seeds of sound

We are the parents of a two year-old baby girl (named Irene) who received bilateral cochlear implants (CIs) about a year ago. This site is meant to serve as a journal to record the experience of teaching speech and language to her. As Dr. Carol Flexer has said, "We hear with the brain; the ears are just a way in." var _gaq = _gaq || []; _gaq.push(['_setAccount', 'UA-20886719-1']); _gaq.push(['_trackPageview']); (function() { var ga = document.createElement('script'); ga.type = 'text/javascript'; ga.async = true; ga.src = ('https:' == document.location.protocol ? 'https://ssl' : 'http://www') + '.google-analytics.com/ga.js'; var s = document.getElementsByTagName('script')[0]; s.parentNode.insertBefore(ga, s); })();

[seedsofsound]

Irene spontaneously breaking into a song about cookies.

[seedsofsound]

This was new to me: a nice tribute from Cochlear to Rod Saunders, who volunteered to be the very first cochlear implant recipient a little over 30 years ago (and who passed away in 2007): > His pioneering spirit and perseverance with the initial prototype, made further technological advances possible which over 100,000 people globally, now benefit from. That first cochlear implant surgery took eight hours, and it was only at the third session that Rod heard sound. Thank you Rod.

[jkottke]

Last week after an event at Prince Georges Community College in Maryland, a deaf audience member named Stephon used American Sign Language to tell President Obama, ‘I am proud of you,’ and as you can see in the video, President Obama signed back, ‘Thank you’. Hearing the crowd’s response to this...

[seedsofsound]

One year of hearing

One year ago today Irene's first cochlear implant was turned on. On that day, Irene's reaction to receiving auditory input through the implant for the first time was [to cry](http://seedsofsound.net/post/3346413109/she-cried-but-its-okay). But today, thinking about how well she can hear and understand speech, as well as all the words and phrases she can now say so well herself, Maggie and I are more likely to be the ones wiping away tears. Irene's newest phrase is "Whatcha doin'?" a la Isabella from the *Phineas and Ferb* cartoon (one of those rare shows for children that Maggie and I enjoy as much as the kids do). Maggie has had fun the past couple days saying, "Irene, whatcha doin'?" and then hearing Irene promptly respond, "Whadda do-ah?"

And so, one year in, Irene seems to be doing great. She can say dozens and dozens of words (we stopped keeping count) and can understand many more. Some words come out more clearly than others. And in fact, Irene's AVT has been saying lately that working on improving the clarity of Irene's speech is an important next step. (Some of the words that Irene pronounces clearly include *cookie*, *Marie*, and *coffee*. Examples of words that she doesn't enunciate as well yet include *elephant*, *Gilli*, and *triangle*.) In any case, it's staggering, to me, to think about how quickly the past year has flown by. It still often feels like we brought home those [two giant boxes of Cochlear equipment](http://seedsofsound.net/post/3346501145/to-follow-up-on-our-previous-post-here-is-what-we) just the other day. Maggie and I are both amazed at what has been possible in so short a time. If the question is, then: "Irene, whatcha doin'?" the answer is: listening, hearing, speaking, more and more each day. Bring on year two.

[seedsofsound]

Cochlear recently issued an update regarding their recall of the Nucleus® CI500 series cochlear implant. Key quote: > For the devices that failed, the average time to failure after implantation was 7 months (90th percentile 12 months). Of the 97.6% of devices that have not failed, the majority (>85%) have been implanted for longer than the average time to failure. These data cannot be used to predict future failures. > > Of the 2.4% of devices that have failed, two thirds were manufactured in the first quarter of 2011. Irene's CI surgery was in January 2011, so hopefully she is in the clear. We haven't noticed any issues with her Nucleus CI processors to this point. (Via [@CochlearImplant](http://twitter.com/CochlearImplant/status/167053544137031681).)

