Life is Bliss - Lily's Cochlear Implant Journey

Lily's Soccer Experience

Feeling like champions, Lily's soccer team wrapped up the season last week.  

It was a great experience, but also a challenge for Lily.   She enjoyed the running and kicking, but probably preferred cheering with her teammates just as much.  It's amazing how at this age some kids have incredible speed and ball agility already.  

We had the coach wear the FM during the practice and the game.  Most of the time he was across the field shouting or his back was turned when trying to communicate.   The FM made a huge difference in helping Lily to get an idea of what he wanted them to do.  Overall great experience.  

Family Fishing Fun

Fishing is fabulous when you catch a ton of fish and when there are helpers to "assist" with any fishing needs. This was our experience at the Rotary Family Fishing Fun day.   Lily even learned to fly fish.  Such a great experience full of memories and language like rod and reel, monofilament, Bass, Bluegill, flies, bobber, catch and release, etc.    

Experiences hearing on the Prairie

Lily and her preschool class took a "field" trip to the Spring Creek Prairie.  It was a beautiful day to listen to the frogs and birds, the wind and even the trains.  

The prairie guide provided a lot of instruction and guidance to the children during the tour, so we used the FM.  We were surprised when the guide told us that she frequently uses an FM with kids out there.  It was incredible to observe how much teaching involved whispering.  Thank goodness for the FM.

The two pictures below are of a "Velcro" plant that sticks to the kids' shirts and a snail.  Of course how can you hold and examine a snail without talking about its similarities to a cochlea.  

We have had a lot of discussions lately, driven by Lily, about her CIs and cochlea.  Various questions like why she has a CI and we don't, when can she stop wearing it, why she says "what" all the time, if her ears still work a "little," what advantages she has that kids with ordinary hearing don't have, etc. Even questions comparing herself and her buddies.  

I found myself explaining genetics to a four year old when another parent's explanation of "that is just how God made us" didn't satisfy Lily anymore.  Sometimes these discussions break my heart and sometime I think it makes her stronger and more confident.  

When she moves to a new environment with new kids, they always have lots of questions.  One little girl came up to me last week and said Lily had "plugs" in her hair.  Lily just says, "They help me hear" and moves on.  It's impressive to watch her make friends and build relationships in an instant.  At any park she'll find a kid and say "Do you want to be my friend" or "Do you want to play with me?"  She never fails to leave somewhere without a new "friend."  

What was I so worried about?

Bodie Snapshot

While Bodie is probably not getting a blog or drawers full of photo albums, here's a little snapshot of the kid.

Bodie:

- Has an infectious non-stop smile  

- Is very very relaxed unless he's hungry

- Grunts and closes his eyes before he nurses.  Smiles when he's done.

- Loves to be tickled and held

- Giggles when you put him above your head

- Has deep dark brown eyes that sparkle

- Spits up a lot (The doctor says "nothing a towel and gravity can't cure." Uggh)

- Is moving quickly up the growth curve with a double chin and big squeezable cheeks.

- Is starting to make a high-pitched baby velociraptor sound.  Even said Mama once.  

Life is much easier this time around.

Zan's Birthday

At Zan's birthday party last week, the girls piled in the back of the zoo train.  Auntie Heather squeezed in too.   This was also Bodie's first train ride.  I think he prefers to fly.  

The girls also got unlimited horseback rides.  Lily managed to wrangle four trips in honor of Zan's four years.  At least that is how Auntie Heather convinced her to stop at four. Life is pretty great when you are four.  What a party!

Advanced Bionics ClearVoice Report - The Car

This week we tested ClearVoice in the car, on a busy street, to understand how it works best.  

With the window open, the wind was blowing in Lily's face, and she could still hear me talking, actually quite well. This was quite novel for Lily because normally we would always drive with the windows up.

Thank goodness for ClearVoice and for beautiful spring days in Nebraska.  

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!

