the pen, seems to be a great improvement over the traditional directional mic of a Phonak Inspiro in this situation, and allows Lily to hear multiple kids at the same time in different directions.

The challenge in the lunchroom comes when the students get too loud and instead of being able to figure out what voice to amplify, the pen amplifies everything including dishes clanking and voices from other tables that are not involved in the primary conversation. At this point, the pen needs to become a traditional directional mic to be useful.  However, the pen's small and light profile makes it less intrusive to hang around someone's neck and truly feels and looks like a pen.  

Lily is also using the pen on the playground.  The pen's capacity to "beam" when pointed at someone, gives Lily increased hearing advantages.  On the playground, she either wears the pen on her neck, keeps it in her hand to beam or hangs it on another kid if they are running around. The disadvantage here is that the range for the pen is much shorter than the Phonak Inspiro, but Lily is use to staying fairly close to her peers to hear the conversation.   

We have not been able to try the new Phonak Inspiro Touchscreen which incorporates the microphone into the transmitter (eliminating the long cord and small microphone that gets tangled on everything) and also has an omni-directional microphone when set flat. This is a great improvement for the Inspiro. Unfortunately, the pen doesn't network with the Phonak Inspiro, which is a major disappointment for these different use cases, but it does network with other pens.  The pen also doesn't network with the classroom media hub. Lily must connect with each device as she changes between them and while this isn't hard, it does require a little time and knowhow.    

As for durability, the Inspiro feels slightly heavier, like it could withstand more abuse, but so far we haven't had any problems with the durability of the pen.  The pen does come with a lanyard which cleverly attaches to the pen's clip.  

Another time that Lily uses the pen is in her reading group.  Again Lily uses the omni-directional feature to hear the kids around a table and if needed, she or the teacher will slide the pen on the table closer to the quieter students.  Lily prefers this set up to having additional large student microphones around a table.  

Phonak has also come out with a flat low-profile table microphone, which looks ideal in this "reading group" situation but it has a fairly high price point, so we haven't had the opportunity to try it.  

Overall the Phonak Pen has been a great addition to our hearing technology tools. 

Lily discusses her new cello and plays jingle bells

Lily discusses her new cello journey and plays jingle bells after a month of lessons at school.  

Never did I expect Lily to take on playing a stringed instrument. She takes great joy in making the music and being able to hear whether her notes are sharp or flat.  Who knew this would be possible.  A real dream come true.   

The video also allows new families on this hearing journey to hear what a 9-year-old with CIs might sound like.  

 

Sapheara and Blue Ear - Back in action thanks to The Children's Hearing Institute and Marvel Entertainment

The Children's Hearing Institute has announced another collaboration with Marvel Entertainment.

Blue Ear and Sapheara, Super Hear-O's from the comic book Sound Effects (which was awesome!), are back in action again.

CHI has released Scene 1: Rooftop Rescue (Click HERE to download and print) and Scene 2: Silent Threat (Click HERE to download and print).  Scene 3 and 4 will be released in the coming months. Such a wonderful gift to our kids!  

Lily is already planning on how to replicate her costume.   She was also thrilled to see that Sapheara may be wearing AB CIs.   The mention of an "Electromagnetic Pulse Generator" sent chills down our spines with the thought of wiping out every electronic device in the city!  YIKES  :)  Find out what happens next! 

We'd love a giant cardboard cutout of Sapheara.  All kids need a Super Hear-O.  Can anyone help us with this?

Cochlear Implants in Noise: SNR loss in children using the BKB-SIN

Lily just finished her semi-annual visit to the audiologist.  We arrived with what turned out to be a broken headpiece, and fortunately, were able to order a new one for delivery the next day.  The headpiece had been cutting in and out for the previous few days and created a number of difficult listening situations with just one side.  

With a loaner headpiece, Lily went into the booth for tests.  

In quiet, Lily does very well.  Tonight, Lily was asking if she hears as well as a "typically" hearing person.  When we said yes, pretty much, she was quite proud.  However, noise continues to be a challenge.  Especially when the noise is variable.  

At the audiologist, Lily took an interesting test - BKB-SIN.  The BKB-SIN is a speech-in-noise test that uses BKB (Bamford-Kowal-Bench) sentences, recorded in four-talker babble. The BKB-SIN can be used to estimate SNR loss in children.   Lily's results were as follows.  Essentially, it says for Lily to get 50% accuracy, the signal has to be at least +9db above the noise floor or +11.5 db more than a normally hearing person (in a bilateral hearing situation).  

