Life is Bliss - Lily's Cochlear Implant Journey

Hawaii Adventure

We took a pretty awesome trip to Hawaii in March, to celebrate my parents' 50th wedding anniversary.  I'm not sure why it took us so many years to get to Hawaii, of all the places we've traveled to in the world, but the experience was very memorable for all of us.   Bodie asks daily if we can go back to the pirate ship pool, while Lily often recreates the luau in her grass skirt.   

Exposure to a new culture and a variety of new words like Mahalo, Ohanu, Aloha and whale breaching were amazing, as were the beautiful sunsets and time with family.  Not sure what we would have done without Lily's waterproof Neptune processors.  We were in the pool, ocean or the rain everyday.  

We're currently searching for a yellow hardy hibiscus, Hawaii's state flower, and now understand the theme of Trader Joe's much better.  Need to find an excuse to get back to the other islands, or maybe just revisit Maui and Honolulu.  

We took hundreds of pictures and are currently working to get the photos down to a manageable number.  Just posting a few here to capture the Aloha spirit, to thank my parents for a wonderful trip and to preserve an amazing experience.

 

 

CI Wear Shirts

Love the innovation of the family who created CIWear, an active wear shirt with pockets for cochlear implants and other electronic devices.  

Where to put the Neptune processors is a challenge that adults and children face.  Especially in the pool, ocean or even during a basketball game, CI users want the processors to be secure and the cords to stay close.

While swimming in a pool, we clip Lily's CIs on her sleeve then run the cords up through her shirt.  This new active shirt design looks even more secure.   Now if it only came in pink!   

 

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!  

Florida Adventure

Hot Florida days. Great Friends. Family.  Beaches.  Seahorses. Pools.  Bippity Boppity Boo.  Bliss.

A lifetime of memorable experiences to talk about.   (Is this better Philip?)

Funniest Quote:  "We're not ordinary Princesses.  Sometimes we're mean."

Swimming Lessons with Advanced Bionics Neptunes - A whole new experience

Here's another short video of Lily's swimming lessons.  I thought the video illustrated a couple of cool things.  First she jumps in the pool and her CIs stay on.  Then her CIs are underwater while her teacher is giving her directions and she can still hear.  And finally just that Lily can now "save herself" is fabulous.  

Every day I give thanks to the incredible scientists and engineers that invent this stuff, those who fund it and everyone else in between. Keep it up!!   Life changing!

 

 

AB Neptunes and running through the sprinkler

For the first time in her life, LIly ran through the sprinklers on a hot Nebraska Spring day.  At first she thought the water was freezing, but once she got the hang of it, she was unstoppable.  

Lily loved the experience thanks to her new Neptune waterproof CIs.  I loved the experience because I could still communicate with her, even in her wild and crazy state of mind.

Lily wears her Advanced Bionics Neptunes in the pool for the first time

We've started swimming lessons again now that Lily has her new Neptunes.  What a difference.  The swimming teacher is able to talk with her in the pool and even when she is underwater.  

The headpieces stay on fairly well, however for next week we've added a second magnet in each headpiece to make them a little more secure.  Lily wore the processors on her sleeves with the clip and we ran the cord through her shirt and up her back. The goggles went over the cords.  

There are so many pieces and parts.  I'm sure we'll get the hang of it soon.   

In the video below, Lily is playing on the step while she waits for her lesson.  

 

Advanced Bionics Neptune Cochlear Implants - A Dream Come True!

It's official!  Lily is the newest kid to wear Advanced Bionics Neptune Cochlear Implants.   They truly are a dream come true.  The implants are very light, sleek, small, and most importantly waterproof.  They will also support the new ClearVoice software which is weeks away from being approved in the US by the FDA (we hope!).

The following five videos show Lily trying out her Neptunes in the bathtub for the first time.  While she is apprehensive to actually get in the tub with her CIs on, she quickly adapts and then plays and talks non-stop.  

There are so many wearing options with the Neptune, we didn't know what to try first.  While Lily is always a bilateral CI wearer, in the video we tried one Neptune attached to the armband.  If she went swimming, we might sew little pockets on the inside of her suit.  Lots of wearing gadgets are included in the Neptune kit to experiment with like a headband, swimcap, armband, lanyard, and clip.

Make sure to watch all the videos and you will see the evolution of Lily's first water exploration.  Expecially facinating is Lily playing with her own voice.  She asks, "Why does my voice sound different?"  She also discovers the sounds of the bath like the faucet and blowing bubbles in the water.   Swimming lessons start tomorrow.  

We're filled with joy.   One more sound barrier busted!  Tears!

 

  

  

 

 

 

AB's Neptunes in the Water

Here's a video of a kid swimming with AB's Neptune.  Notice how she doesn't talk much without her CIs, but talks up a storm with her CIs. 

AB's Neptune Cochlear Implant Approved - WoooHoooo!!!

To say we're excited about Advanced Bionics's Neptune Cochlear Implant being approved by the FDA is an understatement!!!  Now how fast can Lily get one and get in the bathtub or the pool or the beach or get the next greatest thing - ClearVoice?  Let the the countdown begin. 

Advanced Bionics is thrilled to announce that the NEPTUNE™ sound processor has received FDA approval in the United States. Now AB recipients and candidates have the choice of a Neptune or Harmony sound processor for hearing their best with AB.