 

 

4 years ago - Hearing Birthday

Lily just celebrated her four year hearing birthday with a Spider-man coloring book.  Hard to believe.  We couldn't be happier with her progress.  She's more than ready for Kindergarten.  

She's also loving having a little brother and he's pretty pleased with her too.

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.

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.  

Lily starts micro soccer

This weekend Lily started pre-K micro soccer.  It is structured so the girls have a 25 minute practice, then a 25 minute game.  Soccer is pretty new to Lily so the explanation of corner kicks seemed to go over her head. However when she got home, she explained to us why and how to do a corner kick.  Amazing.

There were also some little girls who likely had older brothers because they were very aggressive and masters of ball handling already.  Lily enjoyed the experience which was the most important part.  The only challenge came when hearing the soft-spoken coaches who had no idea what Lily's cochlear implants were until after the game.  

Next time, we plan to bring the FM to help Lily hear the voice of the coach a little better.  You can see in the picture that Lily is likely missing what the male coach in the middle was talking about.  I think the female coach was doing a little "translating" for the blue team.  

And now with Lily's Neptunes, if it happens to rain during a game....NO problem!

Advanced Bionics Neptune Cochlear Implants - The Headpiece - Another benefit

Another benefit of the Neptunes are the streamlined headpieces.  Today we were finally able to get a helmet on Lily's head that didn't instantly knock off her headpieces.   We still have a few adjustment to make, but overall it is a huge improvement.  Lily hasn't even ridden her bike because of the helmet issue.  

Since spring/summer has come early, I have a feeling she'll be putting a lot of miles on her bike thanks to her new Neptunes.

 

 

Advanced Bionics Neptune Cochlear Implants - Programming - The beeping has stopped

Lily has excellent audiologists who make mapping her Cochlear Implants a breeze.  

The only big change we made in the conversion from BWP to Neptunes was turning off the audible alarm. Lily is a very good reporter when her CIs are off or not working.  So when she mentioned that she was irritated with one of her little friends always telling her that her CIs were beeping, we felt comfortable turning off the sound. 

The beeping has been a major part of our CI experience and we recommend it highly for little ones. In the early days, I thought the beeping would drive us crazy, but it turned out that the beeping was a huge help in keeping the CIs on at all times   

 

 

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!

 

  

  

 

 

 

Slides, gardening in the rain and Neptunes

Spring is officially here with the arrival of robins, daffodils, trips to the park and gardening in the rain.  

The weekend started with a trip to the park.  The picture below is of Lily's favorite slide.  It is actually the favored slide by most kids, but Lily loves it because it is metai.  This slide means not having to hesitate, because metal slides aren't covered in static and won't hurt her CIs as she sails down them.   Total piece of mind for Mom! Love our park.

The weekend ended with a little gardening in the rain.  My helper did a lot of playing/clean up as the drizzle came down.  I was very apprehensive about letting her stay outside too long because her CIs can't get wet.  

Next week, however, we will be looking for rain to stand in and puddles to jump in.  Why? Because next week, Lily gets her new AB waterproof Neptune CIs.   Woooo Hoooo!  To say we are excited is an understatement.  

Prepare for many posts about this life changing technology.  Prepare for endless pictures of Lily swimming and in the bathtub.   Prepare for lots of gushing about hearing in the water with a smaller cooler processor with much better batteries and headpieces and software capabilities and wearing options and ......tears!

 

Sweet Baby Bodie - 2 months

 

 

 

Nature Preschool - Bones

This is what happens when you send your kid to Nature Preschool. Lily brings an Owl Pellet home and wants to dissect it so she can match the rodent, shrew, mole and bird bones to the body part chart.  

When I expressed how disgusting this was, Lily replied that "they are just bones that the Owl didn't want." The only way I got through this was convincing myself that it was a language exercise.  Maybe Lily really will be a doctor and specialize in Orthopedics, although she is still certain she wants to be a mom or kid doctor.  