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More recent research of note. These findings suggest that the earlier a child receives cochlear implants – and by extension, the shorter the length of time they are not exposed to any auditory input – the better their overall speech and language development over the following months and years. Key quote: > When a deaf child receives a cochlear implant – and how many implants he gets – have a significant impact on hearing and language outcomes, according to the results of two recent studies. (Via [@ShepherdCentre](http://twitter.com/#!/ShepherdCentre/status/154779100521840640/). Hat tip to [@sstibal](http://twitter.com/sstibal) and [@KidsAudiologist](http://twitter.com/#!/KidsAudiologist).) ****** On the subject of getting auditory input to the brain as early and often as possible, my inexpert understanding is that Dr. Carol Flexer is a pioneer in this area of research. A transcript of a seminar that Dr. Flexer presented back in March of 2011 is available on the [Audiology Online site](http://www.audiologyonline.com/articles/article_detail.asp?article_id=2379) and is well worth a read. I love this quote: > We hear with the brain; the ears are just a way in. (Many thanks to the [Life is Bliss blog](http://ardinger.typepad.com/bliss/2012/01/the-auditory-brain-carol-flexer-speech-transcript-so-good.html) for the link.) Maggie and I had the good fortune to attend a presentation locally that Dr. Flexer gave in 2010, back when Irene was still using hearing aids. It was incredibly informative – loaded with good information, stories, and some practical tips. If you ever have the chance to see her speak, don't miss it.

[seedsofsound]

Research suggesting benefits of bilateral CIs in children

Add two more studies to the [list](http://seedsofsound.net/post/12609691278/study-shows-significant-language-progress-after-two) of those suggesting potential benefits that can be realized with regards to speech development when using bilateral cochlear implants. The [first study](http://www.audiology.org/news/Pages/20111222.aspx) was conducted in the United States (as best I can tell). Sample quote: > Sparreboom and colleagues note that binaural advantages with regard to speech in quiet and speech-in-noise were apparent after six months of bilateral use and these advantages continued to improve over time. (Via [@listenfoun](http://twitter.com/#!/listenfoun/statuses/152468078746288128).) ****** The [second study](http://www.health-e-kids.org/effect-of-pediatric-bilateral-cochlear-implantation-on-language-development-article/) was conducted in Europe. Sample quote: > The use of bilateral cochlear implants is associated with better spoken language learning. (Via [@listenfoun](http://twitter.com/listenfoun/status/155388450357522432).)

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Key quote:

A new study shows that overall, the rate of reimplantation of cochlear implants (CIs) due to device failure appears to be low among children who were treated at a pediatric tertiary care clinic in Canada. However, children who develop hearing loss due to bacterial meningitis prior to implantation appear to be at an increased risk of device failure.

If I’m reading this correctly, the total sample size included was fewer than 750 pediatric CI recipients.

Failure rates of cochlear implants is something I’ve been curious about, so it’s good to see some research in this area.

[seedsofsound]

For those of us with hearing loss, we listen with our whole body; mind, eyes, what we have left of our hearing and sometimes intuition.

[From a post titled "Listening and Hearing" on the *SayWhatClub* forum.](http://ahearingloss.com/2011/11/23/listening-and-hearing/)

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Imitation is the sincerest form of inspiration

The pace at which Irene is copying things we say is accelerating. Quite often now one of us will say something and Irene will quickly repeat it. Many times when she does so she is saying those particular words for the first time.

Case in point. I was good-naturedly teasing Irene's older brother (Sam) and sister (Gillian) the other night as we sat at dinner eating leftover Thanksgiving turkey and stuffing. After one of my remarks, Gillian feigned surprise and said "Mean!" while slapping me lightly on the shoulder. Without missing a beat, Irene likewise said "Mean!" and lightly smacked my other shoulder.

Encouraged by all our laughing at this, Irene kept this up through much of the meal, randomly interjecting "Mean!" now and then as she slapped me on the shoulder with the palm of her little hand.

She had never said the word mean before.

Makes me want to keep talking and talking to her, to see what other words and phrases she is able to pick up...

(This also means we have to be careful now what we say around her. The other day Maggie was driving home with Irene when she saw an eagle perched on a low tree branch as she drove by. Stunned at seeing so rare and unexpected a sight, she sat up in her seat and blurted out, "Holy crap!" And then, yes, mere seconds later, a small voice from the car seat behind her piped up, "Cap!")

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Turn up the volume? No need.

During the period of time when Irene was wearing hearing aids, especially near the end when her natural hearing was all but gone, I would often find myself speaking loudly to her to try to be heard, as well as getting as close to her as I could before speaking.

With the cochlear implants, there is no need to speak loudly or to stand in close proximity or to turn up the volume on devices like the TV. The normal volume levels the rest of us are accustomed to seem to work just fine for Irene. What we are trying to achieve instead is the highest possible clarity of sound in all situations and environments.

