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Ollie's new glasses!

kwilinski@mac.com — 2008-08-28T13:12:33-04:00

My boys

kwilinski@mac.com — 2008-08-27T09:02:47-04:00

Dentist, Eye doc

kwilinski@mac.com — 2008-08-20T13:19:12-04:00

Today was Oliver's sedated dentist appt. He did fine, but a vestibularly challenged kid is pretty funny coming out of groggy sedation! He had 3 cavities and demineralization which was treated with a fluoride gel. Elliot had the same problems and so with Ollie I have been obsessive about keeping his teeth clean and brushed, chewed xylitol gum as studies suggest that maternal transmission of dental caries can be slowed by xylitol, and basically did all that I could. But he still as cavities. And the two older boys have hardly had any. Genetics? Who knows.

Elliot, though, lost his first tooth recently! I was beginning to be a bit worried that he still hadn't lost one. He is 7 1/2! Hopefully, this will bode well for his permanent teeth-- that they will be coming in when he's older and more prone to keep them clean.

Speaking of teeth, we made a batch of peanut butter chocolate crunch fudge, which Ollie enjoyed. He retrieved the peanut butter jar from the garbage and enjoyed playing with it and licking his fingers. I took this picture:

This may explain why we are going to the eye doctor on Friday (though his eyes don't ALWAYS look quite that way)! It is his first eye checkup, and Elliot's yearly appt. Elliot wore a patch for a brief time at about age 5, and their dad had surgery on both eyes at that age for strabismus. Another genetic thing, apparently. He did look cute and excited. I tried to do it with natural lighting, so it's blurry, but it's still cute.

My favorite youtube video

kwilinski@mac.com — 2008-08-17T14:35:16-04:00

I came across one family's youtube video. I especially like the gasp sound at the beginning, the nurturing photo of mother and baby, and the feelings expressed by the music and words. It is a reality that parents go through a gamut of emotions when their baby is diagnosed as deaf, and this was a beautiful retelling of their journey.

http://www.youtube.com/watch?v=k9dTntdC9s4&feature=related

Amazing phrases from Oliver in the last couple of days

kwilinski@mac.com — 2008-08-07T22:03:25-04:00

"Mommy, where are you?"

and "Where are we eating lunch?"

Wow. We're getting questions down pat! Woohoo!

Youngest AVC graduate

kwilinski@mac.com — 2008-08-06T13:59:00-04:00

Well, today was a sad day, because Ollie will miss Miss Stacey! It was his last, official Auditory Verbal session. We do plan to go for a "check-up" after the boys get their new Opus processors, and then yearly after that, since many consonants don't come until 3, 4 or even later. Ollie is the youngest AVC graduate, likely due to two things, primarily: early implantation and AVT. We normalized listening and hearing.

Oliver is fluent in English. It's his native language, and he uses it with ease. He is ahead, actually, of his hearing peers.

And yet, a brief perusal of the blogs of "Deaf Culture" and "Deafhood" advocates just today finds parents like us being accused of "linguistic murder," called abusive (and therefore, we ought to be prevented from making language choices, much like you would prevent someone from hurting their child phsyically), etc. Another gem of a site equates their message of sign language use with the anti-smoking campaign, as if using AVT (or, really, just using ordinary spoken language) was as bad for kids as smoking. Brilliant. Recently, the most horrific attack on the A.G. Bell Association occurred-- a video of a supporter of the Deaf Bilingual Coalition posted a youtube video which included swastikas, guns and shooting of pictures of Dr. Bell in a cemetery.

Parents, I challenge you to believe that your deaf child CAN do anything! If you choose to teach sign language, that's your right... if you choose AVT... that's your right. If you want to be involved with oral deaf ed., contact A.G. Bell. If you want to be involved in a more TC approach, contact Hands and Voices. Make your choices, do your best, love your kids and stand proud of your choices. Spend time with those who applaud and support your efforts and rights.

Jumping off of my soapbox, now. :-P

Pictures

kwilinski@mac.com — 2008-08-05T10:08:36-04:00

Here is the new Zephyr Dry and Store. It's working great so far!

We've had a lot of requests in the last couple of years regarding the mic lock tubing from Cochlear which we use to keep Elliot's CIs on securely. Here's a shot! It works great for us. It is not from our manufacturer, and reportedly they don't sell to non-customers anymore. Doesn't make sense to me-- a sale is a sale! But you can circumvent that by ordering through a friend who uses Cochlear or by going through your audiologist. I bought two boxes when I ordered, so I already have some for Oliver, though when we tried it we discovered that his ears are still a little bit too floppy for this configuration. Here's how he wears it right now (pediatric battery pack with earmold):

Graduating and waiting for processors

kwilinski@mac.com — 2008-08-03T09:43:07-04:00

Oliver's graduating! It's official. A week and a half ago at AVT, our therapist informed us of the results of Oliver's testing which occurred right around his 2nd birthday:

"Oliver's auditory, receptive and expressive language skills are age appropriate at this time... he is producting novel phrases and simple sentences on his own. Early learned pronouns are emerging in his expressive language as well. His speech has improved as well, indicating his auditory feedback look is refining itself through listening. " We will go for yearly checkups, as suggested, to ensure that he is getting later-learned consonants and continuing normal language progress. I think the hardest thing is that Ollie loves to go see Stacey-- he often wakes up and wonders aloud "I go see Stacey?" or "I go play toys with Stacey?" He will miss her! We won't miss the long drive to the city, though.