In other news, brother Bodie is growing, smiling, batting at toys, eating and sleeping.  Lily is very proud to be a big sister.  She expresses her love daily with lots of kisses and hugs.  Today she told me that "both kids get lots of attention."  The jealousy may have subsided a little.  We listen to Bodie's voice and already hear changes from grunts to vocal play.  

When Lily was eight weeks old, she already had hearing aids and we had made numerous trips to Boystown for hearing tests.  While nursing, I would listen to the feedback from the hearing aids, as they rested against my arm.  It reminded me of the sound my grandma made 30 years earlier.  I feel for the new parents who have to go through it.  

When I nurse Bodie now, I have moments when I think I just knocked off his CIs (although he doesn't have any).    Such a different experience the second time with a hearing child, although the basics are the same.  I didn't have a vision for the future for Lily at that time, but now I do.  Anything is possible.  

Recycled Christmas tree “Farm” encourages imaginative preschool interactions

(The following cute interaction was originally published in Lily's preschool newsletter by her teacher Suzan Haley. Preschool provides such great language opportunities and social interaction with peers.)

Lily pretended to buy a Christmas tree and asked for help getting it home. Sophie S. counted “1, 2, 3, 4 Christmas trees!” Niall tried to help Lily move the tree by grasping it by the trunk and pulling. The tree was so heavy that Addilyn pitched in to help too. The children worked together to move the tree close to the fence.

Lily said,“Hey guys, I need help standing this up.”

Sophie J. and Addilyn worked together to help Lily stand the tree up and lean it against the fence. The tree began to fall, so Lily asked Mrs. Haley to hold it up while she went to get a large rectangular block of wood to place near the base of the trunk. After positioning it, she went to find another block. She placed it near the trunk and said,“I think it’s going to stay.”

Mrs. Haley let go of the tree, but it leaned to the side. Lily and her friends continued to place blocks around the base of the tree until it stood without being held.

Sophie J. said,“Now we have to fix some more trees....and that one.”

Niall and Lily began moving another tree. Sophie J. asked for more helpers. Addilyn began to call for children from other areas of the NEC to come and help.

Sophie J. said,“We have to do teamwork.”

Lily selected another tree and rolled it down the hill. As Max walked through the area, Lily said, “We need help.We’re trying to get it up for the Christmas tree farm.”

Max replied,“I’ll help you”.

Lily directed as the children continued moving and placing trees along the fence. Addilyn and Lily placed wood pieces around the trunks while Niall added leaves and straw.

Lily said,“We’re trying to get all the trees up for all the people.”

The children successfully placed and supported four Christmas trees before leaving the area to go back inside. 

 

 

New Baby Bodie Graeme

We are excited to introduce our son Bodie Graeme.  He's a perfect little sweet pickle (as Lily calls him) and we couldn't be more thrilled.  The details...

What about the Name?

Bodie is a name we love.  It's happy, sounds good with Lily and doesn't come with a lot of stereotypes or rhyming words.  It's also not in the Top 10 most popular names.   Of course when we picked LIly, the name was not very popular and now it's likely in the Top 20.  We were going to call him Bodin, with Bodie for short, but why not just go with the nickname.  Bodin can be used for the serious situations.

Graeme (sounds like Graham) is a nod to Graeme Clark, one of the first inventors of the multi-channel cochlear implant, and Alexander Graham Bell.  Two people who changed the course of history for our family.  

In my reading about Professor Graeme Clark of Australia, they said he was called Crazy Clark, because his goal since the 60s was to help deaf people hear.  His colleagues doubted him and thought the goal was unreachable.  This story is a good daily reminder to me to believe and reach for the impossible. Never be detered if that is your goal and always say YES, even though it's much easier to say NO.  

I hope this name will give that determination to Bodie.  I know Lily's already got it.  Yesterday she was determined to go outside in 50 MPH winds and snow and fly her kite.  I said NO, it won't work.  She did it anyway, and wouldn't you know...the kite flew...twice.

