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Jace Wolfe: Programming Cochlear Implants (Core Clincal Concepts in
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January 10, 2016
CIs in Noise: SNR loss
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)
entences, 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
Bilateral CI’s
17 dB
12 dB
11.5 dB
An individual with normal hearing sensitivity would be expected to
core 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
cored 50% correct and -2.5 dB.
Lily's Mom at 05:08 PM | Permalink | Comments (0)
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October 16, 2015
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.
Lily's Mom at 08:57 PM | Permalink | Comments (0)
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September 30, 2015
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!
IMG_8897
Lily's Mom at 06:53 AM | Permalink | Comments (0)
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August 21, 2015
IEP Goal for Third Grade and Lily update
Lily's just finished her second week of third grade.  It's hard to
believe.  When she was born the days were so long.  Now the days fly by
and Lily is growing into a "pre-teen." She's continues to be at the top
of her class and gets to sit next to her best friend. Lily loves
reading and she pours through books as fast as we can check them out.
She is still doing gymnastics and will be starting Girl Scouts and
Destination Imagination soon.
Here's Lily's new big IEP goal that covers many topics.
Goal:  During discussion of challenging listening or social situations,
Lily will use problem solving steps to increase her independence from a
baseline of 6 points to 15 points out of 16 point rubric on
elf-advocacy rubric.
This year, Lily has a new hearing resource teacher who I think will be
great.  Lots of energy, passion and high expectations for kids with
hearing loss.  She will check in with Lily for 20 mins a week (3x per
month), either in or out of the classroom.
Lily's new third grade teacher seems terrific.  She's expressed her
openness to learn/collaborate about hearing and said Lily has been
helping her remember the FM and captions.  She is also pregnant, so
hopefully will put all the supports in place with a substitute when
he's gone.  All great things. Both teachers have indicated things are
going well.
Lily continues to wear an FM and her school classrooms all use sound
fields.  We are also experimenting with a Dynamic, connected to the
ound field, inside the classroom and the lunchroom.
Other issues we identified on the IEP that continue to be a focus:
topic, one person talking at a time, clarification strategies
consistently
greetings, developing best friends)
ocial situations
trying to hear better.
Another area we have started to focus on is CC or closed captions. When
dealing with videos or TV, captions  help significantly in
understanding the content and have helped Lily to become a super
reader.  Captions move fast and so your reading practice and speed have
to match.  They fill in all those words you didn't even know you
missed.
This week when Lily's teacher turned on a Kahn Academy video in the
classroom, the captions were in Czech.  Eventually we figured out how
to translate them back into English.
It's all such amazing technology.  We just have to stay on top of the
various components to make sure they are working seamlessly.
Lily's Mom at 09:20 AM | Permalink | Comments (0)
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January 25, 2015
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
ubjects.  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
peech-to-text captioning device.
American Cochlear Implant Alliance - View materials from their plenary
and special sessions at their recent conference.
Lily's Mom at 02:36 PM | Permalink | Comments (0)
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January 13, 2015
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.
IMG_5165
IMG_6090
Lily's Mom at 06:54 AM | Permalink | Comments (0)
/1wTZ2TP&text=Flower Girl Experience&count=horizontal
January 12, 2015
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.
Lily's Mom at 06:38 AM | Permalink | Comments (0)
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Noise&count=horizontal
January 11, 2015
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
ays the only difference between the sound of the BTEs and Neptunes is
that she can hear herself chewing and her voice is louder.  However,
he 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's Mom at 03:36 PM | Permalink | Comments (0)
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October 09, 2014
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….
pushing
Lily's Mom at 11:25 PM | Permalink | Comments (0)
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August 31, 2014
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
hould 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.
Lily's Mom at 05:25 PM | Permalink | Comments (0)
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August 29, 2014
Softball and Horseback riding
Lily had a number of new sport experiences this summer including
oftball 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
ee 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
he could always tell where the ball was hit or caught based on the
ound 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.
