Life is Bliss - Lily's Cochlear Implant Journey

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."

Dana Suskind, CI Surgeon and language advocate

Loving this recent article in the Chicago Tribune about Dana Suskind, a Chicago area CI Surgeon and language advocate.  Her research program, outlined below, particularly resonated with me.  

Teaching parents about the importance of language is a key component that must drive early intervention engagement.  Tools like LENA help bring awareness to how much and how you are talking and it gives parents a 30,000 word benchmark for real direction.  And this could be applied to any family, not only to those with a child with hearing loss.  

Suskind worked with her University of Chicago colleagues to launch 30 Million Words, a program that sends research assistants to the homes of at-risk children for 13 weeks and educates their parents about the importance of engaging their children in an ongoing dialogue — and, equally important, offers them the tools to do so.

Researchers work with the parents to develop weekly word goals, with an ongoing emphasis on "the three Ts: Tune in, talk more, take turns," Suskind says.

"Babies aren't born smart," she says. "They're made smart. And how are they made smart? Your words."

"All parents should be allowed to know the power they have. If we can change how parents view their language and the power they have to impact their kids' trajectories, it will be amazing."

 

AB's new BTE and eletrode

New information is coming out on Advanced Bionics' new Behind the Ear (BTE) processor.  Check AB's website for all the latest details. 

Also reports of a new HiFocus Mid-Scala Electrode from Advanced Bionics which has recently received approval in Europe.  See press release for latest info. 

 

Neptune Batteries - My discovery

I can't believe I haven't posted my amazing discovery about longer-life AAA batteries for the Neptune.  

Lily wears bilateral Neptunes and also typically wears bilateral FMs all day at school that drain her batteries.  We were having trouble with the regular rechargable Duracells making it through the school day. They were also very unpredicatable. 

Then I discovered Rechargable Duracells - Stay Charged.  We now get almost 10 hours of power.  These little batteries have changed our life dramatically, as well taken the burden off Lily's teacher. 

I also see on the Duracell website that they now have a "Quick Charger" and a "15 minute Charger."  These might have to go on our next Wish List. Our current charger takes around 9 hours to charge, so it leaves little room for recharging user errors.   Ahhh technology!

Snowing again with Angels

It's snowing again!  Time for snow angels. 

Look closely at the reflection in the window behind Bodie's head.  Sister is always watching.  :)  Maybe Bodie's guardian angel. 

Holidays - Looking back and forward

We've made it through all the holidays.   For some reason it felt like the best holiday season yet. 

Bodie turned one right before Christmas and we can already see the challenges these December babies face.  We're going to have to get much better at Birthday parties, Christmas gifts, stocking stuffers, etc. 

Lily kept questioning us on why she was the only one that got any toys in her stocking.  She's already getting far to clever to trick.  She also kept asking about the logistics of Santa delivering toys around the world.  However, she already understands the concept that you have to "believe" for Santa to come. 

This year was such a great one for Lily's hearing.   She received her new waterproof Neptunes this spring, as well as the ClearVoice software that helps her hear in noise.  The ability to go in water and still hear has been remarkable and has changed our lives in so many ways.  The waterproof thrill is not lost on Lily.  She still tells everyone her Neptunes are "WATERPROOF....CAN YOU BELIEVE IT?" 

Lily also started Kindergarten with a personal FM and a soundfield in her Kindergaten room (with a teacher and student microphone).  It has been a remarkable combination.  While she still misses some of the quiet chit chat, she is picking up on a tremendous amount.  Probably more than some of the hearing kids. Her teachers have been a dream and so easy to work with.  This has made a huge difference. 

Lily's soundfield use has also helped launch my drive and work to develop the Hear to Learn project, where we are putting 100 soundfields in 100 classrooms in four elementary schools. Thank you everyone for supporting this project with your donations and encouragement.  We have truly been blessed with kind family and friends who support our dreams.  The project and fundraising is really starting to come together.  Can't wait for you all to see it in action.   

