The Agnich Family

The Sound of Sound

2009-03-09T15:56:00.000-07:00

I read this article in a magazine before Landry's implantation and it gave me a wonderful perspective of what was to come. It was recently posted on cicircle, a Yahoo group for parents of deaf children and wanted to pass it along to our blog readers.

I have been terrible about updating this blog, but will do so in the next few days. Landry is doing wonderfully with her listening and speaking skills and is a sight to behold! We often have to remind ourselves that she is deaf...

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What it's like to be a little girl with a cochlear implant. What it's like to be her mom.

For my 4-year-old daughter Juliet, hearing is optional. She was born profoundly deaf. Juliet has a cochlear implant, which brings her access to sound, so long as she wears her external processor — a behind-the-ear device that looks like a hearing aid with a small magnetic disk that attaches to the implant in her head. Throughout each preschool day, Juliet wears her processor, and with it she hears. And she talks. She hums. She sings. Juliet's language and music are wonders to behold. But when she arrives home from school exhausted, she often wants to take her processor off.

"I don't want my sound," she says, and she piles the mound of earmold, wire, and magnet into my open palm.

If a restaurant is too loud and Juliet is tired — yank — I have to rush to catch this several-thousand-dollar "ear" before she sets it down on a table smeared with ketchup or blue cheese dressing. Just as quickly, I race to settle Juliet into a comfortable position because, with the blessing of quiet and the shut of her eyes, she falls asleep in seconds. On weekend mornings, Juliet asks to wait before putting on her processor. She enjoys puttering around the house in silence, tuning us out, ignoring our demands. When she wants us, she just stands in place and yells (she has no idea how loudly) until we show ourselves in her visual field. Juliet signs, and we sign back, yet she often chooses not to reason with us when her sound is out. Sometimes she won't even look our way, disabling our speaking voices and our signing hands. To be sure, Juliet can be ornery with or without her sound. But without it, her face takes on so much expression that her glower can send us packing.

Juliet rips her processor off at the sight of the blender or the vacuum cleaner. She puts it back on when she spies a book I could read to her or a video she wants to watch. Like a baseball cap: off for the bath, on for the playdate, off to run through the sprinkler, then back on for the cupcakes. I wonder sometimes whether to encourage this. But why should she hear the babies crying at the pediatrician's office if she doesn't have to? Why not miss the jackhammer blast when the car is stuck in traffic? Juliet senses everything that's happening through vibrations anyway. Whether her sound is on or off, she knows when someone walks into the room, and she can read a face like a book. As she reminds me with a scowl when I repeat in sign what I've said aloud: "I know what you just said."

It's impossible for me to know what Juliet's experiences are like, with sound or without it. When I first heard a simulation of how a voice sounds through a cochlear implant, I was horrified. It sounded like Darth Vader speaking through Demi Moore as she imitated the Wicked Witch of the West. "We're going to drill into her tiny skull for this?" I asked the Boston Children's Hospital cochlear implant team. Can I never expect her to hear the timbre of my voice, or to distinguish between voices? And what will her voice sound like? I was placated, ultimately, by the sight (and sound!) of other implanted children at the playground of a nearby school for the deaf.

Juliet's cochlear implant surgery took place on her first birthday, and it lasted five hours. A few weeks after, her sound was "turned on" — the external processor was programmed and activated. It was set at a low volume, so as not to scare her, and it came with extra settings that grew gradually louder.

We were warned that most implanted babies cry when they hear sound for the first time. I wrapped my arms around Juliet as the audiologist attached the processor — glop — and the external magnet glommed onto Juliet's head like a magnet onto a refrigerator. Instructing us to be quiet, the audiologist handed Juliet a drum and a stick. Juliet whacked the drum, then jumped back like a startled animal at the sound of the boom. She searched our faces with wide questioning eyes. She beat the drum again. And then Juliet thrust back her head and laughed.

For the next hour, she used the drumstick to beat other things: the audiologist's pant leg made almost no sound, the metal file cabinet made a loud clanging boom, the tone of the wood chair was different than the thicker wood table. Juliet had become a scientist, studying and experimenting with sound.

According to the audiologist, all sounds would come in as beeps and blips at first. It would be months before the neural pathways between Juliet's auditory nerve and her brain would be forged and able to translate the input into meaningful sound. That is, it would be months before "moo" could be distinguished from "quack" and pinned on its rightful farm speaker. And months before Juliet would turn at my calling of her name. In the meantime, we would put in a lot of "moos" and "quacks." We would point out and comment on nearly every sound that could be heard in our home: the sizzling of an egg in the skillet, the full rush then drip drip of water from the faucet, the stray cock-a-doodle-doo of a neighbor's rooster, the metallic scritch of a zipper running up a coat. "I hear it," I'd say, pointing to my ear, as the phone rang, or the heat kicked in.

The flop of a pancake. The shake of the milk bottle. The sound of the birds as we walked outside. The click of the car seat buckle before we drove. The clank of carts and the thunk of grapefruits as we shopped. Every sound: listened for, acknowledged, remarked upon.

Each morning, I'd put on Juliet's implant processor. I'd also stick a hearing aid into her nonimplanted ear. I was used to hearing aids. Juliet's older sister, Sophia, has a lesser hearing impairment, and hearing aids enable Sophia to hear and speak. Juliet objected to her aid, but I persisted. Set at its highest volume, it might give her access to new sounds.