Birth Story

The Birth Story is quite uneventful, in a positive way, compared to Lily's birth.  With a scheduled C-Section it was peaceful, planned, no drama, no NICU, and no tears.  Well, maybe a few tears of joy.  Everything was calm and quick.   Loved it.  

When Lily first met her new brother, she came in, climbed up on a chair to see him in the bassinet and introduced herself.  "Hi Bodie, I'm your big sister Lily."  So sweet.

Having another child

For years we never thought of having another child, because we didn't want to take our focus off helping LIly succeed.  At some point, as Lily's abilities have skyrocketed, we felt that adding another child to our family would only enrich our experience and Lily's life.  Hearing or not, we were prepared to take the hearing journey again, if need be, and we would meet every need of this child as we have for Lily.  

Nebraska's Newborn Hearing Screen

In Nebraska, the Newborn Hearing Screen is a state mandate (with no enforcement).  Today, approximately 99% of all babies born in Nebraska are given the hearing screen, with about 50 babies annually having some sort of hearing loss.  

About 50% of the hospitals, including ours, are using ABRs for their initial screens.  ABRs have a much lower refer rate (4%-5%) than a tradition OAE (8%-9%).  A refer rate means "failing" the test.  Failing could be for other reasons, besides hearing loss, like fluid in the ears.  A reduced referal rate means a lot fewer parents have to go through the emotional journey of understanding if their baby can hear, reduced cost and reduced use of limited resources.  Bodie passed.  

Is there a difference?

With a newborn baby, it's extremely difficult to tell if the baby is hearing.  Especially for first time parents, if you are not watching for a reaction to sound, you just might miss it.   We see Bodie and LIly with very similar baby behavior, but you can see that Bodie quiets to the Shhhhh sound and reacts to many noises.  

I have noticed that we've gotten used to making lots of noise while Lily sleeps.  Unfortunately or fortunately, gone are the days when we could turn up the TV or music, bang around, cough or vacuum. Restful sleep is a definite advantage for LIly, espcially when Bodie is wide awake in the middle of the night.  

Language

I am very interested to watch Bodie's language develop.  We've been trained by some of the best language pros in the country, and talking everyday all day and creating good listening environments is what we do.

A few Lily quotes

"It's great to be a big sister. "  And this morning, "It's hard to be a big sister.  I don't get any attention."  

TEDMed Talk by CI Surgeon - CIs and Music

Very interesting TEDMed talk (16 mins) by cochlear implant (CI) surgeon and musician Charles Limb, associate professor, Otolaryngology, Head & Neck Surgery, at Johns Hopkins.  He explains the challenges of CI patients hearing music and the brain research that is being done to help restore the full range of human hearing abilities.  The talk even shows a video of a cat with a CI responding to a trumpet. 

Lily loves music and has recently figured out the phrase "That song is stuck in my head."  Her newest trick is dancing around the house singing "I got the mooooooooooooves like Jager" over and over again.  More focus and attention on music therapy would be an incredible addition to the speech therapy that now helps kids with CIs learn langauge. 

 

Visit to Santa

Lily visited Santa this year on the first day he arrived.  A little shy at first, Lily informed Santa she would like a pogo stick and a pink sled.  She later remembered she forgot to tell him a bike (already purchased), so she followed up the visit with a letter that she wrote (Dear Santa   I want a bike    Love Lily.) She said the period was so Santa knew the letter was over.   

When Santa asked if she's been good, Lily informed him that she had been a very good helper that morning putting up all the Christmas decorations.  

Communication was easy.  Mom and Dad just stood back and watched the magic happen.  So much to be thankful for this year. 

Preschool art experience

Lily's preschool class has been working with an artist on screen printing.  Here Lily is with the artist describing her masterpiece (flower and bird). 

All kinds of new vocabulary was included like squeegee, silk screen, color theory (red and yellow make orange), etc. 