Also, she was amazed at his language progress over the 6 weeks when we had no therapy due to vacations, illness, etc. He is now routinely speaking in 5 or more word sentences. This morning, for example, he said "I wanna get my bathing suit on. I wanna go swimming!" He remembered that we are planning to go to the lake today!

The message is: early implanted kids can be on par with their peers in toddlerhood. They can speak and understand easily. They can use the language of their friends and family.

Last week we eagerly filled out our forms for our new Opus 2 processors. It took some time to make all the decisions about color, battery packs and so on. We wanted to get it faxed in as quickly as possible, since we know that there are likely to be lots of people sending theirs in shortly and we don't want to get behind them in line! :-) The Shangri-La of CI users is the improvement of music appreciation, which the Opus programming is reported to assist. Also, it is reported to have better hearing in noise.

After many years, we have joined the ranks of Dry and Store users. Elliot was experiencing static again (same time as last year)... it would happen when he was running around in the humidity and then would go inside to the air conditioning... probably water condensing inside. It was remedied by placing in the drying box, but we want to ensure that we get as much moisture out as possible. Dry and Store is reputed to be the best. We got the new, smaller Zephyr. If we really like it, we'll get one for Ollie, too, but at this point he isn't sweating as much or running around outside as much, so I am giving it a trial run. The Zephyr was only about $65 at a site I found. The drawback is, of course, the dry briks which have to be replaced every two months. But they aren't expensive.

Things heard around here

kwilinski@mac.com — 2008-07-20T16:21:07-04:00

Oliver (age 2 years and 2 months) had a coaster, and I asked him "Where is the other one?" He reached down in the seat cushion, where he had stuffed the other one a few minutes prior. "Other one" he announced, triumphantly. And then he added, "oh, my goodmas!"

Some favorite phrases:
-I'm unna go downstairs (or upstairs, or outside)
-Im unna go play Kyle (or Lucas, both friends' of his brothers)
-Ahyee (Ollie) eat ____.
-read books!
-I'm sorry (followed by a nice hug)

We had a new on: "Where's Elliot?" Elliot had spent the night across the street at a friend's house, and he was noticing that he was absent. It was out of the blue, so a genuine question!

He's been sick, and so he's been declaring all week (even in his sleep): "runny nose!" He is not placated easily when irritated. His other exclamation is "itchy!" which is related to having been bitten by mosquitos and a few other bugs in the last few weeks.

I asked him this morning if he was poopy... he proceeded to tell me "no" (despite the odor) and blamed it on his cousin, saying "Eyijah poopy." Elijah lives in Michigan! He went on to say that "Uncle Kraigy poopy," and several other relatives.

He talks about running, because 3 of us in the family do it... "daddy's running shoes," "mommy's run-run-run," "Nick's running," etc. Also "daddy's running watch." When mommy is gone he repeats "she's coming, mommy's coming soon."

Right now he's exploring a closet and has found a coloring book... and is telling me "color paper." He became irritated when I got out 3 crayons for him, as apparently he'd noticed a nice kit of Elliot's. "Open it," he demanded! "I need color!" Noticing the paint palette, he said "I need paint!" "Help you (meaning, help me)" "Need get it out!" " I gonna get out" "That's Eyeeut's paint!" "Momma get out!" Well, I gotta go break it to him that he won't be painting right now...

Long time no write

kwilinski@mac.com — 2008-07-13T13:22:41-04:00

We have enjoyed a couple of vacations... the boys and I were in Michigan while the older two went to camp. We were able to visit with family and enjoy the cool weather! Then last week we were in Florida. Oliver's language is most definitely caught up, and I will elaborate on that more, later. In the meantime, here are some vacation shots! Note that it is very hard to get Ollie to sit still for one second, even for a picture. Even in the sand pics, with his CIs off, he is talking. And the rest of the pics show him trying to move, wiggle or generally keep going!

Phrases heard around here

kwilinski@mac.com — 2008-05-22T09:47:08-04:00

"Don't throw it!" (Ollie says this when holding a sippie cup. He has heard this phrase a few times!)

"Mommy came home!" (He says this after I have had a babysitter.)

"Come here!"

Interesting words he has used lately, though I know there are hundreds I'm leaving out:
crumbs
butterfly
bike ride
dirt
pot
empty
nice

We just celebrated his 2 year birthday and it appears that his testing is going to show him ahead of that! We're there!

Opus picture-- here's what we are anxiously awaiting!!!

kwilinski@mac.com — 2008-05-08T10:03:53-04:00

Back Yard Conversation

kwilinski@mac.com — 2008-05-08T08:56:11-04:00

I was enjoying the chance to plant some flowers yesterday. Oliver loves to be outside, puttering around with his toys. He was sitting in his Little Tikes truck, door open. Leaning forward he picked up a rock.

