Life is Bliss - Lily's Cochlear Implant Journey

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.

Lily's First Haircut - "That's not so bad"

Lily had an official first haircut for which she sat very still.   We were pleasantly surprised, because of our previous attempts at giving her bangs a little snip.  It must have been the big cape, the big chair and the big mirrors that captured her attention just long enough for the hairdresser to trim her blond locks.  Lily didn't really have much hair until 18 months, so we were only going for a trim. 

As the hairdresser sprayed her hair down with water, Lily said, "That tickles" which was quite amusing for the whole salon.   After finishing up and getting some candy, Lily jumped down and said "That's not so bad."  Again the entire place erupted in laughter. 

Haircuts were situations that "pre-Cochlear Implant" I wondered how we would do it so she could hear.  Fortunately, it didn't present a problem at all.  When the hairdresser was cutting one side, we just flipped the head piece down and as she moved to the other side we replaced the head piece and took the other one off.   No problem.   Lots of anxiety created over nothing.   

Another Bilateral Benefit - No Off The Air Time

Well we had our first scare with a head bump. Lily was running on the wood floors and slipped. She conked her head on the door jam or floor (we're not really sure which). The spill sent her CI flying and left her with a little bloody scratch at the magnet site. Luckily it doesn't appear to have caused any swelling or problems. We put Neosporin on the cut and left her CI off for a day and a half to let the cut heal. Initially, Lily told us not to put her CI on her "owwie", but after the first day everything seems to be okay. Now she's telling us, "It's all better." 

Luckily through this whole ordeal she was still "on the air" with her left ear. While it's a small sample size, she does appear to respond better when she has both on and working. She appeared to lip read a little more when she was only wearing one and it took more to get her attention in noisier environments, but at least she could hear while her right one was healing.

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.

Pre-Halloween Experiences - Costumes, Books and Song

Lily has been getting lots of pre-Halloween experiences.  She's read a dozen books about haunted houses, pumpkin patches and bony skeleton fingers.  And the big news is that she decided to be a "puppy dog" for Halloween.  Very cute pictures to come soon. 

Here Lily and Barb, from the Omaha Hearing School, are trying to decide what Lily should be for Halloween.  Maybe a ghost?   Then they read/sang a book.  Each page was a Halloween picture. This one was the Ugly Witch - The witch goes "Hee Hee Hee" and of course they made an ugly face.    

The final picture demonstrates that it is getting colder here and Lily is dressed so stylishly in her leapord print and hot pink accessories.  Pretty fancy!

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." 

Are You Fancy? No, I'm Just Lily.

Fancy Nancy by Jane O'Connor is a big hit in our house this week.  Faye, Lily's hearing resource teacher, brought us the book.  She reasoned that if Lily loved fairy wings, she'd love Fancy Nancy.  She was right. 

Fancy Nancy loves to make everything fancy including her family members and she loves to eat parfaits.  Both are things Lily loves too.     

If we ask Lily if she is fancy, she says "No, I'm just Lily Bliss." 

Online Music Therapy Courses and other CI Experts

Last week, I watched a free online session with Chris Barton, board certified music therapist, hosted by Advanced Bionics. Chris  is an award-winning composer, performer and music therapy guru.  I think I've raved about her before, but this online session reminded me of how well she understands kids with CIs and how music therapy/music training is a must for kids who are learning to listen and talk.

The session I attended was primarily a Q and A, but there are at least seven other free online courses with Chris Barton in Advanced Bionics's Listening Room. 

There are also lots of other sessions in their eLearning Library by some of my favorite CI experts like Dave Sindrey, Mary Koch and Amy Robbins. Specially look at Amy Robbin's intervention Activities for ITSIs (Infants and Toddlers with Cochlear Implants).  Check it out!

Learning to Fly

On our search for a Halloween costume, we stumbled upon these beautiful pink wings with glitter that falls off wherever you wander.  Lily took to the wings instantly and now believes she can fly.  Not sure what she was doing in this picture, but she was insisting that she, baby Pooh and daddy Pooh all climb into the backpack together.  Our little angel. 

You've got a Talker There

Pretty much every where we go now, someone comments on how much and well Lily is talking.  From grocery store clerks and people in the Library, to Realtors and retail check out people.  Not because they see Lily's Cochlear Implants or have any idea of what they are, but because she is talking all the time and her speech is very clear. 

The grocery store clerk said, "She talks so well and you can understand everything she says.  How old is she?"  This is at the same time another grocery store clerk is throwing balls with Lily in the aisle.  Lily is telling him to "throw the ball."  He carefully tosses the ball and she say, "Uh oh, I missed it."  No worries.  He ran and picked it up to throw it again.

The slightly odd thing is on this same trip, a man started signing to Lily.  He could hear, because he had already informed me (unsolicited), that I was debating over two metal pans that were the same.  "No," I said, "One has a lid and the other one does not."  Or as my friend Yvonne would say, "Back off."  :)

Two other people have signed to Lily once they could see her CIs which I find very interesting. Not sure if they were deaf or not.   It will be facinating to watch this new generation of kids with hearing loss and the enormous amount of opportunities that have opened up to them because of their Cochlear Implants.