Photo 2
IMG_4957
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.
Lily's Mom at 01:44 PM | Permalink | Comments (0)
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August 26, 2014
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!
IMG_5147
Lily's Mom at 06:30 AM | Permalink | Comments (0)
/1pBR2XM&text=Reading upside-down&count=horizontal
August 25, 2014
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
uccess that this may have been her exposure to kids with CIs.
IMG_5120
Lily's Mom at 09:38 AM | Permalink | Comments (0)
/1olaanB&text=Second Grade&count=horizontal
July 16, 2014
Video - School Poetry performance
Lily reads her poem about bubbles during a first-grade poetry
celebration.
IFRAME: //www.youtube.com/embed/c74STtp92h8
Lily's Mom at 06:46 AM | Permalink | Comments (0)
/1wulZMQ&text=Video - School Poetry performance&count=horizontal
July 15, 2014
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.
IMG_4867
Lily's Mom at 06:35 AM | Permalink | Comments (0)
/W6yFi0&text=Hearing Research - Lily's contribution&count=horizontal
July 14, 2014
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!
IMG_4934
Lily's Mom at 11:35 AM | Permalink | Comments (0)
/W43nIG&text=#HearIam Phonak contest&count=horizontal
June 23, 2014
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.
Lily's Mom at 11:30 PM | Permalink | Comments (0)
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May 21, 2014
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.
IMG_4518
Lily's Mom at 06:17 AM | Permalink | Comments (0)
/1oRqOQW&text=Huskers' Spring Game&count=horizontal
May 19, 2014
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
unsets 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.
IMG_3931 IMG_3931
IMG_3931
Lily's Mom at 06:18 AM | Permalink | Comments (0)
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May 18, 2014
Metal Slide Journey
Lily slide
Metal slide
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
lide 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.
Lily's Mom at 04:14 PM | Permalink | Comments (0)
/1nX2Cg2&text=Metal Slide Journey&count=horizontal
April 14, 2014
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.
IFRAME: //www.youtube.com/embed/HdlYB9voeMQ?rel=0
Lily's Mom at 10:42 PM | Permalink | Comments (0)
/1t32ewX&text=Dale Sindell at TEDxCibeles &count=horizontal
April 06, 2014
Science Fair: Social Contagion
LIly's second elementary science fair experience was a success.  She
tudied 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.
IMG_3169
Lily's Mom at 06:12 PM | Permalink | Comments (0)
/1hvX7vT&text=Science Fair: Social Contagion&count=horizontal
February 25, 2014
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.
Lily's Mom at 11:27 PM | Permalink | Comments (0)
/1hR8Mft&text=Bilateral vs Unilateral CIs in Children&count=horizontal
February 19, 2014
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?
Image 1
Lily's Mom at 09:16 PM | Permalink | Comments (0)
/MCjvwl&text=Do chickens hold the key for hearing loss
&count=horizontal
February 10, 2014
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
witched-on subjects benefit of lower and more stable impedances than
ubjects undergoing 1-month switch-on."
Lily's Mom at 06:50 AM | Permalink | Comments (0)
/1h3BrO1&text=Early Cochlear Implant Switch-On &count=horizontal
February 09, 2014
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.
Lily's Mom at 08:24 PM | Permalink | Comments (0)
/M3s3fe&text=Cochlear Implant with no external
hardware&count=horizontal
January 31, 2014
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 Mom at 06:12 AM | Permalink | Comments (2)
/1cCgFkA&text=Cecilia - A little girl who changed our
lives&count=horizontal
January 30, 2014
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 Mom at 06:26 AM | Permalink | Comments (0)
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January 16, 2014
Gene therapy to improve cochlear implants?
Facinating article on new research that has investigated the
possibility of using gene therapy to prevent the death of nerve cells
in the inner ear in people with certain types of progressive hearing
loss.