Here's a few more pictures to fill in the last month.  Where has the time gone?

 

Bodie's first birthday

Mannheimsteam Roller at the Lied

Putting reindeer glitter out on Christmas Eve. 

Husker basketball game to watch Uncle Philip's band

Our favorite gift.  Lily's work from computer class.

Bodie is very busy these days.

Service above self starts early. 

Bodie's Language

Bodie's language has exploded.  He's added "Go" and "woof" and lots of beginning sounds to words like book and bowl.  He has clearly built a large receptive vocabulary like shoes, socks, mouth, where is, ...  Language comes easy. 

Like his sister, he now doesn't stop talking.  HIs language and sounds are varied and he can make his wants and desires very clear.  Five years ago, Lily had been through two surgeries and two activations, with just weeks of hearing.  She could also make her wants and desires understood at that time, but what a different journey. 

Music perception - What can Lily hear?

I had a wonderful discussion with one of our blog readers about how Lily might hear the different notes on the piano.  I'm appreciative of her expert explanation and feedback.  
 
Lily, depending on where you play the notes on the keyboard, may be able to tell the difference of 1-4 semitones. In some areas, she’ll be able to tell you that C-C# sound different (when not looking) but may not always be able to tell you which direction they are going. In other areas of the keyboard, she may have to have C-E or larger to tell a difference. In addition, most implants are programmed for speech at around 250Hz, which is the F# below middle C. This usually knocks out the rest of the notes below there, but not always. Her larger challenge would be telling major from minor chords (and honestly, as a trained musician, it can be challenging).
 
Regarding music you have ‘The Good, The Bad and the Ugly.’  The good is rhythm, the bad is timbre and the ugly is pitch. Mainly that is  because rhythm is a significant part of speech and helps us so it’s conveyed very well. Timbre, the ability to detect different tone qualities is harder, but can be learned.   It is hard because of its complex spectral quality. Think about how similar a clarinet and saxophone sound, for instance, now add in the complexity of a cochlear implant’s processing strategy.  Finally,pitch is the hardest, simply because you and I have 30,000 hair cells (each of which responds to one frequency) and Lily now has 18 electrodes to represent those same 30,000 hairs cells. That’s not to say she won’t be amazing (she clearly already is), but that she may have a “sweet spot” for certain types of music perception and production (ie., singing on key in a specific range).

Then Lily's fabulous music teacher, who shows so much interest in this topic (thank you), told us the following:

Semitone is another word for a half step, which would be the difference between one note next to another one on the piano, like B-C, E-F, or B flat-B. Lily was able to sing descending Major triads starting on Eb (E flat) and ending on G below middle C (which is pretty low for a kindergartner) So she sang descending triads in the Major keys of Eb, D, Db, C, B, Bb, A, Ab, and G. I'm convinced she can hear the difference between 1 semitone.

Amazing!

Test of Auditory Processing Skills

At our last audiology visit, Lily took the test of Auditory Processing Skills-3 (TAPS-3) Subtest 8 - Auditory Comprehension.  Basically, the audiologist started by reading a short sentence and then asked Lily a question about what he just said.  Each question got longer and more complex.  Lily received a 28/32 which put her in the 99th percentile.  Not bad! :)

Music Lessons

Lily has started piano lessons.  She's been begging to play for a while and now has a month of training under her belt.  A few more lessons and we'll post a video.  

Lily's ability to sing on pitch, recognize songs, sing all the words and learn about music has already gone well beyond everything we believed when she first received CIs.   Adults with AB CIs have reported hearing anywhere from 120 to over 440 pitches.  I'm not sure how that correlates with musical notes but Lily's pitch perception must be fairly good.  

At school, Lily's music teacher has been collaborating with her hearing resource teacher to incorporate best practices from the SPICE CID curriculum. Lily said her music teacher kept her off the plastic risers today, because they were covered in static and his can of static spray is empty.   So we're off to find super-sized cans to replenish the school.  Static season is here.

