Life is Bliss - Lily's Cochlear Implant Journey

Pretending and Singing Mr Sun

We're having lots of fun as summer draws to a close.  It was a beautiful weekend to play outside and do all those summer kid activities like bubbles, chalk on the sidewalk and play dough on the porch. 

One funny interaction this evening was when were pretending with the play dough that we were having a picnic.  I told Lily we were pretending to eat.  Then asked, "What am I eating?"  She finally decided I was eating a strawberry.  Then I tried to change it and said, "Now I am eating an enchilada."  Lily said, "No Mommy.  It's not enchilada, it's strawberry.  Pretend strawberry." 

Lily has also been growing her singing ability.  Tonight she told me to "Stop singing Mommy.  Shoe singing."  She was playing with her pink sandal and apparently it wanted to sing.  (We don't stifle creativity here.)   Then she started into "Mr Sun, Sun, Mr Ol' (Golden) Sun, Please shine down me."  Totally amazing.  We cheered. 

Check out this article called Bringing Music to Their Bionic Ears: Nurturing Music Development in Children With Cochlear Implants.  By Christine Barton - A music therapist who we adore!

A few more fun pictures to enjoy.

Claudin-9 Gene Linked to Hearing Loss

Dozens and dozens of genes have been linked to hearing loss, but there are numerous others that are yet to be discovered.   University of Iowa researchers have recently identified claudin-9 as having a connection.  Seems like a "Genes connected to the ear" class is in my future.  Road trip to Iowa City?

"Using a deaf mouse model, the researchers identified the deafness-causing defect in the claudin-9 gene. That mutated gene fails to produce normal claudin-9 protein, which, the University of Iowa team showed, is needed to maintain the proper distribution of potassium in the inner ear."  MORE

Education Resource for Public School Teachers on Hearing Loss

Interesting resource developed in Missouri to educate public school mainstream teachers about childhood deafness and to help them understand communication and educational issues relevant to children who are deaf and hard of hearing who use hearing aids and cochlear implants.  It's just the basics, but provides a great introduction.

Oh Drat! More Language Learning

Lily is saying a lot of funny phrases right now.  

One phrase is "Oh Drat."  She picked this up from the cartoon Oswald.  Pongo, a large gentle dragon, is always breaking things or can't do something because he is too big. Then he says all defeated, "Ohhhhhh Drat.  Sigh."  Lily will dump the cards on the floor, then look at them and say, "Oh Drat."  Or she will bump heads with Daddy and say "Oh Drat.  I am crying too."  It's sooo hilarious.

Another funny phrase is "that tickles," used of course when we tickle her or her babies. 

Lily has also just recently learned about monsters.  She'll ask "Where monster go?"  Then say "outside."  Or she'll look in a plant and say "No monster here."  If Daddy runs in the room, she'll say something like, "That's not monster, that's Daddy."   Fun times.

Internet Capability in Cochlear Implants

When we spoke at the Advanced Bionics headquarters, we envisioned the future for people with CIs. We thought they'd be the lucky ones with "CIA style" hearing.  Maybe listening to someone whisper across a huge field?

Here's a new take by Google.  "Vint Cerf, vice-president and "chief internet evangelist" of tech giant Google, foresees the introduction of internet capability to existing neural interface technology such as cochlear implants, allowing, as an example, web radio played direct from computer to brain." So cool.  More

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. :)

Let Our Children Hear — And Learn To Speak - South Africa Editorial

A very interesting editorial in South Africa's The Time's called Let our children hear — and learn to speak

Taking Lily's Cochlear Implants off at Night

We have taken Lily's Cochlear Implants off right before she goes to sleep for the past 15 months.  It is a ritual of sorts, except for the last few nights when Lily has asked, NO demanded, that she wear her CIs to bed.  She definitely wants to hear and "count sheep" because "I can't sleep."

It kills me to take her ears off at night, but it killed me even more to hear her saying "I want two CIs on" and crying until we put them back on her  (We were a bit thrilled that she used such a long sentence). 

So Lily has been falling asleep with her CIs on and then we remove them after she falls deep asleep.  This works great until one battery dies and starts beeping.  It can wake her back up because she is still hearing with the other CI.  Alas...

Lily has always napped with her CIs on, so we will continue to live the CI motto "Wear your CIs all waking hours" and then some non-waking hours as well. 

Music Therapy and Its Link to Listening and Reading

New research on music therapy and its effectiveness at teaching listening skills, especially in noise. 

Incorporating a music therapist for kids in early intervention, for a range of issues, seems like an increasingly good public policy idea. 