From ten feet away, we had the following conversation while I was bent over the flower pots:
"Rock, mommy."
"Did you find a rock?" (mommy)
"oh, yeah."
(Briefly he analyzed the rock, somewhat near his mouth, then...)
"Yuck!"
"Yeah, you don't want to eat rocks!" (mommy)
"bye bye, rock" (he throws it)

We had to run pick up dinner today because we ran out of time between running (both Nick and I needed to get some miles in) and Nick's guitar lesson. We hopped in the car, and I asked the boys (from the driver's seat) what they wanted for dinner. Ollie declared: "PIZZA!" So we went to the Taco Bell/Pizza Hut and got him one. :-)

HBO documentary about adults with CIs

kwilinski@mac.com — 2008-05-07T10:48:08-04:00

An HBO documentary, entitled "Hear and Now," will begin airing Thursday, May 8, at 8:00 p.m. EDT and continue airing throughout the month of May. The documentary is award-winning filmmaker Irene Taylor Brodsky's look at her parents' decision to obtain cochlear implants. Sally and Paul Taylor, who were born deaf, made the decision to undergo cochlear implant surgery at the age of 65. "Hear and Now" follows their journey into the world of sound.

Opus 2 released

kwilinski@mac.com — 2008-05-07T10:32:17-04:00

It's only a matter of time before we get our letters and can get our new Opuses!

Here's the press release:

http://www.medel.com.ar/ENG/US/40_News/10_pressroom/20_Press_releases/999_pr_opus2.asp

Hi Stacey

kwilinski@mac.com — 2008-05-07T10:00:26-04:00

Ollie just spoke with his AVT on the phone. Yes, at 23 months! He clearly understood her and offered her a greeting. Then he wanted to grab the phone... well, he is just a toddler.

Routine sentences that Ollie says lately:

Ah-yee syide! (Ollie slide-- he loves to slide at playgrounds or on his little toy in the backyard)
Kyuh's house (He likes to point out the neighbor boy's house, or any other home of someone he knows... this includes Lucas-- who he calles "goose,"Reece, Grandma and Grandpa, etc.)
Ah-yee eet more _____ (fill in the blank-- pretzels, goldfish, etc. are all intelligible)
Owside syide (see above)
Ah-yee's _____ (that's mine!)
Styoyer owside (I wanna go in my stroller on a walk!)
Eh-yee night night (Elliot's in bed)
oh my, Ah-yee (he says this when something spills or he makes a big mess)
Ah-yee cuhyuh (Ollie color)
no poops (self explanatory-- but he often denies the obvious) :-P

He just told me, while handing me a bowl... puhtzuhs empty, more puhtzuhs (the bowl is empty, I need more pretzels!)

It is very clear that Ollie can hear well and follow directions. He can be told several things and follow through with it (without seeing our mouths)-- such as put that in the garbage, go get a book, can you get your shoes, put the toy in the basket, etc. He can choose between food items to eat, such as chicken nuggets or macaroni and cheese. He frequently tells me what he want to eat, or that he wants to get in his high chair, then tells me exactly what he wants for lunch. Last night he found some ipod earbuds (no ipod attached), held them to his ears and sang a little song. Very cute! His big brother Nick has let him listen in, and we look forward to our new Opus 2 processors which will have bluetooth connections and improved music program maps! Woohoo!

Myth #6

kwilinski@mac.com — 2008-04-22T14:07:15-04:00

Myth #6: We don't really know who will succeed with cochlear implants; it's a crapshoot.

We do know who will usually succeed and we know what contributes to success. While there is some variability, and certain anatomical considerations which patients and doctors would need to discuss, the following are lists of what makes for successful implantation follow-up. I'm not talking candidacy, though the majority of profoundly deaf and some severely deaf individuals could be candidates. I'll save candidacy for another time, because there are plenty of myths about that, as well. Keep in mind I'm talking about typically developing children; those with other disabilities might have different measures for success and different paths to get there based on their developmental disabilities.

Success depends on:

1) Age of implantation for children. While there is no one specific age which is THE age, earlier is better. See studies on our Research page, plus more on Pubmed.

2) Less length of time without sound; for kids or adults who have lost their hearing due to meningitis or other causes, more time means more gradual decline for their hearing nerve. Some adults who never heard and never used hearing aids have enjoyed cochlear implants, but they will have poorer results with understanding speech, etc. (Again, candidacy discussions should be with your doctor).

3) Oral education following implantation. This includes bathing in auditory information both at home and at school (or child care). "Hedging your bets" reduces the use of auditory information. Granted, no one is suggesting that an older child suddenly be ripped away from a prior manual language, but the youngest implantees will have very little if any at the time of their surgery. In fact, some surgeons will refuse to implant if they do not believe that the family or patient is committed to using their audition. Why implant if you don't want to use the auditory information? That's what oral ed. is all about. Using the audition and creating your own. Exactly what oral method and how to evaluate progress is up to the parent and the people they rely on for evaluation.