Then, to keep things cheery, I'd chase her around the house. One snowy day in February, when Juliet was 1 1/2, we were running round and round. "I'm going to get you, Juliet," I yelled, offering her the lead, then trailing in the sea of squeals and laughter that floated in from the room ahead. At one point the tea kettle whistled and I broke the chase for a quick hearing lesson. I stood still in the kitchen until Juliet knocked into me, and as she caught her breath I pointed out the high-pitched whistle, thick steam shooting up at the kitchen cabinets. "I hear it," I said, pointing to my ears. Then I switched off the stove and resumed the chase.

Time out had to be called several times because Juliet's processor magnet slipped off, dragged down by the weight of her controller, which flapped in a pocket I had hastily sewn onto her T-shirt. Juliet took the time-outs like a puppy halted mid-nip to scratch an itch. Her hair came loose from her topknot. Her eyes sparkled. At one point, as I gained on her, sock-skating into the dining room, I called out, "Juliet!" and she turned her head to look at me.

I stopped in my tracks like Road Runner.

"Juliet?" I ventured again. By now she was smiling a huge smile — she had heard and recognized her name.

"Juliet," I choked, and I scooped her into my arms, "I got you, Juliet. I got you. I've gotten you."

About Juliet and Sophia

Juliet, 4, and her sister Sophia, 7, have genetic hearing impairments — the result of recessive genes that Jennifer and her husband Bill both carry. Jennifer has looked into her family tree and found, since 1871, six ancestors who were deaf, including two great-great-aunts who, like Sophia and Juliet, were sisters. On a scale of mild, moderate, severe, and profound, Sophia's deafness is severe; she can hear with hearing aids. Juliet's deafness, though, is profound, which made her a candidate for a cochlear implant. When she was 3, Juliet got a second implant, in her other ear, which has enhanced her ability to locate sound.

About the Author: Jennifer Rosner is currently writing a memoir about the history of deafness in her family. She reports that Juliet and Sophia often hear more than hearing people, because they have learned how to listen. Of course, sometimes they opt not to listen, like when Jennifer calls out that it's time for bed.

1 Month Update

2008-11-16T23:45:00.000-08:00

Landry has been hearing for exactly one month today and we are astounded by her progress!

In true Landry fashion, she has taken her new "hearing" in complete stride. Though the last year has been quite an ordeal for us, it must seem perfectly normal to her to begin hearing at 10 months!

Some milestones to note during the first month:
*startles to sounds
*localizes and turns to noises with great accuracy including sounds coming from distances of 5 feet+
*mimicks sounds
*matches intonation with surprising reliability
*tunes us out when she doesn't want to listen anymore (is she 13 already???)
*LOVES music and dances with great enthusiasm! (We were told that many CI wearers do NOT like music, so this is a tremendous relief!)

Speech progression:
"Mmmmmmmm"-one week post-activation
"eh-eh-eh"-2 weeks post-activation
"mamamama"-3 weeks post-activation (just babbling, not as in, "Mama!")
"dadadada"-3 weeks post-activation (again, not as in, "Dada!")
"bbbbbbbb"-3 weeks post-activation (mimicked sound when I asked if she wanted a, "B-b-b-b-b-b-anana"
"Uh-uh!"-3 weeks post-activation ("Uh-oh!" when she drops something)
"M-m-moe!"-3.5 weeks post-activation ("More"...food/Daddy/Loofah/Mommy/music/books/etc. She usually signs "more," too as she's saying it for extra measure!)

Her favorite noise is still "AAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHH!" with a huge grin! Landry is constantly making sounds that we've never before heard her make and is absolutely loving her new listening ability. She pats on her head whenever her CIs are off now and the only times she pulls off her CIs are when she gets bored in her carseat and when she wants us to know that she's ready to go to bed.

We scrapped the baby-worn configuration that Cochlear sent us and are now using wig tape to stick the pink processors behind her ear (with the wig tape on the flat part that sits against her head). This reduces the number of wires and simplifies the entire process which is a relief given that we put them on and take them off an average of 10 times per day.

We are in the process of putting together a video of her speech clips so we can keep a great record for her to enjoy when she's older and will post as soon as it's finished...

Wonderful Progress!

2008-11-16T23:31:00.000-08:00

We have not been great about updating everyone on Landry's hearing/speech progress, but now have documentation to share!
The other day, I caught Landry playing with Loofah's dog food bowls and snuck up on her. Watch the video below and notice how quickly her head spins around when she hears me call her...she knew that she had been caught red-handed!

Most parents would probably drop the camera and stop their child from snacking on kibble, but I was savoring the moment. Before her CI activation, I could sneak up and shout her name 1 foot from her head and she wouldn't even realize that anyone else was in the room with her. Some remarkable points to notice in this clip:

1. Not only did Landry turn to my voice, but she figured out pretty quickly from which direction the sound was coming!
2. She has become very reliable in saying, "Mmmmmmmmmmmmmmmmmmmmmm" when she eats-this is something that her teachers have been working with her on at school in order to give her sound/word/action association.
3. She now understands that, "Uh-uh-uh!" means that she's in trouble. She turned to me and ditched the evidence...being 11 months old though, knowing that she was in trouble didn't stop her from doing it again!
4. She has only been hearing for 1 month!

Smooth Sailing So Far...

2008-10-29T00:17:00.000-07:00

Landry's activation went wonderfully! (see her blog for more info) Over the last few weeks, we have been teaching her how to identify, localize and discriminate sounds as well as attach meaning to them. For example, when Landry hears a knock on the door, we show her that the sound she heard was someone knocking at the door, show her where the sound is coming from, teach her the difference between the sound of a knock at the sound of a door closing, and teach her to expect that someone will soon be coming through the door. It's a bit like having a 10 month old newborn since absolutely everything is brand new to her.