"The findings strongly support the potential therapeutic and rehabilitation use of musical training to address auditory processing and communication disorders throughout the life span.....Better perception in noise was linked with better working memory and tone discrimination ability. The results imply that musical training enhances the ability to hear speech in challenging listening environments by strengthening auditory memory and the representation of important acoustic features."

The researchers have also looked at the link between music and reading.

"The Auditory Neuroscience Lab at Northwestern has helped establish the relationship between sound encoding in the brain and linguistic abilities by showing that the very neural sound transcription processes that are deficient in children with dyslexia are enhanced in people with musical experience. Based on this collective work, poor readers may show greater benefits from training programs that include music as well as speech sounds."

Singing Happy Birthday Mommy

Tonight at dinner, Lily serenaded me with "Happy Birthday Mommy, Happy Birthday Mommy, Happy Birthday to Yooooouuuuuu (vibrato)."  What more could I ask for?  Did I ever imagine Lily would be able to do this at two years old?  No.  What a great birthday. 

I received so many birthday wishes from so many special friends and family and had multiple parties, which is how birthdays should be celebrated. 

Yesterday we got to explore Omaha's Riverfront and rode the new riverboat.  Lily  couldn't wait to find that boat and "row row row the boat..."   We even climbed the new pedestrian bridge.  I have a feeling it's going to be a great new year. 

Happy Birthday Mommy

Here's a quick post to wish Mommy a big, beautiful birthday. It's been a great year!

 

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. 

Memory, Experiences and Language

Today we met Lily's Daddy for lunch at one of our favorite spots.  They serve southern food out of an old gas station and have a great vibe. 

Once Lily saw the restaurant, she started talking about Choo Choos, because there are a number of trains right down the street and you can always hear the whistles.   Then we sat down and Lily asked for Mickey, because when we were here before we were entertaining Lily by making her toys "disappear"  under the big napkins. 

We haven't been at this restaurant for at least a month, yet her memories and the language surrounding those experiences, are clearly sticking.  It just reinforces for me the importance of creating magic memories to build language. 

Lily's First Phone Calls

Lily woke up today after I had left for work and was upset about me not being there. Through the tears, Mommy called me on the iPhone so that Lily could say hello. While it was marginally effective at calming her down, she quickly learned a new communication tool - the cell phone. 

Later in the afternoon, Mommy was out at a meeting while Lily was visiting Grandma's house. Grandma called Mommy to coordinate schedules and hung up the phone. Lily was none too pleased and requested Grandma to call her back to "I talk to Mommy". While on the phone Lily told Mom about her day of potty training, lunch, and swimming. Can't wait to see what happens when she gets her own phone.

426 Words +++

We've just finished filling out the MacArthur-Bates word inventory and identified 426 words that Lily knows and says.  Then of course there are hundreds of words she says that aren't on this list.  It was only a few months ago that this new word inventory seemed overwhelming.  Now it is easy to see the words she doesn't know on this list, because they are getting fewer and fewer. 

Of course learning language is never ending.  Found a word in a WSJ caption last week that I couldn't even pronounce, let alone understand.  Not sure where a kid with normal hearing would be on the word inventory list, but we're pretty excited for Lily on soaking up all this vocabulary. 

It's hard to know the words Lily knows and doesn't know.  We played "what is this" for hours today because it was so rainy.  Lily kept asking for "More."  We'd run from room to room to outside to the basement to the garden and everywhere in between asking "what is this" and "what am I doing" or some version of that.   I am sure the neighbors thought we were nuts.     

Float 4 Life - Lily's Swimming Adventure

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

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

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

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

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

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.

Baby Lab - 25.5 Months - "Curve Buster"

Since we returned from the Moog Center, Lily's language has exploded.  She went from one and two words, to three, four and five word sentences.    The Director of the Baby Lab Study called Lily a "curve buster," meaning that Lily is doing extremely well and "busting the curve" in her research study.  We'll take it!!  Here is the report from the Baby Lab yesterday.

1.  Mom reports major explosion in utterance length and we observed the same today.
    a.  Moog School strategy of requiring imitation of Mom's expansions and that worked.

2.  Observations today:
    a.  Nice changes in clarity of speech - Majority of words understandable and most were in multi-word phrases, which is really cool.
    b.  She is breaking into grammar big time.
          1.  a + noun
          2.  Pronouns (I, her, me)
          3.  noun+verb+object (I want cake)
          4.  all/"doin" (ing in natural form)
          5.  Location terms (on bus Mommy)
          6.  Nicely formed questions:  Where shoes go?  What's dat Mommy?  Yes-No with Nice inflections!
          7.  New function words "it" "a"
          8.  Plural endings!  Toy+s, Boot+s
   c.  Major growth in Vocabulary and range of concepts expressed.
   d.  Unbelievable pretending.  Imagining raining and running away.  Putting on pretend sunglasses.  Assigning roles to mom.
   e.  Lily using desire terms (want, need)
   f.  Mom's input is so ideal; I notice how well you shape her utterances so naturally.
   g.  Natural expressions; hey, nope.
   h.  Quality of comprehension.  WOW!  "Tap" the cup, make the cup "fly" and "smell" the shoes.