4) Consistent care of the device: mapping are important! As a child or adult gets further out from their actual surgery date, the time between mappings will likely increase, but in the first few months, the parent or patient should be very aware of the ability to hear in the various frequencies. Parents may do the ling sounds, have children repeat various sounds or words while avoiding lipreading, etc. If you think they are missing something, inform the audiologist so that she can adjust the levels. Maintenance is also very important; if a child's device isn't functioning they won't hear. Parents can do the same thing described above. When Oliver wakes from a nap or puts on his CI in the morning, I might say "mommy" with my hand over my mouth, as he loves to repeat that word. Or I might say "baby," "candy" or "Nick." I always pick things he likes to talk about, but I mix it up. I can detect a broken cable in 5 minutes or less, and then check it on Elliot's processor!

5) Consistent wearing of the device. This seems like a no-brainer, but the key to auditory development is stimulating those nerves. Every minute without the device separates your child from kids who are hearing and developing. You can't get used to something if you don't wear it. If it's uncomfortable beyond the period of "getting used to wearing it," you need an appointment with your audiologist or doctor; cochlear implants should not hurt! They don't make loud static, they don't have feedback, and they don't "scare" a person who is used to hearing. IF there is a broken part there may be a momentary discomfort which parents can be on the lookout for and can fix with their "box of tools." Older kids will just tell you. Elliot once or twice a year will tell me "my cable is broken" or "I can't hear." He lives every waking moment as a hearing kid, so he can easily tell the difference and let us know. When he was a toddler we watched behavior and tested on a daily basis.

There are stories out there about CI "failures." Usually the real story would reveal a lack in one or many of the above criteria. And what really is success? I believe that cochlear implant success is being able to use it to receive and utilize auditory information in order to communicate and live safely. It isn't necessarily "perfect speech" for every child. No doubt most parents want their children to be understood by strangers and friends alike. For us, the devices have astounded us and the boys' speech is great. But even if they had pitch or tone qualities which were different, the top of my list would be easy communication. Second to that is being able to hear emergency vehicles, fire alarms, tornado warnings, microwave beeps, water boiling over, and the tap running (and stuff like that).

Myth #5 and what was heard around the dinner table

kwilinski@mac.com — 2008-04-18T15:53:34-04:00

Myth #5 Deafness is not a disability

This myth is bandied about by people who want to believe that everything is exactly the same (or better!) for deaf individuals. They declare that you can use ASL and life is all fine. This would eliminate the need for cochlear implants, and all people need to do is accept deafness as another form of personhood.

The problem is that we all live in a largely hearing world. If all humans were deaf, the above would be true. But they aren't. Without hearing, and without speech, one has a harder time becoming educated, finding meaningful employment and socializing in the world at large. I fully believe that it is a wonderful thing for ASL users to meet and hang out with those who use the same language. But for my boys, it has been important that they use the language of their family, friends, teachers, and peers.

Cochlear implants allow my children to function very normally in a hearing world. What always interests me is that when I run across the argument that deafness is not a disability, it is often on blogs where the same individual is fighting hard for rights under the Americans with Disabilities act. I agree that TVs should be captioned, insurance should cover cochlear implants, and that it is important for various public venues to be open to those who use a manual language. It is safer and the kind thing to do. But this means one has accepted that there is a disability present in deafness... perhaps a hidden one, but one that is crucial in communication. NO doubt-- without implants we would carry on and the boys could still do great things, as many people do overcome adversity in their lives. But we chose not to throw up an unnecessary obstacle and we know they will always be glad for that. This does not negate the value of the humans who have come before this age and who fought to overcome adversity, nor does it denigrate their personhood or abilities when we implant our kids and mitigate deafness.

Most hearing people realize the logic in this. Here's a link to an article which discusses the very thing I've believed for some time:
http://www.huffingtonpost.com/michael-russnow/political-correctness-on_b_97326.html

---

On a completely different note, Ollie's obviously hearing pretty darn well these days.

I have 4 boys, or 5 if you count their father. :-) Boys will be boys, and dinner can get a bit silly at times. At the end of meals, I often use dessert as a means of practicing imitation of sounds or words that we're working on with Ollie. He loves it. I have the boys be the model. So last night, I was trying to obtain the words "more candy, please." Dad decided that it was very funny to hold his hand up to his mouth (at the far end of the table) and say "moron" for big brother to repeat rather than the real phrase. This was not intended for Ollie to hear, really, and it was just to be silly with the boys.

But he heard it, from afar. Suddenly he was transfixed with the word which everyone was giggling about. "More- ON" he would say, giggling also. It seems that the more mom tried them to avoid the obnoxious word, the funnier it became.

Sometimes I'm all alone in civility, here! I'm not sure if overhearing "moron" was good or bad, but it did highlight the fact that he is in that "little pitchers have big ears" time of life!

Ollie and blossoming humor

kwilinski@mac.com — 2008-04-04T09:44:38-04:00

Ollie has always been quite a character. He has a "more" personality... you know, more demanding, more fussy, more fun loving, etc. He went straight from colic to being a demanding older baby to being a demanding toddler! He demands to go outside about 100 times a day! He asks to play basketball about the same amount. Those are his favorite activities. Thank goodness the weather is warming up and we'll be able to hang out in the back yard. I just hope that his determination is channelled into positive avenues.

