Life is Bliss - Lily's Cochlear Implant Journey

NPR Radio Interview - Niparko and CI recipient

Interesting WYPR Maryland Morning radio interview with Dr John K. Niparko head of the The Listening Center at Johns Hopkins and a professor in the Department of Otolaryngology and Kathleen Galvan, a Cochlear Implant recipient who made a financial contribution to the NPR station because it was the first radio station she had ever been able to listen to.  (thanks to Tiff for finding it)

Dreaming of Cake and Ice Cream

We got to celebrate our little friend Elena's third birthday at a Princess-Batman party last weekend.  It was great fun and Lily was able to try on the birthday girl's dress up clothes.  This cowgirl outfit was a hold over from Halloween, which apparently WalMart drastically reduces immediately following the holiday.  Who knew?  Lots of language opportunities with costumes!

The picture captures Lily's excitement perfectly for the outfit and the party.  Lily continues to talk non-stop especially when it is something she wants to do such asking the birthday girl's uncle to move so she could have his chair (he very generously changed seats), asking the birthday girl's Great Grandparents for the icing roses off their cake (they were all over this request) and singing the Kindermusik goodbye song as we left the party. 

Before we arrived, I was telling Lily that we would eat cake and ice cream at the party, but first she had to take a nap.  She responded, "Then I will dream about cake and ice cream."  Too fun!

Nature Girls Explore

These are our nature girls/soul sisters enjoying the park and the beautiful fall weather.  There are so many sounds to listen to outside.  We heard the owls hooting, crackling of the fall leaves and snap of seed pods as we broke them apart to see what was inside.

 

Singing and Dancing at a Coffee Shop

Here's Lily, the short rainbow, singing and dancing with her friends at a coffee shop.

Advanced Bionics People

One of the amazing things about our Advanced Bionics Mentor training was meeting the staff and the other mentors that consisted of adult recipients and parents of kids with CIs.

The Staff - From the President on down, the staff was incredibly professional, knowledgeable and passionate.  They believed in what they were doing and were totally committed to helping people hear better. 

The AB President, Jeff Greiner, outlined AB's history, the challenges they faced and what the future may hold.  He spoke frankly about starting a implant device company with seven engineers in the early 90s and what the company had become today.  He described their intense focus on listening and sound quality which has resulted in superior performance.  His confidence in the AB product and staff was apparent  He had a CEO's confidence, yet said this nearly 20-year journey had made him humble. 

The rest of the staff, including those from the Bionic Ear Association, marketing, manufacturing, product development and others were equally as impressive.  They were all well trained, totally engaged and passionate about helping people hear better.  They could see the big picture.  Almost all of the staff were trained as audiologists and now serve as advocates, business managers, marketers, sales people, trainers, technical advisers, and product designers. 

Other Mentors - The other 40 people at the Mentor Training were adults and teens with Cochlear Implants and parents of kids with Cochlear Implants.    Most of the people there had been helping advise CI candidates for years and could clearly demonstrate how the AB CI had changed their lives so dramatically.  The passion in the room was contagious.  Many of them also had blogs.  Here are just a few.

Kids

http://elliottrocks.blogspot.com/

http://maxandclairesadventure.blogspot.com/

Adults

http://geocobb.blogspot.com/

http://cisoundsx2.blogspot.com/

We are so appreciative to Advanced Bionics for helping Lily to hear.  They realize, as do we, that our partnership with them is for a lifetime.  Now with Advanced Bionics being purchased by Sonova/Phonak, we think even more exciting things are ahead.  If we could only figure out how to purchase stock on the Swiss Stock exchange.  I think the outlook for Advanced Bionics is bright. 

Very Thankful

We are so thankful this year for all the blessings we've been given.  Lily is thriving. She is talking, listening and is a very happy kid.  She says funny things, is sensitive and passionate.  She is a typical two year old, except we think she is brilliant, beautiful and hilarious.  So we are biased. 