Lily's Mom at 03:07 PM | Permalink | Comments (0)
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implants?&count=horizontal
January 14, 2014
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.
http://news.yahoo.com/video/life-changing-ear-operation-helps-230943724
.html?format=embed&player_autoplay=false
Lily's Mom at 06:29 AM | Permalink | Comments (0)
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coverage&count=horizontal
January 12, 2014
CI Wear Shirts
Love the innovation of the family who created CIWear, an active wear
hirt 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!
Lily's Mom at 10:47 PM | Permalink | Comments (1)
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December 30, 2013
Little Free Libraries
Over the holiday break we've hit a few of Lincoln's newest Little Free
Libraries, a library craze happening all over the country. Their theme
is "Take a book, leave a book."
It was quite an adventure finding the libraries, discovering what was
inside and then convincing Lily it was alright to take a book at each
top. She had them all read by the next day so we'll have to make
another journey to return a few books in their place.
By January 2014, thre are supposed to be 10,000 Little Free Libraries
all over the country.
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Lily's Mom at 11:11 PM | Permalink | Comments (0)
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December 26, 2013
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.
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Lily's Mom at 06:33 AM | Permalink | Comments (0)
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December 25, 2013
Merry Christmas from Lily's family
Merry Christmas to all our blog readers.  We hope the information and
inspiration we provide on this blog is helpful to you. We've loved
hearing from people around the world about their own hearing journeys.
It's certainly been a fun five plus years of documenting Lily's hearing
journey and beyond.  Someday Lily will read this and be able see the
journey she helped so many take with her.
Life today is bliss.
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Lily's Mom at 06:50 AM | Permalink | Comments (3)
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December 24, 2013
Lily's Card Shop
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Sharing a entrepreneurial spirit with her Dad, Lily describes her card
hop.
IFRAME: //www.youtube.com/embed/YQ8xBvRJzjc?rel=0
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December 23, 2013
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!
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Lily's Mom at 06:25 AM | Permalink | Comments (1)
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December 22, 2013
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.OYD
ThTLM.dpuf
Lily's Mom at 06:47 AM | Permalink | Comments (0)
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December 20, 2013
Genetics of Auditory Disorders
Very interesting and descriptive article on the Genetics of Auditory
Disorders
Lily's Mom at 10:47 PM | Permalink | Comments (0)
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December 03, 2013
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.
Lily's Mom at 06:39 AM | Permalink | Comments (0)
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December 02, 2013
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.
Lily's Mom at 06:19 AM | Permalink | Comments (0)
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November 30, 2013
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.
Lily's Mom at 09:53 PM | Permalink | Comments (0)
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Loss&count=horizontal
November 06, 2013
Study: Hearing preservation
Interesting study on Hearing preservation for Cochlear Implant
outcomes.
http://www.audiologyonline.com/articles/effects-hearing-preservation-fo
r-cochlear-12078
Lily's Mom at 06:31 AM | Permalink | Comments (0)
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November 05, 2013
New device helps understand how brain processes info from a CI
A new imaging device was launched on campus today, helping researchers
in the ARC Centre of Excellence in Cognition and its Disorders (CCD)
and HEARing Cooperative Research Centre (CRC) better understand how the
human brain processes information from a cochlear implant.
For the first time, scientists can use a well-established brain imaging
technique called MEG, or magnetoencephalography, to measure brain
function in recipients of cochlear implants, including young children.
The new device overcomes the electromagnetic restrictions of cochlear
implants, enabling researchers to gain valuable insight into this
established and effective solution for people with hearing loss.
More
Lily's Mom at 06:16 AM | Permalink | Comments (0)
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November 03, 2013
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
even-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
kill at listening and spoken language, something we've focused hard on
ince 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
entences already.  He probably knows more than 500 words.   At the the
ame 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
aid the girls would make it very clear if they didn't want her
daughter there.  I think that was pretty good advice. :)
Lily's Mom at 09:47 PM | Permalink | Comments (0)
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September 12, 2013
Cochlear Implant history and pioneers
The 2013 Lasker~DeBakey Clinical Medical Research Award honors three
cientists 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.
