Life is Bliss - Lily's Cochlear Implant Journey

Huffington Post Coverage of Hear To Learn Project

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

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

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

 

Hospital Tweeted a Cochlear Implant Surgery

This morning, in an effort to raise awareness and to provide the public more information on cochlear implant surgery as a viable treatment for hearing loss, the Swedish Medical Center in Seattle became the first hospital to live-tweet a cochlear implant surgery.  The live-tweeting will also include live-instagramming of photos from inside the operating room.

On Twitter see @Swedish or #SwedishHear

 

Lily Rocks Elementary School's Dedication Ceremony

We were proud parents as Lily was chosen to represent the 80 kindergarten students at the dedication ceremony for her new elementary school. Lily had to read a paragraph about the time capsule the kids put together to be opened in the year 2037. She did great in front of a crowd of 200+ people and was excited to be a part of this special occasion.

GAO Report on Fed Support for Developing Language and Literacy

New report out from the U.S. GAO on "Deaf and Hard of Hearing Children: Federal Support for Developing Language and Literacy."

Getting Ready For AG Bell

 

The AG Bell Biennial Conference is coming up in three weeks, June 25-28, in Orlando, Florida. For those of you still on the fence about attending, we'd highly recommend it. We went two years ago when it was held in Milwaukee a couple months after Lily's CIs were turned on. It was a fantastic meeting place to get one-stop access to experts in speech and hearing loss with informative seminars, research and exhibition areas. Couple that with the opportunity to meet individuals and families living the "hearing journey" and it was a no-brainer for us to attend again. 

For those of you already planning on attending, drop us a note or stop us in the halls. We'd love to meet up and say hello. Lily will be there and we'll be volunteering at the Advanced Bionics booth as well. We're looking forward to a great conference and some fun with Mickey and friends. Hope to see you there.

Lily & Grandma In The Newspaper

Lily and Grandma made the local newspaper yesterday as they were showcased on a story about the weekend's fundraising event at Pioneers Park Nature Center. They had a grand time with activities and games and are shown in the picture making a bird feeder, which is now attracting beautiful goldfinches to our back porch. 

The best part of the press is the fact that Lily made the paper for being a normal kid, participating in normal kid things. We don't mind the attention and press she gets for being a cochlear implant kid, but it's nice sometimes to get the attention without her CIs being a focal point.

  

Scientists Decipher How Brain Handles Silence

Interesting article regarding research into how the brain detects and uses silence in speech processing. According to the article, "U.S. researchers say they've spotted mechanisms used by the brain to switch off sound processing at key moments. "Being able to perceive when sound stops is very important for speech processing. One of the really hard problems in speech is finding the boundaries between the different parts of words. It is really not well understood how the brain does that," psychology professor Michael Wehr, a member of the university's Institute of Neuroscience, said in a news release."

Talking to State Senators and the NSLHA

Last week, we spoke at the State Senator's Breakfast of the Nebraska Speech-Language=Hearing Association.  We spoke about Lily's journey and the importance of supporting speech, language and hearing legislation.  Lily did a fabulous job at amazing all who attended.  Lots of singing and conversation during the breakfast.

Specifically we talked about LB 493, introduced last year by Senator Karpisk, which is a bill that requires insurance coverage for single or bilateral cochlear Implants.  

Passing this legislation will be an uphill battle, because of the concern with insurance mandates and the power of the insurance industry in Nebraska.  What is ironic is that many insurance companies in Nebraska are already covering one or now two Cochlear Implants. However, there are still a few companies, like Coventry, that are not providing any coverage at all.  This is not acceptable and we'll work hard to get this changed.    

Upcoming Moog Center Workshops

As you may remember we had a fantastic experience this summer attending the "Helping Your Children Learn to Talk" workshop in St. Louis. It was without a doubt one of the best couple days you can spend and well worth the investment. Well, the Moog Center is taking applications for this summer's training and offering a variety of other programs for parents and educators alike. Here's a listing. Check it out and don't forget to tell your educational professionals as well.

January 21-22, 2010 - $300 

Pediatric Cochlear Implant Programming 

A workshop for cochlear implant audiologists who work with infants and children. This workshop will focus on cochlear implant programming techniques for optimizing access to sound for infants and young children.  Protocols for monitoring progress in children at various developmental levels will be discussed.  Instruction will include live demonstrations, videos, and presentation of relevant case studies.  Seating for this interactive workshop is limited. CEU’s available.  Contact:  Connie Ciavirella at 314-692-7172 or [email protected] 

 

February 18-20, 2010 - $350 

The Earlier They Get Started, The Faster They Learn To Talk. 

