Life is Bliss - Lily's Cochlear Implant Journey

Softball and Horseback riding

Lily had a number of new sport experiences this summer including softball and horseback riding.  

In softball, Lily liked hitting the best and was very good at it, but thought fielding was a bit boring.   She likes action.  It was fun to see her progression through the summer.  Fortunately her primary coach was the husband of her first-grade teacher, so I'm sure he'd already received lots of lessons in hearing.  :)

We watched carefully how hearing impacted the game.  Certainly Lily had to watch and listen to the coaches more carefully, and I'm not sure if she could always tell where the ball was hit or caught based on the sound of the bat or ball hitting the gloves.  Such small sounds in such large spaces.   We didn't use the FM for softball, but if this was the pros, we'd definitely consider it.

Horseback riding was a a wonderful experience as well.   Lily was ready to be "unleashed" on day two, although the teachers had other ideas.  The riding was slow and gentle, with lots of confidence building time.  While the farm was fairly quiet, it was challenging for me to educate the young teachers on the fly.  

On the last day, one of the Moms of the other students came over to me and said I see Lily has Cochlear Implants.  Instantly I wondered what her connection with the "hearing" world was.   She pulled her hair back and said, "I have one too.  I was implanted after college and have had it about 15 years."  While I was amazed, Lily thought it was only mildly interesting.  Having CIs doesn't seem that unusual to her.  

Seventh Birthday - A Frozen celebration

Lily celebrated her seventh birthday in June.  

Of course Frozen had to be the theme at both her kid and family party.   During the kid party, which was held at a local theater, Lily was able to live her dream of performing as Princess Elsa in a reinactment of "Let it Go."  It was quite a show!

We're blessed to be surrounded by so many family and friends.

Understanding Harry Potter

After being invited to a Harry Potter birthday party, we figured that Lily/we needed to get up to speed on all the lingo, names, potions and culture surrounding the book series. 

Since that time, Lily has read the first Harry Potter book and watched the movie.   There are so many details, stories and characters to remember.  I can't keep them all straight.  After the party, Lily came home and turned our foyer into Diagon Alley, a street where Wizards buy their tools. Note the hat, cape, wands, owls, potion books, etc.   Such imagination and a switch from the "Lily's Rainbow Spa" which is a permanent fixture in our bathroom. 

 

 

 

Barriers for children with hearing loss K-12 in the classroom

New report released by the Laurent Clerc National Deaf Education Center at Gallaudet University to describe the barriers that children with hearing loss aged birth to 21 face in the classroom and with school administration.

Long-term improvements in oral communication and peer relations in children with CIs: parental testimony

New study out of Penn State showing long-term positive outcomes of cochlear implantation. 

The research shows that on average, children improve in oral communication skills and have better peer relationships years after implantation, rather than immediately after. Even implant recipients who performed poorly several years after the procedure continue to improve....What helps deaf adolescents cope in middle school? The findings of their study suggest that deaf children should be supported in their early development to build healthy levels of self-esteem and confidence. The degree to which implanted children are accepted by mainstream schools – whether they are understood by their teachers and peers – can also help improve their peer relationships.

 

A purpose? We found it!

I haven't posted forever, but think I'm coming up for air now.  I ran across this post on a blog which I've followed for a number of years and thought it perfectly captured how I'm feeling now.  We met this family at AGBell last year.  Just substitute Lily's name and I could have written it myself.  However this Mom has boy triplets who are seven-years-old (one of which has CIs and one with hearing aids) and one three-year-old girl with her own set of challenges.  The family is amazing.  When does she have time to blog?

http://thelawrencetriplets.blogspot.com/2013/10/a-reason-purpose.html

Her blog post is titled "A Reason, A purpose?"  And I think it captures a big part of Lily and my purpose, at least right now.  We've connected and mentored and been mentored by so many families around the world and in our hometown, many of who have become very close friends.  And many who have gone on to mentor others.  Which is amazingly cool.  Families almost always thank us for giving them "hope" which is so desperately needed, especially in the early days.  

It seems everywhere I go, we are introduced to people with hearing loss or people with children with hearing loss.  It may be fate or our network crossing, but it truly is some of the most satisfying work I do.

Lily inspires them all.  She too, like Cormac in the blog post, has a love of life and the ability to inspire others.  She also has a great skill at listening and spoken language, something we've focused hard on since she was two months old. It's paid off.

She received all 4s, the highest grade in Language Arts, which is dreamy. Her reading test, after the first quarter of the first grade, placed her at the end of the third grade. She could read beyond this, but began to lose some comprehension.  She also received 4s in "Confidence in Self" and "Singing," among others, which is pretty awesome. These are both areas which we have worried about for years.   