Lily's teacher gave the artist the FM, which made listening easier for LIly when the artist discussed each child's artwork/t-shirt design. 

Exposure to different experineces and language is so important.  This was a unique one. 

Pre-Halloween Fun

Halloween has become a wonderful week-long celebration this year with many parties and events to attend.  Lily's costumes have included both a puppy and a turtle.  Mom's preference is the turtle because there is nothing over her CIs.

We also attended a family art night where we were given a clay pumkin and then were encouraged to transform it into anything.  Thus the creation of the Halloween Fish, Black Cat and Witch.  Any guesses as to who did which one?

Videos: Lily's language development 9-48 months

Lily was a participant in a longitudinal study in the Language Development Lab at Boystown National Research Hospital, directed by Mary Pat Moeller, Ph.D. The visits occurred between 9 months and 48 months old. Lily received bilateral Advanced Bionics cochlear implants at 10 months old.

9 months old

 

12 months old

 

15 months old

 

18 months old

 

21 months old - (21 month report)  (22.5 month report)

 

24 months old - (24 month report)  (25.5 month report)

 

30 months old - (30 month report)  (32 month report)  (34 month report)

 

36 months old - Receptive language test  (36-38 month report)

 

42 months old - Language test

 

42 months old - Sounds

 

48 months old - Final Language Test

 

 

UW Madison's Binaural Hearing and Speech Lab - Research with CI kids

We spent the last few days at the University of Wisconsin's Binaural Hearing and Speech Lab.  This was our second visit and it's always eye-opening to understand how Lily is hearing. 

Over 2.5 days, Lily participated in a variety of hearing games including:  identifying words and sounds in noise and quiet from various directions, language comprehension, speech perception and production, and non-verbal IQ.  These games were broken up with lots of breaks, stickers, contests and prizes which were real drivers for Lily. 

The researchers that performed the tests were wonderful as well.  They were all  women working as professors at the University or on their undergrad, graduate and post doc degrees in speech or audiology.  And all were focused on careers with CI kids.  Wonderful to see the future of this emerging industry.  Thanks to Shelly, Christie, Kristie, Shelby, Yi, Sara and Sara for all your great work.   

Our observations of the research are that nosie significantly impacts kids' hearing, localization is hard for CI kids and Lily is doing fabulous with her speech, language and listening.  Lily's actual results will come in a month or so.

Here are some pictures of our experience. We also made stops at the Madison Children's Museum, the free Madison Zoo and State Street (downtown hotspots). 

For every family that can make a trip to participate in this research, we highly recommend it.  Check out the UW website for more information. 

Family photo shoot

Photos by Loveequals

Preschool Update

Lily is now in her second year of mainstream preschool.  She attends two different preschools and is loving it.  She has grown from a more reserved three year old, to a eager four year old answering and asking endless questions.  

For Lily's new preschool this year, we (my public school SLP, TOD and I) met with the teachers before class started and discussed good teaching strategies for kids with hearing loss, as well as "how tos" with her CIs and FMs. It's the "how tos" and the "this could happen but probably won't" that scares the teachers the most.  We also asked the preschool to use static spray on the plastic slides and plastic play structure.

They took it all in, asked great questions and have placed static spray around the building :).  We've had no problems with the CIs or FMs at preschool.  In fact one of her teachers said she loved the FM.  Great to hear.   I love the FM too.  Such a great tool, especially in noise.  

Already during the second week of preschool, Lily was eager to serve as a host for a new student, showing her the ropes. Lily's made lots of new friends and is off to a great start. 

We continue to work with our public school SLP three times a month, through home-based services and have a TOD visit once a month, typically to Lily's preschools or on-call for technology issues.   This has been a perfect fit of services for our family and has helped Lily to thrive.   

Service above Self

Loved helping with the annual Rotary International Student Picnic.  Students were there from over 40 countries.  Applying Rotary's motto of Service Above Self.   Did some hearing consultations at the same time.   

