Life is Bliss - Lily's Cochlear Implant Journey

Lily’s Birth and the Start of Our Hearing Journey

This year on Thanksgiving we are looking back over the past year and thinking about all that we have to be thankful for.   We found this post that I began last year, and finished this year, and thought it was appropriate for a little reflection on Lily’s birth story and the start to our hearing journey.

Thanksgiving has truly taken on a new meaning for Lily’s Dad and I.  There is nothing that has ever meant more to us than our baby Lily Bliss.

After a good pregnancy, I went to the hospital in the evening with contractions about four minutes apart.  We called our Doula immediately and asked her to meet us there.   Without too much detail, the contractions continued until 5am at which point natural childbirth sounded less and less appealing.  Our Doula tried all her pain relief techniques - birth ball, bathtub, walking, rubbing, music, etc. but nothing seemed to soothe the pain until the epidural. 

This was the right decision and made the next 12 hours go much smoother.  Each hour, I was flipped and checked for any dilation.  At about 6pm and another new set of nurses, they decided it was time to start pushing.  After pushing for 30 min or so (it is all a little blurry) our doctor used forceps and said I had to push her out or we’re going to the back for a c-section.  I was so determined to push hard and was trying to recall all those birth books I had read – visualize I remember thinking – I don’t want a c-section.  At that moment our doctor said the baby had come down eight miles from the last push.  It worked.  I touched the head and it looked like we were home free. Our doctor called off all the people who were standing by including the extra nurses from the shift change.  However as suddenly as she sent them away she called them back, said the shoulders weren’t moving and we needed to go to the back for an emergency C-section.  It was like the show ER except that we were the patients. 

Lily's First Husker Game

Lily attended her first game and what a game it was. The Huskers pulled it out with a record breaking field goal to beat the Buffs. She enjoyed all the people and the festivities and clapped when she heard the roar of the crowd.

So Thankful

This year our family has soooo much for which to be thankful. In addition to the fact that Lily's grandparents avoided the terrorist attacks on their trip to India (they were in Mumbai just last week), to the literally hundreds of people who have provided support, love, teaching, understanding, research and just about everything else on our first 17-month journey into hearing and parenting, we are forever grateful for the gifts we've been given. So on behalf of our family, thanks to you all.

Story Time at the Bookstore

Lily and I tried story time this week at a local bookstore.  It is a huge store with high ceilings and lots of noise.  I wasn't sure how much of the Thanksgiving books Lily would hear, but sat close to the lady reading the books anyway.  There was a plate of cookies on the table closest to us, which caught LIly's eye and may of been her incentive to sit and listen to the books.  She was also watching a baby on the other side of the room and kept telling me "Bae-Ba".   As Lily listened to the books, the lady read, "...and the people shouted Hurray."  Instantly, Lily threw her arms in the air.  Did she really hear that?  Then the lady said, "...and they all clapped their hands..." and Lily immediately clapped her hands in response.  Then I started cheering and clapping my hands really loud (in my head), and sat amazed at what she is picking up. 

Potential Poster Child

We had our six month check up with our surgeon this week.  He said things looked great and we didn't need to see him again unless we had problems.  Then he said Lily was probably going to be their Poster Child.  I always thought this was a bad thing, but now I know, being on the poster is good.  It means your kid is doing great and can be an inspiration for others taking your same path.  So Lily is not on the poster yet, but we are working on it. 

The Future Is Bright - Light May Help Future Cochlear Implants

In other research news, The Times of India published a story today about Northwestern researchers utilizing infrared light to stimulate neurons in the inner ear as precisely as sound waves. The discovery could lead to better cochlear implants in the future. 

Using guinea pigs as, well, guinea pigs, they have been able to precisely stimulate cells in a manner not possible using electrical stimulation methods used in today's cochlear implants. Here's an excerpt from the article:

"Richter said that electrical stimulation of the inner ear by a cochlear implant produces blurred maps, but the light stimulation produced maps that were as sharp as those produced by sound in hearing guinea pigs. 

While it's a mystery how light stimulates the neurons, as they do not contain light-sensitive proteins, Richter hypothesizes the heat that accompanies the light may play a role, and his team is now investigating the long-term effects of heating neurons.

The findings were presented at the Medical Bionics conference in Lorne, in the Australian state of Victoria, earlier this week."

While these advances are likely years away from being implemented, it's encouraging to know that hard work continues and that Lily may have even more options when she gets older.

Glad We Got A Stokke

Unlike our current stock market investments, the investment in our Stokke stroller is looking better and better. Today's CNN points to a new study published by the Dundee University's School of Psychology, which states that babies in strollers should face their parents or risk long-term development problems in their children. The study found that "children not facing the person pushing them were significantly less likely to talk, laugh and interact with their parents." By turning the buggy around, parents' rates of talking doubled. While I'd take the findings with a big grain of salt, it does validate our experiences with our "parent-facing" contraption.