We are thankful for all the support our family and friends (who are like our family too) have given us and all the love they give to Lily.  We are also thankful for all the professional support we've received this year.  Lily's team members have become our life long friends and we are glad to be on this journey with you.    

Happy Thanksgiving. 

Blog Friends

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

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

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

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

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

Santa Claus at the Gas Station

We've started teaching Lily Christmas vocabulary.  Actually with simple exposure to words once or twice, she is able to understand the meaning and use the words immediately.  She is already talking about Christmas decorations, snow angels and candy canes. 

Lily is also trying to figure out Santa Claus.  She knows Santa brings toys to kids and that he wears a big fur coat.  This basic information got us into a little bit of trouble when Lily and I were in the gas station recently. 

There was a very tall woman, maybe from Africa, with a huge shoulder to toe fur coat.  Lily saw her immediately and said "Santa Claus!!!"  The woman with some sort of accent said, "What did she say?"  I said, "She thinks you are Santa Claus."  "What," she said confused.  I responded again, "She said she likes your coat."  The woman responded "I like her coat too!"  Lily was wearing her leopard print coat with hot pink accessories.   

You never know where Santa may be or the friends Lily will make with all this talking. 

Fun With A Flashlight

Last night we were reading Goodnight Gorilla, one of Lily's favorite books (special thanks to Uncle Chris for picking this one out). The story is about a mischievous monkey who escapes and unlocks the cages of all the other animals in the zoo as they follow the zookeeper home for a good night's sleep. The zookeeper has a flashlight and Lily likes to follow along in the book while she points her own flashlight. After a couple of readings Lily began pointing the flashlight all over the room stopping at each item and naming them - "Lamp... door... another door... fan... dresser." What a fun vocabulary game. 

The Halloween Experience

There is not much Lily missed about Halloween.  We had the whole experience including making cookies, reading loads of books, attending lots of wonderful Halloween parties and of course Trick or Treating.  Thanks to everyone who added to the flavor. 

Lily learned all about skeletons with bony fingers, cackling witches that say "Hee Hee Hee" and that a "Thank You.  Happy Halloween" always follows the neighbors filling your basket with candy.  We shared many fun experiences with our friends and family and Lily is already plotting next year's costume. 

 

 

Lily's BFF

Lily has a couple of BFFs which I am certain will be her pals for a lifetime.  Here are Lily and Ivy, Lily's "soul sister" recreating memories for their Moms of the hours we spent in the 4-H building as children.

Japanese Birthday Celebration

We were so happy to be able to celebrate Aunt Kelly's Birthday this year.  Here Lily is demonstrating how to use chopsticks at the Teppanyaki (Japanese grill) Restaurant.   These chopsticks were rubber banded together, but Lily preferred to eat with just one stick.  Fortunately, we were eating sticky rice.  

The japanese chef gave Lily lots of new experiences to think and talk about including throwing bowls into his hat, lighting a huge fire on the grill, cracking eggs with a spatula and blowing on a train whistle while pushing a steaming onion.   Some of these experiences are harder to explain "why" than others.

Talking in Spanish

Yesterday, Lily's buddy Ivy was teaching her to count to 10 in Spanish.  As we drove home from a party, we could hear Ivy saying "Uno!"  Lily would respond "Uno."  "Dos" - "Dos"  and this continued until they reached "Diez."   How totally satisfying.  Lily finished by telling me that "We're talking Spanish." 

521 Words +++ and New Phrases

We have one last time to fill out the MacArthur-Bates Word inventory.  Last week's results came to 521 words.  Lily has hundreds of words beyond this.  Perhaps more than 1200?  I'll have to check in with the word gurus to see where this places Lily on her vocabulary.  Mary Pat said they typically stop with the inventory after a child is 30 months.  There are still at least 50+ words Lily does not know.  Lots of the prepositions, pronouns, verbs, and words about time.  

