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. 

 

My (Lily's) first blog post, and more

Hi guys. I bet you've been waiting for this for a long time. Yes, I have started writing my blog (with some help from Mom and Dad of course).  

So guess what? We got a puppy. His name is Finley, and he is a Beagle/Bichon mix. I was thinking about training him to be a hearing dog. Any tips? Do any of you have hearing dogs? Let me know in the comments.

I have recently been watching this YouTube channel called Good Mythical Morning (GMM) which I love because they (accurately) caption all of their videos. (Thanks Rhett and Link!) Let me know if you watch Good Mythical Morning in the comments section. I think that's it.

My brother Bodie is doing great. He started Kindergarten this fall and has started to read chapter books.

Thanks to all of you who have supported our blog since the beginning and told us about your amazing hearing journey. Thanks!

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 Live - Kids with Hearing Loss Need Super "Hear"oes too!

We love Marvel Entertainment and The Children's Hearing Institute's Super Hero Sapheara.  She has bilateral pink CIs, a pink cape and boots, and a long pony tail.  Her super power is the pink gem around her neck that offers a protective shield to those around her.  

It's important for us all to have super heroes and Lily has certainly found one she adores.    

 

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?

Fourth grade and preschool bound!

Today is the start of fourth grade for Lily and another year of preschool for Bodie. Who would have ever imagined? Lily continues to achieve at very high levels and remains passionate about reading (and life!). She just finished the new Harry Potter script, after a summer of pouring through books.

Lily has her darling Kindergarten teacher again for the fourth grade. We are lucky she is such a strong teacher and will challenge Lily and help her grow.  

Unfortunately, our favorite principal retired this summer. This was a huge blow to the amazing school and culture she developed.  We are ever indebted to her leadership, advocacy and inclusion focus in a growing school. Hopefully we will cross paths again.  However, our new principal will be great too and has already shown great interest in "hearing issues" and providing strong support and inclusion.  

We are also lucky to be with other families and kids at the school who wear CIs.  We are able to support each other in our kids' hearing journeys.  I'm not sure where we'd be without them!   

Lily continues to wear her Neptunes, and we hope new AB BTEs will come out next year. Lily's been seeing some new advantages in BTEs like using headphones and some directional microphones. She continues to utilize a Phonak Inspiro in the classroom, in addition to a soundfield and Dyna-mics. And the best part is that all the technology worked on the first day of school!  Lily's hearing resource teacher gave a great training to the school's staff last week to prepare them for the technology and best teaching practices.

For new technology, we've got our eye on the new Phonak Inspiro touchscreen because of the Omni Directional Mic capabilities that can be utilized with small group discussions (and no mic wires) or a Phonak Pen (although not able to connect to other devices) or table Mics. Small group situations, especially in noise are very challenging for Lily. When there is one other student, they can wear the FM, but with many students, it's a real challenge.  

So much to think about and stay on top of this year but we're ready!  

 

Cochlear Implants before 12 months? Here's a new study showing benefits.

I have long believed that implanting kids before 12 months of age was an important and necessary approach for optimizing long-term speech outcomes.  Lily was implanted 7.8 years ago at the age of 10 months.  We would have done it earlier if the surgeon would have agreed.  

Eight years later, the age of 12 month is still used as a guideline for implantation.  

Here's a new study detailing the benefits of implanting kids before 12 months of age.  

 

 

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!  

 

 

 

Zombie Lily

When a Zombie Walk was held in our town, Lily knew she had to be a part.  Such a fun day for the kids to act like zombies and of course tons of new language opportunities.  

There are no real rules or expectations for what zombies do.  Just look creepy and dead!   Ha!  

Lily's new profession - Forensic Scientist

Lily has long wanted to be an otolaryngologist, teacher, pediatrician, Cochlear Implant designer, Mom and a million other professions, when she grows up.  

However, a new profession, Forensic Scientist, has now entered the mix.  Although Lily has no interest in blood and guts, this new career is closely related to her love of spies and mysteries.  

Zebrafish may reverse deafness in humans

Always interesting to follow the latest research on the study of animal cell growth and how certain animals have regenerative abilities in regards to their hearing and hair cell regeneration.

According to this article, Zebrafish may be the key to understanding and replicating how to regenerate hair cells.  It's just may be what Lily will use some day, to regrow those hair cells in her cochleas.  

Hearing Resources

Three great hearing resources for families with kids with hearing loss.  

Jane Madell - A list of PDFs and videos on a variety of hearing related subjects.  I especially like this video showing how to use an FM in the classroom.

Success for Kids with Hearing Loss - Karen Anderson has a fresh approach and highlights many interesting tools and resources.  As Lily gets older, I'm interested in learning more about Interact-AS a school speech-to-text captioning device.  

