Life is Bliss - Lily's Cochlear Implant Journey

Lily's Soccer Experience

Feeling like champions, Lily's soccer team wrapped up the season last week.  

It was a great experience, but also a challenge for Lily.   She enjoyed the running and kicking, but probably preferred cheering with her teammates just as much.  It's amazing how at this age some kids have incredible speed and ball agility already.  

We had the coach wear the FM during the practice and the game.  Most of the time he was across the field shouting or his back was turned when trying to communicate.   The FM made a huge difference in helping Lily to get an idea of what he wanted them to do.  Overall great experience.  

Experiences hearing on the Prairie

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

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

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

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

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

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

What was I so worried about?

Advanced Bionics ClearVoice Report - The Car

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

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

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

Swimming Lessons with Advanced Bionics Neptunes - A whole new experience

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

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

 

 

4 years ago - Hearing Birthday

Lily just celebrated her four year hearing birthday with a Spider-man coloring book.  Hard to believe.  We couldn't be happier with her progress.  She's more than ready for Kindergarten.  

She's also loving having a little brother and he's pretty pleased with her too.

AB Neptunes and running through the sprinkler

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

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

Airplane Pilot or Flight Attendant - Decisions

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

Cochlear Implant Help - New information resource

Great new information resource on Cochlear Implants - Cochlearimplanthelp.com

 

 

ClearVoice and T-Comm - Advanced Bionics Cochlear Implant Innovations

ClearVoice

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

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

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

T-Comm

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

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

 

Observation Report of Lily at Preschool

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

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

FM classroom simulation for kids with hearing loss - Video

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

 

Another advantage of AB's Neptunes - Hula hooping

There is another little known advantage to Lily's Advanced Bionics Neptunes...the ability to Hula hoop.

With Lily's body worns, the hulahoop would clank into the processors each time it would go around.  The hula hoop would also have to be above or below the processors to work effectively.   Now with her new Neptunes, you can see Lily's hula hooping has improved greatly.  The processors are small and streamlined and sit much better on her waist.  

Let the hula hooping commence!

 

Lily starts micro soccer

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

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

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

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

Advanced Bionics Neptune Cochlear Implants - The Headpiece - Another benefit

Another benefit of the Neptunes are the streamlined headpieces.  Today we were finally able to get a helmet on Lily's head that didn't instantly knock off her headpieces.   We still have a few adjustment to make, but overall it is a huge improvement.  Lily hasn't even ridden her bike because of the helmet issue.  

Since spring/summer has come early, I have a feeling she'll be putting a lot of miles on her bike thanks to her new Neptunes.

 

 

Advanced Bionics Neptune Cochlear Implants - Programming - The beeping has stopped

Lily has excellent audiologists who make mapping her Cochlear Implants a breeze.  

The only big change we made in the conversion from BWP to Neptunes was turning off the audible alarm. Lily is a very good reporter when her CIs are off or not working.  So when she mentioned that she was irritated with one of her little friends always telling her that her CIs were beeping, we felt comfortable turning off the sound. 

The beeping has been a major part of our CI experience and we recommend it highly for little ones. In the early days, I thought the beeping would drive us crazy, but it turned out that the beeping was a huge help in keeping the CIs on at all times   

 

 

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

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

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

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

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

 

Advanced Bionics Launches ClearVoice in the US

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

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

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

Advanced Bionics Neptune Cochlear Implants - A Dream Come True!

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

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

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

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

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

 

  

  

 

 

 

Internet Therapy Offered to Nebraska Children with Hearing Loss

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

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

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

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

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

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

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

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

 

 

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

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

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

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

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

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

Slides, gardening in the rain and Neptunes

Spring is officially here with the arrival of robins, daffodils, trips to the park and gardening in the rain.  

The weekend started with a trip to the park.  The picture below is of Lily's favorite slide.  It is actually the favored slide by most kids, but Lily loves it because it is metai.  This slide means not having to hesitate, because metal slides aren't covered in static and won't hurt her CIs as she sails down them.   Total piece of mind for Mom! Love our park.

The weekend ended with a little gardening in the rain.  My helper did a lot of playing/clean up as the drizzle came down.  I was very apprehensive about letting her stay outside too long because her CIs can't get wet.  

Next week, however, we will be looking for rain to stand in and puddles to jump in.  Why? Because next week, Lily gets her new AB waterproof Neptune CIs.   Woooo Hoooo!  To say we are excited is an understatement.  