She has learned many of fun phrases recently.  Not sure if she put these together or if she's heard them.  The phrases include:

- It's not so bad

- Go get him

- That is not very good.  I don't like it.

- Just a minute

- Good night, Sleep tight

- She is so nice

- Good idea

- It's too far.  Carry me!

- I think so.

- I want to see my friend Ivy.

Jumpin' Kate = Jumpin' Lily

This weekend we went to a local community radio fund raiser, which was simply a couple of bands in someone's backyard.   Lily loved it.  She and cousin Ivy were jammin', jumpin' and groovin' to the acoustic guitar sounds of Jumpin' Kate and another guy named Mike who was also terrific, but his name was less memorable.  Lily must get her love of acoustic guitar from me and her Aunt Tiffany.   The band was gracious to wave  and smile each time  the kids ran around the dance floor. 

It was so satisfying to watch Lily dance to the music and listen to the songs.  Carefree and enjoying the sound.  The audience asked Lily questions  between sets like "How old are you" and "what is your name" and she didn't miss a beat.  This would never be possible without her Advanced Bionics Cochlear Implants.  We are so thankful.  

I Missed You Emma

Lily and Emma are good pals.  Lily looks up to Emma and watches her every move.  These two are now able to have little back and forth conversations and while Emma is much older, Lily has no problem hearing her questions, even in challenging listening environments, and then coming back with some kind of answer. 

This weekend, when Emma left for a few moments and then returned, Lily rushed up, gave her a big hug and said, "I missed you Emma."  Ahhhhh what a tender moment and certainly a demonstration that Lily understands emotions and the word "missing."

Carl's Birthday - Reading Without Words

Last week Faye brought Lily a couple of books to read during the week. Her favorite is Carl's Birthday about a big dog and the baby Madeline who go on an adventure. It's actually a series of books. They are marvelously illustrated, but except for the first page or so, no words appear on the pages. One of the things we learned early on in our journey was to read, read, read to Lily, but not to always be restricted to the words on the page. The Carl books are excellent at helping us do this. Lily loves looking at the pictures as we make up the dialog and explanations on each page. It's been an excellent way to try new language, expand vocabulary, and ask questions. 

Tonight we went to the mall and Lily kept telling us she wanted to go to the "bookstore" (she likes playing with the train set they have in the children's book area). We left with Good Dog, Carl to add to the collection.

  

She Talks A Lot

We sat down with a Mom and four year old boy at the library last week to do a color page.  Because we try and read 10 books a day, we are at the library frequently. 

Lily started chatting immediately, talking about the colors, shapes, what she was drawing, the boy and his mom, on and on.  The mother said, "She talks a lot."  I smiled and said "Yeah."  Then she she said, "How old is she?" and went on to say how advanced she thought Lily was and that her language was so clear and easy to understand. 

I don't think this Mom could see or knew what Lily's CIs were.  With only the tan Advanced Bionics headpieces and nothing on the ears (BWP setup), the CIs are starting to disappear in her blond hair.   

These are the little moments that keep me going. :)

Outdoor Adventure at the Home of Arbor Day

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

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

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

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

Lily's Buddy "UnJohn"

Uncle John was here visiting for the past few weeks.  He was quite popular with Lily.  She'd yell, "UnJohn come upstairs" over and over again.   They read lots of books together, played with cars and bubbles and even went to the Safari Park (see Big Black Bear below).   Then "UnJohn go airplane."  We miss you already.  Come back soon.

CI Sertoma Club - Ice Cream Social

We loved going to the annual Cochlear Implant Sertoma Club Ice Cream social at the UNL dairy store tonight.  Not only was the ice cream fabulous and the weather perfect, but we loved seeing everyone with their CIs.  There are both adult users and a number of little kids.  Aunt Kelly, Uncle Eric and even Uncle John got to join us for the fun. 

Lily was talking non-stop and "entertaining the audience."  She decided to engage each person watching her by pretending to give them a letter off the sign.  Maybe she was hoping for an M&M which is her favorite "treat" (as she calls it) right now. 

