Life is Bliss - Lily's Cochlear Implant Journey

Disney World Magic Moments

A quick trip to Disney World's Magic Kingdom and Animal Kingdom created all kinds of magic moments for Lily this past week. 

Some of the best moments included Lily dancing to the pre-show music for the Magic Kingdom parade.  She was not only dancing but she was running around, laughing and squealing with joy.  The rhythm and music was clearly moving her soul, until she ran into a drain pipe.  Fortunately, she regrouped quickly once the parade started. 

Another magic moment happened as Lily watched the Lion King show.  She again was dancing in her stroller to the music, kicking her legs and waving her hands.  She was growling like a lion and squeaking like a monkey.  All the "animals" in the show were coming up to her and giving her high fives and big smiles.  Lily was in animal heaven. 

IFSP - 19 Months Old

The follow is a sample from our most recent IFSP.  We post this so you can see Lily's progress and see what we will be working on next.

Current Abilities

According to the infant toddler language scales Rossetti, REEL2, Lily is currently demonstrating receptive language skills at the 24 months level and expressive language skills at the 18-20 month level. She has a receptive vocabulary of approximately 400 and uses about 35 words expressively.  Lily is using developmentally appropriate consonant sounds correctly, plus some later developing sounds w, h, m, p, b, d, k, g, s, sh and a number of vowels all short vowels plus long a, o e, i.  Lily is engaged in vocal imitation and is heard to refine her words or sound productions following an adult model. Lily occasionally uses a gesture with a word to indicate a two-word phrase for requesting; she also demonstrates jargon along with true words in her vocalizing. Lily uses her vocalizations and word approximations for a variety of communication purposes. She varies her sound productions by place and manner of production, varies her voice appropriately, and uses her voice for both talking and for singing. 

New Goals

Lily will increase her auditory awareness and discrimination of sounds/words presented at greater distances, produced in various manners and produced in environments with more background noise. 

Lily will increase her receptive vocabulary for new vocabulary outside the home to 100 words, including 15 verbs and 5 adjective pairs. 

Lily will demonstrate an increase in receptive vocabulary by doing the actions to 5-7 songs when adults begin to sing the songs without doing the actions. 

Lily will demonstrate an increase in her understanding of language by following two/three step directions and by naming objects or pictures upon request. 

Lily will demonstrate an increase in her receptive language by showing appropriate response to humor with words, in books and in various situations.

Lily will add to her verbal vocabulary; her own name, 5 names of people, objects or animals, 5 action words, 5 early modifiers, 2 pronouns, 2 social words, and 2 words of existence/nonexistence or recurrence.  Lily will increase her communication skills by using this vocabulary in two-word combinations in various ways; naming (that dog), notice or greeting (Hi Mommy), recurrence (more up), non-existence or negations (no bye, water all gone), action (daddy go), location (in cup), possession (my ball), questioning to gain information (what's that), and attributes (big ball).

Imitation Is The Greatest Form of Flattery

Lily is moving into a stage where she is doing a great job of mimicking sounds and words that we say. We can't always tell if she actually knows that she is saying a word or just imitating what she's hearing, but it's quite amazing to see it all coming together. Tonight she was kind of talking/babbling after dinner when Susan said "ice cream." Lily responded clear as day - "ice cream". If she's anything like her father, I bet she knows that word.

Watch a CI Surgery Online

Here is an unbelievable opportunity to Watch a CI surgery online. 

On Tuesday, February 24th at 3pm CST, watch a Sequential Bilateral Cochlear Implant performed from University Hospitals Case Medical Center Rainbow Babies & Children's Hospital in Cleveland.  Cliff Megerian, MD, The Richard and Patricia Pogue Chair in Auditory Surgery and Hearing Sciences at University Hospitals Case Medical Center Implants will perform the procedure and provide a detailed narration. Audiologist Gail Murray PhD., Clinical Director of the Cochlear Implant Program, will supply additional commentary. The physicians will be available during the webcast to answer any email questions from viewers

Lily Watches History

While we limit Lily's television intake, we did let her watch today's historic inauguration. She did so with a smile on her face. She danced to the music of the marching bands and clapped when she heard the crowds applaud. She hasn't mastered saying Obama yet, but she's working on it.