Research on the Importance of Adult-Child Conversations to Language Development

In the latest LENA Newsletter, the featured expert was Dr. Frederick Zimmerman, chair of the Department of Health Services in the School of Public Health at the University of California, Los Angeles.  As the lead researcher, he discussed "Teaching by Listening: The Importance of Adult-Child Conversations to Language Development," which was published in the July issue of Pediatrics.  The following summarizes the findings of the study.

The results supported our hypothesis that parent-child interaction is best when it's a two-way street. We found that each additional 1,000 adult words a child was exposed to led to a .44 increase in the child's PLS-normed score, whereas for every additional 100 conversational turns there was a 1.92 increase in the PLS-normed score. For both stimuli, these changes were approximately one standard deviation from the norm. Therefore, in that standardized sense, adult-child conversations were approximately six times as powerful at aiding language development as adult speech input independent of conversational exchanges.

Communicating Her Needs Or Stalling Tactics

Lily is quite the communicator. She's using her new skills to try and convince us to let her stay up later at night. Last night we came home from dinner at Grandma's and before Lily headed upstairs to put on her pajamas she ran over to the kitchen table, jumped into her booster seat, buckled herself in, and said, "I play cards now Mommy". She was referring to activity cards that she played with Mommy earlier in the day from Advanced Bionics Listening Room. She knew that it would be hard for us to say no to just a little more language learning. Clever girl. Here's a photo.

Tonight was a little different. We've been reading the book "Baby Can't Sleep." In it the daddy tries to get baby to fall asleep by counting sheep to her (One sheep chasing fireflies, two sheep playing guitar, three sheep staring at stars, etc.). Lily was a little restless and reached for me to pick her up and said "I count sheep, I count sheep, I count sheep," which sounds remarkably like "I can't sleep." Once I made the connection we counted a few sheep and she promptly relaxed and fell asleep. Ahh the power of language.

AB Cochlear Implant Article in the LA Times

There was an excellent article in the LA Times today called "Cochlear implants open deaf kids' ears to the world."  It chronicles a little boy named Tyler from CI surgery and activation, to speech at the John Tracy Clinic.   Hope we see more mainstream media covering this new generation of kids with Cochlear Implants.  Talk about a changing industry. It's certainly not business as usual. 

Journey Through the Sand Hills

I'm not a big country music fan, but I love the Dixie Chick song called Cowboy Take Me Away.  It must have been written by someone who had just spent time at a wedding in the Sand Hills of western Nebraska.  Here is an excerpt:

I said I wanna touch the earth
I wanna break it in my hands
I wanna grow something wild and unruly

I wanna sleep on the hard ground
In the comfort of your arms
On a pillow of blue bonnets
And a blanket made of stars

Oh it sounds good to me

I said cowboy take me away
Fly this girl as high as you can
Into the wild blue
Set me free oh I pray
Closer to Heaven above
And closer to you
Closer to you

I wanna walk and not run
I wanna skip and not fall
I wanna look at the horizon
And not see a building standing tall

I wanna be the only one
For miles and miles
Except for maybe you
And your simple smile

Oh it sounds good to me
Yes it sounds so good to me

A few photos (taken with my iphone out the car window) of the Sand Hills and our journey west, with a stop at the Niobrara River and Smith Falls.  

Ah the sound of rushing water and those on river tubes screaming Go Big Red.  Why must the two mix? 

Talking in Church

This weekend we trekked across Nebraska to a western wedding and then back to the other side for a 100th Birthday party.  Lily did very well on the eight hour journey in the car, only demanding to stop a few times. 

On the trip, we had a couple of strangers say to us, "Boy, she is a talker" and "She is so verbal for two."  Those unsolicited comments are quite fun. 

It also took all our tricks to keep her quiet during the wedding which was held in a small church.

One of the secrets was lots of M&Ms, which we now call L&Ls so Lily doesn't know what we are talking about.  However, then Lily was requesting the M&Ms by color.  "Blue one, Yellow one, Green one. More M&Ms please."   She also kept making comments during the ceremony like "Hi Dale," "I see him," and "More Music."  She was the only one to clap when the songs would end  (I always thoughts the Methodists were clappers).

Every step comes with new challenges, but these are quite fun.