Ollie is observant, and his language is keeping pace with his observations. We were at the playground (he LOVES playgrounds) and he stood in his favorite "post" at the top of the train car (the park has a large, metal train to climb). He watches kids, yells "heyyo" (hello) and basically enjoys himself. He was happily talking to me from afar when he observed, "Ollie uz CI" (Ollie has a CI). Then, he said that Elliot had a CI. I said, "yes, he does." Then he said "grandpa has a CI." (Grandpa has hearing aids, but he will be implanted soon so we just call them his CIs). Finally, he looked at me with a glint in his eye and laughed. "mommy uz CI!" I laughed and said "No, silly, mommy doesn't have a CI. Mommy has glasses." He clearly knew I did not have CIs, but he thought it was a funny joke.

Elliot (7) is beginning to understand more about the fact that some people who are deaf do not have CIs, and that it's important for kids to be implanted early. One evening last week I was preparing to read him a bedtime story and he got teary-eyed. "What's the matter?" He didn't say. Finally after some prodding, he admitted that he was sad that some kids don't get their CIs early enough and that they can't hear and speak easily. I told him that it was sad when that happens, but that his website had helped lots of babies whose parents have contacted us over the years and found out about the benefits of early implantation. That satisfied him, and he wiped his eyes and listened to the chapter of The Spiderwick Chronicles, his current favorite books. One of the difficult things as a parent is knowing that when you attend gatherings with other deaf kids, that realization will be apparent. There will be kids with HAs, kids implanted later, etc. It is all mind-boggling to a kid who has lived very normally and who doesn't think about deafness much. I think it is almost shocking to him to realize how different it can be for those without the advantage of CIs and a very early focus on audition and speech.

I was watching a special on PBS about race in America, and it highlighted the fact that white Americans often never think about their race (or rarely do), but that (due to prejudice and the ramifications) people of color often do. I thought that it was similar to disabilities, really. When someone is allowed to live in a manner that normalizes their experience, so that they don't have to struggle and fight to get what they need, they do not often think about their disability. Not that color is a disability, per se. But undergoing prejudice is. With cochlear implants, a child can hear like his best friend, talk to his grandfather, overhear the weather forecast, apply for a job without asking for modifications, etc. I do not think that Elliot thinks about his deafness on a regular basis. In fact, probably he thinks about it only in the context of when it adds difficulties, such as when he would rather hear during swimming lessons. Now people argue that deafness could be normalized if it was "accepted," however it is a real disability and puts up real roadblocks to success and even safety in a world which is largely filled with hearing individuals. Which is easier... to wake up and go about one's business or to continually endure incidents which "remind" one of the fact that one is deaf?

I have heard deaf adults claim that making life "easy" for kids won't solve everything. No, that's right. But there is no reason do undergo unnecessary difficulties in an age when implantation is so successful. They will still have to create their own way in the world-- develop motivation, become educated, learn social skills-- everything that any human on the planet would need to learn. Life isn't really easy for anyone; but today's deaf child can have the tools to reach their educational and occupational goals!

Myth# 3 and 4

kwilinski@mac.com — 2008-03-30T16:03:44-04:00

#3: Cochlear implants are pretty much glorified hearing aids.

This is spouted by those who 1) don't know the science behind CIs and/or 2) are often against CIs for their own personal reasons. It couldn't be further from the truth.

Cochlear implants are very different from aids, though both have a goal of bringing more sound. Hearing aids work best for those with mild to moderate hearing loss; cochlear implants shine best when implanted in those with profound hearing loss, though they also do great things for even those with severe hearing loss, today, and borderline candidates often find that the CI is easier than their old aids.

Hearing aids amplify sound. The remaining hair cells, in a DAMAGED COCHLEA, receive that sound. Cochlear implants REPLACE the missing or damaged hair cells and create normal levels of sound along the entire length of the cochlea. Sure, it's not exactly the same as having thousands of hair cells; someday we will probably be able to fix those cells. In the meantime, here's the difference: when a person with severe to profound hearing loss wears even the best high powered hearing aids, they often cannot hear much... or, they may not hear anything, as was the case with my boys. My father's hearing aids can no longer bring in some of the speech frequencies. It is common for children with hearing aids to have grammatical problems related to what they miss (possessives and plurals, both of which require hearing the "s" sound). Interestingly, some of the early research postulated that if we only need 6 or 7 phone channels to transmit speech, then we could do it in the ear. Voila. I hear pretty well on phones. Don't most hearing people? Today's CIs usually have about 20-24 electrodes contact points.

Cochlear implants allow severe to profoundly deaf individuals to hear a whisper. My neighbor noted that Elliot speaks in a normal, soft-ish voice, and that he sounds just like any other kid. I think she was just astounded that he was actually deaf, and perhaps it became more obvious to her when he had a sleepover at her house and took his CIs off for bed. Another neighbor who has known Elliot for 3 years now was surprised this morning when I referred to his deafness. "That's not just for a little hearing problem?" She had no idea; her grandson plays with Elliot at her house whenever he is in town. Clearly Elliot shows that his hearing via CIs is so good that he displays normally developed speech patterns, intonations and grammar. My boys would be unlikely to benefit at all from hearing aids. IF they heard anything from them (which is doubtful-- no residual hearing was detected to 120 db) they would only hear muffled environmental noise. The purpose of the implant is to allow them to interact easily with speech and audition in our family and community. If my sons can play with friends without any noticeable difference in their ability to enjoy the interaction, then I feel we have succeeded. We tried hearing aids as part of the standard CI candidacy process. It was a bust.