BKB-SIN Right CI only   SNR for 50% correct:   SNR loss re: normal Left CI only   SNR for 50% correct:   SNR loss re: normal Bilateral CI’s   SNR for 50% correct:   SNR loss re: normal	+14.5 dB 17 dB   +9.5 dB 12 dB   +9 dB 11.5 dB

An individual with normal hearing sensitivity would be expected to score 50% correct at a signal to noise ratio of -2.5 dB.  The SNR loss is the difference between the signal to noise ratio at which Lily scored 50% correct and -2.5 dB.

Hearing First - Impressive new LSL resource

Hearing First is an impressive new resource that presents the various aspects of a Listening and Spoken Language (LSL) approach.  

http://www.hearingfirst.org

Through a variety of informational resources, families and professionals can use this site to learn about strategies used to improve outcomes when teaching children with hearing loss to talk and listen.  

Language-rich preschool for Bodie

Lily's brother Bodie has just started his second semester of preschool.  

We selected a language-rich preschool run by a woman who was trained as a hearing resource teacher and who continues to serve kids with hearing loss.  Of course Bodie knows all about the FM that the teacher wears.

We love the intentional teaching and targeted language incorporated into the lessons.  Teachers trained with a strong listening and spoken language (LSLS) focus for kids with hearing loss are able to extend those incredible skills to improve the language of all kids.  

Bodie already has an impressive vocabulary and doesn't stop talking. Takes after his sister!  Who would have ever predicted that!  

 

 

 

Flower Girl Experience

A few months ago, Lily got to live out one of her bucket list dreams of being a flower girl for our friends' wedding.  It was a beautiful night with an equally fantastic flower girl dress to match.  Lily stayed on her best behavior, walked down the aisle on cue and danced the night away.  

The only challenge came when trying to communicate in a big converted warehouse that had been transformed into a wedding reception environment. 

Lily occasionally looks to me as her "oral translator" in noise and unless we explain or point out Lily's hearing loss, it often goes unnoticed.  However this night, one of the guests asked why I was repeating everything they said...weren't they speaking English?  I had Lily explain that she uses CIs to hear and that noise was often challenging.  It was a great learning moment. 

 

Speech Perception Testing - The Challenge of Noise

We recently went for Lily's six-month CI tune up with her audiologist.  The two hour appointment goes quickly, however this time we were able to do some speech perception testing and examine what happens to Lily's listening abilities when she uses the FM system.

HINT Sentences in quiet:  97%

HINT Sentences in noise (+5 dB signal-to-noise ratio): 71%

HINT sentence materials are at about a 1^st or 2^nd grade reading level, so one might compare her performance on this test to listening to material that is routine or familiar.  A signal-to-noise ratio of +5 dB is not especially uncommon in a typical classroom and noise levels can often be even higher than this.

AZ Bio Sentences in quiet:  84%

AZ Bio Sentences in noise (+5 dB signal-to-noise ratio):  42%

AZ Bio Sentences in noise (+5 dB signal-to-noise ratio) with FM in use:  91%

AZ Bio sentence materials are at about a 6^th grade reading level according to some lectures.  It would be appropriate to use Lily’s performance on this as analogous to listening to material that is unfamiliar or that is new information/vocabulary.

We continue to search for better technology to help Lily hear in noise, especially when it is in a multi-talker environment like the lunchroom or during small group discussion.  

 

IEP Goals - Second Grade

I share Lily's ongoing IEP goals to help other families in their hearing journeys.  

In IEP meetings, parents are always asked, "What do you want your child's goals to be?"  Especially in the early years, it's extremely difficult to know what is possible, what can help my child, or what should be without spending hours researching and contacting outside professionals for guidance.    

I hope by sharing our story, other families with similar journeys can use these goals as a starting place.  Each goal below has a complex matrix to measure progress.  

Goals:

1.   Contribute to discussions without dominating, accept topic of others by adding relevant information to the conversation and ask for clarification or for confirmation if not sure of what was said. 

2.  Given various coping strategies, Lily will have a conversation with her peers on the playground and in the lunchroom.  (These are noisy difficult listening environments)

3. Improve her ability to advocate for herself by increasing her vocabulary and understanding of the functions of the parts of her CI and FM, her responsibility for monitoring her CI and FM system and by communicating her needs with her teachers.