Talk/Listen - Our Mantra

At a recent Big Omaha event, this photo was our "Message to the future."  Listening and spoken language is always on our mind.  Such a clever idea for engaging attendees.   See facebook.com/writeourfuture. 

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.

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.  

 

Happy Fourth of July!!

Fourth of July always means flashbacks to when Lily was just three weeks old. We sat on the deck, while these incredible "BOOMS" went off around us.  She had no reaction.  We just sat there and knew something was wrong. 

Flash forward four years.  We sat on the deck and Lily didn't stop talking.  In just a few minutes, we heard...

"Now everyone in the whole wide world can see the fireworks."

"I'm a cricket."

"Are fireworks power?"

"I'm a little scared but it's fun.  I'm coming over there so I won't be scared."

"Wow!  There's a purple one over there."

"What is that light coming across?"

"I want milk, but Dad is not going to get me any because he didn't hear me."

"There's another colorful one."

"Can you read this part to me."

"What a great day.  I'm squealing for joy."

"Let's pretend we're at Kim's house and I'm a little girl."

"Did you hear another one go 'eeeeeeeehhhhhhhhhh'."

Trip to the Zoo with Friends

We had a great trip to the Zoo with Aunts Tiffany and Gretchen and kids.  By the end Lily had declared they were all her best friends.  So nice to see them.

Happy 4th Birthday Lily

Awesome Yo Gabba Gabba cake crafted by HyVee!!

Brithday Party celebration with her gang.

Lily loves her Boogie Ballet class. She is on the right with her new tutu dress from Aunt Kelly and Uncle Eric.    

Last Day of Nature Preschool

Trying to get caught up.  Here are a few pictures of Lily's last day at Nature preschool.

Lily's 3rd Hearing Birthday

We had so much to celebrate, we decided to journey to San Francisco for the party. Not only was it our anniversary, but it was also Lily's third hearing birthday.  

It's hard to believe three years ago as her Cochlear Implants were activated, we were hoping to see a response, any response. Fast forward to today. Life is so normal, actually better than normal.  Lily says amazing things like "Can you flare your nostrils" and "we are the same height."  

The only thing that seems different is she beeps at the end of the day when her batteries run down (I suppose we all beep in one form or the other when our batteries die). We are thankful everyday for the miracle of her Cochlear Implants. No one even asks us what they are anymore, but we love to talk about them if they do.

Lily did try and explain to a stranger on the ferry that it was her "hearing birthday and that she has CIs that are stuck to her head with magnets." The stranger just smiled, having no idea what she was talking about.  I just smiled, knowing very well what she was talking about. Lily's Cochlear Implants have allowed her to live fully, without missing a beat, in the hearing world. 

Lily is certainly maturing into a little, or as she sees it, BIG girl. You'll notice the high-flying trampoline that she wanted to do "for her birthday." Absolutely no fear. She flew up in the air about 20 feet as she was strapped to a harness, over and over again.

We also got to see our dear friends in Napa and SF. Thanks for all the hospitality.

One of the best ways to teach new language is through experiences and San Francisco offered endless opportunities for this.  From the great food at Fang's to the various forms of transportation (no a ferry boat does not have wings), from the children's museums to the public art work, we loved it all.  

 

Covergirl on new photography book

Great new book called Your Camera Loves You by Khara Plicanic.  Our family photo made the cover.  Fun!

Talking to turkeys and other outdoor adventures

A perfect day at the park with Grandma, Grandpa (Thanks for coming to visit!) and a few wild turkeys. Fortunately we didn't get any pictures of the owl eating the mouse.  Lily described it as a mouse filled with peanut butter and jelly.   You get the picture.  

Omaha Hearing School....How do I love thee?

This weekend we attended a fabulous fundraiser for the Omaha Hearing School.  It was at the top of the Midtown Crossing Condos overlooking the city.  A perfect space, with fabulous food from local restaurants, a giant deck with temperatures like bath water and a packed room of supporters.  