Lily is thinking about the future

After volunteering at Lily's school, I saw this on the wall.  It was by a big sign that said, "The Class of 2025.  When I grow up, I...."   I have no doubt that if this is her goal, she'll make it happen.  It was hard to realize this five years ago when she was born.  Now I know there are no limits.   

Bodie update - He's a talker like his sister

Bodie's language is growing like crazy.  With such ease, he uses a number of words like dog (ga), dada, more, up, baby, Hi and mama on a daily basis.  He loves to alert to dogs barking and looks for any unusual sounds. He throws his hands up when you ask "How big is Bodie?" and claps his hands on request.  He even dances/bounces to music.   This is a whole new experience for us, one we don't take for granted.

We're thankful for the 700+ hours of language therapy we can now use, free of charge, for Bodie. No one has given us any language milestone.   

Bodie's also on the move, nearly walking.  He's certainly growing in his confidence and his exploration every day. Big Sister is loving the interaction and already protecting her "stuff" from little brother.  Fun to watch their relationship develop.  

 

Taking the Stage!

Last week we attended a performance ofJuggleMania and Shoehorn.  After selecting a variety of kids from the audience, Lily was picked to come on stage.  I think the juggler could see the determined look on her face and it probably helped that she was jumping up and down with her arm in the air.  

She had to hold a spinning ball on a stick with four other kids.  Periodically the balls would fall off and go in every direction.  It was very funny.  The juggler's jokes were hard for Lily to hear and understand so I spent a lot of the show whispering to Lily.  

The next day Lily was a "celebrity" at her school with all the kids that saw her on stage.  Another memorable experience.  

Lily's Report Card

I'm posting part of Lily's report card to give hope and motivation to parents starting on this Hearing/Cochlear Implant journey.  

Although Lily has just completed one quarter of Kindergarten instruction, her report card covers everything you can imagine, including language arts (reading/writing/speaking and listening) and music.  These are two subject areas that kids with hearing loss might have trouble with.  Grades are 1 to 4, with 4 being Exceeding Expectations.  

Intensive early intervention pays great dividends for the future.  We're so proud!

AB T-comm Review

Interesting Advanced Bionics T-Comm review at Cochlear Implant Help.  

Halloween Adventures

Halloween is the perfect holiday.  Do as much or as little as you want.  Live in the moment.  Enjoy the fall. It's been absolutely beautiful and we've been busy gathering BIG experiences.  

Trick or Treating was great too.  The girls were exhausted by the end with their heavy pumpkins overflowing with sweet treats.  

  

Sonova Report on Advanced Bionics' future products and other good stuff

Check out Sonova's report (AB's parent company - pg 36-41) from their recent Investor and Analyst meeting.

It highlights product rollout strategies, product pipelines, Neptune's success, integration strategies of AB and Phonak technology, and upcoming product launches in 2013.  

Very exciting to see new products and processors being developed for better hearing, longer battery life, reduction in size, signal processing, wireless connectivity, and bimodal connectivity.  

New T-Comm for Neptune Available

Advanced Bionics is pleased to announce that the T-Comm™ accessory is now available in the United States and Canada. A convenient new accessory for the Neptune™ sound processor, the T-Comm delivers the natural microphone placement of the T-Mic™, a built-in T-coil, as well as easy connectivity to MP3 players and other popular consumer electronics devices.

Contact Customer Service for orders and to learn about the special introductory offer.

Call  877.829.0026

Email  [email protected]

Genetics and Environment to Blame

Genetics and environment are more often to blame for poor CI performance according to new research in the Hearing Journal.

Homesteading and History - Creating experiences for learning

Took a little road trip to Homestead National Monument near Beatrice, Nebraska, which celebrates The Homestead Act of 1862.  By giving government land to individuals in 30 states, this law allowed nearly any man or woman a chance to live the American Dream, including our Great Grandfather.  Over 1.6 million people rose to the challenge and claimed 270 million acres. 