I read an article the other day which explained Landry's situation perfectly:
I’ll try to make a visual picture that relates to the way sound is heard by a child with a cochlear implant. Suppose that you have to identify a four-legged animal, and you’ve not seen that animal before but you have to figure out what it is. Maybe you have to draw it. Maybe you have to learn the name for it. Now that animal is standing in back of a bunch of trees. To see that animal, you have to look through tree trunks that are hiding big parts of that animal. Now, if you were looking through those trees with the equivalent of a hearing aid, you could probably only see the tail end of that animal because you could only hear the low frequencies with that hearing aid. With a cochlear implant, though, you can see pieces of that animal’s head, pieces of its neck, its legs, its body, pieces of its tail end, but you still are missing pieces in between each of those that you see. The reason I’m bringing this up for you to think about is because it’s important for us to realize that children who are using cochlear implants still don’t see the whole animal. They see more of a range of that animal but they have to use their brains. They have to use what they already know about the world. They have to use their cognitive abilities to fill in those gaps to be able to put together a picture of that whole animal. That’s the kind of task that a child is facing using a cochlear implant. -Dr. Patricia Spencer, Professor, Department of Social Work, Gallaudet University

Landry's Activation is Tomorrow!

2008-10-15T17:19:00.000-07:00

Because her ears have healed so well, Landry's doctor feels comfortable giving her Audiologist the green light for activating her cochlear implants tomorrow (Thursday)!

For those of you who are totally confused by this process so far (and you're not alone, I promise-we still get questions from friends and family whom we thought understood it all!), here are a few quick FAQ's that we've gotten recently:

"Hooray! The surgery's over and was a success...so she can hear now, right?"
Wrong. The surgery implanted the internal device into her cochlea and secured the "receiver" to the inside of her skull. For the last week, she has heard absolutely nothing. Nada. Zip. Zero.

Here's what the internal part looks like:

1. Sound processor: External sound processor captures sound and converts it into digital signals.

2. Digital signals: Processor sends digital signals to internal implant.

3. Electrode array: Internal implant converts signals into electrical energy, sending it to an electrode array inside the cochlea.

4. Hearing nerve: Electrodes stimulate hearing nerve, bypassing damaged hair cells, and the brain perceives signals as sound.
"What will the external part look like?"

Landry will have two external processors for each ear, one to wear on each ear and one set as a backup. We have ordered one set in a skin tone and the other in hot pink!

"What is the "activation"? I thought everything was finished now..."
After the incision has healed, the external components (which look like a hearing aid) of the device can be programmed and activated. The activation includes:
Fitting the headset
After the incision has healed and swelling has subsided, an audiologist attaches a headset. The headset contains an external magnet that is aligned with a magnet implanted inside the head during surgery. Adequate magnetic attraction is necessary to hold the headset over the internal receiver/stimulator so that information can be transmitted across the skin via radio frequency.
Cochlear implant check
The device is checked through a computer system, by communicating information between the cochlear implant and the external speech processor. Every component, including each electrode, is checked to make sure it is working properly.
Programming the speech processor
The speech processor is programmed with a special computer system by an audiologist. Each electrode is fine-tuned for threshold (first hearing) and for comfortable listening levels. As each electrode is turned on, very small increases of electrical current are delivered to the hearing nerve until the patient hears a soft beep or tone. Once the softest hearing level is set, the patient listens for an increase in loudness until these beeps or tones become comfortable to hear. These steps are repeated until all electrodes are set for soft and comfortable levels. From these loudness judgments, a "hearing map" is created. The map is a specially designed set of instructions that tells each electrode how to stimulate the nerve endings in the cochlea.

Once a map is created and downloaded into the speech processor, the speech processor is turned on, and the patient hears through the cochlear implant for the first time. On this first day, speech usually sounds garbled or high-pitched. Environmental sounds may be difficult to identify. Over time, speech and environmental sounds become clearer and more natural. The audiologist will verify that the cochlear-implant recipient is able to tolerate a range of sounds, such as conversational speech, loud speech, hand clapping, coughing or doors shutting.
from: The Mayo Clinic

The reactions from babies range from:

to:

...and everything in between! Given Landry's curious personality and the timing of the activation (hooray for pre-nap scheduling!), we don't expect her to cry or be upset, but we're prepared for anything! Our prediction is that she'll respond something like this:

Check back tomorrow night to see if we were right!:)

"What brand of implant did you decide to go with?"
Cochlear brand Nucleus Freedom model

"But after tomorrow, Landry will be "done" with all of this, right? No more doctor visits?"
Several programming sessions are required to obtain and maintain optimal performance from the device. We will go back to her Audiologist on Monday for a recheck — and again after two weeks, one month, three months, six months, nine months and one year. After the first year, we will only have to schedule annual appointments.

"Once those visits are all over, she'll be able to listen and speak normally?"
Not exactly.
Rehabilitation involves training the brain to understand sounds heard through the cochlear implant. Since the cochlear implant restores awareness for all sounds, Landry might be overwhelmed initially. Her hearing loss was so profound that she never heard normally to start with, so it will take time for her brain to recognize what these sounds mean. We are told that the more she wears the auditory processors, the faster she'll learn to interpret new sounds.

What Exactly Did Landry's Surgery Involve?