At the end of the evening, the Director asked if we would address the crowd and tell Lily's story.  

Talking about Lily comes easy, as did my gratitude and thanks for all the support we've received.  Since Lily was two months old, we've worked weekly with the Omaha Hearing School.  They've shaped the way we teach Lily to talk and listen, with remarkable results.  They've provided unending support for our family.  They've set our goals higher than we ever thought possible.  

After Lily turned three, driving to Omaha for the mainstream preschool twice a week has been a major commitment. However, we sleep well knowing Lily is in an incredibly language-rich environment with great acoustics, and teachers who are highly skilled and committed to maximizing the technology.   The Omaha Hearing School staff is extremely flexible to Lily's needs and they take parent input seriously and act upon it. Dreamy, I know!

After we spoke at the event, a Omaha Hearing School graduate spoke, who is now age 26.  She is a gorgeous young woman who graduated from college at the top of her class and is a successful CPA.  Her family still generously supports the school and feels they can never "Repay" the school for how they have helped their daughter. Her Dad gave us a squeeze and through a few tears said he agreed with everything we said.   Pretty special.  

To any of our readers who want to invest in a organization that changes lives, here's your chance.  The Omaha Hearing School is an incredible 501(c)3 which is making a major difference in the lives of kids who have hearing loss in Nebraska and the surrounding area.  We hope you will consider a contribution.   

Funny Faces

Communication can take many forms.  These two engage with funny faces.  We are fortunate to have such a long and special friendship with Kam and Yvonne.  

3 going on 16

As Lily was snuggling in my bed last night, she instructed me to look at her and say, "Oh look at my baby doll. She has fallen asleep."   When I repeated her phrase, I added, "But I thought Lily never got tired." She opened her eyes and said, "I was just tricking you Mom."

Drawing Uncle John

Although Uncle John is so far away, Lily thinks about him often.  Here is her drawing of Uncle John, with a little bit of help from Grandma.

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.

Silly Lily

A Valentine's Day Miracle - Tears

Last night  I was feeling sorry for myself and Lily after swimming lessons.  The same teacher doesn't show up each week, so we have to go through the fact that she can't hear in the pool.  This impacts how they teach her and how she communicates with the other kids in the class.  Lily loves swimming but it breaks my heart to have to take her CIs off in the water. (Note to Advanced Bionics - Please develop something waterproof ASAP!!!!)

Then we went to dinner for Valentine's Day and something remarkable happened.  There was a group of men, that turned out to the be the Lincoln Continentals, who were singing together enjoying the evening.  They were dressed in tuxes and in true Barbershop style, they sang sweet harmonies.  We were a few tables away from these men, but Lily could hear them singing. 

After a few songs, Lily asked her Dad and I if we thought they sang "Bring Back My Bonnie to Me?"  We had no idea where she knew this song from and no idea if the men could sing the song.  The next thing we knew, Lily said, "I am going to ask them if they can sing Bring Back My Bonnie."  She hopped out of our booth, walked across the restaurant and looked up at the men and asked "Can you sing Bring Back My Bonnie?"  The guys looked around the restaurant for her parents, found our eyegaze and said "Hey - Not fair sending your kid over to request a song."   We yelled, "this is all her idea."

The next thing we know, the guys are at our table singing "Bring Back, Bring Back, Ohhhhh Bring Back..." Then they told us we were going to be in trouble when she got older because she was so cute and so persuasive.  Could the evening have been any better?  This picture captured how we were all feeling.  Thank you LIncoln Continentals.  You have no idea how much that meant to us. 

 

Sesame Road Show

We have never been to a kids road show before, but when Sesame Street and Elmo came through town we had to get tickets.  Lily was mesmerized with the whole thing. The show was nice and loud, however, talking monsters who don't actually move their mouths at the same time are tricky to watch.  Most of the monsters came by our seats and gave the girls hugs and high fives.  Definitely a highlight.  Very exciting.