One of the first people to file a claim under the Homestead Act of 1862 was Daniel Freeman, in Beatrice, Nebraska.  We were able to see his homestead, as well as the Freeman school.  

An important judicial decision regarding the separation of church and state took place in 1902 in Nebraska. Daniel Freeman made a public grievance over the use of the Bible in public school instruction.  He requested that the teacher cease using the Bible as a textbook and reference during her classes.  Edith Beecher, the teacher, refused saying she had permission from the school board.  Daniel freeman took his case to the school board.

The school board defended Beecher saying her 10 minute lesson was in the best interests of the children, and it was Freeman who was guilty of hounding the teachers and school board.

Freeman pursued the case taking it to the Gage County District Court where he lost and then on to the Nebraska Supreme Court who found that the school was in violation of the U.S. Constitution's separation of church and state.  Interestingly, this happened a number of years before the U.S. Supreme Court ever addressed the issue.  Who knew all this happened so close to home.  

And to make a connection to hearing, can you tell the acoustics in this one-room classroom are horrible. Imagine wood floors, plaster walls, squeaky chairs, squeaky desks, squeaky chalk, and a metal stove burning corn cobs.  Can you imagine?  The only positive is that the classroom was small and the Kindergarten table was right up front.  

Research about timing of pediatric cochlear implantation

Here are three studies making the case for early implantation.  Lily was implanted at 10 months of age.  If we did it again, we'd try and get her implanted much earlier.  

School Hairdo

Here's Lily's stay put Kindergarten school hairdo.  On most days you don't even see her Advanced Bionics Neptune headpieces.  Only the tan wires that go down below her ponytails and into her shirt.  

I'm fascinated to read some of the blog speculators that are saying, based on patent applications, Advanced Bionics might be working on all-in-one headpiece/processor.  Can wait to see where the technology goes.  

 

Stanford's School of Medicine highlights Lily's blog

Love being featured on Stanford's School of Medicine's blog about Going back to School with hearing loss.  

They have identified other excellent resources in this post like our friend Drew's Blog and our friend Rachel's website called Cochlear Implant Online.

Ironically, Stanford is one of the places Lily's Dad and I joke about Lily attending.  When we ask Lily where she is planning on going to college, she says, "Mom, I'm just in Kindergarten."  Maybe Lily can include this coverage on her admissions application.    

CI Traveling Awareness Bear - A visit from Christi

Two weeks ago, we received a Traveling Awareness Bear in the mail.  Her T-shirt says, "Hi I'm Christi, I have a Cochlear Implant."    Sure enough, attached to her bear ear was a little cochlear implant.  

The bear also came with a passport and a thick binder with journals and photos of the bear's previous adventures.  Lots of cute stories of little girls with CIs/Hearing Aids attending dancing, AVT, audiologists, parties, meals and travels.  

Lily took Christi to Kindergarten and had some great experiences including reading, math, lunch, the playground, and art.  Lily's teacher even had her speak to the entire class about Christi and her Cochlear Implant.  We have no idea what Lily said, but her teacher indicated that she did an excellent job explaining everything.  Another worry to cross off the list.

It turns out, one of our friends, with a CI kiddo, signed us up for the bear months ago (Thanks!).  The Traveling Awareness Bear organization has dozens of bears with all kinds of challenges.  These bears have now been traveling around the world for the past two years, creating tons of memories and helping kids see someone just like them.   What a great idea.  Lily loved Christi's visit.  

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

 

Family photo shoot

Trying to capture time which is now moving so fast.  

At 5 years, Lily is making huge strides in her reading even since the first day of school.  There is nothing she won't attempt to read now.  Words are coming easy to her and all those executive function concepts like remind, consider, and observe are part of her daily vocabulary.  Pretty incredible.  