Taking the Ears Off

It kills me to take Lily's ears of at night or when she gets in the bathtub.  I feel like I am taking her hearing away.  I am, but right now there are no other options.   Lily doesn't seem to mind, but she doesn't know any different.  We don't hear much when we are sleeping anyway, but I long to tell her, "Go back to sleep" and have her hear me.   Her CIs fall off periodically though out the day, but we get them right back on her head (when we hear the beeping) and she doesn't miss a beat. 

Lily's Dad and I are so attuned to the pitch of the CI beep that we can hear it though all kinds of noise. Sometimes we will hear that same beeping from a truck backing up and we have to stop and figure out if it is Lily's CIs.  I am so grateful to the Advanced Bionics CIs that are allowing her to hear, seemingly very well.  She hears the vent in the bathroom banging softly, the click of the thermostat and the wind outside.  Nosies I filter out.  Lily is constantly alerting us to sounds.  She points to her cheek when she hears something unusual. 

Researcher are working on an internal CI device and for me it can't come soon enough.  Some groups are saying it may be available in five to ten years.   I've read about human trials going on and the challenge comes with the internal microphone.  People can hear their own blood pumping and other internal noises.  The external microphone is still superior. 

Someday maybe Lily will have Superhero Hearing.  Her Uncle Chris would be quite jealous I think.  She'll be able to hear across rooms, though walls, and of course read lips.  Maybe she'll work for the CIA?  With her determination, I am already certain that she'll be able to accomplish anything she desires. 

Babylab 18-Month Report

A few excerpts from the Babylab 18-month report.  It is so interesting and encouraging to have this detailed analysis. 

Lily used a variety of communicative means and functions including:
1.    Gestures:  point, show, give, pull away, tap table, wave.  Her gestures were typically accompanied by vocalizations or verbalizations (e.g., bye-bye).
2.    Shared affect:  Lily smiled and laughed in response to adult laughter and to enjoyment with the game.  She maintained eye contact/shared positive affect with others.
3.    Vocalizations:  Lily often said “hm:” with a questioning intonation during these games.  She seemed to be expressing curiosity in what was next.  She produced babble sequences, and some cv syllables that were attempts at words.  These were often combined with appropriate gestures.
4.    Verbalizations:  Spontaneous words or word attempts included:  hat, help, pop, up, quack_quack, woof, uh_oh, more, bye_bye, sound for bird. 

Lily used a wide range of vocal, gestural and verbal behaviors.  She was observed to use vocal and language behaviors to comment, request help, request more of a game, interact socially, and indicate the desire to stop.  It was encouraging to note the range of behaviors and communicative functions she expressed in a brief set of games.  She also demonstrated comprehension of many of the comments made by her mother and the examiner. 

Advanced Bionics Calendar Girl

Every year Advanced Bionics solicits photos of kids using its products for use in an annual calendar it produces. Well ours arrived in the mail today and Lily is front and center as one of the kids highlighted in January - way to kick off the new year. Over 260 photos were submitted. It's great seeing so many other smiling, happy kids and it must be a great motivator for parents and employees at the company to see what a difference the technology is making. You can order the calendar here. Happy new year!

Words Emerge

Seems this last week, besides trying to manage Lily's cold and various input/output issues, has been filled with language emergence.  She has been saying lots of new words, that I haven't given her "credit" for, because I am not sure if I am interpreting them correctly.   But they sound pretty dang close.   For example, we were playing with a house today and she was pretending to wash her hands, then pointed above the sink and said "mir."   Sounded like Mirror to me.  Other words that have just happened include Ernie, Henry, Cookie, Ice Cream and Oprah.  She really loves Oprah.  Is that reason enough to watch 20 minutes of the show each afternoon? 

