Life is Bliss - Lily's Cochlear Implant Journey

Baby Lab - 22.5 months

The Baby Lab was great today.  Here is the report.

1.  CVC - Consonant Vowel Consonant in bus and pot for spot. 
2.  Using sh in syllables - we just started hearing sh last time.
3.  Noticed a lot of nice answering no, yeah, a word instead of hmmm.  Starting to build a conversation. 
4.  Ki (pig) gigi for chicken.  Starting to hear more back of the mouth sounds.
5.  Used an f in imitation of Farmer Fred (fwr- fred : fwawa - farmer.  Making correct syllable numbers. 
6.  Words and word attempts are more frequent than babble. --  This was very interesting. They said kids start by babbling and incorporating a few words.  Then they move to mostly words, incorporating a few babbles.  Who knew?
7.  While playing with the barn, Lily was attempting word combinations (not yet clear to us.  Consonants dropping out in longer strings is natural)
8.  Such nice expansions - She says hat and you give a model and immediately "stretch her taffy."   So natural and fun to watch. --  Mary Pat calls expansion  stretching or pulling the taffy. 
9.  Vocabulary continues to explode.  Yeah!!

Great Day!

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. 

Wis. could be first to require cochlear implant insurance coverage

A new AP article about Wisconsin's legislature passing a bill mandating insurance coverage for CIs, hearing aids and related treatment for those under 18. 

"Wisconsin could become the first state requiring private insurance companies to cover cochlear implants for children with severe hearing problems.  The state Legislature passed a bill Thursday requiring private health insurance plans to cover cochlear implants, hearing aids and related treatment for those under the age of 18. Gov. Jim Doyle has promised to sign it into law." 

Because our bill in Nebraska LB 493, that mandates CI coverage for all and doesn't address hearing aid coverage, continues to be stuck in committee until next year, I thought I'd pull some interesting notes from the Wisconsin press coverage.

"Wisconsin's insurance commissioner estimated last year that a similar, but slightly less-generous version of the bill would cost people enrolled in private insurance plans less than 10 cents per month. The analysis estimated that 1,200 kids in Wisconsin schools were deaf and up to one-third of them had cochlear implants."

"The potential cost of the mandate is unclear and will vary widely by company, said Phil Dougherty, senior executive officer of the Wisconsin Association of Health Plans. He said some of its members already provide coverage for hearing aids and cochlear implants while others do not."

Sen. Lassa [one of the authors of the Wisconsin bill] also noted research that suggests that Wisconsin taxpayers stand to save as much as $5,000 to $10,000 per child per year in reduced or eliminated special education services and a savings of about $1 million per person over their lifetime if more children can receive hearing aids and cochlear implants. Currently, thirteen states, including Minnesota, require that insurance companies cover hearing aids."  See Senator Lassa's Wisonsin Press release for more info.

Momm-Y and Dadd-Y - Language Refinement

Lily is refining many of her early words.  This week, Mama and Dada have become Mommy and Daddy.  She also adds 2-3 new words every day.  I have to keep a notepad close by to record all of the words. 

As we approach her one-year hearing birthday, we are amazed at the progress.  One of the thing we read early on is that we could expect "a year's progress for a year's hearing."  Lily is well beyond the language of a one-year old.  For us, it seems like that benchmark no longer applies. 

I am going to stop keeping track of Lily's expressive language, but will keep the expressive list posted on the side of the blog for a while to demonstrate her language at one year of age.  I know I am missing some of her words, but will keep filling it in for the next week. 

We're still working on word combinations, but we are hearing certain words get closer together like "Mama..Up" and "Daddy..jump".  Our SLP Staci said she is putting syllable breaks in longer words which is "very advanced."   Some of our strategies to encourage word combos are expanding on her single words like "up."  You want up?  And modeling language like "Mommy pick me up!"  Lily will now respond, "Yes."

New Research on Cochlear Implant Failures

I came across this research abstract at COMD News website. The post highlighted new research published in the ORL - Journal for Oto-Rhino-Laryngolgy. The research looked to "present a failure analysis after cochlear implant revision surgery in a large series of children and adults and to assess the outcome and audiologic performance." 

The researchers looked at 56 device failures in a variety of children and adults, looking at multiple brands of devices as well. Here's how the failures were categorized; "The most frequent causes for revision were hard failures (58.9%), most commonly caused by traumatic impact (37.5%), especially in the pediatric population. Soft failures were less frequent (21.4%)." 

The good news:

"Surgical reimplantations, although challenging in some cases, were performed without complications and with an electrode insertion depth comparable to that at the time of the initial implantation in all patients. The average audiologic performance improved by 2.4 dB in pure-tone perception levels after reimplantation. Conclusion: The cochlear implant failure rates vary between children and adults as well as between different implant manufactures. However, cochlear reimplantation is safe with excellent and predictable results in audiologic performance."

Here's a link to the Research Abstract.

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!