Prepare for many posts about this life changing technology.  Prepare for endless pictures of Lily swimming and in the bathtub.   Prepare for lots of gushing about hearing in the water with a smaller cooler processor with much better batteries and headpieces and software capabilities and wearing options and ......tears!

 

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.    

Global Moms share advice only CI Moms will understand

The following is a wonderful response to a post on a forum I read from a Mom on the other side of the world to a Mom in the U.S. (This is used with permission)  The response came after the Mom in the U.S. was so hurt after showing her friend the new Cochlear Implant her daughter would soon be receiving.  The friend thought it was disgusting and awkward and said she wouldn't get that for her child.  

My son is 6 yrs old and had his implant 4 year ago.  We are Egyptians.  It is much worse here tolerance-wise.  Disability is not just a thing that gets silly remarks and looks of pity or disgust, it is something that people feel ashamed of and tend to hide, something that is simply not tolerated.  

We are doing well.   My son is the happiest boy I've ever known.  He's smart, funny, happy and naughty in so many ways, and I will choose him one million times without thinking. I'm proud of him and I would go all the way to give him the best I can afford.  That is the kind of thing I say to myself every time I'm faced with a look that I don't like or a word that makes me unhappy.   That is what you should tell yourself.    

For that lady friend of yours, well, my first response was to hate her, then I realized that she is simply ignorant as you described her. What does she know?   She wasn't lucky enough to have a girl like yours or a boy like mine.  See, for people with "ordinary" kids, they get happy for the first few week of their kid's babbling.   The first word is celebrated like crazy.  Second word the flame is less.  Third word is celebrated just by clapping, then a smile.  Then the whole thing becomes routine, an every day event.  

For you, WOW, it will be different.  Every new word is a party time.   When she starts putting two words together you feel tall and strong.  When her sentence is a three word phrase you feel like you can do anything you set your mind on, and when she starts repeating a nursery rhyme, you know that she can do whatever she sets her mind to. You feel her strength.  

And I won't start talking about your feelings when she starts learning a second language, or that smile you will have a hard fight to hide when she says a "bad word" or the debates that you wish would never end. So many moments I don't think there is an end to it.  

My friend, you'll have so much fun, you'll forget all the hard days and the doctor visits and the long hours of speech therapy and the appointments and the expensive spare parts.   All you need is the trust that you and your daughter are "doing well".  As for that lady, just let it go.  You can't afford any negative energy.   You need all the positive energy you can have and you won't have time for her.  Have fun.   Sure you will.

Nature Preschool - Bones

This is what happens when you send your kid to Nature Preschool. Lily brings an Owl Pellet home and wants to dissect it so she can match the rodent, shrew, mole and bird bones to the body part chart.  

When I expressed how disgusting this was, Lily replied that "they are just bones that the Owl didn't want." The only way I got through this was convincing myself that it was a language exercise.  Maybe Lily really will be a doctor and specialize in Orthopedics, although she is still certain she wants to be a mom or kid doctor.  

In other news, brother Bodie is growing, smiling, batting at toys, eating and sleeping.  Lily is very proud to be a big sister.  She expresses her love daily with lots of kisses and hugs.  Today she told me that "both kids get lots of attention."  The jealousy may have subsided a little.  We listen to Bodie's voice and already hear changes from grunts to vocal play.  

When Lily was eight weeks old, she already had hearing aids and we had made numerous trips to Boystown for hearing tests.  While nursing, I would listen to the feedback from the hearing aids, as they rested against my arm.  It reminded me of the sound my grandma made 30 years earlier.  I feel for the new parents who have to go through it.  

When I nurse Bodie now, I have moments when I think I just knocked off his CIs (although he doesn't have any).    Such a different experience the second time with a hearing child, although the basics are the same.  I didn't have a vision for the future for Lily at that time, but now I do.  Anything is possible.  

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. 

Recycled Christmas tree “Farm” encourages imaginative preschool interactions

(The following cute interaction was originally published in Lily's preschool newsletter by her teacher Suzan Haley. Preschool provides such great language opportunities and social interaction with peers.)

Lily pretended to buy a Christmas tree and asked for help getting it home. Sophie S. counted “1, 2, 3, 4 Christmas trees!” Niall tried to help Lily move the tree by grasping it by the trunk and pulling. The tree was so heavy that Addilyn pitched in to help too. The children worked together to move the tree close to the fence.