2008-10-07T17:09:00.000-07:00

This FLASH video was put together by The California Ear Institute and is an outstanding explanation of the implantation process! Be sure to click the arrows to advance to the next slide...

Surgery is complete!!!

2008-10-06T11:08:00.000-07:00

Landry just made it out of surgery and, according to the doctors, everything went smoothly. Kelli and Michael will be staying at the hospital with Landry overnight, so all of you will have to wait a little while longer for more details... Thank you for all the thoughts and prayers!!!

Landry surgery update

2008-10-06T08:03:00.000-07:00

Just a brief update - Kelli and Michael just took Landry in for surgery. Landry was in good spirits despite not having eaten since 2am. Now the waiting begins.....

Prayers for Tomorrow

2008-10-05T21:02:00.001-07:00

For those of you who like to pray / meditate with specifics, here they are! :)

Landry's surgery has been moved up and will now likely begin at 7:15 am (PST)
Her anesthesiologist will be Dr. Bryan Bohman.

Her surgeon will be Dr. Joseph Roberson

She will be staying overnight at LPCH

Please check this blog (or sign up for email updates using the button on to the left) for updates throughout the day-we'll keep you posted as soon as we have information!

To those that we know well and those we have yet to meet, we appreciate you.

So that Landry can know how much she was uplifted on the toughest day of her little life, would you (friends, family, blog-stalkers and friends we haven't yet met) please leave a quick note as a comment to this post? People have told us that they are nervous about posting because they can't think of the "perfect" thing to say; if you feel inspired to wax poetic, feel free, but know that even simply leaving your name will let Landry know that she was in your thoughts today. We would love to share them all with her in a book that we are in the process of creating for her to read once she is older...

Much love to you all,
Kelli & Michael

Prayer Request: Monday Morning...Landry's Surgery

2008-09-30T21:53:00.001-07:00

Landry's bilateral CI date is rapidly approaching! We can't believe that it is on Monday and are both excited and nervous about the outcome. Fortunately, we have quite a few balls in the air right now which are doing a great job of keeping our minds occupied in the meantime.

Her actual surgery time is 8:30am (PST) and the procedure should take between 2 and 3 hours. We would greatly appreciate your prayers (and your friends', and THEIR friends'...) during these hours as we sit on pins and needles waiting for Landry to re-appear with her bionic ears.

They will keep her overnight just to monitor her and will allow one of us to stay overnight with her. It's hard to believe that it will be 10 months to the week that we were last in the hospital having her!! Even more symbolic is that 10 months will also mark the date when we were first alerted to the possibility that something was not right with her hearing...
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For those alert readers who realized that tomorrow was to be Landry's sedated ASSR test, please know that we have cancelled it. We have prayed that she would either show a significant improvement or a significant decline in her hearing so that we could avoid sedating her twice in one week; (un?)fortunately, our prayers were answered as Landry's speech has changed noticeably from babble to "sing-songy" tones which she seems to feel more than she hears. She has also, in the last week, started to mimic the motion of our mouth when we tell her, "Hi," but when she does it, she doesn't make any sound. It is both heartwarming to know that she is so eager to speak and heartwrenching since she has no idea that she's supposed to be making a sound when she says, "Hi!" We are hoping that it will be a different case after her activation on the 24th. Both of these observations as well as Landry's newly-developed consistency in the sound booth when being tested give us the confidence to move forward with the surgery knowing that we are doing the best thing possible for our little girl (hopefully she'll agree with us 15 years from now!).
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Thank you to everyone for your cards, phone calls, emails, comments on our blog and Landry's. Many of you have generously offered to bring meals over; we will gladly accept if you promise not to go to too much trouble! The easiest way to keep track of this is if you can simply leave a comment in response to this post "claiming" a day...that way, we can keep it straight! We are so blessed to have such considerate friends and will gladly return the favor in the future.

We will keep you abreast of any updates, but please check in often on Monday as we will be calling a friend with updates from the hospital and she will update this blog with new news.

Landry's New Surgery Date

2008-09-16T17:21:00.000-07:00

We had a great meeting at CEI this morning and found out wonderful news! They have an opening for a sedated ASSR hearing test on October 1 and have booked her surgery date for October 6th. This was exactly the timeframe that we had hoped for-enough time to give us a chance to get in one last test before proceeding with the implants.

Thank you for all of your prayers-they've worked once again!

Angel Among Us

2008-09-15T20:39:00.000-07:00

As Landry's surgery date quickly approaches, the butterflies are starting to appear out of nowhere. We both felt totally confident in our decision to go ahead with bilateral implantation, yet as each day passes, I, for one, am having trouble silencing the doubts that keep finding their way into my thoughts.

I am not in denial (really, I promise!) about her deafness; I accepted it not long after we learned that our then 3.5 month old wasn't hearing normally, but still have nagging doubts "What if we're missing something?"
"Did she really turn toward a sound that doctors told us she couldn't hear or am I completely losing it?"
"Other people have seen her turn to sounds that she shouldn't hear, so why won't she do it consistently enough so that her audiology team can see it more than a handful of times, too?"
"Why is she babbling just like her 9 month old peers if doctors told us that she wouldn't be talking much at all by this point?"
"What if we do the CIs on both ears only to find out that this Connexin mutation ends up being nothing more than a marker for some curable condition that manifests itself in hearing loss?"
"What if she's just 3.5 months behind auditorally from having fluid filling her ears for the first 3.5 months of her life?"
Some are rational and some come simply from my maternal fear of handing my daughter over to someone I've only met once for major surgery. And making an irreversible decision on her behalf that she will have to live with even after we're no longer around; that, too.