Extreme Moments of Every Day

There are moments everyday where I am so thankful and amazed that Lily can hear.  Today in the car she started picking out words from songs, both on the radio and those that we were singing, like "happy" and "mama."  She was "singing" right along with us.  I love to sing If You Are Happy and You Know It....Clap Your Hands, Stomp Your Feet, Shout Hooray and Lily does all the actions and now shouts HOO-RAY! 

We were even out to the Nature Center today and I hollered at Lily to stop as she was running out the door, about 20 feet away.  Lily stopped and turned around.  At that very same moment, our friend Kimberly asked how Lily's hearing was doing and we said, "Well, you can see she can hear us."  And Kimberly responded that her kids didn't listen nearly as well at that age.  So fun.

And then there are moments on some days where I fell sorry for myself and for Lily.  For instance when Lily is rolling around on the floor at Kindermusik and her CIs get rubbed off, they beep.  I frantically try and get them back on but know the Moms are wondering what that beeping is and thankful it is not their kid.  Or when it is late at night, we are out somewhere and one of Lily's batteries run out.  Now she can't hear.    Or when we're in the car and her CIs get rubbed off on the car seat.  I pull over, if I'm not at a red light, contort my body and get my hand to the back of her head to slip the CI back on.  (Thanks to the Hanna Andersen Hats, which we still wear in the car, this doesn't happen too often.  But someone has asked me if the hat helped to shape her head.   I said no and walked on.)  Or when everyone stares at us in the Grocery Store.   Or when I put her to bed and say "time to take your CIs off" and she screams "NO" and runs, it breaks my heart.  However, I think I'd feel the same way.

Thankfully the moments that are filled with joy, amazement and thankfulness far out number the moments of anxiety, frustration and self-pity.  Lily is such a wonderful kid, that it is easy to stay positive about her progress and accomplishments.  I always try to remain upbeat, or at least calm, and do whatever it takes to give Lily the opportunity to hear and thrive at all moments of the day. 

Asking For Sound

Lily likes to watch cartoons of Mickey Mouse and Oswald on Mom and Dad's iPhones - she picked up this habit on long plane flights as we tried to entertain her. Usually she sits quietly and watches with an occational utterance of a character's name or word she knows (ex: Elephant, Weenie, Henry, etc.). This weekend she was sitting on my lap and I pulled up a Mickey Mouse cartoon that she has watched a number of times. The iPhone's volume was turned down and Lily immediately looked at me, pointed to her ear, and said what sounded like the words "Sound, Sound, Sound" - like "Dad, I know this is supposed to be playing music. Where the heck is it?" The next night she did the same thing, only her CIs were off as she was getting ready for bed. We put one back on and let her watch the clip. Hopefully this means she is beginning to associate sound from her CIs and the desire to have sound present in her life.  

Parents Magazine - May 2009

Interesting snippet in the May, 2009 Parents Magazine about Cochlear Implants.

"Deaf kids who receive cochlear implants report an improved quality of life - and the younger the age at which they receive them, the better, finds a new study in the Journal of Speech, Language and Hearing Research." 

Comprehensive Article on Hearing Loss and Causes

Not a new article, but an excellent summary titled Newborn Hearing Screening — A Silent Revolution by Morton and Nance in the New England Journal of Medicine (May, 2006) about causes of hearing loss, both environmental and genetic. 

Easter Egg Hunt - Fun and Language

Lily's first Easter Egg Hunt at Grammy and Pap's house was a huge hit. In no time at all, Lily was running around the yard, collecting eggs and putting them in the sack.   She kept saying "egg" and then searching for the next one.

It also proved to be a powerful language opportunity.  We'd get down on her level and describe where the eggs were, like "behind the tree" or "next to Daddy's foot" or "beside the windmill" and tried to avoid pointing to the egg, unless she needed assistance. 

Everyday it seems Lily is saying more and more and of course understanding more and more.  Her memory is getting longer and she'll reference something that happened in the past to get her message across.  All weekend she wanted to keep going back outside to find more eggs.  She also learned the word money.  Every time she would pull an egg apart, the coins would fall out and she'd yell money! 

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. 

Words Flowed with a Box of Grass

We had a fabulous session last Thursday with both our SLP Carole and Hearing Resource Teacher Faye.  Lily literally talked non-stop with all the games and toys they brought.   First we worked on a card with nine pictures and nine matching cards.  This was no problem for Lily and she said all the words, made the animal sounds and repeated whatever they threw out.

Then Carole brought over a box full of Easter "grass" in which she had hid all kinds of toys and eggs.  Lily said or repeated nearly everything as they played - open, push, slide, dig, eyes, eggs, Moo, woof, dogie, etc.   She even recalled activities from previous weeks when she saw the set of eyes and nose from the Mr. Potato Head.   Very fun activity and amazing outcome.  (See picture below)

Lots of new words:  knife, tear, two, Nicole (cole), ...  