For teachers and SLPs providing early intervention services to children with hearing loss. This workshop will focus on techniques for helping parents work with their own children and strategies for professionals working with very young children to develop spoken language skills.  Instruction will include live demonstrations, videos and hands-on opportunities.  Seating is limited. CEU’s available.  Contact:  Betsy Moog Brooks at 314-692-7172 or [email protected] 

 

July 7-11, 2010 - $150 

Helping Your Child Learn To Talk 

A Workshop for Parents of Children who are Deaf or Hard of Hearing, ages 2 to 5 

This four-day workshop will provide parents with opportunities to learn strategies to help their children learn to talk while their children receive daily individualized instruction by a staff member of the Moog Center.  Each day is packed full of activities for the children and information for the parents.  Children over age 3 may receive speech and language evaluations, for an additional fee.  Contact:  Betsy Moog Brooks at 314-692-7172 or [email protected] 

 

September 2010 – Date to be determined. $150 

Strategies for Professionals of Mainstreamed Students with Hearing Loss 

For SLPs and teachers who have a student with hearing loss in their classroom. Learn effective strategies that work with students with hearing loss who are mainstreamed into your school setting.  Topics to be 

discussed include:  hearing loss and effects on language, academic difficulties, assistive listening devices, and support services. Contact:  Connie Ciavirella at 314-692-7172 or [email protected] 

 

October 2010 – Date to be determined. $300 

From Assessment to Practice:  Developing Spoken Language Skills in Children with Hearing Loss For SLPs and Teachers of the Deaf 

This workshop will focus on accurately assessing language levels, identifying areas for language instruction, selecting appropriate goals and objectives, and planning lessons for children with hearing loss.  Topics include:  Using norm-referenced language evaluation tools to diagnose strengths and weaknesses, using criterion-referenced language rating forms to select goals and mark progress, and implementing targets into a variety of language lessons. CEUs available. Contact:  Connie Ciavirella at 314-692-7172 or [email protected] 

 

November 2010 – Date to be determined. $300 

Conversational Language Activities for Deaf Children For SLPs and Teachers of the Deaf 

This workshop will focus on implementing language goals into a variety of conversational language activities for children with hearing loss.  Topics include:  Modeling and imitation techniques for correction and expansion of language, selecting appropriate language goals, planning conversational language activities to meet language goals and a variety of ideas for many different kinds of conversational activities.  This workshop will also include classroom observations and some hands-on practice. CEUs available.  Contact:  Connie Ciavirella at 314-692-7172 or [email protected] 

 

For your convenience, the Moog Center offers onsite workshops for larger groups.  If your staff or district is interested in scheduling one of the above workshops onsite, please contact Connie Ciavirella at 314-692-7172 or [email protected] 

 

Visit the website at www.moogcenter.org for complete workshop listings and information about the Moog Center’s publications.

3-D Scanner May Lead to Better Hearing Aids

Ran into an interesting article in the latest issue of Fast Company that looks at MIT's latest 3-D digital ear canal scanner. The technology will enable a better reading of the shapes and shifts in the ear canal than the traditional silicone ear molds. While the technology isn't likely to effect Lily and other cochlear implant users, it could be a big advance for those requiring hearing aids. MIT hopes to commercialize the technology by 2011.

Happy Birthday - Lily Turns Two

Lily turned two today and had a heck of a party with family and friends. She had an "Oswald" cake and way too generous grandparents and friends who filled the living room with presents. 

Last year at this time she was just beginning to use her "ears" to recognize and respond to sounds. Tonight I was filling out the doctor's checklist for her 2-year check-up tomorrow and she's meeting all of the developmental and language milestones on the list (20+ words, two-word sentences, use of pronouns, following 2-part commands, etc.). Wow! What a great birthday gift. 

Here are a couple of pics from the party. Enjoy!

Preparing For Our Advanced Bionics Trip

From the day we chose Advanced Bionics for Lily's implants we've wanted to make a visit to see the company in action. As luck/fate/karma would have it I was going to be in the area attending a trade show for my work. We decided that it would be a perfect opportunity to tack on a couple of vacation days and make it a family adventure as well. So the whole family will be making a trip to sunny SoCal in a few weeks. 

Lily's Mom made a few calls and managed to schedule a tour for us at their facilities. During the conversation, the AB rep asked if we'd be interested in speaking to the employees to share our story. We jumped at the invite to meet the people who've made such an impact in Lily's life. So we're now in the process of prepping a 60-minute presentation to be given to both the manufacturing facilities and AB headquarters. Stay tuned for updates and insights.

Speaking Gigs

In celebration of Lily's one-year hearing birthday on Wednesday, we've decided to undertake a new venture. We are currently developing a presentation revolving around our journey from initial days of diagnosis through our daily adventures in learning to listen and talk. If you have a need for speakers from the parents' perspective, contact us for availability. 

Boys Town Memorial Day Run - Join Us!

Every year Boys Town National Research Hospital holds a Memorial Day Run to raise money and awareness for its Cochlear Implant Center. It's a really well run event with over 2,500 runners and walkers. There's a Children's 1-Mile Fun Run, a 1-Mile Walk/Run and the 5-Mile Walk/Run. Here's a Memorial Day Run Video from the event.

Last year, we met several friends and pushed our kids the 5 miles in their strollers. This year, I've decided to take a run at the run, while Lily and her Mom will likely gather a group to walk the race. It's a really fun time with children's activities and trophies for winners. Here's a pic from last year where Lily got to say hello to Dr. Lusk, her CI surgeon.

If you'd like to participate or donate, here's the registration link. Hope to see you there!