Life is Bliss - Lily's Cochlear Implant Journey

Airplane Pilot or Flight Attendant - Decisions

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

San Diego - Just like bathwater

San Diego was beautiful and felt like bathwater.  A perfect 70-80 degrees everyday.   There was so much to see and do.  From another Children's museum and baseball game, to Sea World and Coronado Beach. We loved it there.  

Lily's favorite stop was Sea World and everyone we met "informed" us that "you have a talker there." From the flight attendants to people at the next table in restaurants, Lily made a lot of new friends. She most often informed them that "I am four."  

 

 

 

Phoenix was HOT

It was over 100 degrees everyday in Phoenix, but that didn't deter us from seeing the (air conditioned) sites. From the Diamond Backs to the Science Museum, there was lots to see, do and talk about.  

We swam everyday to stay cool and even saw a guy with an AB CI at the In-N-Out Burger.  Lily's Dad loves this place.  Good eats.    

The biggest take away for Lily was the saying "Don't hug a cactus, unless you have practice."  With so many cactuses, we heard this phrase a lot.  Lily also enjoyed talking about the lady's voice on the GPS and asking endless questions about how the GPS knew where we were.    

Old Friends

Seeing old friends was certainly a highlight of our trip.  Lily was able to show them all her "tricks" and in return they indulged her with the following "hip hop attitude" photo (this attitude was learned at hip hop dance lessons).  Thank you Ron, Kara, Sheri and Erik for all your hospitality.   You guys are the best.  We miss you already!!!

 

Phoenix Children's Museum

We took a much needed holiday to Phoenix and San Diego to visit friends and to enjoy the sights.  The next few posts will highlight our trip and the incredible experiences Lily got to participate in and learn about.  Too many language opportunities to count.  

One of our first stops was the Phoenix Children's Museum. It's a wonderful spot to explore and enjoy.

Animation Video

At the San Francisco Zeum, San Francisco's Children's Museum, we made this very cool stop action video in the Animators Studio.  Lily took the pictures by pressing the space bar over and over.  Of course the blue guy is supposed to be Cookie Monster. 

Talking Kansas City

A long weekend in Kansas City and only one person said, "Are those Cochlear Implants?  My nephew has them."  Life is pretty normal.  

However, Lily knows few strangers.  She was asked by every Grandma and Grandpa about her name and age.  In return, Lily told everyone who made eye contact about her bulldog named Butter and that it just happened to be his birthday.  Fun for Mom and Dad to sit back and watch.  

When Lily wasn't making new friends, we saw the Kaleidoscope Art Center, ice skated with Clifford, dined at Fritz's Railroad Restaurant and finally climbed through a special exhibit of Under the Sea Adventure.  

By the end of the day, we were exhausted.  We talked our way through Kansas City.  Great trip.

VIDEO: Lily in a Noisy Restaurant

Here is jet lagged Lily, answering questions from Rachel, another CI recipient in a noisy restaurant.  Lily was not so interested in talking, but was quite interested in showing off her colouring book (proper English spelling for my friend Linda).  FUN VIDEO Rachel. Thanks!

Dinosaur Museum and Mirror Maze

Always looking for a new adventure, we journeyed to our local dinosaur museum and mirror maze. Sixty-five life-sized dinosaurs ready to leap off their pedestals.   Lots of new ideas and things to think about.  The mirror maze (with 40 mirrors) was actually quite impressive.  At certain points you could see the kids, but couldn't tell where the real ones were.

Dinosaurs are a weird concept for kids.  Lily knows they are dead and they lived a long time ago, but I think she believes we may come across one someday.  Why else would people talk about them all the time on TV (Dino Dan and Dinosaur Train) or find them in the Chicago airport?

2010 - A Year in Review and Looking Forward

I've been trying to recall what happened in 2010 and the implications or impact on our lives.   It was a busy year that went in many different directions.  Lily has grown in so many ways.  She is a little girl who sees no boundaries. 

Hearing issues still remain a major focus for our family, but it is now very manageable.  Our friends and family have been patient and listened to our never ending rants about hearing loss, technology and the challenges we deal with.  It has become who we are. 

Lily started two mainstream preschools this year and is keeping up or exceeding her peers in all areas.  We still work with SLPs and hearing resource teachers at Omaha Hearing School and our public school. The focus and upfront services have paid off and Lily's expressive and receptive language is extremely strong.  

We were fortunate to start using an FM system in preschool, throughout day at noisy times and in the car.  This has made a big impact.   Hopefully 2011 will bring a new BTE and ClearVoice from AB which Lily would transition to this fall.  Hopefully our advocacy with the public schools for improved acoustics in  elementary schools will mean all kids can have better options for hearing.  

