Life is Bliss - Lily's Cochlear Implant Journey

Babies learn language by lipreading from 6-12 months

2012-01-18T09:28:51-06:00

Facinating research about normally hearing babies learning language by lipreading. This type of research supports the early implantation argument for cochlear implants and emphasizes the value of getting in the child's face and talking even when there is minimal hearing. The research also makes me wonder if this process is similar when hearing comes later or does it move faster when there is more cognitive development.

"Florida scientists discovered that starting around age 6 months, babies begin shifting from the intent eye gaze of early infancy to studying mouths when people talk to them....They found a dramatic shift in attention: When the speaker used English, the 4-month-olds gazed mostly into her eyes. The 6-month-olds spent equal amounts of time looking at the eyes and the mouth. The 8- and 10-month-olds studied mostly the mouth. At 12 months, attention started shifting back toward the speaker's eyes."

New Baby Bodie Graeme

2012-01-16T11:50:39-06:00

We are excited to introduce our son Bodie Graeme. He's a perfect little sweet pickle (as Lily calls him) and we couldn't be more thrilled. The details...

What about the Name?

Bodie is a name we love. It's happy, sounds good with Lily and doesn't come with a lot of stereotypes or rhyming words. It's also not in the Top 10 most popular names. Of course when we picked LIly, the name was not very popular and now it's likely in the Top 20. We were going to call him Bodin, with Bodie for short, but why not just go with the nickname. Bodin can be used for the serious situations.

Graeme (sounds like Graham) is a nod to Graeme Clark, one of the first inventors of the multi-channel cochlear implant, and Alexander Graham Bell. Two people who changed the course of history for our family.

In my reading about Professor Graeme Clark of Australia, they said he was called Crazy Clark, because his goal since the 60s was to help deaf people hear. His colleagues doubted him and thought the goal was unreachable. This story is a good daily reminder to me to believe and reach for the impossible. Never be detered if that is your goal and always say YES, even though it's much easier to say NO.

I hope this name will give that determination to Bodie. I know Lily's already got it. Yesterday she was determined to go outside in 50 MPH winds and snow and fly her kite. I said NO, it won't work. She did it anyway, and wouldn't you know...the kite flew...twice.

Birth Story

The Birth Story is quite uneventful, in a positive way, compared to Lily's birth. With a scheduled C-Section it was peaceful, planned, no drama, no NICU, and no tears. Well, maybe a few tears of joy. Everything was calm and quick. Loved it.

When Lily first met her new brother, she came in, climbed up on a chair to see him in the bassinet and introduced herself. "Hi Bodie, I'm your big sister Lily." So sweet.

Having another child

For years we never thought of having another child, because we didn't want to take our focus off helping LIly succeed. At some point, as Lily's abilities have skyrocketed, we felt that adding another child to our family would only enrich our experience and Lily's life. Hearing or not, we were prepared to take the hearing journey again, if need be, and we would meet every need of this child as we have for Lily.

Nebraska's Newborn Hearing Screen

In Nebraska, the Newborn Hearing Screen is a state mandate (with no enforcement). Today, approximately 99% of all babies born in Nebraska are given the hearing screen, with about 50 babies annually having some sort of hearing loss.

About 50% of the hospitals, including ours, are using ABRs for their initial screens. ABRs have a much lower refer rate (4%-5%) than a tradition OAE (8%-9%). A refer rate means "failing" the test. Failing could be for other reasons, besides hearing loss, like fluid in the ears. A reduced referal rate means a lot fewer parents have to go through the emotional journey of understanding if their baby can hear, reduced cost and reduced use of limited resources. Bodie passed.

Is there a difference?

With a newborn baby, it's extremely difficult to tell if the baby is hearing. Especially for first time parents, if you are not watching for a reaction to sound, you just might miss it. We see Bodie and LIly with very similar baby behavior, but you can see that Bodie quiets to the Shhhhh sound and reacts to many noises.

I have noticed that we've gotten used to making lots of noise while Lily sleeps. Unfortunately or fortunately, gone are the days when we could turn up the TV or music, bang around, cough or vacuum. Restful sleep is a definite advantage for LIly, espcially when Bodie is wide awake in the middle of the night.

Language

I am very interested to watch Bodie's language develop. We've been trained by some of the best language pros in the country, and talking everyday all day and creating good listening environments is what we do.

A few Lily quotes

"It's great to be a big sister. " And this morning, "It's hard to be a big sister. I don't get any attention."

The Auditory Brain - Carol Flexer - Speech transcript - So Good!

2012-01-12T06:55:00-06:00

We are huge fans of Carol Flexer an Audiologist, professor, book author and presenter on The Auditory Brain: Conversations for Pediatric Audiologists. This link is to a transcript of a presentation and Q&A Dr Flexer made on AudiologyOnline last spring. So, so, so good! Mandatory reading.