Reading upside-down

Lily commonly reads upside down.   She and the book are totally flipped over while her legs wave around in in the air.  Not sure what it means or if there is any research around something like brain stimulation when reading. Maybe this could be Aunt Kelly's new reading research focus???  

Lily continues to devour books and grow in her literacy skills.  We check out bags of books, instead of just a few, because they don't last very long.   

With all this time spent upside down and flipping around, Lily is now enrolled in gymnastics.  We briefed her teachers on tips for communicating, but parents sit behind a glass window in one corner of the gym, so I'm not sure how much she is actually hearing or missing.  The gym is a very challenging listening environment.  However, even with the difficulties hearing, Lily is loving the experience.  

Her Neptunes make a little bump under her leotard, but don't seem to give her much inconvenience.  The headpieces stay on well in their ponytail setup, even when she's spinning around and around and around.  No limitations for this kid!

Second Grade

Second grade seems to be going well.   We had a "pre-meeting" the day before school started with all the second grade teachers and new staff at the school. This was in addition to the regular IEP team transition meeting which also had new faces like a new SLP and Assistant Principal.  It reminded me of the critical need of training and re-training teachers to maximize the educational experience for our kids.   

The new SLP, who was just out of graduate school, told me that she's already met Lily.   Then she adds that as a student she attended our local parent group meeting Amplify, where we have SLP students "babysit" and she was able to meet kids with CIs.   Feels like a small success that this may have been her exposure to kids with CIs.  

Video - School Poetry performance

Lily reads her poem about bubbles during a first-grade poetry celebration.  

 

Hearing Research - Lily's contribution

Lily and her "hearing enabled" colleagues are on the forefront of a generation of kids who are able to maximize technology to hear.  

Because of this, we believe it's important to participate in hearing research whenever possible.  We do it both to benefit Lily's future and the families that will walk in our path.  Over Lily's lifetime we've done a half-dozen studies on language learning and listening.

This summer, Lily will add two more to her research resume.  One study earlier this summer involved a research van coming to our home.  Lily completed numerous listening and language tasks, in the van, to help the University of Iowa understand how kids with hearing loss are learning language, compared to their typically hearing peers.  

The next study will be at Boystown in a few weeks which involves telelearning or telemedicine.   Boystown is studying if providing audiology services for children on-line is as effective as in person mapping.   Here's an Interesting article describing Boystown's future hearing research focus. 

 

 

#HearIam Phonak contest

We entered Phonak's recent #HearIam contest with cute photos of Lily and her Phonak Inspiro FM system.  The prize is a new Phonak Roger Pen, which is a microphone cleverly disguised as a writing pen.  Very cool!  

 

Hearing Our Way Magazine

Interesting new magazine called Hearing Our Way for children and teens with hearing loss.  Subscribe on the website to get a free subscription mailed to you today.  

Hearing Our Way is an educational magazine for children and teens with hearing loss designed with language, listening, self-advocacy, and cognitive skills in mind. Independent readers will enjoy the magazine on their own, though students of all ages and reading levels can benefit from using the magazine as a classroom reader guided by a teacher or parent. Articles and features are great discussion starters, and content can be easily implemented into current curriculum, IEP goals, and Common Core standards. 

 

 

 

Last day comments - 1st Grade

The following are comments made on a sheet of paper brought home today called "One thing I like about Lily Bliss is..."  Certain there were many examples provided for her entire class by her lovely first grade teacher, but it still may give us a little glimpse into the life of Lily.

Lily is funny, you are my friend, you are very kind, you are always listening (my favorite), you have very good hand writing, you are good at playing nicely, you are a good friend, you are very nice, you are very nice and funny, you are the smartest girl on the earth and you are so nice, funny and really smart, I like you, she helps me stay quite in the halls, you are helpful and kind, you are funny, you are nice, you are funny, you are funny, and you are nice. 

Teacher added:  funny, good friend, super speller, and learner.  

Huskers' Spring Game

Lily and Bodie experienced their first Husker Red/White spring game.  Feels a little like Where's Waldo.  Can you find them on the field?  

While the sound system in the stadium was really loud, it often times wasn't that clear.  Announcements, calls and music should have been captioned for those who are deaf or hard of hearing.  

