Life is Bliss - Lily's Cochlear Implant Journey

Our daughter Lily Bliss was born in June 2007 with profound hearing loss. At 10 months old, she became one of the youngest in Nebraska to receive bilateral cochlear implants. This blog is the story of our hearing journey and the proof that Life really is Bliss.

Lily talking about the monkey bars

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

Lily talks about learning to ride a bike

At age 5, Lily's training wheels have come off and she is riding independently.  Here's an interview with Lily about how she learned to ride. 

Almost done with Kindergarten

A field trip to the park.  How is Kindergarten almost over?  

Hearing is all about the brain

Good article on How the brain processes auditory signals.  It's not that easy.  

Phonak's new Roger

Exciting new update by Phonak with Roger. 

"a new digital standard that bridges the understanding gap, in noise and over distance, by wirelessly transmitting the speaker's voice directly to the listener. Available for the education market beginning Summer 2013, Roger is designed to surpass today's Dynamic FM and equivalent digital systems."

Check out The Hearing Review for more information

More at Phonak

Oberkotter Foundation establishes new national center for professional learning in LSL

Oberkotter Foundation plans to establish a new national center for professional learning in listening and spoken language. It will be launched in spring of 2015. 

This is such a needed resource to support professionals teaching children with hearing loss.  It can't come soon enough. 

EHDI Resource Guide

Extensive free Resource Guide for Early Hearing Detection and Intervention from the National Center for Hearing Assessment and Management at Utah State University. 

Amplify - New Parent Group

We recently formed a new group in Lincoln for Parents of Children with Hearing Loss, better known as Amplify.

Amplify's goals are to support families through their children's hearing journeys, collaborate on important issues related to hearing loss, as well as welcome new families.   As a parent-driven group we share information, answer questions, focus on local issues, and brag about our children. 

Our second meeting will include a parent panel of "older" kids who have cochlear implants. 

For more information, contact Missy Stithem at missystithem@yahoo.com

Optimizing cochlear implant programming

Here's some research I'm watching for improved CI programming.

At Vanderbilt University they are performing Image-based frequency reallocation for optimizing cochlear implant programming.

The major goal of this project is to assess the clinical utility of an image-guidance system for Cochlear Implant (CI) programming assistance that we are currently developing. For each CI recipient who participates in this research study, state-of-the-art image processing methods are employed to detect, using pre- and post-implantation CT, the position of the CI relative to the neural stimulation region and to analyze electrode stimulation patterns. Using the important information these spatial analysis techniques provide, we reprogram the CI recipient’s processor. Programming parameters include which electrodes are active, determining the relative power of each electrode, and determining an electrode frequency allocation table. Improved hearing performance for research participants will demonstrate that image-guidance can lead to more effective CI programming and better hearing restoration.

 

Chinese Cochlear Implant

Nurotron, a Chinese cochlear implant has been launched in the Chinese mainland for patients aged six and older. In China, there are 28 million deaf people and 30,000 babies born without hearing each year. Priced at $16,000, this could have a interesting impact on the implant market. 

Hear to Learn classroom amplification project

Thrilled to update you on our Hear to Learn classroom amplification project. Here's a short video describing our dream. 

 

Photo Update

Making banana bread with Lily's doll Lanie.

An sunset trip to the playground.

Bath time in the sink.

Sledding with the neighbors.

The perfect sled from Grammy.

The Girls watching our talented friend Carter staring in a play titled "What the wind taught me." 

Bodie yelling dog (GA).  At 15 months, he's got dozens of words. 

Kindergarten science fair project on sound

Lily's first school science fair was a huge success.  Of course her project was on sound. 

Titled "How loud is my school?" Lily and I measured various classrooms with my phone sound meter.  Lily made predictions, documented all the measurements and then created a graph with the readings. She learned the word "vestibule"  for the school's entryway, knows decibel is a measure of sound, and can now explain what the "speech banana" is all about. 

While the kindergartners weren't judged on their projects, Lily knew she won when her family came for her "official" presentation, she received a ribbon and her amazing school principal (seen below) discussed the project with her. 

 

Pinkalicious - Community Theater

We recently attended a fabulous community playhouse show called Pinkalicious starring Lily's good buddy Emma.  In the dedications, Emma gave Lily credit for inspiring her to try out for the show because Emma only loves red, while Lily loves pink.  Certainly Emma has inspired Lily to do many things like getting involved in theater. 

Fortunately the theater was quiet and the actors wore microphones.  Lily didn't want to miss a single word!

 

 

AB swimming girl

During swimming lessons, Lily kept knocking her Neptune waterproof headpieces off with her goggles. We pulled out the AB swim cap and like magic, the headpieces stayed on and she didn't spend most of the time readjusting them. 

Lily loves the stretchy purple cap.  When she saw the big AB on the side, she announced that she was an "AB girl."  She also asked me how she did swimming lessons when she couldn't hear in the water.  It's only been a year since she received her waterproof Neptunes, but already she has forgotten the water challenge.  Thank you AB.  You should see her swimming skills!  

Cochlear Implant Insertion Video

Fascinating video of a Cochlear Implant electrode array being inserted into a cochlea. 

 

Local lecture by Dr Charles Limb - Building the Musical Muscle

Great local lecture called "Building the Musical Muscle" by Dr Charles Limb who is a CI surgeon from John Hopkins School of Medicine and a music professor in the Peabody Conservatory of Music.  His goal is to use music to help recreate perfect hearing. 

Go to http://client.stretchinternet.com/client/nwuadmin.portal# and search "Limb." Then press "Watch."

New mapping strategy

Vanderbilt has developed a new mapping strategy which is worth watching. Adult Cochlear implant users report dramatically better hearing with new process.

Interview with Advanced Bionics Senior Execs

Facinating interview with Senior Executives at Advanced Bionics by our friend Howard.

It will give you a lot of hope for the future of hearing with cochlear implants.  

Hockey game bathroom attendant

One of our favorite researchers, Mary Pat Moeller of Boystown, calls Lily a fast mapper, meaning she learns something and then immediately puts it into use.  

This week Lily has been trying to understand Martin Luther King, Jr and his work "to make this a free country."  So when she encountered the lady in the bathroom at the Hockey game who tells you which stall to use, she declared that "this was a free country and she could use whatever bathroom stall she wanted....Right?"  

She also made a flag to wave at the game, because she "knew that it would get her on TV."