What difference can an FM make?

2012-01-11T06:11:00-06:00

I'm always interested in how things sound for LIly.

This page contains recordings of speech through a Comtek FM system in quiet and in noise, through the FM (on the lapel of the speaker) and/or environmental (on the body of the listener) microphones, at a distance of three and twelve feet from the listener. Multi-talker babble speech noise was presented from behind the listener at a level of about 60 dBA.

It is not clear if these recordings are through an additional listening device like a hearing aid or cochlear implant, but the differences are still facinating.

Apps for Kids and Adults with Hearing Loss

2012-01-10T12:10:45-06:00

Great blog by Tina Childress on Apps for Kids and Adults with Hearing Loss. These apps can be extremely helpful when teaching kids to talk and listen in ways they love to learn.

Tina is a bilateral CI user and used to be with Advanced Bionics. She gave a presentation at Boystown four years ago, which Lily's Dad loved. She was one of the reasons we chose Advanced Bionics.

TEDMed Talk by CI Surgeon - CIs and Music

2011-12-16T11:31:58-06:00

Very interesting TEDMed talk (16 mins) by cochlear implant (CI) surgeon and musician Charles Limb, associate professor, Otolaryngology, Head & Neck Surgery, at Johns Hopkins. He explains the challenges of CI patients hearing music and the brain research that is being done to help restore the full range of human hearing abilities. The talk even shows a video of a cat with a CI responding to a trumpet.

Lily loves music and has recently figured out the phrase "That song is stuck in my head." Her newest trick is dancing around the house singing "I got the mooooooooooooves like Jager" over and over again. More focus and attention on music therapy would be an incredible addition to the speech therapy that now helps kids with CIs learn langauge.

AB's Neptunes in the Water

2011-12-14T22:16:13-06:00

Here's a video of a kid swimming with AB's Neptune. Notice how she doesn't talk much without her CIs, but talks up a storm with her CIs.

AB's Neptune Cochlear Implant Approved - WoooHoooo!!!

2011-12-01T12:46:05-06:00

To say we're excited about Advanced Bionics's Neptune Cochlear Implant being approved by the FDA is an understatement!!! Now how fast can Lily get one and get in the bathtub or the pool or the beach or get the next greatest thing - ClearVoice? Let the the countdown begin.

Advanced Bionics is thrilled to announce that the NEPTUNE™ sound processor has received FDA approval in the United States. Now AB recipients and candidates have the choice of a Neptune or Harmony sound processor for hearing their best with AB.

World’s First Waterproof Sound Processor
AB continues our history of innovation leadership with Neptune, the first and only SWIMMABLE sound processor in the world. Whether you or your child enjoy taking a dip in the pool on a warm day or bonding at baby bath time, Neptune delivers hearing during those important moments.

Industry’s First Freestyle Design
The lightweight Neptune processor features the industry’s first freestyle™ design, allowing you or your child to hear the world with the comfort and beauty of nothing on the ear. Neptune gives you the freedom to choose your wearing style—in your hair, on your arm, under your collar, or in your pocket—without compromising performance. Whether you want to show it off or tuck it away discreetly, the freestyle design lets you wear it just how you like.

Usability and Durability
Built Kid Tough™ for rugged use, Neptune is ideal for every age and every lifestyle whether you live in a humid area, love to swim, enjoy sports, connect in the classroom, or travel across the globe. Neptune carries an IP68 rating that offers maximum protection against solid particles and various forms of moisture, which means that you can hear your best in all weather, all sports, and all terrain.

Performance
To ensure you hear your best all of the time, Neptune is compatible with the industry’s most advanced hearing technology for the best possible hearing performance, including ClearVoice™, HiRes Fidelity 120™, and AutoSound™.

For more information

Quantity of Communication Matters

2011-11-29T21:47:02-06:00

We've understood that quantity of communication REALLY matters since the beginning of Lily's hearing journey. Now one of our favorite researchers, Mary Pat Moeller, has recently given a presentation on just that topic.

According to ASHA member Sophie Ambrose and her co-presenters Mark VanDam and Mary Pat Moeller, all from Boystown in Omaha, the research shows that quantity of communication matters for hard of hearing children. Children whose parents engaged them in more conversations were likely to have stronger language skills than toddlers whose parents engaged them in fewer conversations.

Previous research has indicated that to promote parent–child conversations and to otherwise facilitate the language development of toddlers with hearing loss, parents should use speech that is child-friendly, such as short, simple sentences, and talk about things of interest to the child.