But I also see Lily's 22-month-old brother listening with ease, picking up words out of songs on the radio and speaking in four-plus word sentences already.  He probably knows more than 500 words.   At the the same point in Lily's life, she was not yet putting two words together, but she knew 200 words or so and we documented each one.  That early childhood hearing matters.  Lily's certainly caught up, but we certainly can't let up.  

Lily struggles hearing especially when it's noisy or kids have soft voices.  I watch how much she misses when I volunteer in the classroom or when Lily is outside the school.  It's tough.  

One Mom told us she used to tell her daughter with CIs, who is now in high school, just to run after the girls when they run, even though her daughter had no idea what game they were playing or why they were running because she couldn't always hear the conversations.  The Mom said the girls would make it very clear if they didn't want her daughter there.  I think that was pretty good advice. :)  

Bright Lights Farm Camp

Last week, Lily attended the fabulous Bright Lights Farm Camp.  Run by a retired kindergarten teacher with 37 years of experience, there was a plan, vocabulary, instruction time, songs and free time.  There were areas to pet chickens, ducks, goats, pigs, and cats.  Kids could brush or ride horses.  They could fish in a stock tank with nets or build things in the workshop.  At the end of each day the kids even wrote in their journals.  

If you enlarge the picture below, you can see how farm camp could be a very difficult listening situation. It was partially in a metal barn, with open doors and cement floors, and 30 kids.  However, the teacher wore the FM and even when her face was turned to the back wall, Lily, situated in the front row, could still hear her well.  

Challenges came when there were guest speakers and the lead teacher forgot to pass around the microphone.  For example, Lily missed all the information about the bull.  She just couldn't hear it. Overall, Lily ended the week with a ton of great farm experiences and language.  Not too bad for a city kid loaded up with technology.  Life is pretty normal/extraordinary.  

Pinkalicious - Community Theater

We recently attended a fabulous community playhouse show called Pinkalicious starring Lily's good buddy Emma.  In the dedications, Emma gave Lily credit for inspiring her to try out for the show because Emma only loves red, while Lily loves pink.  Certainly Emma has inspired Lily to do many things like getting involved in theater. 

Fortunately the theater was quiet and the actors wore microphones.  Lily didn't want to miss a single word!

 

 

Holidays - Looking back and forward

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

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

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

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

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

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

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

 

Bodie's first birthday

Mannheimsteam Roller at the Lied

Putting reindeer glitter out on Christmas Eve. 

Husker basketball game to watch Uncle Philip's band

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

Bodie is very busy these days.

Service above self starts early. 

Halloween Adventures

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

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

  

CI Traveling Awareness Bear - A visit from Christi

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

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

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

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

Playground CI explanation and competition

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

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

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

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

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

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

Butterflies, flowers and Spiderman - A Birthday Celebration

As you could guess, Lily designed her own fifth birthday cake. Her vision incorporated her latest passion for Spider-man with a butterfly and flower theme.

I can't believe Lily turned five years old.  On the morning of her birthday, when Lily first woke up, her eyes got big and she said, "I'm going to go measure myself."  We couldn't be more proud.  

Lilies in the garden

One of the benefits of being named Lily is of course the lily flowers that come in incredible shapes, sizes and colors.  Lily has received many wonderful varieties from special friends over the years, which now grow in our lily gardens. The lilies below are standing over five feet tall with no supports.

Lily and her SLP Carole

Carole has been Lily's speech teacher since she was 10 month old.  That means we've seen her approximately every week for four years.  Now that Lily is almost five, she will move on to very limited speech services in her elementary school this fall.  

We are truly saddened to have to say goodbye to a wonderful resource and friend.  Carole's been positive, supportive, creative, resourceful, engaging and connective.  She taught us so much about speech, ourselves and about life.  I hope we were able to teach her a few things too.  

Carole is definitely a big factor in Lily's success and we thank her from the bottom of our hearts.  

Lily and her friends

A couple recent photos of Lily and her pals.  We couldn't be luckier to have such wonderful friends.

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?

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!

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!

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. 

 

 

Making friends and comments from strangers

At the zoo last week, we ended up touring/playing with a lovely family who had a four-year old boy.  Lily and this little boy became fast friends.  The Mom never asked me what the things on Lily's head were, but instead kept saying that Lily now had an admirer and that she thought Lily may be "class president or maybe president someday because she made friends so easily."

Typically comments from strangers are a little odd.  This one was just perfect.  Thank you. You made my day. 

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.   

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!!!

 

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.

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.  

 

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.  

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.

Hollywood - Meet Lily Bliss (Video)

Lily has been in numerous Cochlear Implant research videos, but this is her first staring role in a commercial endeavor (It's obvious I am in a supporting role here).  I am certain HOME Real Estate will receive tons of new inquiries and deals based on this moving bedtime scene.   :)

 

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!

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.