Recently, I heard Marlee Matlin's comments regarding CIs... she basically said that she was not a candidate because it would destroy her residual hearing. Well, yes and no. Sometimes it is destroyed, sometimes not. But since she had VERY precious little residual hearing left, the CI would allow more hearing, like having more hair cells. Her real reason is a personal choice-- she doesn't want one. That is a whole different ball of wax. It is not medically accurate to say that she's not a candidate. Chances are, she could be if she wanted to. In no way am I saying that she should-- prelingually deaf adults don't always enjoy the benefits that kids do-- but it's just a point I wanted to make about candidacy vs. choice.

#4: It is immoral to implant a child who is young; you should wait until they can decide for themselves /are 18/ are adults.

On the contrary: one could easily argue that it is immoral to fail to implant a child who could benefit, at an early age, IF they are a candidate. Why? Because now is the only time in their lives when they will really and truly be able to develop the neural pathways in the brain necessary for good hearing and speech. Older, pre-lingually deaf individuals benefit, but never to the same degree. Pre-lingual implantation is essential for their future! Waiting is just crazy. Waiting= deciding not to allow them to do well with a CI.

Myth #2 (in no particular order)

kwilinski@mac.com — 2008-03-04T14:37:03-05:00

Myth #2: Deaf people can't hear/use/enjoy music.

Let's take this a step further. Because we've all heard the stories of those with residual hearing or hearing aids who like the beat. However, you could have blown me over with a feather today when Elliot's piano teacher told me that he had better "relative pitch" than most small children and that, soon, he could develop PERFECT PITCH.

What?!

We've always held to the fact that Elliot hears. We know he hears really well, better than we could have ever expected or imagined prior to implantation. So, there are new joys every day with these things. We have always said that we would encourage music appreciation but that, depending on the placement of electrodes and the programming, we knew that he may not be able to match pitch.

The piano teacher is a substitute because his regular teacher had a baby, but this guy is incredible. He does what really seems like auditory training. He trained in Suzuki method, and has a lot of experience with small kids. I love listening in to their sessions. He seems perfectly suited to our situation!

Blowing the whistle on myths about hearing loss!

kwilinski@mac.com — 2008-03-03T13:46:44-05:00

Myth #1: That cochlear implants don't really enable deaf kids to hear.

They can, and they do! (But, unfortunately, our 15 year old dog can't benefit from the technology, though she could sure use it! LOL!)

For some reason, anti-CI people (who aren't even using the technology) insist that it's just a form of sound being brought in, and some even try to say they don't work. Well, you can argue semanticallly about what to call the message that comes in through the microphone and is received by the auditory nerve. But when children can understand you easily and can speak clearly and in complex ways, obviously using what must be clear audition, we can label it "hearing." Hey, we can call it whatever we want, as long as it works! If asked, Elliot (7) says he is hearing with his CI and deaf when it's off. Simple as that!

(And yes, that's Oliver blowing a whistle in the picture.)

New Videos Posted Today

kwilinski@mac.com — 2008-02-23T18:15:08-05:00

Several new videos of Elliot are posted at the bottom of Elliot's Videos page.

There is also a new video of Oliver on Oliver's Videos page.

Captioning, not.

kwilinski@mac.com — 2008-02-21T22:13:56-05:00

Reality Check: Elliot finds captioning "distracting" (yup-- his words alone)

John Fogerty "Don't You Wish It was True"

"I dreamed I walked in heaven just the other night
There was so much beauty, so much light
Don't you wish it was true
Don't you wish it was true"

I forgot a funny story which I need to share. About a month ago my parents visited, and all the boys enjoyed spending time with Grandpa and Grandma. A huge amount of time is always spent reading with Grandma... she has probably single handedly read thousands of books to my boys. We all love to read. But grandpa enjoys the cable TV, something he doesn't have at home. He enjoys the History channel, Antiques Roadshow, and the Weather Channel. And just in case you think Grandpa doesn't read, let me explain that he arrives with a stack of books in a large cardboard box when he travels. He just got his first book contract signed, in fact, and his own book (a fiction set in the Middle Ages) will be published in the fall! Woohoo! But a week after they left, Elliot (7) asked me:

"Why are the reading words still on the TV?"

We had turned captioning on for my dad, who apparently doesn't usually use it at home and enjoyed it on our TV, and no one had bothered to turn them off.

I said "oh, that's called captioning. Don't you like it?" He replied "no, it distracts me from what they are saying."

Well, I thought that was interesting. Like anyone, he could clearly get used to them. But the reality is that he doesn't NEED them, nor does he even enjoy them. Lest you think that is because he doesn't read well... he does!

Years ago my MIL (deaf from her teen years on) used the captioning for each visit to our house and I became sort of "addicted" to them. At the time I had a new, tiny hearing baby and I tiptoed all around the house, so captioning was another way to keep things veeery quieeet. Today, there would be no way to accomplish that kind of quiet (with 4 kids), and I have grown less accustomed to them. I have no qualms about using them or allowing the boys to use them whenever beneficial, but I found Elliot's comments telling. I believe they show that he not only hears extremely well, but that he finds TV and movies easy to hear in the home setting, despite the noise of his 3 brothers. Perhaps someday he will prefer captions. It will be completely up to him. The main point is for him to follow the conversations completely and comprehend the content. I guess the reality is that he shouldn't watch too much TV anyway, LOL, but hey, he loves Spongebob.