Lily said,“Hey guys, I need help standing this up.”

Sophie J. and Addilyn worked together to help Lily stand the tree up and lean it against the fence. The tree began to fall, so Lily asked Mrs. Haley to hold it up while she went to get a large rectangular block of wood to place near the base of the trunk. After positioning it, she went to find another block. She placed it near the trunk and said,“I think it’s going to stay.”

Mrs. Haley let go of the tree, but it leaned to the side. Lily and her friends continued to place blocks around the base of the tree until it stood without being held.

Sophie J. said,“Now we have to fix some more trees....and that one.”

Niall and Lily began moving another tree. Sophie J. asked for more helpers. Addilyn began to call for children from other areas of the NEC to come and help.

Sophie J. said,“We have to do teamwork.”

Lily selected another tree and rolled it down the hill. As Max walked through the area, Lily said, “We need help.We’re trying to get it up for the Christmas tree farm.”

Max replied,“I’ll help you”.

Lily directed as the children continued moving and placing trees along the fence. Addilyn and Lily placed wood pieces around the trunks while Niall added leaves and straw.

Lily said,“We’re trying to get all the trees up for all the people.”

The children successfully placed and supported four Christmas trees before leaving the area to go back inside. 

 

 

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.

 

 

New cochlear Implant being developed in India

The Hindustan Times, India - February 5, 2012
Editors note: 1 lakh = $US 2,057
-----------------
DRDO develops low cost hearing device

The DRDO has developed an affordable cochlear implant which can help millions of deaf people to hear again...In India, there are nearly one million people who need cochlear implants. Every year 9-10 thousand deaf children are born...The imported cochlear implant is very expensive, priced at Rs 7-10 lakh. The indigenously developed cochlear implant will cost a just around Rs One Lakh.

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. 

AB's Neptune Cochlear Implant Approved - WoooHoooo!!!

To say we're excited about Advanced Bionics's Neptune Cochlear Implant being approved by the FDA is an understatement!!!  Now how fast can Lily get one and get in the bathtub or the pool or the beach or get the next greatest thing - ClearVoice?  Let the the countdown begin. 

Advanced Bionics is thrilled to announce that the NEPTUNE™ sound processor has received FDA approval in the United States. Now AB recipients and candidates have the choice of a Neptune or Harmony sound processor for hearing their best with AB.

World’s First Waterproof Sound Processor
AB continues our history of innovation leadership with Neptune, the first and only SWIMMABLE sound processor in the world. Whether you or your child enjoy taking a dip in the pool on a warm day or bonding at baby bath time, Neptune delivers hearing during those important moments.
 
Industry’s First Freestyle Design
The lightweight Neptune processor features the industry’s first freestyle™ design, allowing you or your child to hear the world with the comfort and beauty of nothing on the ear. Neptune gives you the freedom to choose your wearing style—in your hair, on your arm, under your collar, or in your pocket—without compromising performance. Whether you want to show it off or tuck it away discreetly, the freestyle design lets you wear it just how you like.
 
Usability and Durability
Built Kid Tough™ for rugged use, Neptune is ideal for every age and every lifestyle whether you live in a humid area, love to swim, enjoy sports, connect in the classroom, or travel across the globe. Neptune carries an IP68 rating that offers maximum protection against solid particles and various forms of moisture, which means that you can hear your best in all weather, all sports, and all terrain.
 
Performance
To ensure you hear your best all of the time, Neptune is compatible with the industry’s most advanced hearing technology for the best possible hearing performance, including ClearVoice™, HiRes Fidelity 120™, and AutoSound™.

For more information

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.  

Apps - An Emerging Tool for SLPs

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

What Parents Want from Physicians

Excellent article on "What Parents Want from Physicians" after their child has been identified with hearing loss.  

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

Founder of Advanced Bionics - Al Mann

Interesting article about the founder of Advanced Bionics, Al Mann, who eventually sold the company twice. Once to Boston Scientific (then took it back) and most recently to Sonova for approximately $500 million.   

Making friends and comments from strangers

At the zoo last week, we ended up touring/playing with a lovely family who had a four-year old boy.  Lily and this little boy became fast friends.  The Mom never asked me what the things on Lily's head were, but instead kept saying that Lily now had an admirer and that she thought Lily may be "class president or maybe president someday because she made friends so easily."

Typically comments from strangers are a little odd.  This one was just perfect.  Thank you. You made my day.