Just this Saturday, I was in SF with friends and had just finished updating them about Landry and confessing my hesitation about doing the surgery so soon. We walked out of the restaurant where we were having brunch and next door to a cute boutique where we noticed a mid-30's guy kind of watching Landry (in a curious, not creepy way). He got up and walked away, only to return a few seconds later with a lady by his side. She introduced herself and said that her boyfriend noticed Landry's hearing aids and quickly came over to ask her to come talk to me. She sounded totally "normal" but pointed out that she had a single CI and was unbelievably pleased with the outcome. We chatted for a bit, but it seemed like she left as quickly as she had appeared. She was gone before I had a chance to bombard her with questions or even give her Landry's blog information so she could peek in on her progress, but I felt like she came into my life at exactly the time that I needed her to and brought a message of confidence that I was so desperately craving.

Regardless of my doubts, I have to accept the fact that we are making the best decision for her with the information we have at the moment and, short of the discovery of a "people-with-Connexin-gene-mutations-shouldn't-wear-cotton-or-they'll-go-deaf" discovery, we'll likely never know what would have happened had we made a different decision for her. One of the things I wish most is that Landry were old enough to be more consistent in her reliability to turn or startle to sound or be old enough to tell us what she hears so that we are not making an irreversible decision for her based in large part on computer diagnostics.

Because of the variability in Landry's hearing, her doctors are reviewing her genetic results (not that they were done incorrectly the first time, but to see if there are any other markers that would help explain what's going on). We are also in the process of scheduling one last ASSR to get a final read on Landry's hearing. Because she'll have to be sedated in order to get accurate results, this entails a bit more coordination between the audiology team, the anesthesiologist and the hospital and might require us to push back the surgery date a few weeks from the 22nd. We have Landry's Pre-Operation meeting with the surgeon tomorrow morning and will know more then.

Specific prayer reuqests:

-That Landry's hearing either shows either significant improvement or a significant decline by Friday (her last response-based test) so that our decision becomes much more clear.

-That the scheduler is able to coordinate the necessary team members to run an ASSR on Landry this week.

-That God keeps sending people into our lives to relieve our (my?) doubts.

-That Landry's teething troubles not coincide with her surgery date (i.e. that this first tooth comes in quickly and the next tooth holds off until after the surgery)

Thank you all (friends, family and strangers!) for your continued support and prayers/meditations. Your notes, phone calls and comments on our blog have been so uplifting during this challenging time. Please keep them coming!

Are YOU the 100th Visitor to Our New Site?

2008-08-19T01:17:00.001-07:00

Check the counter at the bottom of the page...if you are lucky #100, tell us in the "comments" section and you'll win a prize! :)

Thank you for the great response to our new site-check back often!

The Sounds of Silence

2008-08-19T00:27:00.000-07:00

We were unbelievably curious to know what Landry currently hears (both aided and unaided) and what we can expect her to hear after Cochlear Implants and extensive Auditory Verbal therapy.

Click each of the links below to hear an example of hearing:
With hearing aids...
Landry hears even LESS than this, even with her hearing aids on (which is why she "babbles" rather than making strings of individual consonant-vowel combinations such as "ba," "ma," "ga,"). Try to guess if the voice is male or female and what s/he is saying before listening to the next example. In the "comments" section below this post, tell us what you thought you heard!

Normally...
Is this what you thought he said based on hearing the first example?

The day the Cochlear Implants are activated...
Most CI recipients report nothing more than beeps and squeaks for the first few days until their brain adjusts to the new stimuli.

A few days after activation...

A few weeks after activation...

Remember to post in the comments section what you thought you were hearing in the first sound clip! Best listener wins a prize!

Landry's Latest Testing Results

2008-08-18T15:25:00.000-07:00

Landry had another great audiology appointment today and had consistent results in her right ear unaided VRA testing.

Annie, Landry's favorite audiologist, took us into a soundproof booth and removed her hearing aids. She inserted little tubes into Landry's ears and each tube sent sounds directly into her ears; sometimes just speech and other times simply tones of varying pitch and volume. Each time we do the VRA, Landry plays the role of Pavlov's ~~dog~~ puppy and has been conditioned to turn toward a dancing bear in the right corner of the sound booth every time she hears a sound. This testing is called VRA (Visual Reinforcement Audiometry) and is the same thing that Annie will do to map Landry's Cochler Implants in October.

There are quite a few audiologists who follow Landry's blog, so this part's for you:

For everyone else who has not chosen to devote your lives to auditory disorders, here's an explanation of the chart in a nutshell:

The center chart shows Landry's SAT (Speech Awareness Threshold) which is the lowest level at which a person is aware of speech. Because she's so little, she does not have to repeat back the words, just know that speech was present. In the below video, the SAT is what Annie was trying to determine when she said, "Landry! Uh-oh! Bu-bu-bu-bu..." (note: this video was taken 2 weeks ago during the session where she didn't respond at all, even when wearing her hearing aids. Today, like every week prior to this video, Landry turned in response to Annie and started talking back to her! Lisa, Annie's assistant, is holding Landry and I am trying to distract her with a toy so that Annie can see an obvious head turn or startle in response to the sounds.)

Landry's SAT levels have been pretty consistently 100 dBHL in her right ear(equivalent to a MAC truck, a lawnmower or an electric saw next to her ear) and 85 dBHL in her left ear (equal to a dog bark or a piano playing).