Staring at Ears

I find myself looking at everyone's ears; young, old, men and women.  It is amazing how many hearing aids I see.   It gives me a little comfort to know there are other people in the "hearing loss club" with Lily.  Congenital hearing loss is the most common sensory defect in humans. 

People stare at Lily's head all the time.   I see the prolonged looks wondering what the lumps under her hat are.   Or if she is not wearing her hat, people become fixated on the microphones.  The bold ones ask me what is on her head.  When I say, "Cochlear Implants - They help her hear," people are usually satisfied and walk away.

It is an opportunity to educate people about Cochlear Implants and hearing loss, but having the discussion daily gets a little old.  The little kids always get really close and look at the implants. Some try and pull them off. 

After days and days of this I look at the heads of other kids and think how smooth their skulls are.  I wonder what it is like to nurse a baby without the squeal of hearing aids or the beeping of a CI.  I wonder what it is like to have your kid roll around without beeping.  I wonder what people do with all their time, if they don't do 5-6 hours of formal therapy and endless hours of informal therapy a week.   I'll probably never know, but it is ok. 

Lily has brought endless joy to our life.  She has taught us about love, determination and passion for living.   While we've had a nontraditional start, Lily's CIs and endless auditory training will put Lily smack dab in the mainstream, ready to take on anything she wants. 

Matching Goats

Llly has started connecting items in our "10 books a day" with real items such as dogs (points to Tango), hairdryer (points upstairs) and goats (points to her barn and actually went and got the little plastic goat with a hat).   It is really exciting to see her categorizing these items and connecting them back in her memory.  She is also matching objects to objects, such as a ceramic horse with her furry pink riding horse.  I am not sure how this connects to language, except that we label everything and use animal sounds.  My goat sound is getting better and better.  Matching seems to be an early math skill which I am sure translates somehow into language.  We hope. 

Head, Shoulders, Auditory Sandwich?

Last night Emma and Ivy, Lily's "step-sisters/cousins," were talking with her.  Across the dinner table, in a room with wood floors, they were giving Lily the body part quiz.  "Lily, where is your head, eyes, nose, mouth, tongue, ..."   Wanting to give Lily more of a challenge, Emma asked, "What part doesn't Lily know?"  We decided to teach Lily shoulders and also taught the girls the Auditory Sandwich technique.  "Lily, where are your shoulders?  Here are your shoulders.  Yeah, you touched your shoulders."  Say it, show it, say it again.  Then the girls asked Lily where her shoulders were.  Bam!  Just like that she touched her shoulders.  The quiz ended with lots of tickling. A job well done.

Getting What You Want - ABBA

Lily can communicate very well even with her 15-20 words.  Yesterday she was pushing on Grandpa's back while he was sitting in a kitchen chair and saying Up Up Up.  Finally, Grandpa got up and then Lily ran around in front of him and threw her arms in the air and said Up Up Up.  She then pointed to the stairs that go to the basement.  Grandpa agreed and downstairs they went.  This is special Lily and Grandpa time when they listen to ABBA (Take a Chance on Me, Dancing Queen, Fernando and really anything Grandpa can pull up on YouTube).  Lily will sit and listen to the music as long as Grandpa will sit there with her.  Every time a song ends, you will hear "Mor, Mor" and then ABBA starts singing again.  ABBA is also great because the videos from the 70s are just pictures of them dancing around and singing. Lots of face shots, long boots and bright lipstick.  Namaste

Language and Literacy Tools

Our Hearing Resource Teacher has been bringing us some very good tools and ideas lately to grow Lily's language and literacy.  Here are two excerpts:

Literacy Tool (from SEEDS) - When you read to your child...
T - Talk about thoughts and feelings that are often unspoken
H - Hook the book to personal experiences
I - Inquire - Modeling questions/answers, fostering curiosity
N - Nurture new words
K - Knowledge is Key

Language to Talk About the Mind (from Ski-High)
- Let's pretend
- I hope
- Are you teasing me?
- I wonder
- Do you remember
- Good Idea

ASHA (American Speech-Language-Hearing Association) Convention Coming Soon

Lily's Aunt Kelly is a speech language pathologist ironically enough. While she hadn't worked with a ton of kids with cochlear implants before Lily was born, she has obviously taken a greater interest in this specialty of her profession. This is a great stoke of luck for us as she keeps us up to date on a lot of the new research and insights. She will be attending the ASHA (American Speech-Language-Hearing Association) Annual Convention in Chicago on November 20-22. The ASHA 2008 Conference Program looks jam packed with great sessions like the following:

• Facilitating Family Involvement in Assessment & Intervention During the First Year
• The ACoRN Project: Essential Tools for Professionals Serving Students With Hearing Loss 
• Cracking the Conversational Code: Investigating Conversational Skills of Deaf Children 
• Maximizing Language Skills in Children With Cochlear Implants 
• Language Outcomes of Young Children With Hearing Loss
• Infant Vocal Exploration Before & After Cochlear Implantation
• Lessons Learned: Developing an Auditory-Oral Program 

 With courses like these, I hope Kelly takes some good notes ;-)

Unofficial Language Results - 16.5 months

At our last weekly speech session, I asked the SLP how she thought Lily was doing compared with normally hearing kids.  She said, "Well," and then paused.  I thought Oh No, what is she going to say.  Are we not doing enough, are we taking the wrong approached, am I failing her and not maximizing the capability of the CIs and this critical window of language development?  Maybe I shouldn't have asked the question. 