ABC's And Beyond

Lily is getting a lot of practice learning her ABC's. She loves the song and sings it often. We have a magnet board with all the letters and Grandpa practices almost daily on the computer with a variety of videos and YouTube resources (what a wonderful resource the Internet is). Anyway, Lily started singing by herself last night and got through the whole song correctly (assuming LMNOP is a word/letter). 

She's also mostly mastered counting to 10 (and sometimes 11). Last week she was occasionally missing 2 and 7. This week she seems to have added the 2 consistently and is working on remembering 7. Good stuff all around!

From "Where's the Potty" to Potty Trained

Today I looked back at the blog one year ago.  At that time, I wrote how excited I was that Lily's receptive language was building.  Specifically, we were excited that she knew where the "potty" was. 

One year later, Lily has been "potty trained" for more than six weeks, except at night (almost there) and a few Fridays when her parents aren't paying as much attention, and she can carry on an extended conversation about the potty and the things surrounding it.  Her receptive language is untrackable.   My what a difference a year has made.  

Learning about Jokes

Tonight we were working on the concept of "joke."  We filled Daddy's sink up with bubbles and toys and then I told Lily that we played a joke on Daddy. Lily thought this was very funny and was eager to tell Daddy, "We played a joke on you."  Daddy asked, "What did you do?"  Lily responded, "We put bubbles in sink."  Not sure she got the whole concept, but she was certainly a willing participant in the idea of a "joke."

AB Harmony vs Nucleus 5

Advanced Bionics has posted a new comparison chart versus Cochlear's latest Nucleus 5. Click on the link for more insights.

Skinit for Advanced Bionics BTE

Advanced Bionics has started a very cool partnership with Skinit, maker of "skins" you can put over your Advanced Bionic BTE Cochlear Implant or computer or IPhone or whatever.    Lily can be a Hawkeye one weekend and a Husker the next.  Or maybe have butterflies one week and then Minnie Mouse the next.  Right now we are sticking to basic tan.  In fact, because her hair is finally filling in, we get far fewer stares and questions these days.  The headpieces and cords often seem to just disappear into her hair.  I am sure in a year or two, Lily will be ready for sparkles and rainbows. 

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.

I Have Something To Say

This may have been a first, but I'm sure it won't be the last. The other night Lily's Mom and I were having a conversation. After a few minutes Lily decided to interrupt us by saying, "I have something to say." We stopped and turned our attention to her and asked her what was on her mind. You could see her thinking as she said "Hmmm". It was like you could see her thinking, "Wow, that worked at getting them to focus on me. Now what?" She responded with "Blah, blah, blah." It was quite a funny and proud moment. 

Daddy, I Want Play Baby Lab

Last night Lily rushed into the house saying "Daddy, I want play Baby Lab." She asked me to put on her "vest" and get her babies. At the baby lab in Boys Town Lily wears a vest that has microphones built into it so that Mary Pat and gang can hear and record her utterances during the lab. We found a vest and went to our play room. She then told me I was "pretend Mary Pat" and we had a grand time playing games and practicing saying words. Who knew speech therapy could be so fun ;-) 

Music and the Cochlear Implant

Hearing Health Magazine recently released a variety of articles on Music and the Cochlear Implant. 

In the first article, Ward Drennan, PH.D. writes, "The primary weakness of CIs is their inability to deliver pitch information. There has been a long-standing controversy regarding what acoustic information normally hearing people use to allow them to perceive pitch." 

He continues later in the article, "The CI encodes frequencies according to place. Unfortunately, however, most of the fine timing information that could contribute to pitch is lost. The implant divides incoming acoustic information into 12, 16 or 22 channels, whereas normal hearing gleans information from 30 to 40 channels. Even in the best scenario, place information is already degraded relative to normal hearing. The degenerated condition of the auditory nerves of implant recipients further limits the end result to eight or nine functional channels. Additionally, CI-users lack information that hair cells normally “gather.” Groups of hair cells and their associated nerves, working in tandem, have the ability to capture the detailed pitch timing of each wax and wane of the acoustic wave up to 3,000 to 4,000 hertz. This ability is almost completely lost in the implant-user, who rarely gets such information greater than 300 hertz. Thus, the refined pitch, chords and melodies in music that normally hearing people enjoy often become a garbled, blurred mess when heard via a CI. For the CI-user then, the ability to perceive both place and timing information about pitch is marginalized.  Despite these unfortunate limitations, rhythm perception, an essential element of music, is nearly normal in CI-users. "

He goes on to say, "The brain is the CI-user’s greatest asset. With training and effort, the CI-user can utilize the garbled mess they hear, perhaps finding cues in the implant stimuli, and make the best use of music based on memory. Also, in the vein of Charles Ives, in which any sound might be considered music, the CI-user can learn to find aesthetic value in the “new” sound. Perceiving art, and art in sound, is primarily a state of mind." 

Finally he discusses Cochlear Implant company strategies to improve music listening including those of Advanced Bionics and Cochlear.

Great articles!!!