Our passion for travel continued this year and we were fortunate to travel abroad, as well as to Chicago, Pittsburgh, Madison for a hearing study, and we attended AG Bell in Florida to both continue our education and represent the Bionic Ear Association.

LIly is rapidly developing her own interests including dancing, swimming, nature, music and art.   She's starting to read and never stops singing or dancing.  She loves her family and her life-long friends. 

Our families continue to provide major support to making our crazy lives work.  Without them, we wouldn't have the flexibility to go in so many different directions.  Thank You!!  It means the world to us and Lily thrives from your involvement. 

I think 2011 will bring many new ideas and activities, improved hearing and more advocacy, and maybe a grand adventure or two.  Lily loves surprises and so do we.  Who knows what the future will hold.

Thanksgiving Global Adventure

 
We took a quick trip over the pond to celebrate Thanksgiving with Uncle John.  Lily had a great time with all the new language exposure including London Bridge, The Eye, Henry the VIII's Palace, the Queen's Castle, Stonehenge, Maze, Marks and Spencer, Climbers and Creepers, and a British Bulldog that Lily named Butter.  

While visiting the Kew Gardens, a Mom came up to me and said "Is that a Cochlear Implant?" (read that with your best British accent)  I said "Yes."  And she said, "My daughter has one too."  The little girl was right next to Lily, playing in the tiny rubber balls, talking away.  The girls seemed unfazed that they both had implants, but it was fun to compare notes.  

We also met up with Rachel Chaikof of Cochlear Implant Online.  She is one of the first kids implanted nearly 20 years ago during the clinical trials for Cochlear Implants.  Rachel is now in grad school and exploring the limitless possibilities for her future.  It was so kind of her to meet up with us for lunch. Lily was feeling the jet lag at this moment and we forgot to get a picture of them together.  Next time!

Between driving on the "wrong" side of the road and trying to understand the English's English, it was a grand adventure.   Thanks Uncle John for all your hospitality.  

(Trick Photo - This is a reflection of the Husker Football game against Colorado as it appeared out our pub window. Yes, that is the Tower of London.  We watched the game with Nebraskans living in the UK)

Running - Chicago Marathon

While Lily's Dad ran the Chicago Marathon this past weekend, the rest of us took every form of public transportation, to Lily's enjoyment, to watch the adventure.  There were all types of runners from professionals to superheros. Congrats Lily's Dad on finishing!  What an accomplishment.

Tea with our Babies

On a recent journey to Chicago, we had tea and dessert with our "babies."  It was an over the top experience, created by brillant marketers. There was so much to take in, but even more to talk about. 

Assorted teas, finger sandwiches, cucumber sandwiches, cheese cake, mousse and scones, were all on the menu.  All critical words for Lily's development.  Sometimes therapy is tough!      

 

It's a Small World Moment

On the way home from a long day at Disney, Lily entertained the bus by singing "It's a small world after all, it's a small world after all, it's a small world after all, it's a small world after all, it's a small world after all...........on and on.  She never came to the closure of the song, yet her version was exactly how she heard it in the "It's a Small World ride."  The entire bus was laughing and enjoying the innocence of a child.  Little did they know how truly special the moment was. 

Cochlear Implant with a Vacation for $27,375

Want a vacation and a Cochlear Implant in a county and five-star accommodations of your choosing?   Wait no longer.  For only $27,375, a huge savings over U.S. costs, this could be you.  The true meaning of Globalized Medicine. 

While a patient would certainly be leaving the "safety" of the American Medical System, it's probably a great deal for the right person. I was recently reading about a person from the Middle East who went to India for their CI surgery.  The surgeons had done over 600 surgeries and offered all three CI brands.  The person said it was a tremendous experience and the surgeons and services were top-notch.   They were even able to book a holiday for a week before the CI surgery.  Now that is a great idea.  

Spatial Hearing Study

We are off to Wisconsin this month to participate in a Study on Spatial Hearing:  Speech and Language in Toddlers who use Cochlear Implants.  Dr. Ruth Litovsky is the Director of The Binaural Hearing and Speech Lab at the University of Wisconsin - Waisman Center.  She studies how young children learn to locate sounds in their environment.  We are excited to participate in this research and hope it can help shape the future of Cochlear Implant research.   More to come.  

The Kitchen Table

I've recently been thinking about the kitchen table and the act of eating together.  Maybe the most intimate moment in a family's life and a time to be treasured.  

