Life is Bliss - Lily's Cochlear Implant Journey

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