First Dance Recital - The Glorious FM

After three dance classes, Lily had a dance recital.  We had planned to give the FM to the teacher so at least Lily could have some idea what was going on.  There was no way to hear anything in a big gym with 20 kids and loud music playing.  

Because of all the chaos, and the fact that the teacher was standing next to the little ballerinas and not in front of them, I decided to keep the FM. Then it dawned on me.  I could watch the teacher and tell Lily the steps.  Of course this would be a great plan, if we had discussed it prior to the performance, but this is all new territory for us.

I turned the FM on and started repeating the steps.   Lily made all the right moves, or at least the ones I knew how to describe.  In the middle of the song, the teacher saw that Lily and her "soul sister" were in the very the back of the group, where they couldn't see anything, and quickly put them front and center.  It was adorable.  

For the next song, the FM strategy worked just as well, until Lily says in a very loud voice "Mom - where are you?" She could hear my voice with the FM, but she had no idea where I was in the audience.   I whisper that I am in the back under the basketball hoop.  She sees me and there were big smiles.  

I'm sure this won't work as well when she is a teenager.  I can already hear her say, "Mom, please get out of my head!!"

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)

Singing and Dancing for The Alexis Verzal Children's Hospital

Lily loves music, so dancing and singing to the String Beans, was a highlight last week.  Lily described Curt as a "lonely bean" because he is the only remaining Bean still performing.  She even recognized the music to "I think I need a Bath" before I did.  Her music appreciation and developing skills are beyond our wildest dreams.   

We were there to attend a Holiday Book Drive for The Alexis Verzal Children's Rehabilitation Hospital of which we are huge fans.   Alexis and her family have become friends, as have a number of the staff members at Madonna Rehabilitation Hospital.  My Rotary Club even raised funds to develop a Sensory Therapy Room.  What an incredible place. 

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!      

 

Harvesting the Apples - Bees, Dogs and Hogs

Another great apple harvest at our friends' farm.  It always makes me want to plant some fruit trees or get a chicken coop.

Lily got her hands "dirty" this year.  She washed the apples and put them into the antique press. She strained the fiber from the juice, then poured it into the jugs.  Finally, she yelled "stop pouring" at the exact moment.  Lily also loved peeling the apples with the peeling machines.  She seemed to hear it all. 

Her favorite moments were ridding in the horse-drawn carriage and drinking the apple juice which she "helped" to make.  Lily wanted to experience everything with little fear of the bees, dogs or hogs. 

I have no doubt we will be hearing about Farmer Fred, the chickens and the delicious apple pie for quite a while.   These are such authentic life experiences that make kids (and adults) understand about real food, as well as how a community can come together to make quick time of a big job.  We are so happy to be a part of it. 

New Technology Helps Nebraska Teen Stay on the Field

Check this great article out about our friend Cory Honold, fellow Bionic Ear Association mentor, who helped a high school student play football with his CI on in Columbus, NE. 

Camping Skills Revival

To revive our camping skills, we took a little mini camping trip to a local state park with lots of amenities like restaurants, swimming pools and craft centers.  A great compromise for those of us who don't prefer to rough it.  

It was very hot.   Here are a few photos of Lily at the playground and in the craft center where she got to use real paint on a "Tigger."  It was brown, then yellow, then blue, then brown again.  Lots of swirls.  Very Monet.   

Fun experiences

Summer Fun!

1)  A trip to the Butterfly Garden.  The people behind Lily started talking about Cochlear Implants and how amazing they were.  They said their nephew in Idaho had CIs and that he was doing great.  Turns out we knew their nephew.  Small world.

2) Horse at the grocery store.  They gave Lily a token at the checkout counter.  Couldn't walk out without passing it. 

3)  Having a wonderful lunch with Auntie Heather and Ivy.  

AG Bell Adventure

A few weeks ago we were fortunate to attend the Alexander Graham Bell Association Conference in Orlando.  It was fantastic.  We were surrounded with kids and adults with Cochlear Implants and hearing aids and the teachers and audiologists who support them.  

We attended fabulous educational sessions, like stem cell research, working memory strategies and LENA research studies, as well as volunteered as Bionic Ear Association Mentors on behalf of our Cochlear Implant manufacturer Advanced Bionics. 

In Advanced Bionics' booth, we were able to talk to families and professionals about our hearing journey.  We were able to give back and talk face-to-face about something we feel so passionate about.  We were also able to dream about what will be available for Lily in the future. 

While this was only the second time that we attended this conference, it seemed like we saw many old friends.   There were many returning families with young children like Lily, as well as teachers from the Moog center, staff from AB, thought leaders and researchers like Carol Flexer and icons in the AG Bell/Oral world.  