On our journey to and from Chicago, I spent some time reading Frank Stitt's cookbook called the Southern Table.  This is a culture and food, I have little experience with but now am certain I want to learn more (and of course eat anything made by Frank Stitt).  Fantastic.  Grits, greens and peas - look out!

Below is our journey to the Chef/Kitchen table (in the kitchen) of an Italian restaurant in Chicago.  Uncle Nick joined us for loads of eating and sharing of an amazing meal.  We missed Aunt Jessica and Aunt Wendy and her family this night, but enjoyed them on other days of our visit.  Thanks for your hospitality. 

Sometimes it's the Journey, not the Destination

On our recent journey through Iowa, we came across the World's Largest Truck Stop.  Definitely worth a visit.  It was so large, we stopped there on our way home as well.  Endless stuff to look at and talk about.  It actually had a great kid's section which I am kicking myself for not purchasing the princess magnetic story board.  We are way into storytelling these days and of course princesses. 

Lily is also understanding and using a lot of time concepts.    So whenever there is a toy she would really like to have, she says, "For my Birthday, I want ..." This allows her to put down the toy without too much drama. 

Iowa Children's Museum Rocks

The Iowa Children's Museum in Coralville/Iowa City was fabulous.  Thanks for the tip from our friend Landri's Mom.   It is located in the Coral Ridge Mall, where there is also an indoor ice rink and a carousel.   What a tremendous idea.  Lily had a ball and there was so many new things and experiences to talk about.

Fun with Gpas, Santa and the New Year

We've been pretty lucky to see Grandpa Bruce and Grandma Carla a number of times over the past few months.  Lily loves seeing them and talking about Grandpa BRUCE's hat, beard and houses.  (Thanks for all your hospitality.  Grandma Carla somehow escaped our camera.)

Lily also met a Santa in Florida that was about her size.  She couldn't get enough of him.  She held his hands, gave him a squeeze, and looked deep into his eyes.  Santa's belly shook, but he never left the restaurant he was standing in front of.  Lily also found the elves below that she couldn't resist hugging.  

On this New Year's Eve, we are so happy with the progress Lily has made over the past year.  We are excited for the coming year and are currently in the process of setting goals for her next IFSP.  Each time we go through this process we are amazed at the progress she has made and all that we have to look forward to.   What will she be doing in six months?  It is hard to predict. 

Beach Angels

While Lily has not yet attempted an actual snow angel, she has now done a number of sand angels.   The sand in Florida was like powder which was nice and cool but couldn't be formed into a ball.  

We were were so happy Uncle John could join us and have Lily's full attention.  Since Lily saw John last, her words have moved from UnJon to UN-CLE JOHN - Usually called loudly.   

The last photo is of Lily singing in her first gig at a local Florida bar.  The musician, who claimed to know every song in the world, involved Lily in singing Feliz Navidad.  He recorded Lily saying "Hello Everyone."   Then he would sing Feliz Navidad, followed by Lily saying/singing "Hello Everyone" over and over again.  Very cute.  Lily was also engaged in shaking the maraca.  

Could we have ever dreamed or imagined Lily would sing her first gig at 2.6 years old?  Hardly. 

 

GWIZ - Hands On Science Museum

We visited a very cool science museum appropriately called G Wiz.  Lots of hands on science experiments including the ExploraZone which looked at electricity, magnetism, sound and light.  

Here Lily is testing the Hyperbolic Curve (putting a steel rod through a curve in a piece of plexiglass) and the timed Sprint Station with her Dad.  We avoided the static fields in the Plasma Ball that makes lightening.  Our surgeon had mentioned this exact object as something he has seen wipe kids maps off their CIs and damage their internal equipment.   

It was pretty noisy in the museum with all the machines, blowers and kids, but Lily didn't seem to miss a beat.  Lots to talk about and explore.  

 

Writing LILY in the Sand

For a kid from Nebraska, Lily has learned a lot of beach vocabulary: waves, ocean, salt water, sticky sand, shells, seagulls, on and on and on. 

We loved our Christmas trip to Florida to enjoy family and the warm weather.  The pictures below are of our first beach adventure.  When Lily sees the ocean, she now insists on taking her shoes off and dipping her feet into the water.  Advanced Bionics we need those waterproof processors now!!! 

In the last picture, Lily is writing her name with a seed pod over and over again.  She knows how to spell- L-I-L-Y.   Can you make it out?

Blog Friends

I am an active reader of many CI kid blogs but don't comment much.  Occasionally, in the early days, I would send off emails asking questions and hoping I too would have a CI Rock Star kid. 