We also met Briggs and his family.  What a doll.  He's only 14 months, but well on his way to talking and listening like a pro.  (So good to meet you guys.)   Watching Briggs was exciting.  We were in a similar place one year ago and what an amazing year it has been.  

My Favorite Panel at the Moog Center Workshop

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

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

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

A Trip to the Zoo - There Is So Much to Talk About

This week we went to the zoo with some of our CI pals that also work with the Omaha Hearing School.  The other kids are about two years older than Lily and are talking beautifully. 

Karen, the director of OHS, commented that all the Moms were seamlessly reinforcing, expanding and correcting everything each other's kids were saying.  We've all had such great training from Karen, I think it is now just second nature.  We are so lucky that the Omaha Hearing School is able to continue serving our community and providing top-notch oral education to this area of the country.

Highlights at the zoo included Lily's first horse ride, catching butterflies, and the worm Karen helped the kids pick up and put back in the dirt.  Oh what she'll do for a language experience. 

CI Sighting at the Grocery Store

Saw a middle-aged woman today at the grocery store with an AB CI.  I was so surprised, she left before I was able to "accost" her.  :)

Happy Birthday - Lily Turns Two

Lily turned two today and had a heck of a party with family and friends. She had an "Oswald" cake and way too generous grandparents and friends who filled the living room with presents. 

Last year at this time she was just beginning to use her "ears" to recognize and respond to sounds. Tonight I was filling out the doctor's checklist for her 2-year check-up tomorrow and she's meeting all of the developmental and language milestones on the list (20+ words, two-word sentences, use of pronouns, following 2-part commands, etc.). Wow! What a great birthday gift. 

Here are a couple of pics from the party. Enjoy!

Happy Mother's Day to Lily's Mom(s)

I cannot express how much I love Lily's Mom. 

Without her intelligence, passion, and dedication, Lily would not be where she is today. She fights through the bad times and rejoices in the good, and along the way makes the lives she touches so much more meaningful. She has risen my game as a father and has made our life journey more spectacular than I could ever have imagined. Lily and I are truly grateful to have her in our lives. 

Happy Mother's Day, XXOO.

P.S. I'd be remiss if I didn't also say thanks to the other Moms in Lily's life. We love you and cannot imagine where we would be without your love and support. Lily is amazing because of what you give to us and to her.

Talking with the Girls

Lily hangs out with a bunch of girls and each one is a role model for the girl that is slightly younger than they are.  The two oldest girls are tremendous language models.  Below is Lily talking with Zan  about how to work the truck (or something like that).

Lily is saying so many new words each day, I don't know how to keep track of them all.  Recently we've heard the words or phrases:  carry, the end, and one more.  One more is especially popular with one more cookie.  Of course. 

Lily had a slight fever today and was snoring by 8pm.  Not sure if she is teething or what is going on.  It always puts me into a slight panic wishing I had gone to med school.  Hopefully tomorrow she'll be feeling great. 

What's On Your Mind?

I think we've said this before, but one of the great things we've experienced because of this blog is connecting with parent's and kiddos from around the world on similar journeys. So if you're reading this and you've got a question, suggestion, or comment send 'em over. There's a comment section for every post or email us privately. We'd love to make the blog more informative and helpful. Keep sending us your thoughts and suggestions. 

In the meantime, here's a couple of springtime pics.

What A Difference A Year Makes

Today is Lily's 1-Year Hearing Birthday! Looking back to the day she was activated up to now has been truely remarkable. Last night we had a little celebration with chocolate ice cream (Lily's favorite) and champagne (Mommy & Daddy's favorite). While we still have a long journey ahead, it's nice to look back and rejoice in the places we've been to get this far.

Hearing the Animals on the Farm - New Baby Pigs

We got to go to Fred's farm today to see new baby pigs, only a week old, as well as chickens, geese, horses and dogs.  Lily loved it all, even when the little pigs were squealing. 