Grandpa is working on Turn On and Turn Off.  The TV is a powerful tool to drive those double words.  Grandpa says they are almost there.

Language Theme - Airplanes

Our hearing resource teacher Faye has done a number of excellent sessions with Lily on airplanes.   She brought the old Fisher Price airport, airplane, trucks, people, luggage, chairs, etc. which has been an enormous hit.  There are a lot of language possibilities with an airport. 

We've also read books about airplanes including Donald Crews' book titled Flying and made an airplane with a cardboard box.  We've had lots of fun with this.  Here are Lily and her babies flying off to somewhere exotic. 

Otoacoustic Emissions (OAE) and Tympanometry

Interesting article and photos about which parts of the hearing system are screened with an Otoacoustic Emissions (OAE) test and a Tympanometry.   Lily had a OAE in the hospital on Day 10 (as part of the mandatory newborn hearing screen), one at the first audiologist's office and another one at the second audiologist's office.   The audiologists have also used the tympanometry on a couple of occasions and Lily's eardrums work just fine. 

Here is a sample of the article to get you really excited:

"The three main parts of the ear are the outer ear, the middle ear, and the inner ear (cochlea). When the hearing system is functioning as it should, sounds enter through ear canal, causing the eardrum (tympanic membrane) to vibrate, which in turn moves three small bones in the middle ear (hammer, anvil, stirrup).  This movement stimulates fluid movement in the inner ear (cochlea) and the sound signal is transmitted through a nerve to the brain. At the same time, the inner ear emits small signals, called  "otoacoustic emissions" that move back through the middle ear and into the ear canal.  These emissions are picked up and analyzed by the OAE screening equipment."

"A health care provider can often perform tympanometry which measures the movement of the eardrum.  This helps the provider know whether there is fluid/infection in the middle ear.  Tympanometry cannot test the functioning of the inner ear."

Songs - Singing and Dancing

Lily loves music.  She loves kids songs (especially Raffe, Elizabeth Mitchell, and the Tune Ups CD by Chris Barton), Kindermusik songs, nursery rhymes, Library Story Time songs, and the Dixie Chicks.  

However, she was not happy today when she turned  on the NPR Classical Station at full blast.   It was the first time I've seen her running screaming out of her playroom.  Fortunately her CIs cap the sound at approx 90 dbs, so no damage was done.  She can listen to all the loud music she wants.  Maybe it was the Classical Music she didn't care for? 

Anyway, we sing a lot around Lily.  Songs she likes, does lots of the actions to, and is starting to sing some of the sounds/words are: 

Twinkle Twinkle
Itsy Bitsy Spider
I'm a little Teapot
Thank You Song
If you are Happy and You Know It
Walk Around Rover
When I Stand Up I Feel so Tall
There's a Baby at the Door
Row Row Your Boat
Ring Around the Rosie
Twinkle Twinkle Traffic Light
Wheels on the Bus
Open Shut Them
Bounce Bounce Bounce

She also responds really well to the Clean Up song which goes xxx away, xxx away, time to put the xxx away.  So simple, yet magically effective.

I don't know how she will feel about music when she is older, but we've seen and read about lots of teenagers with CIs who connect their Ipods directly.  There is a great simulation of what he the Hi Res 120 sounds like on the Advanced Bionics website.  Prior to Lily receiving her CIs, we read so much about how people with CIs have no music enjoyment.  While it might be the case for some adults, it just doesn't seem to be the case for Lily. 

Phrases and Music Listening

We are anxiously waiting and encouraging Lily to start using two and three word sentences.  Her vocabulary is building towards 100 words and this is the next language step. 

Lily has started to say some phrases that are like one long word to her, but really are multiple word phrases such as:  Up up we go; Up, Up, Up whee; All Done; catch it;  Dada car; ahhhhh boom (airplane files, airplane lands), and up above the worl..... (she says this whenever she sees a star). 

The other thing I've noticed more recently is that she is able to hear words in a song on the CD player and respond, especially to her kids' music.  When words like swish, tap, wave, clap, jump or mama are said, she responds with an action or repeats the word.  

It feels like each step is another gift. 

Chocolate Ice Cream

One difficult thing for kids learning language is categorization.  Yesterday we saw one of Lily's first attempts at identifying something within a broad category.  Of course it has to do with ice cream.  

When going down to meet Aunt Kelly and Uncle Eric for ice cream, we asked Lily what kind of ice cream she wanted.  She immediately said Chocolate (Chah-lit).  We thought did she really just say Chocolate?  So we said how about strawberry?  Strawberry.  Vanilla?  Vanilla.  Lemon?  Lemon.  NO Chocolate.  We couldn't convince her of anything else. 

Then we went to the ice cream shop and said, "OK Lily tell the lady what you want," and she said "Chocolate."  And the lady understood what she wanted.  So cool!!!

Lily Pic of the Day

Lily hams it up in front of the camera.