One of our favorite blogs was and still is Turn on My Ears, featuring Drew and his amazing family.  We met them this summer at the Moog Parents Workshop, although I felt like I already knew them.  Then we had the opportunity to meet them again in Columbus, OH last week.  Drew is doing amazingly well.  

One of the first things that Drew's Mom said to us was something like don't you wish we could have fast forwarded to this day to know that they would be talking AMAZINGLY well already.  We could have saved months of crying in those early days.   YES!  Lily's Dad and I totally agree!!

Here are Drew and Lily talking about being "King of the World." 

We are also thinking about our friend Landri who we met through our Blog and was activated with her CI this week.  Can't wait to hear this little one tell us she's "King of the World."  It won't be long.

Outdoor Adventure at the Home of Arbor Day

We took Friday night dinner on the road this week and ended up in Nebraska City, home of Arbor Day.  It is an amazing little town, full of cool stuff to do and explore.  

The Arbor Day Farm Tree Adventure was one of the highlights.   We hiked the trails, climbed through tunnels, touched everything, ate lollipops, jumped on bridges, watched a waterfall and played with outdoor Marimbas.   Lots of outdoor language rich open-ended play.  I have a vision for an outdoor play space in our backyard.   Will need to put it on the "to do" list for this winter. 

This amazing play space is only limited by one's imagination and oh how Lily's imagination has blossomed in the last few months.  She'll pretend to fly on airplanes, drive cars, get candy, throw a ball, get out of a rain storm, talk on the phone, almost anything we can dream up together.  

The ability to pretend not only grows her mind, but also grows her language.  It enables us to have lots of conversations back and forth about what will happen next, who is coming and how it might taste, just to name a few.  What great adventures we have together. 

Journey Through the Sand Hills

I'm not a big country music fan, but I love the Dixie Chick song called Cowboy Take Me Away.  It must have been written by someone who had just spent time at a wedding in the Sand Hills of western Nebraska.  Here is an excerpt:

I said I wanna touch the earth
I wanna break it in my hands
I wanna grow something wild and unruly

I wanna sleep on the hard ground
In the comfort of your arms
On a pillow of blue bonnets
And a blanket made of stars

Oh it sounds good to me

I said cowboy take me away
Fly this girl as high as you can
Into the wild blue
Set me free oh I pray
Closer to Heaven above
And closer to you
Closer to you

I wanna walk and not run
I wanna skip and not fall
I wanna look at the horizon
And not see a building standing tall

I wanna be the only one
For miles and miles
Except for maybe you
And your simple smile

Oh it sounds good to me
Yes it sounds so good to me

A few photos (taken with my iphone out the car window) of the Sand Hills and our journey west, with a stop at the Niobrara River and Smith Falls.  

Ah the sound of rushing water and those on river tubes screaming Go Big Red.  Why must the two mix? 

Talking in Church

This weekend we trekked across Nebraska to a western wedding and then back to the other side for a 100th Birthday party.  Lily did very well on the eight hour journey in the car, only demanding to stop a few times. 

On the trip, we had a couple of strangers say to us, "Boy, she is a talker" and "She is so verbal for two."  Those unsolicited comments are quite fun. 

It also took all our tricks to keep her quiet during the wedding which was held in a small church.

One of the secrets was lots of M&Ms, which we now call L&Ls so Lily doesn't know what we are talking about.  However, then Lily was requesting the M&Ms by color.  "Blue one, Yellow one, Green one. More M&Ms please."   She also kept making comments during the ceremony like "Hi Dale," "I see him," and "More Music."  She was the only one to clap when the songs would end  (I always thoughts the Methodists were clappers).

Every step comes with new challenges, but these are quite fun.

My Favorite Panel at the Moog Center Workshop

One of my favorite panels at the Moog Center Parents Workshop was the Kids and their Moms panel.  We've seen a number of panels before, but this one really resonated for me because the experiences of these kids at seven, eight and nine were going to be most like Lily's experiences.   These kids were all implanted with CIs relatively young, they were all bilateral and were all educated with an Oral approach at the Moog Center. 

Each kid mainstreamed in the first grade and continued to do very well.   They all described their "best friends" when asked about a social life.   It was really moving.  Certainly the kids continued to have certain challenges like hearing in very noisy places such as the lunchroom and of course swimming.  (This topic always comes up so please Advanced Bionics, Cochlear and Med-El hurry up with the water proof CIs.)  These parents also had to figure out how to advocate for their kid in this new environment, after leaving the safety and security of the Moog Center. 

It really made me weapy to hear how these kids talked with ease and could answer questions from other parents that were posed from across the room.  It just reaffirmed for me that even though there will be lots of challenges, Lily is going to do very well.