We also saw Lee Woodfruff, wife of the ABC news anchor Bob Woodruff who suffered a Traumatic Brain Injury when he was covering the war in Iraq.  Lee didn't however talk about her husband at this event. Rather, she focused on her daughter who has a hearing loss.  She told us the story of her daughter's diagnosis to receiving hearing aids, all the therapy and stress in between, and how her daughter is doing today.  It was such a similar story to so many in the crowd, that I think most of the 1500+ people in attendance were in tears.   It was quite moving.

Her book, Perfectly Imperfect (see it posted in the left column) is a great read full of stories and journeys of a wife and mother facing dozens of challenges along the way. 

We returned home feeling rejuvenated and excited about continuing with Lily's hearing journey. More posts to come with details of the sessions and our fun time at Disney. 

 

Happy 3rd Birthday

Lily turns three today. She had a great birthday party yesterday, featuring this princess cake.  We are so fortunate to have the support of our family and friends.  This year Lily was able to tell us what type of cake she wanted in great detail, converse with her friends and let everyone know when it was time to open presents.  Can't wait to see the surprises next year will bring. 

Getting Ready For AG Bell

 

The AG Bell Biennial Conference is coming up in three weeks, June 25-28, in Orlando, Florida. For those of you still on the fence about attending, we'd highly recommend it. We went two years ago when it was held in Milwaukee a couple months after Lily's CIs were turned on. It was a fantastic meeting place to get one-stop access to experts in speech and hearing loss with informative seminars, research and exhibition areas. Couple that with the opportunity to meet individuals and families living the "hearing journey" and it was a no-brainer for us to attend again. 

For those of you already planning on attending, drop us a note or stop us in the halls. We'd love to meet up and say hello. Lily will be there and we'll be volunteering at the Advanced Bionics booth as well. We're looking forward to a great conference and some fun with Mickey and friends. Hope to see you there.

Soul Sisters

These two Soul Sisters are quite a pair. Ivy will do or say something and in the next breath, Lily will have learned it and incorporated it into her vocabulary or actions.  You can see in the picture below, Lily watching Ivy's every move.  Ivy even puts Lily's CIs back on when they get knocked off.  Ohhh the teenage years.

Narrating Your Life

One of the things we learned early on in our hearing journey was to expose Lily to as much language as humanly possible. What this means essentially is that you have to narrate your life (The who, what, why of what you're doing, seeing, hearing). Well I guess we've done a decent job so far since Lily's language and sound recognition results have been amazing to us and others. 

Narrating our lives has become such the norm that Lily has picked up the habit. On the way to the park yesterday, here's a little snippet of the things Lily "narrated:"

"We're going to the park. Time to get into my stroller."

"Look at the beautiful sunset. I need my sunglasses. We left them in the car."

"That girl is on a scooter and that one is on a bike."

"Those two boys are playing basketball."

"What's that noise. It's a dog barking. Maybe its Tango."

"I want to swing on the tire swing."

"I'm really tired."

Indeed. Sometimes I have to reflect on each word and think about how far we've come, and look forward to the words and journeys that lie ahead. 

The marvels of cochlear implants, a bright little girl, an amazing mother, a fabulous family and a top-notch support team.

Fancy Nancy Night At The Library

Lily went to a special "Fancy Nancy Night" at the public library last night with Dad. We made Fruit Loop necklaces which Lily promptly ate during the story telling portion of the program. Then all the Fancy Nancys got to march through the library culminating in a sing-along. A grand time was had by all. 

 

 

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. 

Sledding with Friends

Lily went sledding for the first time this weekend on a beautiful warm day with perfect snow.  She was fearless as she sailed down the hill with her buddies and "by herself."  At the bottom of the hill, she would roll off the sled and one of her her gloves or her boots would fall off.  This would mean an adult would have to run down the hill.  Lily would say, "Mommy, you ran down the hill to help me." 

We have actually read a book about kids who went sledding and as they sailed down the hill, parts of their clothes would fly off.  I'm not sure if Lily was taking her gloves and her boots off on purpose, but at the bottom of the hill we would typically see one of Lily's feet stuck in the air and she would be yelling "my boot fell off" or "my foot is cold" or "my gloves are covered in snow." 

The CIs stayed on pretty well, and we only heard them beeping a couple of times as we lugged her up the hill.  Certainly another magic memory that was only enhanced with Lily's ability to communicate, even through her hat, with her buddies.

Super Bowl Party

Lily and I went to Aunt Kelly and Uncle Eric's Super Bowl party yesterday. When we were getting into the car Lily asked, "Where are we going?" I said we're going to a Super Bowl Party. 

Her response...

"That's a silly name for a party."

She had a great time despite the name. Thanks to Kelly and Eric for hosting it. 

Oh and she picked the Saints to win. I'm debating about taking her to Vegas during my next trade show to win some scholarship money.