With regards to the volume of everyday speech, Irene, it seems to me, speaks no differently than the rest of us. That is, in most situations, she speaks at a normal, conversational volume. If she is calling someone -- for instance, standing at the foot of the stairs and calling up to her brother and sister to come downstairs -- she will yell quite loudly (quite loudly indeed). If she is saying my name to get my attention but I am not answering her, she will gradually say "Da!" louder and louder (and louder and louder) until I finally answer her. And if she is playing hide-and-seek or sneaking up on someone to "scare" them, she will tiptoe ever so lightly and whisper ever so softly.

She can hear whispers. And she can whisper back. That is cool.

[seedsofsound]

D-PAN ASL Music Video "We're Going To Be Friends" by the White Stripes

Pretty cool. The students in the video are from the School for the Deaf in Flint, Michigan. More background on the video here.

(Via @DeafNewsToday.)

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CDC: 45% "Loss to Follow-up"

Recorded in the findings of a 2009 study by the U.S. CDC (Centers for Disease Control and Prevention) is that 45% of newborns who did not pass the screening test for hearing received no documented follow-up treatment or testing.

Click here to view the CDC's summary of the study in PDF format.

As defined in the study, these cases were recorded as a "loss to follow-up" for one of the following reasons:

The parents or family were contacted but were unresponsive.

No contact was able to be made with the parents or family.

There was no documented follow-up for other unknown reasons.

(Via @doctoj. Hap tip: @Read2Mama.)

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Fun with nicknames

I mentioned once before that the closest Irene could come to saying her brother Sam's name was "Beam." In recent weeks she progressed to calling him "Beep." The rest of us loved this nickname for Sam and enjoyed dishing out a healthy amount of affectionate teasing at his expense over it.

Maggie and I wondered if there might be a mapping issue that was causing Irene to mishear that particular word. However, after our audiologist checked the maps, she found that only a couple minor tweaks were needed.

In any case, despite our growing affection for the name "Beep," I am delighted to report that Irene has just recently progressed in her language skills once more. As of now, she is calling her brother "Dam."

[seedsofsound]

For parents preparing to take their child to the hospital for cochlear implant (CI) surgery, this is a good list of things to do and bring, from the always reliable Cochlear Implant Online site.

We elected to have both of Irene's implants done at the same time, so her CI surgery lasted about seven hours from start to finish -- seven of the longest hours of our lives. To add to the list linked to above, here are some of the ways that Maggie and I passed the time:

The hospital offered free Wi-Fi, so we were able to use our iPad and iPod Touch to surf Twitter (me) and Facebook (Maggie), as well as play mindless games, read articles in our Instapaper queue, listen to music, watch videos, whatever.

I kept a pen and notepad handy so that I could jot down various details throughout the day to use later in writing journal entries and/or posts for this blog.

We walked to a nearby restaurant for lunch and took our time with the meal (even though we weren't hungry).

We visited the children's gift shop in the hospital and picked out a couple small toys to give to Irene to play with as soon as she might be feeling well enough to do so (which, thankfully, was sooner than we expected).

Looking back, I'd say those first few hours after Irene came out of surgery were perhaps harder than the seven hours of waiting that preceded them. If I have any advice to offer, parent to parent, it would be to:

Take inventory of your belongings during the surgery so that you have time to run home or to the store if there's anything you forgot

Rest as much as you can manage during the surgery

Make sure you've had plenty to eat and drink so that you're at full strength when your child comes out of surgery (and needs you most)

It also helps to remember that kids are resilient. Irene was finally able to calm down and get some real rest by midnight on the day of the surgery, and by 5 AM the next morning she was wide awake and solely focused on playing with her new toys.

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This study is based on a small sample (only 45 children, ages 4 to 9), but the results are encouraging. Key quote:

“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.”

Researchers are continuing to track the progress of these 45 children, so we can look for more results from this study to be published in future.

As I've mentioned before, Irene's vocabulary has been expanding steadily for some time. And she is able to say her own name now, which she seems to relish doing. (And which Maggie and I relish her doing!)

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Rayovac has expanded its portfolio of hearing aid batteries with a new mercury-free battery that is designed for cochlear implants.

Cool. We'll be looking into whether we can use these in Irene's Nucleus 5 implants (for those occasions when she's not using the rechargeable batteries).