American Cochlear Implant Alliance - View materials from their plenary and special sessions at their recent conference.  

 

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.  

 

Breaking out the Harmonies

Over the winter break Lily discovered and announced she wanted to break out her Advanced Bionics Harmony BTEs and wear them at home. We received the Harmonies when Lily was first implanted, but have never activated them, because Lily has always prefered the Body Worns and done extremely well with them.  

The Harmonies give Lily hearing in the middle of her ear with the T-mics and enable her to slip the CIs on quickly in the morning.  Lily says the only difference between the sound of the BTEs and Neptunes is that she can hear herself chewing and her voice is louder.  However, she does not like how they fall off when she is upside down. And she is upside down a lot!  :)   

Lily also decided to change her standard Neptune headpieces from beige to pink to make sure kids at school saw them.  The first day after winter break she said excitedly that everyone asked if she had gotten new CIs for Christmas.  

A few months ago, LIly declared that she never wanted BTEs.  Perhaps now when AB releases a new processor in 2016???, we'll be the first in line.  

 

Lily is reading the blog

My New Year's Resolution is to get back to blogging.  It's important!  

However, nearly all the blogs I have followed for the past 7 1/2 years are either slowing or have died long ago. I miss knowing these kiddos lives from afar!  Certainly Facebook and Instagram have taken their place as a way to share a story.  In addition, the kids have gotten older and there becomes less day to day discussion of the hearing journey.  But I hadn't realized how important continuing to tell our story would be, until Lily recently found her blog books.  

Every few years we've printed out the blog, using Blurb as a book publishing tool.  The books have always sat under the coffee table ready to read.  However during this winter break, Lily has found and devoured them, reading and re-reading each page as if it was the secret to her life's story.  I always wrote with this end in mind, but didn't imagine it would happen when Lily was in the second grade.  

Here's to another year of blogging and total bliss (when you meet Princess Elsa for the first time)!  

 

Listen to Lily's hopes and dreams - Second grade

Though this recording, you can listen to Lily's hopes and dreams, in her own words, as she starts her second grade year.  

Love that her hopes and dreams include inventing a static proof cochlear implant and to become a cochlear implant designer.   Hopefully Advanced Bionics will have a job for her in 20 or so years.  

Not sure if that stint is before or after fashion designer and doctor, which she ususally specifies is a Pediatrician and ENT.   She has plans to practice both specialties, every other day, when she is not teaching or being a Mom. 

My (Lily's) hopes and dreams are….

• To open a lemonade stand
• To make a new friend
• To invent a static proof cochlear implant
• To graduate college
• To get a good job as a doctor
• To make an invention that cleans your room or your house
• To get a four in writing
• To get a job as a fashion designer
• To be a flower girl or a brides maid
• To get a lot of Paw awards in one week
• To invent a new color
• To be in the Guinness Book of World Records
• To go in a haunted house
• To invent a new Ticonderoga Pencil
• To invent a new ride
• To make an amusement park
• To invent a haunted house
• To make a humongous roller coaster in Mindcraft
• To make a mansion in Mindcraft
• To build a new invention to carry kids around without adults pushing
• To make a castle in Mindcraft
• To invent an Ipad or video game
• To invent a new Mindcraft version
• To open a candy shop
• To write a library book
• To teach something new
• To make a new taco
• To have kids
• To invent a new writing tool
• To become a Cochlear Implant designer

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.

Softball and Horseback riding

Lily had a number of new sport experiences this summer including softball and horseback riding.  

In softball, Lily liked hitting the best and was very good at it, but thought fielding was a bit boring.   She likes action.  It was fun to see her progression through the summer.  Fortunately her primary coach was the husband of her first-grade teacher, so I'm sure he'd already received lots of lessons in hearing.  :)

We watched carefully how hearing impacted the game.  Certainly Lily had to watch and listen to the coaches more carefully, and I'm not sure if she could always tell where the ball was hit or caught based on the sound of the bat or ball hitting the gloves.  Such small sounds in such large spaces.   We didn't use the FM for softball, but if this was the pros, we'd definitely consider it.

Horseback riding was a a wonderful experience as well.   Lily was ready to be "unleashed" on day two, although the teachers had other ideas.  The riding was slow and gentle, with lots of confidence building time.  While the farm was fairly quiet, it was challenging for me to educate the young teachers on the fly.  

On the last day, one of the Moms of the other students came over to me and said I see Lily has Cochlear Implants.  Instantly I wondered what her connection with the "hearing" world was.   She pulled her hair back and said, "I have one too.  I was implanted after college and have had it about 15 years."  While I was amazed, Lily thought it was only mildly interesting.  Having CIs doesn't seem that unusual to her.  

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.  

Seventh Birthday - A Frozen celebration

Lily celebrated her seventh birthday in June.  