Some of her words this afternoon were pig, chicken, goose, outside, catch it, raining, woof woof, meow, eggs, moo (Emma was dressed like a cow), cheese, and one of her favorite words  baby, for the baby pigs.  She is very interested in Mama and baby pairs. 

Here is Lily looking out of the barn at the horses.  She went out in the rain with her raincoat and loved every minute.  She didn't want to come back inside.  Lily also had no fear of the big mama pig.  Maybe she'll be a farmer. 

Speaking Gigs

In celebration of Lily's one-year hearing birthday on Wednesday, we've decided to undertake a new venture. We are currently developing a presentation revolving around our journey from initial days of diagnosis through our daily adventures in learning to listen and talk. If you have a need for speakers from the parents' perspective, contact us for availability. 

Boys Town Memorial Day Run - Join Us!

Every year Boys Town National Research Hospital holds a Memorial Day Run to raise money and awareness for its Cochlear Implant Center. It's a really well run event with over 2,500 runners and walkers. There's a Children's 1-Mile Fun Run, a 1-Mile Walk/Run and the 5-Mile Walk/Run. Here's a Memorial Day Run Video from the event.

Last year, we met several friends and pushed our kids the 5 miles in their strollers. This year, I've decided to take a run at the run, while Lily and her Mom will likely gather a group to walk the race. It's a really fun time with children's activities and trophies for winners. Here's a pic from last year where Lily got to say hello to Dr. Lusk, her CI surgeon.

If you'd like to participate or donate, here's the registration link. Hope to see you there!

Pittsburgh Children's Museum - WOW!

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

"Life's Too Short. Live It Up."

We had a good Chinese dinner with our friends Kam and Yvonne this evening. As you can see by the photo, Lily is living up to Kam's motto, "Life's Too Short. Live It Up."

A Touching Sweet Moment with a New Friend

I've been emailing with a new friend whose baby was recently identified with profound hearing loss.  Their family is in the "research phase" trying to figure everything out.  They are asking all the right questions and learning everything they can. 

She shared with me the following story of a touching sweet moment that they had with a stranger.  It is interesting that sometimes such peace can come from someplace so unexpected. 

My mom and I were at a local bookstore with my baby daughter, looking for books that would be a good resource to us! An older lady came over and started talking to her just like she was 10 years old and could completely comprehend the conversation. 

She sort of chatted with her a bit and then pulled back her hair and said, ”Look…I just wanted to show you that we match,” as she showed her hearing aids.  And then she told my daughter that “everything will be just fine.”

It was a touching moment for me because her approach was brilliant and so sweet! I loved that she was just addressing my daughter before she filled me in on why she came over.  She said that she saw the Phonak bag sticking out of my diaper bag, so just thought that she would come over. 

She spoke very well, but hears very, very little from the aids. When you spoke to her directly head on she could lip read.  She said that she has been researching the options of a cochlear implant for herself right now.  She has been deaf since birth.  I can’t wait to meet more people just like her in this journey!!  How lucky is my daughter to have acquaintances like that!

The Bliss of Blogging

We attended a S.E.E.D.S (Social, Emotional, and Educational Session) workshop held at Boys Town last week. About once a quarter a workshop covering a variety of topics facing parents of children with hearing loss is held. One of the topics this time around was "The Parent Factor: Taking Care of Mom & Dad." The session was an opportunity to talk with parents and professionals about the tips and techniques we've used in getting through the tough times. 

One of the things that seems to have worked for us is this blog. There's something comforting in sharing what you're going through with others and keeping our friends and family close to this amazing little girl. We started as a way to document Lily's life to give her something when she got older as a testament to how far we've all come. We love hearing our friends reference or comment about what they've read on the blog. It makes us feel good to know that what we're writing about is interesting to others as well. Along the way we've also met people from all over the world who've read Lily's story, some seeking advice, others offering words of encouragement. All in all it's been well worth the time and effort. So keep the comments, suggestions, and feedback coming and we'll keep spreading the Bliss. 