Visit to Santa

2011-11-27T14:22:06-06:00

Lily visited Santa this year on the first day he arrived. A little shy at first, Lily informed Santa she would like a pogo stick and a pink sled. She later remembered she forgot to tell him a bike (already purchased), so she followed up the visit with a letter that she wrote (Dear Santa I want a bike Love Lily.) She said the period was so Santa knew the letter was over.

When Santa asked if she's been good, Lily informed him that she had been a very good helper that morning putting up all the Christmas decorations.

Communication was easy. Mom and Dad just stood back and watched the magic happen. So much to be thankful for this year.

Preschool art experience

2011-11-22T21:58:53-06:00

Lily's preschool class has been working with an artist on screen printing. Here Lily is with the artist describing her masterpiece (flower and bird).

All kinds of new vocabulary was included like squeegee, silk screen, color theory (red and yellow make orange), etc.

Lily's teacher gave the artist the FM, which made listening easier for LIly when the artist discussed each child's artwork/t-shirt design.

Exposure to different experineces and language is so important. This was a unique one.

ihear - Long Distance Oral Ed

2011-11-12T18:00:42-06:00

Distance learning is getting better and better, especially for kids with hearing loss, in remote or rural places, with a lack of accessible services. Check out IHear by St Joseph Institute for the Deaf.

Pre-Halloween Fun

2011-10-30T11:12:41-05:00

Halloween has become a wonderful week-long celebration this year with many parties and events to attend. Lily's costumes have included both a puppy and a turtle. Mom's preference is the turtle because there is nothing over her CIs.

We also attended a family art night where we were given a clay pumkin and then were encouraged to transform it into anything. Thus the creation of the Halloween Fish, Black Cat and Witch. Any guesses as to who did which one?

CI Video Story: Implanted at 20 months and now a teen

2011-10-29T10:23:00-05:00

A beautiful documentary on the life of Skye Carter. She was first implanted as a child (20 months) and now is in her teen years.

Study: Significant language progress after two cochlear implants

2011-10-28T10:23:13-05:00

Recent article about research at the University of Wisconsin shows significant language progress after two cochlear implants.

During our recent trip to participate in the WI research, we got to meet Christi who is quoted in the article. (see picture below) Very fun to meet the next generation of practitioners who are passionate about serving kids with CIs. In this photo, Lily and Christi were teasing each other about who would win the Nebraska-Wisconsin Football game.

An ongoing study of 45 deaf children who had two cochlear implants finds that their language skills are within the normal range..."It's a huge success to see these children making such strides in language acquisition," says Christi Hess, a Ph.D. student in communicative disorders...Many, after as little as one or two years with the implant, have language scores within the normal range, especially those who got the implant before age two....It's known that implants made at a younger age deliver results more quickly, and that a second implant helps children both locate the source of a sound and understand speech in a noisy room. But until now, it was not clear if the second implant would improve understanding of spoken language. "The most exciting finding is that having two implants does correlate with an improvement in receptive language," says Hess.

Resource for teachers of students with hearing impairments

2011-10-27T06:02:00-05:00

Good resource of learning activities for young kids with hearing impairments (or any kids for that matter). It is written by a teacher of HI kids so has language targets, vocab, etc.

Hearing loops go mainstream

2011-10-26T06:46:00-05:00

Hearing accomodations are becoming mainstream, not only because of ADA but also for good customer service. Check out this recent article in the NYT about hearing loops.

Videos: Lily's language development 9-48 months

2011-10-24T22:38:02-05:00

Lily was a participant in a longitudinal study in the Language Development Lab at Boystown National Research Hospital, directed by Mary Pat Moeller, Ph.D. The visits occurred between 9 months and 48 months old. Lily received bilateral Advanced Bionics cochlear implants at 10 months old.

9 months old

12 months old

15 months old

18 months old

21 months old - (21 month report) (22.5 month report)

24 months old - (24 month report) (25.5 month report)

30 months old - (30 month report) (32 month report) (34 month report)

36 months old - Receptive language test (36-38 month report)

42 months old - Language test

42 months old - Sounds

48 months old - Final Language Test

Music changes our brains

2011-10-23T09:32:00-05:00

Excellent article on how music changes our brains. We've long been a believer in incorporating "music therapy" in all forms in Lily's auditory rehab, as there is growing evidence in its impact for listening and language.

I'm often reminded of the person who told me "there was no proof, I was wrong in believing this, and that they wouldn't even consider this as a part of LIly's therapy." Glad we didn't listen to this advice.

Mild hearing loss = Brain Atrophy in Older Adults = Early Intervention

2011-10-13T13:58:48-05:00

Interesting article in Science Daily

A new study by researchers from the Perelman School of Medicine at the University of Pennsylvania shows that declines in hearing ability may accelerate gray mater atrophy in auditory areas of the brain and increase the listening effort necessary for older adults to successfully comprehend speech.