An angel took my hand, said you don't have to hurry
You got all the time in the world, don't worry
Don't you wish it was true
Lord, Don't you wish it was true

But if tomorrow everybody was your friend
Anyone could take you in
No matter what or where you've been

He said the worlds gonna change and it's starting today
There'll be no more armies, no more hate
Don't you wish it was true
Don't you wish it was true

I really love this John Fogerty song. How does this relate, you might wonder, to our website. Um, let's see... well, my dh and I attended a concert of his in December. You'd have thunk that because everyone was sort of, oh, older... that I didn't need to bring my earplugs. BIG mistake. Perhaps he mistook the acoustics of the new lovely amphitheater we were in. Or not. But it was deafening. No, really. I was greatly worried, and I think I may have lost 5 years of good hearing off the end of my days. Or 10, as things have not gone well for older adults in my family and hearing. Now, that may or may not be related to my boys' hearing loss but take this as a warning and ALWAYS take earplugs. My ears rung for hours. I ran to the computer and researched antioxidants and vitamins recommended for short term noise exposure. I gulped them down. Only time will tell how my little hair cells will fare. But I do recommend the new Fogerty album, despite the db used at his concerts.

And all the little children who live happily
There'll be singing and laughter, sweet harmony
Don't you wish it was true
Lord, Don't you wish it was true

But if tomorrow
Everybody under the sun was happy just living as one
No borders or battles to be won

But if tomorrow
Everybody was your friend
Happiness would never end
Lord, don't you wish it was true

Alright!

But if tomorrow
Everybody under the sun was happy just to live as one
No borders or battles to be won
But if tomorrow
Everybody was your friend
Happiness would never end
Lord, don't you wish it was true

Lord, don't you wish it was true

Alright!

Some of my best friends in life have been very "different" from me religiously and politically. In fact, they seem to rally around me in my hardest times. I think it is apparent that these things don't have to get in the way of caring about others. I am so thankful for those friends right now. I don't want to waste time and energy on things that don't matter... the education and upbringing of my children and care of my whole family is the first priority. Secondarily, I would like to help other parents be able to offer the opportunity of hearing to their deaf children. To that end, I continue maintaining the website and recording my kids on video, etc.

This song is a great one; take a listen some time if you have a chance.

Parents are the experts (or, in other words, we don't need lectures from deaf militants)

kwilinski@mac.com — 2008-02-19T13:14:36-05:00

Parents are the experts. Yes, they are!

For many years I served as an La Leche League Leader, and one of the most important things we stated at the beginning of breastfeeding support group meetings was that "moms know their babies best." I truly believe that. No one is as invested, no one loves their child more, and no one is more capable of seeing the big picture as well as the tiny hints which exists regarding what is going on... whether it is when their child is ill, or when it comes to their emotional state, etc.

This is absolutely the case with hearing parents of deaf children. For years, there were the stories of parents being told that their child was a boy (and therefore a bit slower to speak), or was a late bloomer, or was the baby of the family, or autistic, or other miscellaneous crap until finally, ta-da, low and behold, testing finally showed that mom or dad or grandma was right. Said child was deaf. Some were told to send their kids away. Some were informed that they should learn another language and use it. Some were told that they should assume the mantle of a parent of a disabled child and milk the system for every penny. Make your life revolve around this special child.

Now, with hearing parents who want their child to be able to be hearing, who is the expert about that? Yes, hearing parents. My kids are fortunate enough to take advantage of the advanced technology available today. They hear with their cochlear implants. And so, we parents continue to be the experts because we realized that the best chance we had of communicating with our child in a meaningful way would be to implant them and take FULL advantage of that rather than waste time on other issues.

*topic changes somewhat*

We had a bomb dropped on our family recently when a relative was diagnosed with a rare and aggressive cancer. Thank GOD we are not dealing with IEPs, TODs, FMs, sign language classes, interpreters, frequent therapy sessions, and so on. Granted, some implanted kids have those; mine do not. Oliver hasn't even had an AV session since this all came about 3 weeks ago... but I'm not worried. He is probably age appropriate in both expressive and receptive language currently. As a result, our family can put deafness on the backburner and deal with more important issues at hand. One of our kids was struggling in school (not one of the implanted kids) and we also needed to help him get up to speed. He is equally important to us, and we want him to be fully aware of that.

For a few months, I was reading the blogs on deafread.com. How annoying. It's a bitter pill to know that there are still deaf adults so opposed to what we are doing and so vehemently willing to say awful things about us or even worse. I've seen personal attacks, and even threats. I've seen people act like deafness is some incredible gift that we are snatching away from our kids by implanting them. I'm tired of the lecturing on various websites with titles such as "To the hearing parents of deaf babies." There are only a couple of sites even worth visiting as a parent; apparently most deaf people who are not angry at us about cochlear implants and speech are too busy with the rest of their life to get mired in that kind of blogging. There is no way to convince them that CIs work; their minds are made up. Don't confuse them with science or examples of hundreds of successful kids.