Bears & Chairs

Lily has added a few more words to her expressive language these past couple of days. Her friend Ivy visited yesterday and they played with a lot of bears with Ivy trying to teach Lily how to say the word. Well we thought we heard Lily say bear last night, but it was confirmed tonight when she pointed to a bear on the Oswald cartoon she was watching and said it loud and strong. Other words she said today were highchair (nice two syllable word), yeah for "yes", and na, na, na with a head shake for "no". 

I think she's also doing a good job of reading our lips. When I was getting gas this weekend I watched her in her car seat point to her ear when I turned the pump on. I instinctively pointed to the pump and said the word to let her know what she was hearing. She looked back at me through the window and mouthed the word "pump." Good stuff!

Laughter - What A Great Sound

Lily loves to laugh. Not only does she enjoy the act itself, but the sound she makes and we make when she does. Last night Heather and Ivy were visiting after dinner. We all sat down for dessert of chocolate brownies and milk. Lily was drinking from her cup that has a built in straw. Somehow she was able to make the straw whistle. This sound caught her funny bone and started a laugh-off between all of us. She would laugh. We would laugh. She would laugh. We would laugh. Over and over. You get the picture.

Tonight we were playing and when I held her over my head I'd give her a little jiggle. She soon figured out that when she would make a sound the jiggling would change the modulation. What fun to play with sounds and what fun to laugh loud and often with your daughter.

Disney CI Friends

During our Disney adventure we met lots of other people who commented or asked questions about Lily's CIs.  When your child gets implanted, they should give you a CI Ambassador card.  We have conversations about Lily's CIs, with strangers, nearly every time we leave the house. Disney was no exception.

We met a woman who was in school to become an audiologist.  She commented that being implanted bilaterally, so early, was wonderful and where did we have it done.    When we said Boystown, she just shook her head and said "Ahhhhhh, that is why."

We also met a family from the UK whose niece just received a CI. They were asking questions like if we signed to Lily (nope) and if she was "turned up" all the way.  I am not sure what the latter part of their question means, except maybe their niece had just recently received her CI and they were still adjusting her map.

Finally, we met a mother who told us she had two adult daughters who had profound hearing loss and that in the next few months, one of them was going to get a CI for herself and the other one was going to get a CI for her new baby son.  This mother/grandma, of course, was watching Lily (like a hawk) run around the restaurant and come back each time we called her.   The mother told me (one mother to another) that her daughters have both been extremely successful in their lives and that somehow the hearing loss had taken their relationship to another level.  Sometimes it is amazing where advice, guidance and confidence comes from.

We're still looking for Mickey or Minnie with a CI.  I am sure it's only time. 

Another Kid with Bilateral CIs

We met a kid with bilateral CIs the other day at the Children's Museum.  Of course we rushed up to the family.  They had noticed us too.  The family had lived in Nebraska at one time and now lives in Ohio.  Parents reported that at 7 years old, he was doing great and mainstreamed in the second grade.  His mom said, "Look Lily has CIs too."  And the little boy looked at us like what was the big deal.  Kids are great. 

Memories

I met a family the other day of a 10-month old with hearing aids.  This adorable little baby girl looked just like Lily at that age.  The baby only had a mild hearing loss, but her little hearing aids were neatly taped behind her ears.  The mom said she found double-sided tape in the intimate apparel department. Very clever. We had always used the toupee tape from Sally's Beauty Supply,

I'm not sure why her aids caught my eye, but Lily's Dad saw the family in the parking lot and the baby caught his eye too.  Maybe its "Ear-dar."  The never ending quest of searching for others with hearing aids and CIs. 

As Lily is getting bigger, her CIs seem to being getting smaller.  When she was so little, those hearing aids seemed to take up half her head, even though they were very small compared to hearing aids of years past.  Maybe I am getting used to seeing the CIs on her head now or maybe as her little wispy hair is growing in, the CIs don't seem like they are so prominent. 