Visiting The St Louis Magic House

One of our side adventures in St. Louis was the children's museum appropriately called The Magic House. This was one of the most enormous, extensive and original children's museums we've seen.  

Built around an old house, there were exhibits on three levels.  Unfortunately because there was no admission cost that night, most of St Louis had also come for a visit and the listening environment was horrible. 

Lily climbed, fished and worked on cars non-stop until it was time for our nightly ice cream or custard as they called it in St Louis.   The Magic House certainly gave us a lot to talk about.

Garmin GPS - Learning To Speak With A British Accent

This past week our family went to St. Louis to visit the Moog Center for an intensive workshop (more info about our experiences to follow). 

Since we're not from the area we borrowed my Mom's Garmin GPS system to get around town in our rental car. We programmed each trip around the city and it gladly spouted directions (although not 100% accurately). We set the Garmin's "voice" to speak with a British accent. Lily quite enjoyed it and after a while she began to imitate the words, "Turn Left", "Turn Right" at every turn. By the end of the weekend we began to wonder if she would eventually learn to speak with a British accent. Who knows, maybe we should use it more often ;-)

We Love the Beach

I Love the Beach has been the theme at Kindermusik this session, so actually going to the beach was the perfect opportunity to build on what Lily was learning.  Of course I love the beach as well; the smell, the sounds and the sunsets.  Reminded me in many ways of living in Hong Kong. 

We dipped our toes/legs in the ocean twice and Lily loved it.  She learned new words like ocean, beach, waves, shells, and seaweed.  She loved getting sand between her toes and putting all the seaweed in a big pile.  

We were really cautious about getting Lily's processors wet. One fall in the water and it could have meant trouble.  We did learn from our tour at Advanced Bionics that even the Body Worn Processors are pretty water resistant.  The real issue for the BWP is the headpiece taking a direct hit.   So with that knowledge, we monitored Lily's jumping in the waves, making sure she stayed upright when the water came in, but she was a little wet when we left.  

Hopefully the next time we go to the beach, Lily's processors will be totally waterproof and she can splash to her heart's content. If not, we'll have to resort to MacGyver waterproofing methods. 

Building Legos Building Language

After our visit to Advanced Bionics, we journeyed three hours south to Carlsbad, CA.  We found a lovely seaside community with great restaurants, a good beach, a fabulous Sheraton and of course Legoland.  It has a lot of Legos with a few kid rides mixed in.   Here are some pictures of our adventure. 

As you can see, Lily is non-stop action.  She loves to jump, go down slides and actually build with Legos. Lily received a a Lego Duplo set and tickets to Legoland from Grandma and Grandpa for her Birthday.  Thanks!!  There was so much to talk about and new adventures to discover.  It certainly had a major impact on her language. 

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.

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!

Pittsburgh Children's Museum - WOW!

There is an incredible Children's Museum in Pittsburgh, PA.  So many wonderful language opportunities with the wheels, trains, lights, birdseed, steps, pegs, on and on and on.  We even met another four-year old there with a CI and hearing aid.  Small world.   Thanks to our family who took us there.  Here are a couple of the highlights. 

CI Airport Security

When we go though airport security, I always have TSA pat Lily down, instead of going though the metal detectors.  This way, she doesn't have to take the CIs off and the TSA is more than happy to do it.  Lily is never thrilled about the patting, but it is usually quick. I have an official "I have a CI" card from Advanced Bionics if we are ever challenged.

Here are some quick facts about CIs and Airport Security.

Metal detectors and security scanners will not damage the implant or sound processor. However, individuals with a CI passing through security metal detectors may activate the detector alarm.  CI users also might hear a distorted sound caused by the magnetic field around the security scanner door or hand-held scanning wand. Turning off the sound processor before passing through security screening will ensure that those sounds, if they occur, are not too loud or uncomfortable.  TSA outlines the specifics.

X-ray machines will not damage the sound processor; however, x-ray machines have the potential to damage the electric microphones used in most cochlear implants and hearing aids. 

Spare lithium batteries, which CIs run on, are allowed in carry-on baggage if they do not individually exceed 8 grams (~100 Watt hours) of  equivalent lithium content. 

In addition, the FAA has confirmed that Advanced Bionics cochlear implant recipients are exempt from powering off their sound processors when instructions are given to turn off cell phones, music players or anything with an on/off switch. The FAA regards the cochlear implant in the Hearing Aid category and hence is exempt from being switched off.   For more information, see Advanced Bionics FAQ for air travel.

Enjoying Sedona, Arizona