Lily's Mom at 06:04 AM | Permalink | Comments (0)
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September 11, 2013
Class presentation on cochlear implants and other fun stuff
Lily and I have now given two presentations on hearing and cochlear
implants at her school.  The first was a presentation to her own
class.  We started by asking if there was anything different about
Lily.  One child said she had braids in her hair.  Then another one
aid she had strings on her back.  Love it.  Lily answered all their
questions, showed off her Buddy/Melody and American Girl Doll with CIs,
and tried to act out each point we made about Dos/Don'ts, FMs and how
her CIs worked.  The kids were most interested in the FM and radio
waves, as well as the stuffed animals.
Then one day after school a third grade teacher, who was instructing
her class about sound, asked if we could come talk about Cochlear
Implants and hearing.  Her class had read a small piece about cochlear
implants in their textbook and they were very interested in the
ubject.
This presentation was a little more complex with descriptions of the
ear, why people have different types of hearing, how a CI works and
then questions.  Every child had their hand in the air and they asked
dozens and dozens of terrific questions until the bell rang.  They all
aid that they had tubes or an ear infection at one point, so they
could understand when someone was not hearing as well.  A very
compassionate bunch.   Their questions ranged from how does a CI work
to what happens if someone can't pay for an implant.
We tried to inspire the students to become scientists, engineers or
inventors that helped people.  At the end of the presentation, Lily had
taken her headpieces off to "demonstrate" so many times, that her
batteries died.  I'd left my purse in the car, which always has
batteries in it, and Lily had left her backpack down the hall, which
also has batteries in it.
So....in a small panic...I looked around and saw remote controls in
front of me.  I began to open them up and in the second remote I found
a AAA battery.  I took it out, put it in Lily's CIs and crossed my
fingers that it had enough power.  It worked.  The third graders
cheered and clapped and thought it was very cool. The teacher said Lily
may now have a third grade "fan club."  LIly was perplexed by the
comment, but soon was thrilled by the idea.  Always a language
opportunity.
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Lily's Mom at 06:43 AM | Permalink | Comments (0)
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tuff&count=horizontal
September 10, 2013
The Spa Experience
Lily has been begging and pleading with me to get a "facial" ever since
he read the sign "now offering facials" at the local nail place.  The
power of reading (and definitely more trouble for Mom and Dad).
We're not sure about how her spa obsession happened months ago.  We
certainly don't visit many spas, but Lily has turned one of our
bathrooms into her "spa."  No one is to move any of the "spa
accessories" which include cups, soaps, tooth brushes, lotions, hair
brushes, curlers, pillows, hand towels, etc.
Finally after weeks of stalling, I took Lily for a "junior facial" as
he named it.  I struck a deal with the facial lady and she did a
modified facial that her daughters love.   I felt a little bit
ridiculous taking a six year old for a facial, but I have to say it was
fabulous.   There was warm steam, massage, lotions, exfoliation,
rotating brushes, and soothing music.  Again, a language experience.
:)  Lily did not move for 15 minutes.  I kept making sure she was
breathing.  She loved it!
The lady suggested I play soothing music for Lily to help her fall
asleep. We didn't even go there or explain what Lily's CIs were.  And
we skipped the head massage.  When it was my turn, Lily watched very
carefully so she could learn how to provide this service in her own
pa.
This evening she gave Bodie her "signature facial."  Good thing he is
an easy going kid.
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Lily's Mom at 06:22 AM | Permalink | Comments (0)
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September 03, 2013
Advanced Bionics releases new Naida CI, electrode and HiRes Optima
Advanced Bionics has just introduced the Naída CI Q70 (Naída CI)
processor, HiFocus™ Mid-Scala electrode, and HiRes™ Optima Sound
Processing.
With Naída CI, AB brings performance and wireless connectivity and now
cochlear implant recipients have access to the combined technologies of
AB & Phonak.