At 9 months, Bodie is crawling and almost walking.  He says Hi, more, Mama and maybe Bye.  What a difference hearing makes.  Reminds me of the importance of early implantation and early intervention. These are critical years.  

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.

Kindergarten Self Portrait

Nebraska Hearing Aid Banks

Great collaboration in Nebraska with three different hearing aid banks targeting everyone from babies to seniors.  Find out more at http://cehs.unl.edu/barkley/HearU/index.shtml

 

Playground CI explanation and competition

Last night at the school playground, Lily saw a little friend that she thought she knew from Kindergarten. Sure enough, the little girl said, "I saw you jump roping today."  And then they were off playing together.

Soon we heard the little girl say to Lily, "What is that circle on your head?"  Lily looks at her with a face that says what are you talking about?  And then says, "Oh, they are my CIs.  They help me hear."

The other little girl pauses and then says "Oh."   Next thing we know they are off playing again.  Mom and Dad just smile.

Soon the girls are playing some kind of chase on the playground equipment.  The other little girl says "go down the slide."  Lily says, "I can't. There is too much static."  The other little girl says, "There are a lot of things you can't do."  So Lily starts making up tricks that the other little girl can't do and keeps saying "No do it like this."  

As the playing field levels, Lily's confidence in herself and attitude makes the difference.  Her ease of making new friends in an instant answer all those worries we had at the beginning of this hearing journey.

 ------------------------

Tonight we again met this little girl on the playground.  The kids rushed up and huged each other.  Then the little girl immediately says to Lily, "Would you like to play with me on the playground equipment, but not on the slides."  Lily says, "Sure."  And off they went.    

Lily's doll has hearing aids

This weekend, Lily's American Girl doll got hot pink hearing aids, or as we like to call them implants.  Lily was truly thrilled to see this adorable doll that now looks even more like her.  She rushed to school today with pictures in hand.  

Thanks American Girl for helping our kids see themselves, with their hearing devices, in their dolls. 

 

Listen to an FM through a hearing aid

I've been thinking and studying FM systems and Soundfields a lot lately.  

Found this fantastic simulation of what speech sounds like when recorded first through a hearing aid, and then through a personal FM system linked to the hearng aid.

The demonstration takes place in an empty classroom while the presenter walks toward and away from the "listener" and while competing voices are played in background. 

If you aren't a believer in Assistive Listening Devices like FMs or Soundfields, you soon will be!!!

 

 

 

Top 6 things to bring to Kindergarten for kids with CIs

1)  Backpack full of backup batteries.

2)  Five cans of static spray for the plastic slides, plastic risers, big plastic things in the gym and anything else that crackles.

3)  Audio cords for the laptops if using Neptunes.  Make sure the laptops are unplugged when using the audio cord.  Also make sure you test the setup when using both the FM and the audio cord at the same time.

4)  Articles for the music teachers on "what my kid hears."  Or the recent article in the Volta Voices on "What I wish my Music Teacher knew."  This was a happy accident.  The music teacher was very interested in Lily's ability to hear notes close together.  He brought Lily into the music room to sing a third and she did it.  He was amazed.  We were too.  We knew she could sing reasonably well, but repeating the notes so close together was impressive.  

5)  A pre-meeting should be held with the classroom teacher and others on hearing technology management.  Make sure there is a management plan in place especially for the FM.  Then review everything again the first few days.  There are so many moving parts.  

6) Cookies for the teachers.

We have been blessed with a group of fabulous teachers and administrators who have really gone out of their way to make sure Lily is hearing everything.  I know things are working because Lily has come home each day with elaborate songs containing lots of details, numerous "rules for life" sayings like "I can be OK even when others are not," and specifics about what the media teacher has told them like details of her favorite book as a child.  

Feeling lucky!

Final days of Summer and a Audiogram tuneup

We've had a busy couple of weeks with Uncle John visiting, Aunt Kelly becoming Dr. Kelly, job changes, kite flying, last minute trips to the zoo, school starting, big vision projects launched and a milestone birthday.  