Since Lily was two months old, we have been receiving developmental milestones from someone.  Almost weekly.  And not only for her hearing and language but for every possible thing that could develop in a baby.  This has been wonderful in one sense because we knew very little about child development and have had experts guiding us all the way.  But in the other sense it has been extremely stressful.  EG - It is 3 months and Lily is not rolling over.  It is 6 months and she is almost sitting.   It is 9 months and she only turns to clapping and Ba Ba Ba.  Is she stacking her blocks. Is she tracking objects with her eyes. Can she pass one object from hand to hand.   Does she have three words by one year.  So we worked very hard (maybe obsessively) on everything (motor skills, social emotion, cognitive and now language) to make sure all the milestones were met or exceeded.  Fortunately they have been. 

The SLP continued, "I think she is ahead of her hearing peers in receptive language and two months behind in expressive language."  Ahhhh I'll take it. 

200 Receptive Words

As part of the Baby Lab we fill out the MacArthur-Bates Word Inventory.  Today we checked off another 65 words that Lily knows receptively and figured that there are probably another 35 plus words that she is understanding that aren't on the list.  It is exciting to watch her receptive vocabulary continue to grow by 2-3 words a day. 

Live Online Mapping

Today Lily had her six month mapping appointment.  She was hearing between 25-30 dbs and preferred listening for voices instead of what we would call "white noise" sounds.  Our Audiologist Jeff said the ideal listening range is between 20-30 dbs.  Lower than that can introduce a lot of noise which may interfere with speech perception. 

With Advanced Bionics, Lily has a dynamic range of 80 dbs so she hears sounds from 20-100 dbs.  Her maps were turned up just a little bit in the high frequencies, but our Audiologist believes they are close to ideal.

Lily's appointment was also broadcast online so friends and family could watch, with a password of course.  Boystown is experimenting with online distance mapping, which will be a great service for those people living in rural areas. 

The photo is of Lily on camera/online in the sound booth, identifying which way a soft sound is coming from.  Our Audiologist says things like, "Lily Lily, ba ba ba ba, Uh-oh Hi Lily, Over here," while Lily is being distracted with toys by another Audiologist. 

Another CI Friend

Last night we met a woman at The Oven whose grandson has bilateral CIs and whose son-in-law works for Cochlear.  They live in Denver now, but the little boy was the first one to be implanted under 18 months at our CI Center.  The little boy is now nine and "won't shut up" according to his grandma, but they love hearing him talk.   And he talks beautifully, she said, you'd never even know he had something wrong with his ears.

What A Great Language Day

Lily's language sometimes come in spurts. In general it's pretty consistent, but she sometimes has really explosive days like today. Today Lily seemed to hear everything crystal clear to the point where she was mimicking two syllable words we said with great accuracy. Today she said "Open" and "Elmo" and even "Abbie." The cool thing about her saying Abbie's name was that we weren't even talking directly to her, but she overheard our conversation during dinner. Very cool!

The Weather is Fabulous

Lily is enjoying the nice weather.  It is not every year we can take walks and soak up the sun in November.   Going outside is a great activity for us to talk about flowers, grass, sky, birds, bugs, airplanes, and Don't Break Mommy's Sunglasses.  But how can you resist? 

Music Therapy Lesson Plan

We've just had our sixth session of Music Therapy.  Every other week, our MT Nicole comes to our house with her guitar, drums and bag of instruments such as shakers, sticks and tambourines.  I think Lily has gotten a lot out of it.  She loves listening, especially to the drums and the guitar.  Nicole has started putting lesson plans together and I thought I'd share a sample of the latest one.

Interventions:
1)    Hello song
Goals: a) introduce music as daily activity b) functional speech and language

2) Guitar strings: B & X (E, Eflat, D, Dflat, C)
Goal: Pitch Perception

3)    Twinkle & The Wheels on the Bus (or other known action songs)
Goal: Melodic Recognition

4)    Rhythm instruments
Goal:  Sound localization
(Lily turned the right way immediately every time.  The challenge came when the lower notes on the guitar were played OR Lily was tired of the game.)

5)    Rhythm instruments
Goal:  Moving Sound localization

6)  Goodbye song
Goals: a) transition from music time  b) functional speech and language