Some sports stadiums are moving to IPads where people can follow the captioned action, but I hope that progressive stadiums will figure out Jumbrotron captioning before they are legally required to.  

Hawaii Adventure

We took a pretty awesome trip to Hawaii in March, to celebrate my parents' 50th wedding anniversary.  I'm not sure why it took us so many years to get to Hawaii, of all the places we've traveled to in the world, but the experience was very memorable for all of us.   Bodie asks daily if we can go back to the pirate ship pool, while Lily often recreates the luau in her grass skirt.   

Exposure to a new culture and a variety of new words like Mahalo, Ohanu, Aloha and whale breaching were amazing, as were the beautiful sunsets and time with family.  Not sure what we would have done without Lily's waterproof Neptune processors.  We were in the pool, ocean or the rain everyday.  

We're currently searching for a yellow hardy hibiscus, Hawaii's state flower, and now understand the theme of Trader Joe's much better.  Need to find an excuse to get back to the other islands, or maybe just revisit Maui and Honolulu.  

We took hundreds of pictures and are currently working to get the photos down to a manageable number.  Just posting a few here to capture the Aloha spirit, to thank my parents for a wonderful trip and to preserve an amazing experience.

 

 

Metal Slide Journey

 

It's been a huge week.  After two years of requests, Lily and the other kids with cochlear implants at her school, can now go down one metal slide without fear of damaging their electronic hearing equipment from electrostatic discharge.  It's a dream come true.   The slide is very fast and very popular with all the kids.  Lily says the slide is a "madhouse."  Building new vocabulary is just another advantage.

We celebrated the slide's accessibility, our donors and supporters with a ribbon breaking, speeches and cookies.  The school's leadership has been so supportive.   Many of the families were there to watch with amazement when the kids' hair didn't stand on end as they sailed down the slide.  Having a metal slide makes it a little easier to breathe knowing our kids have one less barrier and risk to hearing.  

I was proud to work with the other CI families to help to begin to make our school's playground accessible for all kids. This journey has moved the school's PTO to invest in "inclusive" playground equipment going forward. In fact, another new piece of equipment is going in this week.  I was thrilled to hear that other parents thought that all kids, no matter the ability or disability, should be able to access the playground and not just be able to get on the rubber surrounding the playground. 

While the two-year-old equipment was ADA accessible, it wasn't inclusive.  With kids of varying abilities served in mainstream classrooms, it seems playgrounds are an area that needs to be given another look. 

Dale Sindell at TEDxCibeles

As a big TEDx fan, I found this talk by Dale Sindell of TEDXCibeles in Madrid fascinating.  (TEDx speakers page)

Dale started losing her hearing at age 19.  After graduating from college, she moved back to Spain, got married and soon lost the rest of her hearing.  Somehow she continued to work in a variety of career roles and then had children, which resulted in her youngest child being diagnosed with hearing loss. 

At that point Dale founded t-oigo.com, a non-profit virtual community which provides information in Spanish for people with hearing loss. Today 30,000 users follow her site each month.  She's also an advocate for bilingual education - Spanish and English for kids with hearing loss.  Such an inspiration. 

 

Science Fair: Social Contagion

LIly's second elementary science fair experience was a success.  She studied Social Contagion, the idea that if we observe people who are tired, sad or bored, we become tired and start yawning.   The same is true when we study people who are happy and laughing.  We feel happy and start smiling with those we observe.  

Of course it didn't take much encouragement for Lily to develop a video of herself acting out both roles.  

Next year we hope to complete a cochlear implant or acoustics study, but this year we didn't find the right approach for a first grader.  Backwards engineering or reprogramming her CI seemed a little daunting.  Last year's project measured the noise in her school (there's a lot of it!!).  

Let us know if you have any great ideas for a science fair project we could attempt. 

Vision Loss Boosts Auditory Perception

A facinating new study found that when "they kept adult mice in complete darkness for one week, the animals’ ability to hear significantly improved. What’s more, when they examined the animals’ brains, the researchers detected changes in the connections among neurons in the part of the brain where sound is processed, the auditory cortex." 

"At least in mice, it appears that the brain responds to sensory loss by swiftly reallocating connections among the remaining senses, perhaps providing the animals a better chance at survival.  This could mean that someday people with hearing loss, or other sensory disorders, may be able to  selectively rewire their brains."

