Life is Bliss - Lily's Cochlear Implant Journey

Our daughter Lily Bliss was born in June 2007 with profound hearing loss. At 10 months old, she became one of the youngest in Nebraska to receive bilateral cochlear implants. This blog is the story of our hearing journey and the proof that Life really is Bliss.

Baby Lab - 30 months

Lily Observations in the Baby Lab. 

1.  Lily continues to expand the length of her spontaneous utterances.  Some new complexity observed.

    a.  Embedded "wh" pronoun and past irregular - "Look what I found"

    b.  Semi-auxiliary - "Lemme see; Lemme stand"

    c.  Consistency increasing for +s on plurals and tz on possessives  - "comb baby's hair"

    d.  New forms of negation - "I have no crackers."

    e.  Reflexive pronouns - "by myself"

    f.  Noun phrase elaboration - "Your big spoon"

2.  Nice verbal planning observed today! -  "I gonna heat it up"  "Lemme heat up my soup"  "Now eat my soup"

3.  Exciting to see how specific her vocabulary is and how rapidly she picks up new words (jeans, pacifiers, alphabet soup).

    a.  Strong phonological (speech) development supports word learning.

    b.  She attempts difficult words - "Alphabet soup"

4.  Mom continues to provide beautiful recasts - You are filling in the details in your models that sets the stage for additional grammar.

5.  Some complex ideas emerging in her language.  "I know..."  "Now I...(time concept)"  "What else?"

6.  Speech intelligibility is strong for her age - It may vary when attempting a mouthful of ideas.

7.  Additional colloquial ideas - "There ya go, babe"

Audiology Report - 18 months post implants

Here are the highlights from our latest audiology visit in November. 

Results from today's testing indicated speech awareness thresholds (SATs) at 25db HL for the right side and 30 dB HL for the left side. Additionally, speech recognition thresholds (SRTs) were obtained at 20 dB HL for the right ear and at 20-25 dB HL for the left ear.  In the bilateral condition, an SRT was obtained at 20dB HL.  (For the audiologists that read this blog, we're always open to suggestions on how to make this better)

Responses to narrowband noise were obtained today at 30 dB HL and at 35 dBHL with the left processor.  Lily appeared to tire of testing before a more complete audiogram could be obtained.   An audiogram done in May was consistent with these findings. 

The NU-Chips test was administered.  Right CI only - 14/15 - 93%, Left CI only - 100%, Bilateral CIs 14/15 (93%).  The two Lily missed were comb and she touched ham instead of hand.   

Modifications to the Map:  Lily's maps have been stable for quite some time. At this visit, the T and M levels were globally increased approximately 5 cu's on both sides. 

COMMENTS:    Lily continues to make exceptional progress with her cochlear implants.  She is now able to participate in closed-set speech perception tasks. On the NU-CHIPS, which is a task that required Lily to identify words with the same number of syllables, similar vowel and varying consonant, she scored 93%-100%  Lily is ready for a more difficult closed-set task at her next appointment. 

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)

Holiday Listening and Language Activities

We have done loads of holiday activities with Lily's teachers to learn about Christmas and all its parts. Here are a few that Lily loved:

1)  Two sets of foam stocking ornaments and all the parts.  Lily had to tell her teacher what she wanted on her stocking, like a cuff, buttons and a wreath, and then her teacher told Lily what she wanted on her stocking.  A language and listening activity.

2)  Clifford's First Christmas Book - A new favorite!

3)  Building a candy cane out of beads and a pipe cleaner, which became an ornament.

4)  A listening activity where we had foam tags and wrote activities on them.  Then Lily would either pull them off or put them on the tree and do the corresponding activity.  Of course the string that was supposed to hook the ornaments on the tree suddenly became a jump rope.   Lily loved jumping over (at 2-3 inches) and crawling under the rope.

5)  A small tree with hundreds of mini ornaments, garland, stars, etc. which we sorted through and discussed.  

6)  Fisher Price Christmas scene with Santa and his sleigh, a hot chocolate stand and an ice skating rink.

7)  Matching cards of kids doing things with the objects they wanted for Christmas and putting them in the mailbox for Santa Claus.  

Direct Hit

Saturday night we went to a party where Lily was the unwilling recipient of a drink being dropped on her head (and her headpieces). We quickly sprung to the rescue to dry them off and apparently all are working as designed. Whew!