Benefits of new Naida CI:
• 55% improvement in speech understanding in noise when AB ClearVoice™*
and Phonak UltraZoom features are used together
• 100% wireless connectivity—streaming from consumer electronics by
leading brands, including Apple, Samsung, and Nokia
• All-new Binaural VoiceStream Technology™ designed for improved
hearing in noise
• Bimodal streaming—media can be streamed to a compatible Phonak
hearing aid and a Naída CI sound processor at the same time!
• 40% smaller than the previous behind-the-ear sound
processor—incredibly lightweight for barely noticeable on and off-ear
comfort
• First-ever bilateral feature for easy use and peace of mind—each
processor can be programmed for both ears so the best ear can still
hear if a second processor is misplaced
• Compatibility with AB performance innovations, including ClearVoice,
AutoSound™, HiRes Fidelity 120™*, and HiRes Optima Sound Processing
• All-new, discreet T-Mic™ 2 microphone
In addition to the Naida CI Q70 Advanced Bionics has also recently
received approval for the HiFocus Mid-Scala Electrode (designed to
protect the delicate structures of the cochlea) and for HiRes Optima
Sound Processing (which offers optimized battery life)!
We are definitely going to get the HiRes Optima soon for Lily's
Neptunes.  It's another trip to the audiologist, but well worth such an
increase in battery life.
Currently, Lily's batteries will die around 4pm.  She is starting
extracurricular Spanish class this week that, you guessed it, ends
around 4pm. So what should I do?  Go to school and change the batteries
between school and class?  Ask the teacher to do it?  Or get this HiRes
Optima ASAP.
We'll also be investigating the Naida CI which looks exciting, although
we love her Neptunes.  Lots of exciting new options to think about.
Lily's Mom at 06:11 AM | Permalink | Comments (0)
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HiRes Optima&count=horizontal
September 01, 2013
CI Toolkit for parents and teachers
Recently I received The Cochlear Implant School Toolkit which was
funded by a Small Business Innovation Research Grant from the National
Insitute on Deafness and other Communication Disorders for review.
Included in the toolkit were:
children’s schools, and themselves for their children’s entries
into mainstream classrooms
create peer acceptance and to smooth the integration of children
with cochlear implants into mainstream classrooms
teachers, and children
examples for teaching a student with a cochlear implant, tips for
creating an inclusive classroom, suggestions for classroom
modifications, and testimonials from parents and teachers who have
been through the mainstreaming process with a child with a cochlear
implant.
All of the pieces are well done and an impressive advisory panel guided
the toolkit's development.
The research-based teacher's toolkit should be standard reading for
each teacher that has a child with a cochlear implant.  The guide has
been espeically useful for Lily's school.  Lily's teacher is very
willing and open to learning everything and anything we provide to
her.   It includes basics information such as learning about CIs and
hearing loss, working as part of a TEAM, understanding challenges,
etting up a classroom and refining and reporting your progress.  It is
easy and quick to read while providing tons of resource materials.
The company that developed this toolkit is also working on The Cochlear
Implant University which will support high school and college students
with cochlear implants and their parents as the student transitions to
higher education.
The toolkit is a must read for all famlies and teachers who work with
kids with Cochlear Implants.
Lily's Mom at 10:10 PM | Permalink | Comments (0)
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August 01, 2013
Cochlear Implant Balance Research Study
We've participated in various cochlear implant research studies over
the past five years because we feel it's important to give back and
help advance the field.
Last week, Lily was in a balance study at Boystown that was trying to
determine if there was a connection between cochlear implantation and
balance issues.  The researchers asked Lily to walk, hop, stand on a
balance board, spin around in the dark, do eye tests while shaking her
head and twist her head for some kind of nerve measurement.
We learned that Lily had great balance and eye sight.  The physical
therapist said that knowing she reads really well and can ride a bike
without training wheels also indicates that there are no balance
issues. All in a days work!
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Lily's Mom at 06:09 AM | Permalink | Comments (1)
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