Talking to premature babies

Facinating new study about talking to premature babies by a team at Women & Infants Hospital of Rhode Island and The Warren Alpert Medical School of Brown University.

Researchers found that "Premature babies benefit from being exposed to adult talk as early as possible."  Preterm infants exposed to higher word counts at 32 and 36 weeks gestation have higher cognitive and language scores at seven and 18 months corrected age.

It makes wonder why families still have to fight for early implantation.

 

Do chickens hold the key for hearing loss

Chickens have the amazing ability to restore their own hearing, and this trait inspired the Hearing Health Foundation to seek a cure for hearing loss in humans.  I knew there was a reason we got chickens!

Check out this interesting article on the research and the Hearing Health Foundation's chicken video.  Curing hearing loss in 10 years?  Maybe?

Cochlear Implant with no external hardware

Fascinating article on the future of cochlear implants.

Researchers have developed a new, low-power signal-processing chip, which sits in the middle ear, that could lead to a cochlear implant with no external hardware. The implant would be wirelessly recharged and would run for about eight hours on each charge.

Importance of classroom acoustics - Presentation

Incredible flash presentation on the importance of classroom acoustics from Northern Illinois University. 

It gives the viewer a great overview of the terminology and strategies to improve classroom acoustics. 

Hear to Learn coverage in eschool news

More exciting coverage of our Hear to Learn project in eschool news.  It's a publication for daily tech news and innovation. 

Family uses media effectively to gain cochlear implant coverage

Great story of a family overcoming an insurance denial by Conventry for Cochlear Implant coverage.  He even received Advanced Bionics.  

 

CI Wear Shirts

Love the innovation of the family who created CIWear, an active wear shirt with pockets for cochlear implants and other electronic devices.  

Where to put the Neptune processors is a challenge that adults and children face.  Especially in the pool, ocean or even during a basketball game, CI users want the processors to be secure and the cords to stay close.

While swimming in a pool, we clip Lily's CIs on her sleeve then run the cords up through her shirt.  This new active shirt design looks even more secure.   Now if it only came in pink!   

 

The greatest museum ever! Exploratorium - San Francisco

We journeyed to San Francisco for a quick trip in December.   While we've been to San Francisco a number of times before, we had never been to the Exploritorium.  It's been open for 50 years, but just recently reopened on Pier 15.  WOW!  

I thought it was the best museum that we'd ever been to. That includes children's museums, science museums, and Smithsonian's all over the world.  The creators captured the balance perfectly between engagement and education, art and science.  There was even a large exhibit on Harold Edgerton, a Nebraska native who invented the strobe light.   Years and years of school science fair experiments in front of us.  We finished the day by riding a cable car ride which Lily insisted we try.  

Lily's Card Shop

Sharing a entrepreneurial spirit with her Dad, Lily describes her card shop.  

 

Santa Claus visit

A great trip to see Santa today.   Lily is asking lots of questions like why don't all the Santas look the same?  How is it possible for Santa to get all over the world in one night?  Shouldn't he be working on toys, instead of talking with children all day?  

We've been ringing the Christmas bells and asking Lily if she can hear them.  She always says, "Yes I can hear them. I believe!"  (even when the bells aren't ringing).  Smart little kid!

Therapy via IPads for children with cochlear implants

Great story on using IPads for teletherapy in a program called BabyTalk.  For newly implanted children under three, this program helps babies in Northern California learn how to listen and speak.  It's a partnership between Stanford School of Medicine and Jean Weingarten Peninsula Oral School.  

Lucile is one of about 17 other hearing-impaired toddlers from across Northern California — from Salinas to the Oregon border — to participate in a new "teletherapy" program called BabyTalk, a collaboration between the Stanford School of Medicine's Department of Otolaryngology and the Jean Weingarten Peninsula Oral School for the Deaf in Redwood City. - See more at: http://med.stanford.edu/ism/2013/december/babytalk-1209.html#sthash.OYDThTLM.dpuf

Lucile is one of about 17 other hearing-impaired toddlers from across Northern California — from Salinas to the Oregon border — to participate in a new "teletherapy" program called BabyTalk, a collaboration between the Stanford School of Medicine's Department of Otolaryngology and the Jean Weingarten Peninsula Oral School for the Deaf in Redwood City. - See more at: http://med.stanford.edu/ism/2013/december/babytalk-1209.html#sthash.OYDThTLM.dpuf