"Mama" = Later bedtime

Lily has said Ma even before she could hear.  I think it is one of the first sounds many kids make, so for it to be used as Mother makes perfect sense.  Same with papa, bubu or dada for father.  But now Lily is finally saying Mama with clear meaning.  She'll look at a picture of me, point and say Mama.  Then she'll look at me and smile.  Last night as we were trying to wrangle her to bed, she looked up at me, gave me a pat and said "Mama."   After that, how could I be mad that she was still up? 

New Book: I Promise To Be A Good Parent

Karen Rossi, Director of the Omaha Hearing School, and our Oral Guru, has a new book out called I Promise to be a Good Parent - A Book for Families and Friends of Young Children.  It highlights 10 key "promises" (aka language tips) for parents to make to their children.   The promises are all based on creating meaningful interactions between parents and children and optimizing the young child's development of security, confidence, listening skills, and spoken language. The ideas are simple, yet spot-on, and highlight the fundamental language ideas that Karen has drilled into us like engaging your child, involving them in normal everyday activities, and talk, talk, talk.   It would be a beautiful gift for a new parent.

Scream!!!

Lily's receptive vocab is through the roof.  And she picks it up very fast, especially if there is a boom, screech, plop, snap, or sound involved.  For Christmas, Lily received a great new book from one of her teachers called Row, Row, Row Your Boat by Child's Play. Illustrated by Annie Kubler.  This time verse two is, "Rock, Rock, Rock your boat, gently down the stream, if you see a crocodile, don't forget to scream."  Cue Lily's scream.  Third verse is,"Row, Row, Row your boat, gently to the shore, if you see a lion don't forget to Roar."  Cue Lily's Roar.    Then we work on scream and roar away from the book and she still knows it. Amazing.  For now her scream is soft and cute, but I'm sure that will change soon.

Kindermusik Class

Lily and I have started a Kindermusik class, thanks to a scholarship by G-pa, to both expose her to more music and increase her socialization opportunities with kids her age.   There were 10 or so kids from 18 months to 3 years all singing, dancing and playing instruments.  Every kid looked, behaved and dressed exactly like their Mom.  Too funny.  The class moved right along and Lily didn't miss a beat.  We sang songs that involved lots of movement and language.  "Shake your feet, spin around, march and stop."   When the kids got the bells out of the bag, Lily was right there grabbing with the rest of them.  She even sat on the blanket for story time, at least for a little while.  We always sit close for books, so Lily was soon up on her feet in front of the other kids pointing something out in the book, then she sat on the teacher's lap.  I don't think she is shy at all.  Ahhh those powerful genetics. 

CIs Help Deaf Cat Brains Unscramble

Interesting new article from the New Scientist about Cochlear Implants and cats.

Researchers found that brain activity that is "scrambled" in deaf cats develops normally if they are fitted with a cochlear implant shortly after birth. The finding may explain how deaf children given implants as babies can learn to speak almost as well as hearing children.

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. 

Mastering Grandpa and the Shhhh

As we walked up to Grandma and Grandpa's house today, Lily saw Grandpa and unassisted said, "Grandpa."  Add it to the list. 

I had also reported that Lily had not said the Shhhh sound, but the next day she was playing with her kitchen sink and instead of sssss for the water sound, it was now Shhhhhhh.  Lily's Dad's Uncle recently installed a new shower head in our bathroom which changed the tone from a high pitched water squeal to a lower water hummm. 

Maybe Lily was hearing the different water sounds from the sinks and decided her new sink (with Granite-like counter tops), makes a Shhhh sound instead of a Ssss.  Whatever the case, we'll take it. 

Cute Barrettes

We were dining out the other day and a lady told Grandma that Lily's barrettes were so cute.  We think she was referring to Lily's CIs because Lily wasn't wearing any barrettes.  Maybe this is a new fashion trend for hair wear.