Of course Frozen had to be the theme at both her kid and family party.   During the kid party, which was held at a local theater, Lily was able to live her dream of performing as Princess Elsa in a reinactment of "Let it Go."  It was quite a show!

We're blessed to be surrounded by so many family and friends.

Lily and her lilies

We've got lilies planted all around the house.  Here are some hardy Canadian lilies that grow five to six feet tall.  Ahhhhhh summer.

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. 

 

 

 

Destination Imagination Club

I just finished co-coaching a Destination Imagination group for Lily's school.   Our club contained nine first through third graders and we met each week to focus on Science, Technology, Engineering, Math and Art themes.  

Because this was the first year of the parent-led program, there was lot of experiementing and educating the adults, but overall it was a tremendous experience.  We explored issues of water, verhicles and transportation, communities, insects and spiders, space and animals.  

We discovered that these kids had limitless energy, imagination and creativity.   Hopefully Destination Imagination is one tool that can help to nuture and encourage this type of thinking for many years to come.  

 

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. 

Bilateral vs Unilateral CIs in Children

Interesting study from Ear and Hearing of Spoken Language Outcomes in children with unilateral versus bilateral cochlear implants.  

Children with bilateral CIs achieved significantly better vocabulary outcomes, and 8-year-old children with bilateral CIs had significantly better language outcomes than did children with unilateral CIs....The outcomes were also significantly predicted by a number of factors related to parenting, child characteristics, and family background.

When Lily was implanted six years ago, the big debate was one or two implants.  Our sense was that she had two ears, so she should have two implants right away.  There was very little research about the benefits of two implants at the time. Many families were debating about "saving one ear for future technology."  I don't hear that phrase today.  Two implants seem like a standard practice. 

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.

 

Bonding time

Reading is a great bonding time for these two, as is playing doctor.  Bodie feels just fine, but he's doing a great job acting like the patient, even with his heart monitor taped to the couch.  Lily is certain she wants to be a pediatrician so she must practice any chance she gets.  I'm still searching for a stethescope that she can plug into her CIs and actually hear a heart beat. 

 

Lily's U Rock Valentines

 

 

 

 

 

 

 

 

 

With a no candy requirement, Lily created wonderful "U Rock" valentines for her classmates. Each rock was custom painted.  Such a fun way to celebrate Valentines day.  

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?

Early Cochlear Implant Switch-On

Interesting research summary on the Safety and Functional Results of Early Cochlear Implant Switch-On in Children.   That means instead of waiting for four weeks before they switched the implant on, they only waited for one week.   Even five years ago, Lily's implant center only waited 10 days.  

"This is the first study investigating the safety and the effects of an early cochlear implant switch-on in children. Results show that such a procedure is well tolerated by pediatric subjects and free from complications. Impedance measurements suggest that the earlier switched-on subjects benefit of lower and more stable impedances than subjects undergoing 1-month switch-on."

 

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.

Cecilia - A little girl who changed our lives

The night before Lily's implantation we watched a marketing video from Advanced Bionics about a little girl named Cecilia who received a cochlear implant around the age of two.   She was independent, confident, talking, seemed really smart and had great parents.  We loved her and always wondered what happened to Cecilia?  This was a little girl who helped us believe Lily's CIs were going to work. 

I had an update a few years ago from Mary Koch, her therapist in the video, and then tonight I stumbled upon this jewel.  An update video.  Today Cecilia is at the top of her class and an accomplished athlete.  She's getting ready for college.  Celilia said she couldn't imagine a life without sound.  What a great way to end the day. 

Check out the Alfred Mann Foundation (http://aemf.org/)  and scroll to the bottom of the first page for the video.

Lily's quoted in the newspaper

Reading the morning paper, I saw a story about Lily's elementary school and a new local food program.  Half way through the article I read, "First-grader Lily sat in the elementary lunchroom, bit into the day's barbecue-coated lesson and summed up her experience with a single word:  Delicious."   The reporter was directed to Lily because the Vice Principal knew Lily would have something positive to say.  HA!  

Lily now thinks she is famous and wonders when Bodie will be the newspaper.   Just another amazing day!

Lily's shadow/brother

Being Lily's brother/shadow has its good times and bad.  Mostly good.  We already have Bodie swimming and he has taken to it incredibly quick.  No fear, just floating on his back. Lily stands ready during the lesson to assist with high fives and waving under the water.  

Last week, I also found Bodie perched next to Lily eating an after school snack and devouring a book.    I think Bodie already has that love of reading like Lily does.   While Lily doesn't read 10 books a day anymore, we try to encourage her to read at least one book or an hour of reading each day to build her language skills.   When not nestled up to Lily, Bodie's favorite spot to read is on Grandpa's lap.  They cover such favorites as The Fire Truck book, Tiny Hands and Max and Ruby.