One of the most memorable things another Omaha Hearing School parent said to me very early on, when it seemed that Lily was all hearing aids, was, "When we see your baby, we see your baby and yeah she has hearing aids.  We don't see her hearing aids and then see your baby."  It is a fine distinction, but it really made a huge difference for me to know someone was seeing her that way.   Maybe a mini lesson for a grieving parent. 

Seeing this 10-month old baby brought back so many memories of when Lily was little and all that we have been through.  And then I have to laugh because Lily was that little just eight months ago.  My how things have changed. 

Lily's First Husker Game

Lily attended her first game and what a game it was. The Huskers pulled it out with a record breaking field goal to beat the Buffs. She enjoyed all the people and the festivities and clapped when she heard the roar of the crowd.

Another CI Friend

Last night we met a woman at The Oven whose grandson has bilateral CIs and whose son-in-law works for Cochlear.  They live in Denver now, but the little boy was the first one to be implanted under 18 months at our CI Center.  The little boy is now nine and "won't shut up" according to his grandma, but they love hearing him talk.   And he talks beautifully, she said, you'd never even know he had something wrong with his ears.

Lily Loves Cheesecake

Tonight we went to a Cheesecake Factory Cheesecake tasting at the local coffee shop with very bad acoustics.  It was fabulous and Lily not only loved the Cheesecake, but she loved engaging all those in attendance.  She is a "salty" girl as our Albanian neighbor says.  Not just a sweet thing, but smart, engaging and clever.  Love it.  We also saw a text book on the table next to us.  It was something like "Intro to Hearing."  Turns out, the two girls were audiology students in the doctoral program at UNL.  I took the opportunity to "educate" them on CIs. Never miss a chance. 

Bubble Machine

Play Date

Lily had a play date today with her friend Eloise.   Lily and Eloise were due on the same date, but Lily was born two weeks early and Eloise was born one week late. 

We had great fun playing with all of Eloise's toys and the giant bubble machine in the backyard (see picture in the next post).  Of course we found ourselves listening to Eloise intently.  She is a very smart little girl and has a ton of receptive vocabulary.  She can point to all the parts of the face and does many animals sounds.  She also responds very quickly to requests.   

Lily knows a couple of animal sounds and a couple of parts of the face, but didn't miss a beat.  Lily heard the dogs bark, the airplanes fly over and each time we called her name.   She interacted very well with Eloise and they even played together.  At this age, you would expect a lot of parallel play.  By the end of the day, we felt Lily was not too far behind.  Maybe a couple of months.

Lily's babbling has progressed quickly this past month; it sounds much more like baby talk.    And her receptive vocabulary is growing everyday, but we've got a long way to go.  Tomorrow we'll do more, "Where is your nose?  Where is your mouth, teeth, cheeks, ears, hair...."  Lots and lots of words.   

Thanks Drew

Just a quick note of thanks to Drew and family for handing down his Hannah Andersen hat to Lily. Drew's story can be found at his blog Turn On My Ears.

Enjoying Sedona, Arizona

Aunt Kelly

Thanks Kelly for commenting on all the Blog Posts.  It's fun to know who is reading our musings and if they strike a cord with anyone.  Lily's Aunt Kelly is a Speech Pathologist in Pittsburgh who attended the Ag BellConference with us.  It was great fun to have her there supporting us and growing her professional experience as well.

Dave the Principal

Another CI sighting today at the nosiest coffee shop in town.  I talked with Dave, a retired elementary school principal and bilateral CI user, and his wife today.  We'd had met briefly at the CI Sertoma Club, but had a great conversation about CIs, LPS and life.  This was literally over music, a blender, a grinder and a crowded shop where everyone's voices were bouncing off the brick walls.  Dave didn't miss a beat and my ears are still ringing from the noontime noise.