Somewhere in between there we took Lily up to Boystown to get her a pre-school map check up.  This was the first time they actually mapped her in the booth by doing hearing checks and adjusting her map at the same time.

Our Audiologist Jeff earned his money.  For a solid two hours, he adjusted everything and the results have been noticeable.  We left with an audiogram with responses between 15 and 20db at every frequency. This was our objective.  Most of the "whats" are now gone and I think Lily is hearing as good as she ever has.

Attending AgBell reminded me to push the technology and make sure it is maximized.  If something is wrong, always suspect the technology first.  If something is right, thank your audiologist.    

Princess Jeter

Lily loves the Yankees and Derek Jeter!  Another day at the ballpark.

First Week of Kindergarten - CHECK!

The first week of Kindergarten was a great success.  The school administration and teachers have been fantastic.  They are eager to learn, respond immediately and have a positive attitude.  

I can tell they are using the assistive technology effectively because Lily is coming home with lots of details like words to songs, facts about the Media Specialist and explanations about the man who the school was named after.  In the first week, I've sent Lily's teachers articles about listening to music with CIs, cans of static spray for slides and other static making plastic and audio cords for computer time.  

At the end of the first day, Lily annouced that, "This was the best day of the year."  She threw her hands up in the air and was ready to go back.  

My other favorite part of the first day was when picking Lily up.  Her teacher asked, "Lily can read?"  I said, "Yes."  Then she said, "No I mean, Lily can REALLY read?"  I said "Yes, she has been practicing since she was two months old."  

Grandma told Lily that we were proud of her because her teacher noticed that she was a reader.  As Lily merrily skipped along, she responded by patting her head and saying, "That is because of my CIs." And while I'm sure Lily would have been ready for Kindergarten, in this case I think she might be right.  Her hearing journey has certainly given her a great start.  

 

Lawyers with Cochlear Implants

Although Lily wants to be a doctor and a pilot and a builder and a mom and a ..... 

Here is an interesting article about three lawyers whose lives have been changed by cochlear implants.

Ask Doctor K

This article by Dr. Anthony Komaroff of Harvard Medical School was in our local paper today.  He was answering a question from someone with severe hearing loss that was inquiring about candidacy for cochlear implants.  Very good basic explanation.  

A few nights before Kindergarten

We are to this moment.  A moment I've thought about often.  Lily entering mainstream Kindergarten on time.  While she is young for her grade, she is beyond ready. 

When a person told us four and a half years ago that it was the Gold Standard to enter Kindergarten on time for kids with hearing loss, and then she asked us what our goal was for Lily, we reluctantly said I guess enter Kindergarten on time?  Well..here we are.  Wish we could have seen the future, but then maybe we wouldn't have worked so hard to get to this point. 

This week we have our final pre-Kindergarten IEP meeting.  Our school's motto is kids get what they need here.  I like that.  Lily enters with very minimal services and good hearing technology support.  We have two IEP goals going forward:

1)  Given an interaction with a teacher or a peer and without adult prompting or support, Lily will improve her social communication skills by maintaining/staying on topic of conversation for 6 or more exchanges and advocating for herself when she doesn't hear or understand a teacher's or peer's comment or question, improving from a baseline of 3 points in an optimal acoustic environment to 4 points in a more challenging acoustic environment as measured by the SLP Social Skills Rubric. 

2)  Given a classroom activity or discussion, Lily will respond to levels of abstraction questions/directions, increasing from a baseline of 50% to 90% as measured by SLP Levels of Abstraction Data Form, Level 3. 

These goals focus on common challenges for kids with hearing loss including social emotional/self advocacy and auditory memory/linguistic concepts.  I'm also very interested in doing some listening in noise practice. 

There is so much to think about and information to share with a whole new set of teachers and administrators.  However, I am confident that Lily will continue to soar. 

Not sure about Peaches