Lucile is one of about 17 other hearing-impaired toddlers from across Northern California — from Salinas to the Oregon border — to participate in a new "teletherapy" program called BabyTalk, a collaboration between the Stanford School of Medicine's Department of Otolaryngology and the Jean Weingarten Peninsula Oral School for the Deaf in Redwood City. - See more at: http://med.stanford.edu/ism/2013/december/babytalk-1209.html#sthash.OYDThTLM.dpuf

Lucile is one of about 17 other hearing-impaired toddlers from across Northern California — from Salinas to the Oregon border — to participate in a new "teletherapy" program called BabyTalk, a collaboration between the Stanford School of Medicine's Department of Otolaryngology and the Jean Weingarten Peninsula Oral School for the Deaf in Redwood City. - See more at: http://med.stanford.edu/ism/2013/december/babytalk-1209.html#sthash.OYDThTLM.dpuf

Barriers for children with hearing loss K-12 in the classroom

New report released by the Laurent Clerc National Deaf Education Center at Gallaudet University to describe the barriers that children with hearing loss aged birth to 21 face in the classroom and with school administration.

Long-term improvements in oral communication and peer relations in children with CIs: parental testimony

New study out of Penn State showing long-term positive outcomes of cochlear implantation. 

The research shows that on average, children improve in oral communication skills and have better peer relationships years after implantation, rather than immediately after. Even implant recipients who performed poorly several years after the procedure continue to improve....What helps deaf adolescents cope in middle school? The findings of their study suggest that deaf children should be supported in their early development to build healthy levels of self-esteem and confidence. The degree to which implanted children are accepted by mainstream schools – whether they are understood by their teachers and peers – can also help improve their peer relationships.

 

Supporting Success for Children with Hearing Loss

Supporting Success for Children with Hearing Loss is a great new resource filled with information about the learning and social issues of children with hearing loss and what you can do to better support the future success of these children. Resources are at no cost, designed to be easy to understand quickly, and practical to use.

Hear to Learn coverage - LJS

Thankful for more coverage of our Hear to Learn celebration - Moms give thanks — loud and clear — to supporters of amplifier project in the Lincoln Journal Star

 

Huffington Post Coverage of Hear To Learn Project

Lily's Mom is amazing (regular readers already knows this). As usual she continues to make an impact for Lily and others. Today she got some much deserved national coverage for her Hear To Learn project to bring amplification to elementary schools here in Nebraska. Check out the Huffington Post blog post and the video (Lily makes a cameo as well).

Technology Can Help Ensure Our Students Hear, Learn, and Achieve.

So proud of the work she does day in and day out.

 

Study: Hearing preservation

Interesting study on Hearing preservation for Cochlear Implant outcomes.

http://www.audiologyonline.com/articles/effects-hearing-preservation-for-cochlear-12078

 

A purpose? We found it!

I haven't posted forever, but think I'm coming up for air now.  I ran across this post on a blog which I've followed for a number of years and thought it perfectly captured how I'm feeling now.  We met this family at AGBell last year.  Just substitute Lily's name and I could have written it myself.  However this Mom has boy triplets who are seven-years-old (one of which has CIs and one with hearing aids) and one three-year-old girl with her own set of challenges.  The family is amazing.  When does she have time to blog?

http://thelawrencetriplets.blogspot.com/2013/10/a-reason-purpose.html

Her blog post is titled "A Reason, A purpose?"  And I think it captures a big part of Lily and my purpose, at least right now.  We've connected and mentored and been mentored by so many families around the world and in our hometown, many of who have become very close friends.  And many who have gone on to mentor others.  Which is amazingly cool.  Families almost always thank us for giving them "hope" which is so desperately needed, especially in the early days.  

It seems everywhere I go, we are introduced to people with hearing loss or people with children with hearing loss.  It may be fate or our network crossing, but it truly is some of the most satisfying work I do.

Lily inspires them all.  She too, like Cormac in the blog post, has a love of life and the ability to inspire others.  She also has a great skill at listening and spoken language, something we've focused hard on since she was two months old. It's paid off.

She received all 4s, the highest grade in Language Arts, which is dreamy. Her reading test, after the first quarter of the first grade, placed her at the end of the third grade. She could read beyond this, but began to lose some comprehension.  She also received 4s in "Confidence in Self" and "Singing," among others, which is pretty awesome. These are both areas which we have worried about for years.   