Landry's report shows the results from her right ear only since she became tired, cranky and squirmy before Annie had a chance to test her left ear! Annie piped various pitched and volumes of sound ("warble tones") and learned that Landry hears, without her hearing aids, sounds equivalent to the MAC truck, a rock concert and a helicopter. Keep in mind that these are not noises heard in the distance, but the equivalent to them being 2 feet from her ear. I drew in the "speech banana" to show where she lies in relation to hearing the spoken word...not great, huh?

The test today showed that her left and right ear are almost equal in their level of hearing loss (her left shows only a slight gain over her right) and she is still an "excellent" candidate for CIs. Her surgery date is still scheduled for September 22nd (although we welcome all prayers/meditations/positive thinking directed toward the restoration of Landry's hearing before her surgery date)!

"What is your ultimate goal for Landry?"

2008-08-18T11:43:00.000-07:00

Upon telling us that Landry was, indeed, profoundly deaf, her audiologist asked us, "What is your ultimate goal for Landry?"

Excuse me? She's 3.5 months old. Our ultimate goal?

Happiness...A normal life...Acceptance of her deafness...College...Happiness...Pursuit of her life's passion...Her own family one day...Happiness.

What a strange question to ask parents who have just received life-altering news.

After going home and Googling everything related to infant deafness, we began to realize what the audiologist had actually been telling us:

Landry cannot hear. Without intervention, she will never learn to speak normally. Do you want her to remain soundless* and rely on a manual language or do you want her to have cochlear implants and teach her to listen, hear and speak?

(*We used "soundless" rather than "deaf" because she will always be deaf. Cochlear implants are not a cure for deafness. She does not, however, have to live without sound.*)

Among the list of issues that we discussed before becoming parents, Cloth or disposable? Public or private? When can our kids date? "How do we want our kids to communicate?" didn't make our top 1,000 things to consider. Neither did, "What if our kids are deaf?"

After doing a tremendous amount of research, we decided upon the Total Communication approach with Auditory Verbal and a SEE foundation for manual communication. We feel strongly that Landry will have a great understanding of a manual language as well as the opportunity to fully participate in the listening and speaking culture that makes up our everyday lives. Because she was born deaf, we want her to have strong ties to the wonderful deaf culture; however, with her Cochlear Implants, she will be able to live and function normally in the hearing world as well, thus placing her in a strange auditory purgatory....

Following is a list of some of the info we considered:
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Methods of deaf communication

Auditory/oral
What Are the Benefits of an Auditory-Oral Approach?
The primary benefit is being able to communicate directly with a wide variety of individuals. This ability brings with it options in terms of education, vocation, and social life. Geers and Moog (1989) reported that 88% of the 100 16- and 17-year-olds they studied had proficiency with spoken language and had high levels of speech intelligibility. The average reading ability of these students was at 13- to 14-year-old levels, which is approximately double the national average for all children who are deaf.
What Are the Limitations of the Auditory-Oral Approach?
As with every approach to educating children who are deaf or hard of hearing, not all children will be successful. Unanswered questions remain about auditory functioning (even some hearing children cannot use their hearing well), language processing (some children may also have additional language disorders), and learning styles (some learning styles inhibit the attention and vigilance needed to develop orally). As research provides more information, the small number of children who cannot benefit from auditory-oral education will diminish. Fortunately, the availability of effective amplification removes severity of hearing loss as a limitation of auditory-oral education.

Auditory/verbal
Who Can Use the Auditory-Verbal Option?
The auditory-verbal option is an early intervention strategy. It is not a set of principles for classroom teaching. The purpose is to teach auditory-verbal principles to the parents of very young children who are deaf or hard of hearing. Therefore, any family with a young child, regardless of the severity of the hearing loss, can choose the auditory-verbal option. As with all early intervention programs, the younger the child is identified as being deaf or hard of hearing, the better. All children in auditory-verbal program will need comprehensive and aggressive audiologic management. In the United States, the auditory-verbal approach is usually conducted by private clinics, therapists, and programs, although some publicly funded projects embrace auditory-verbal principles.
What Are the Benefits of the Auditory-Verbal Option?
The majority of parents of children who are deaf or hard of hearing have hearing within normal limits. Parents in auditory-verbal programs therefore do not need to learn sign language or cued speech. In auditory-verbal intervention programs, parents are returned their natural parenting role. Auditory-verbal therapy sessions typically address speech, language, and auditory goals with the therapist working in partnership with the parents so that the parents can model communication strategies with their child throughout the child's daily life. Results of a study of graduates of auditory-verbal programs in the United States and Canada (Goldberg & Flexer, 1993) showed that the majority of the respondents were integrated into "regular" learning and living environments. Graduates often had been mainstreamed in their local schools, attended post-secondary institutions that are not specifically designed for persons who are deaf or hard of hearing, and were involved in typical community activities. In addition, reading skills of auditory-verbal children have been demonstrated to equal or exceed those of their hearing peers (Robertson & Flexer, 1993).
What Are the Limitations of the Auditory-Verbal Option?
The auditory-verbal approach depends highly on parental involvement. It is not a classroom approach but a style of interaction between parent and child. If the parents are unable to commit to the intensity of involvement required, then the child may not make as much progress as she or he could. Further, the auditory-verbal centers and practitioners usually are found in areas of denser population and may not be easily accessible to families in rural and remote areas. Finally, many auditory-verbal centers are not supported by public funds, so a fee for services may be requested, although scholarships may be available.