Made To Order

We eat out a lot. More than we should, but at least it gives Lily an opportunity to practice talking and listening in public. Today Lily ordered her entire meal as the waiter asked her what she wanted from the kid's menu, including main dish, side dish and drink (hot dog, pineapple, and chocolate milk no less). I love that she's a confident kid who asks for what she wants... and mostly gets it - just like her mother ;-)

Christmas Vocab

We've been learning a lot of Christmas and holiday vocabulary such as wreath, stockings, ornaments, tinsel, reindeer, sleigh, Christmas tree, on and on and on. and we've tried to experience all the traditions and experiences to enhance that learning.  Here Lily is making cookies and putting together a gingerbread house.  Her favorite part was sampling the products. 

MacArthur Bates Word Inventory - 28.5 Months

For Lily’s latest scores on the MacArthur Bates Communicative Development Inventory (MBCDI), she was credited with 603 words. 

For girls at 28 months, this word score places her between the 75th and 80th percentile. These are normally hearing kids/girls - Whooo Hoo!!!   The MBCDI ends at 30 months of age – and they see ceiling effects (kids are learning lots of words that are not represented on the scale). 

While this is not a test of overall language proficiency, speech or listening, it is a very interesting measure in language/vocabulary growth. 

Lily's First Movie Theater Experience - Fantastic Mr Fox

This past weekend we went to Fantastic Mr. Fox, Lily's first movie at an actual movie theater.  She loved it.  The movie was a perfect mix between a kids' puppet cartoon, although it is stop-motion animation, and sophisticated adult humor with Latin name references and deep emotional struggles.   The primary narration was done by the fantastic George Clooney. 

Lily spent some of the movie climbing up and down on her chair and sitting on the small fence in front of us and was also filled full of popcorn and licorice, but overall she watched and listened to the movie like a champ.  It was difficult to know how much of the movie/language she could understand, but I think this will come as she gets older.

At the end of the night, Lily walk out the big movie theater doors and announced, "I had a great time."  So did we!!  Lily's Dad is now dreaming of the day when we can start going to movies in the theater again on a regular basis.

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.

Lily Sings Her ABC's

Lily made a quick recording on my iPhone of her singing the ABC song. American Idol here we come.

Download Lily Sings ABCs

How do People Choose a Cochlear Implant?

One of the interesting pieces of research we looked at during our AB Mentor Training was how people choose a Cochlear Implant.  What factors matter to people the most? 

Here are the results, from greatest to least important:

1)  Hearing Performance

2)  Reliability/Durability

3)  Manufacturer Support

4)  User Friendliness

5)  Aesthetics/Cosmetics

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. 

Advanced Bionics Mentor Training

Lily's Dad and I are now official Advanced Bionics Mentors, after going out to Valencia, California and meeting the AB staff, touring the facility again and hearing why Advanced Bionics is the leading Cochlear Implant manufacturer in the world. 

We had previously committed ourselves to helping anyone on a CI journey, but hadn't really thought of ourselves as mentors or advocates on behalf of the AB brand, until we attended the recent training.  

What we understand now about Advanced Bionics is:

1) AB is first in total system reliability.  That means their internal device is over 99% reliable and their external processor has the lowest average 3-month failure rate of only less than 1%.  We've had no problems at all after 18 months of use.

2) AB has the best hearing performance with their:

• HiRes for the best hearing in noise, music and speech development.  And with HiRes 120 I think people are hearing even better, especially music.
• Auto Sound - You don't ever have to change the programs. You set it and forget it.  Even on the BWP, we set the controls and never move them.  The Input Dynamic Range (IDR)/Window is 80dbs, that is the widest of any implant, letting in the most sound possible.
• T-Mic for the most natural hearing and wireless connectivity.  We don't use the T-mic yet, but compared to a regular BTE mic, there are huge sound and usability advantages.  We love the off the ear Mic with the BWP which allows nothing on the ear, but still maintains the same language and listening advantages as the Harmony.  This is critical for a pre-language learner.  

3) Upgradeability without surgery - This was a big one when we made our choice. The internal device is so sophisticated, the software potential is tremendous.  Will Lily have to have another surgery in her lifetime?  I'm certain of it.  But who knows when and what that next iteration will be.  Hopefully it is 20+ years from now. 

4) Outstanding Service - We've had a great experience with the staff, but didn't really test out the service before we selected AB.  Now I would call the company if I was making a choice again and ask dozens of questions.  Also I can't testify to the customer service/technical support because we've never had to use it. That is a good testimony.

For me some of the new comparative studies done by independent centers around the world are a big reason I am excited by AB.  These studies demonstrate that the Advanced Bionics implant with some of its unique components is outperforming its competitors.  While we guessed that their sound performance was best when making this decision for Lily, now the research is confirming it  (citations and research available on request).

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.