But I also see Lily's 22-month-old brother listening with ease, picking up words out of songs on the radio and speaking in four-plus word sentences already.  He probably knows more than 500 words.   At the the same point in Lily's life, she was not yet putting two words together, but she knew 200 words or so and we documented each one.  That early childhood hearing matters.  Lily's certainly caught up, but we certainly can't let up.  

Lily struggles hearing especially when it's noisy or kids have soft voices.  I watch how much she misses when I volunteer in the classroom or when Lily is outside the school.  It's tough.  

One Mom told us she used to tell her daughter with CIs, who is now in high school, just to run after the girls when they run, even though her daughter had no idea what game they were playing or why they were running because she couldn't always hear the conversations.  The Mom said the girls would make it very clear if they didn't want her daughter there.  I think that was pretty good advice. :)  

Cochlear Implant history and pioneers

The 2013 Lasker~DeBakey Clinical Medical Research Award honors three scientists who developed the modern cochlear implant, a device that restores hearing to individuals with profound deafness. Through their vision, persistence, and innovation, Graeme M. Clark (Emeritus, University of Melbourne), Ingeborg Hochmair (MED-EL, Innsbruck), and Blake S. Wilson (Duke University) created an apparatus that has transformed the lives of hundreds of thousands of people. Their work has, for the first time, substantially restored a human sense with a medical intervention.

Check out their incredible video interview of cochlear implant pioneers Graeme M. Clark, Ingeborg Hochmair and Blake S. Wilson and an extensive description of the history of the development of the cochlear implant. 

It's hard to believe the FDA only gave its inaugural approval to a multichannel cochlear implant in 1985 for treating adults who could hear before they went deaf. 

Babies hear their Moms before birth

New research reinforces what many people had believed—babies hear what their moms say and their brains recognize these words after birth. 

The researchers' conclusion was that “The better we know how the fetus’ brain works, the more we’ll know [about] early development of language.   If we know better how language develops very early, we may one day be able to develop very early interventions [for babies with abnormal development].”

Whenever I read research like this it reminds me how critical early intervention is for children with hearing loss.  Not only did Lily miss the first ten months of hearing after she was born, but likely she missed another six or seven months of sound as a fetus.  The implications of that amount of language missed is hard to comprehend. 

You'd never know it today, but it's important for us never to forget. 

Summer Fun

Lily recently learned the photographer's phrase "Work it baby!"  She thought it was hilarious.  

Summer Camps

Lily has attended some great camps this summer.  After Farm School, she attended an Art and Cooking camp with her CI/hearing aid friends and then last week it was "Fancy like Nancy" camp, which builds off the Fancy Nancy books.  Here we are at the final tea party in our fanciest dresses.  Bodie is spending his days hanging out and talking up a storm. 

Lily's first piano recital

Lily, age five, has her first piano recital after five months of lessons.  We call her Beethoven, she calls herself Lady Gaga.  In the video she is performing Twinkle Twinkle and This land is your land. The set up takes longer than the song. 

The early laugh came because the paper clips we had on the pages flew off when she opened the book.  Near the end of the second song you can hear her brother cheering her on when he shouts her nickname "Coocoo."

With Cochlear Implants and determination, anything is possible.

 

Bright Lights Farm Camp

Last week, Lily attended the fabulous Bright Lights Farm Camp.  Run by a retired kindergarten teacher with 37 years of experience, there was a plan, vocabulary, instruction time, songs and free time.  There were areas to pet chickens, ducks, goats, pigs, and cats.  Kids could brush or ride horses.  They could fish in a stock tank with nets or build things in the workshop.  At the end of each day the kids even wrote in their journals.  

If you enlarge the picture below, you can see how farm camp could be a very difficult listening situation. It was partially in a metal barn, with open doors and cement floors, and 30 kids.  However, the teacher wore the FM and even when her face was turned to the back wall, Lily, situated in the front row, could still hear her well.  

Challenges came when there were guest speakers and the lead teacher forgot to pass around the microphone.  For example, Lily missed all the information about the bull.  She just couldn't hear it. Overall, Lily ended the week with a ton of great farm experiences and language.  Not too bad for a city kid loaded up with technology.  Life is pretty normal/extraordinary.  

Lily talking about the monkey bars

If you didn't get enough of Lily in the last video, here she is talking about her experiences on the monkey bars.  This was her narration and the first "take."