Cued Speech
Brief description: It is a manual augment to auditory/oral/speechreading. As such, it is really closer to an oral than manual approach. It is a set of handshapes made at various locations around the face. It is used to help distinguish between different sounds that look similar on the lips and to make speechreading easier. It is popular in Australia and Canada, apparently, with some use in the US. In some programs it is used only by the teacher; in other programs, the children are encouraged to use it, also (expressive cuing). Some parents learn it, and some cued-speech kids are mainstreamed with help from Cued Speech transliterators (interpreters).
What Are the Benefits of Cued Speech?
For families of children with disabilities, Cued Speech removes communication barriers. Normal interaction is restored quickly because the system can be learned in about 18 hours (Cornett & Daisey, 1992). Once the system is mastered, any word in the language can be cued as well as environmental sounds, nonsense words found in children's literature, proper nouns, and the large number of English words for which there are no sign language equivalents. It provides an appropriate foundation for reading and writing English. Children who have grown up using the system read and write on the same grade level as their hearing peers (Wandel, 1989). While not developed for purposes of speech training, Cued Speech provides a system that reinforces the work of the speech therapist, showing pronunciation, accent, duration, and the rhythm of speech. Since Cued Speech is presented with natural, running speech, it has been shown to improve speechreading when the cues are not in use.
What Are the Limitations of Cued Speech?
While sounds that look alike are distinguishable because of the hand cues, lip movements still are an integral part of the system. Cuers must make lip movement and be within 20 feet of the cue- reader. The upper body and face should have adequate light. Cued Speech is not an ideal platform medium. The Cued Speech system is more than 30 years old. The numbers of cuers and support groups vary

SEE-1 - Seeing Essential English
This method was developed by David Anthony. It is based upon signing in morphemes or units of meaning. It is known also as MSS.

SEEING ESSENTIAL ENGLISH (SEE I) and SIGNED EXACT ENGLISH (SEE II)
The idea behind these systems is that Deaf children will learn English better if they are exposed, visually through signs, to the grammatical features of English. the base signs are borrowed from ASL, but the various inflections are not used. A lot of initialization is used. Additionally, a lot of "grammatical markers" for number, person, tense, etc. are added and strict English word order is used. Every article, conjunction, auxiliary verb, etc. is signed. Also, English homophones are represented by identical signs (i.e. the same sign is used for the noun fish and the verb fish, which have different ASL signs). The difference between the two is minor - the principle one being that in SEE II ASL signs for compound words (like butterfly) are used, where the two signs representing the separate English words are used in SEE I. SEE-1 and SEE-2 are signing systems rather than languages on their own. Therefore some people claim that exposure to them does not provide children with the complete linguistic access, which is needed to internalize whole language.

SEE-2 - Signing Exact English
This method was developed by Gerilee Gustason. It uses lots of initialized/ASL signs + endings, and is very literal. See above for more information.

L.O.V.E. - Linguistics of Visual English
This method was developed by Dennis Wampler. It has similarities to SEE-2 and Bornstein's Signed English method. It is a signing system rather than language on its own. Therefore some people claim that exposure to L.O.V.E. does not provide children with the complete linguistic access, which is needed to internalize whole language.

V.E. - Visual English
A mention of this term was seen. It is not known whether this is the same as L.O.V.E. or not.

Signed English
This method was developed by Harry Bornstein, one of the people on the Gallaudet Signed English project (those little books for children you see in various public libraries). SIGNED ENGLISH is similar to SEE-1 and SEE-2, but a little simpler. It is primarily intended, by my understanding, for use with young children and the intellectually limited. It uses English word order, but fewer grammatical markers than the SEE systems - it has fourteen, based on Brown's 14 grammatical morphemes (e.g. plural /s/, poessive /s/, /ed/, /ly/, /er/, /ing/, /est/, I should know what the others are but I don't.) The problem with these systems is that they are SLOW. They are easier to learn for hearing people than ASL, but they are slower to use, because, on average, signs take twice as long as words to produce. So the average proposition takes twice as long to express. Also, you have to be grammatically very self-aware to use them. The research shows that most parents and many teachers who are trying to use these systems end up leaving out many of the gramamtical markers and that many children exposed to them end up modifying them to more ASL-like forms.

Pidgin Sign English
This is a contact language, which ranges from being more Englishy to being more like ASL.

PIDGIN SIGNED ENGLISH
This is what happens when adults try to learn ASL, basically. It is ASL and some of its grammar (how much varies from person to person) in English word order and with other "englishism" (like aux. verbs). Children exposed to PSE will often produce grammatically perfect ASL.

Sign English
This method uses more ASL and fewer markers than Bornstein's Signed English method.

Amelish
This term was coined by Bernard Bragg from Texas. This method uses lots of ASL & fs in English order. C.A.S.E - Conceptually Accurate Signed English This is like Englishy PSE or Bragg's Amelish. It is a signing system rather than language on its own. Therefore some people claim that exposure to L.O.V.E. does not provide children with the complete linguistic access, which is needed to internalize whole language.

ASL
This is a language on its own, which uses no voice. It has its own grammatical structure and its own linguistic structure. In the past, this language was called also AMESLAN.

M.C.E. - Manually Coded English
As one of the contributors to this article understand it, MANUALLY CODED ENGLISH is not a a particular method - it is a general description of all the system that attempt to reflect English grammar, etc on the hands.

ROCHESTER METHOD
This method is not very popular. every word is fingerspelled.