World’s First Waterproof Sound Processor
AB continues our history of innovation leadership with Neptune, the first and only SWIMMABLE sound processor in the world. Whether you or your child enjoy taking a dip in the pool on a warm day or bonding at baby bath time, Neptune delivers hearing during those important moments.
 
Industry’s First Freestyle Design
The lightweight Neptune processor features the industry’s first freestyle™ design, allowing you or your child to hear the world with the comfort and beauty of nothing on the ear. Neptune gives you the freedom to choose your wearing style—in your hair, on your arm, under your collar, or in your pocket—without compromising performance. Whether you want to show it off or tuck it away discreetly, the freestyle design lets you wear it just how you like.
 
Usability and Durability
Built Kid Tough™ for rugged use, Neptune is ideal for every age and every lifestyle whether you live in a humid area, love to swim, enjoy sports, connect in the classroom, or travel across the globe. Neptune carries an IP68 rating that offers maximum protection against solid particles and various forms of moisture, which means that you can hear your best in all weather, all sports, and all terrain.
 
Performance
To ensure you hear your best all of the time, Neptune is compatible with the industry’s most advanced hearing technology for the best possible hearing performance, including ClearVoice™, HiRes Fidelity 120™, and AutoSound™.

For more information

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.    

Back to Swimming Lessons

I've found the swimming whisper.  Lily's new swimming teacher Jodi is marvelous.  

Even without the aid of her implants, Lily is doing the back float, front crawl, back stroke, bobbing, rolling over and gaining tons of water confidence.   Her teacher Jodi gives Lily lots of smiles and high fives and is able to move Lily around the water very gracefully.   I've never seen it done better.  

During each lesson, LIly has made remarkable progress, with no frustration by Lily (or me) from not hearing.  We practice at home on the carpet and her teacher has created a few signals that we talk about before class starts.  

Lily even ranks swimming lessons above her dance class.  Amazing.  However, we are still waiting anxiously for AB's waterproof Neptune, hopefully out at Christmas.  Never been so excited for winter.  

 

Nature Preschool - Day 3

Lily's preschool teacher called to say:

• FM worked well.
• Lily has very good manners.
• Lily could identify "Goldenrod - the Nebraska State Flower.  Because her Grandma taught her that."
• On the  hike, Lily was 3-4 feet in front of the teacher.  After a different child finished telling the teacher a story, Lily turned and said "We do that at my house too."  Who said kids with CIs aren't learning through incidental hearing?

 

Swimming Lessons - No Problem!

Lily has successfully mastered one week of swimming lessons.  Although I had great apprehensions of Lily being in the pool without her ears, she has tackled it like a pro.  In fact I think it has been easier on her, than on the other little child in her class.  

With Lily, the swimming teachers are smiling and giving High Fives.  They don't have an option to use other "hearing tactics" like shouting out instructions such as "Put your chin back and kick your legs" or if you don't get in the pool your "Dad will leave." 

Lily blissfully floats, back crawls, kicks on the boards and jumps in the pool eagerly.  Quite fun to watch her young teachers work smarter to communicate.  Quite successfully I might add.  Both days they've said she has done awesome.    Lily will be swimming on her own in no time. 

From one tearful moment to the next :)

Swimming Time

It was so hot in Orlando that we swam nearly every day. Lily loves the pool and we are soon venturing into swimming lessons.  We take her CIs off in the water, because we just haven't figured out a secure method for waterproofing her BWPs and we don't have a back up.  However, we're working on it.  

It is very disheartening not to be able to communicate with her freely.  We now take it for granted.  Once her CIs are off, she does all the talking, never stops really, and we are certainly communicating, but I never realized how much language goes on while we are in the pool. 

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?

Float 4 Life - Lily's Swimming Adventure

Lily's been taking a Float 4 Life class.  I'd call it boot-camp swimming lessons (15 mins each day with a one-on-one teacher) where the goal is to teach babies and toddlers to float.   See this YouTube Video of the program. 

Lily is in the toddler or "little girl" program, as she prefers to be called.   Last week she learned to come up from under the water, turn over and float on her back.  This week she will learn how to turn back over on her tummy from the back float and then swim to the edge and climb out. 

It will be a truly amazing and life saving accomplishment if this works.  It's a little intense, with a few tears, but by the end of the week, she'll be able to save herself from drowning.  

During the session, I am supposed to hide.  So the picture is just to give you a flavor of swimming.  Lily is behind the basketball hoop with her teacher. 

As for her CIs, we've been taking them off right before she goes in the water and putting them on immediately after getting out of the water.  The teacher says most of the learning is non-verbal anyway.  The teacher does lots of smiling and clapping and said Lily responds with a "Yeah!"

Changing Lives and Swimming

I got a call yesterday from the Mom of Abigail who said, "You've changed our life.  Abigail is swimming with her CIs on.  She could hear at swimming lessons the entire time and the look on her face was priceless."   Everyone says you can't swim with CIs but some brilliant parents have figured out a way to seal the CIs in a plastic bag and attach it to the kid's head with a swim cap.  Works like a charm.  I learned this was happening from my favorite resource, the CI Circle, an online Yahoo Group.  There are 1500 people that chat about everything related to kids and CIs.  For new parents and professionals, this listserv is a must read.