Total Communication
Total communication (TC), a term coined by Roy Holcomb in 1967, is the title of a philosophy of communication, not a method (Scouten, 1984). Total communication may involve one or several modes of communication (manual, oral, auditory, and written), depending on the particular needs of the child. The original expectation of TC was for teachers to use the communication method(s) most appropriate for a particular child at a particular stage of development. Therefore, there would be situations when spoken communication might be appropriate, other situations where signing might be appropriate, others that would call for written communication, and still others where simultaneous communication might work best (Solit, Taylor & Bednarczyk, 1992).
Total communication seemed to be the bridge that allowed a crossover from an oral-only philosophy to a philosophy that embraced sign language. During the 1970's and 1980's most schools and programs for children who are deaf, as well as most major organizations in the field supported the TC philosophy. Today, although the debate seems to be between TC programs and bilingual-bicultural programs, "simultaneous communication is the most common form of communication used in educational settings for deaf children" (Kaplan, 1996, p. 469).
Who Can Choose a Total Communication Option?
TC may be used by families and educators. Since more than 90% of parents of children who are deaf have hearing themselves (Moores, 1996; Rawlings & Jensema, 1977), many believe that TC is a philosophy that will allow flexibility without eliminating any of the options. By using a total approach of speaking and signing, all members of the family, those who are deaf as well as those who are hearing, have continuous access to the communication occurring in their environment (Baker, 1992). Teachers may choose to provide TC options in their classrooms. Those who choose this approach have the responsibility and obligation of acquiring the skills necessary to meet all of the child's communication needs.
What Are the Benefits of a Total Communication Approach?
Most learning occurs through interaction with other people. Such learning is possible only when individuals are able to communicate with understanding. Likewise, the quality of the relationship between a child and her or his parents is dependent on the quality of communication existing between them. Thus, the choice of communication modes/methods that will be the most effective and beneficial to a child at home and in the classroom is of utmost importance. The main benefit of TC is that it can open all avenues and modes of communication for the deaf child. Parents and teachers might be reluctant to choose one mode of communication over another. TC, however, allows a variety of combinations. Research studies have repeatedly demonstrated the beneficial effects of total communication in all areas of deaf children's development, whether psychosocial, linguistic, or academic (Vernon & Andrews, 1990). If the effectiveness of communication is more important than the form it takes (Kaplan, 1996), then TC is beneficial because it allows the child to use the form that is best for him in any given situation.
What Are the Limitations of a Total Communication Approach?
One limitation of TC is that, while the theory may be sound, it may not be put into practice accurately enough in some situations. Many students who are deaf are immersed in a form of simultaneous communication that does not match their level of linguistic (language) readiness or ability. In the classroom, TC often becomes a simultaneous practice of combining manual components (signs and fingerspelling) with spoken components used in English word order. Although TC educational programs will differ on the selection of a manual system, all seem to combine signing with speech. The very nature of the two modes (spoken and visual) may cause signers/speakers to alter their messages to accommodate one or the other mode, causing a compromise between the two methods (Wilcox, 1989). Although the idea of individualization is at the heart of TC, teachers are limited to how many different modes they can use at one time. It may be impossible for one teacher to meet all the communication needs that might be present in a single classroom of children who are deaf and hard of hearing. For example, do the students really see a good representation of either English or ASL when the teacher or parent uses them inconsistently, or are they seeing only poor examples of broken English or ASL? Researchers do not agree as to whether a manually coded English system leads to better reading and writing scores (Mayer & Lowenbraun, 1990).

Amanda Wins!

2008-08-12T19:47:00.000-07:00

Of all the guests who viewed our new blog today, Michael's cousin, Amanda, was the only one to point out that we are not, in fact, the "Mgnich" family as the fingerspelling on our blog header had previously suggested!

We will assume, of course, that all of our other readers have sufficiently studied their fingerspelling and while you did recognize this error on Kelli's part, you were simply having a chuckle to yourselves to see how long it would take us to realize our mistake. And I thought we were friends...

So maybe Kelli needs to practice her fingerspelling a bit more before teaching Landry! (come on though...they look pretty similar...who's with me?)

Thank you, Amanda!

Welcome to Holland

2008-08-04T10:39:00.000-07:00

We have been overwhelmed by people's outpouring of love on Landry's blog...over 8,000 hits in 7 months. WOW.

We try to keep it as updated as possible so that friends, family and complete strangers (yes, there are quite a few fence-peekers) who are interested can keep up with her progress. It's a great way to stay connected and, frankly, is much easier than telling the same stories over and over again. Don't get us wrong, we are unbelievably uplifted by people's concern for Landry; however, it's quite refreshing to put the updates out there once and not dwell on the minutiae of doctor visits, testing results, etc. so that we can simply enjoy this bundle of giggles that God has given us.

Although we've done a good job of updating Landry's almost daily progress, we have failed to do the same in regard to our own progress as the parents of a profoundly deaf daughter. People seem to be curious about how we're handling this new role in which we've found ourselves unexpectedly.

Overall, we are doing quite well, to the point that some worry that we are not "dealing with it." On the contrary, the view from our side is that there is very little "it" to deal with. We are blessed to have an otherwise perfectly healthy daughter who happens to be deaf. Everyone has a cross to bear and deafness is Landry's. Was her deafness completely unexpected and shocking? You bet. Is it life-altering for all of us? Absolutely. Will the road ahead be easy? Definitely not, but we will absolutely cherish Landry's milestones that parents of hearing children take for granted.

So often, we are asked, "How do you do it?"
Our response, "With pleasure."

The below passage is the best way we have found to explain our experience.
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WELCOME TO HOLLAND
c1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.