In our family, we don't think a barrier to communication with loved ones is a wonderful thing. Nor have we embraced cancer as a fabulous way to learn about life. Sure, our loved one will learn things as she travels this road. But embrace it? A parent of young children will never embrace something which could remove them from their small children, permanently; we will never embrace anything that separates us from our kids communication-wise. We spent money up front so that our kids don't have to spend society's dollar down the road. We teach a respect for others in our family; we try not to use more than we give back to people or the environment.

In the next few months, our lives will be profoundly changed by what happens to our loved one as she fights cancer. I may not have a chance to update the news as much... but know this-- our lives proceed very much like any other family, and deafness is no obstacle to communication in our household. And no, duh, I'm not equating cancer with deafness, just in case you are a blogger about to jump up on your high horse about that!

NAD tells us parents what to do

kwilinski@mac.com — 2008-02-02T18:48:32-05:00

Fortunately, we're not listening (or, we're not heeding). We have already seen the advantages of listening and speaking. Here is a blurb from their statement:

"The NAD reiterates its position that acquisition of language from birth is a human right for every person, and that deaf infants and children should be given the opportunity to acquire and develop proficiency in American Sign Language (ASL) as early as possible."

To see the rest, go to nad.org.

Undoubtedly , language acquisition is essential for every human. However, it is doubtful that a child of hearing parents will become proficient in sign language (and therefore be able to think in complex ways) if the parents are not already fluent in sign language prior to their birth. Could I teach and expect my child to converse in Russian? And that is a spoken language. Most hearing people have no experience in visual language, besides the fact that it would take years to become proficient in any language. Meanwhile, the child's early developmental years would be ticking away... the sensitive period for learning a new language is birth to 12 years of age. Hearing parents of deaf infants have rarely learned ASL. They will not be fluent.

I chuckle when I read about an excited hearing parent whose child knows 20 (or 30 or 100) sign words at age 2. Do you know how many words a child typically should know at that age? And, what kind of sentences they should, developmentally, be able to formulate? It doesn't get easier, either-- the 6 year old learns 6-10 NEW words a day. Will the hearing parent be able to learn and teach that many sign language words? More than likely, they will be left behind. Eventually, the child whose primary language is ASL may not be able to communicate well with their own family.

My kids hear just fine with their cochlear implants, and so, they have learned and can speak fluently in the language of their family.

Living Dangerously (well, not really)

kwilinski@mac.com — 2008-01-30T15:03:47-05:00

We get the Costco Connections newsletter as members. (Remember, we have a big family-- Costco is a great place for us!) There was an interesting article about the new book Take the Risk: Learning to Identify, Choose and Live with Acceptable Risk by Dr. Ben Carson. I'll quote from the article:

"How risky is it to separate conjoined twins? Dr. Ben Carson, director of pediatric neurosurgery at Johns Hopkins Medical Institutions, says he doesn't think about his work in those terms. "You don't go into a field that requires cracking people's heads open or operating on something as delicate as the spinal cord unless you are comfortable with taking risks.

The surgeon realizes that in our security-obsessed culture his attitude is unique, and that's why he felt compelled to issue a wake-up call. "I've wanted to send a message to Americans that we've become a nation of yellow-bellies... What we're buying, and what everyone is selling us, is the promise of security. et the only thing we can be sure of is that someday every one of us will die."

He gives a list for dealing with important decisions.
"What is the best thing that can happen if I do this?
What is the worst thing that can happen if I do this?
What is the best thing that can happen if I don't do this?
What is the worst thing that can happen if I don't do this?"

The article concludes with the following quote:
"Being successful is simply a matter of making good choices by using our incredibly sophisticated brains," says Carson... "We all have the means to analyze risks and decide which are worth taking and which should be avoided. That's a simple but powerful prescription for life, love and success in a dangerous world."

I believe this has incredible ramifications for parents. The best thing that can happen with a cochlear implant is that a child can function as well as their hearing peers in all situations. The worst? It doesn't work, which is extremely rare. Then they will follow a different path. The best thing that can happen if one doesn't implant is that the child might function well only with other signing deaf, and might have interpreters, accomodations and TTYs to help them cope with the rest of life. Many function, but it isn't the same. The worst that can happen if a parent doesn't implant is that the child never fully grasps English and can only speak with a limited number of individuals and feels isolated from the mainstream.

Clearly, the risk is well worth it. It has the low risks of many outpatient surgeries... but with a lifetime of communication benefit.

Once in a blue moon

kwilinski@mac.com — 2008-01-26T14:07:07-05:00

Ollie and I went to the bookstore this morning, a rare time for me to just have one child with me. I needed a parenting book about preteens, and I made a beeline to the trains which are located in the kids area, near the parenting section. I heard a woman speak to her son, and knew she was deaf. She sounded just like my mother-in-law, who passed away in 2001, and who went deaf in her late teens.

She asked if Oliver had cochlear implants. Fortunately, she said it without even a hint of dismay, and so we struck up a conversation. She works at the deaf school near us, and was raised orally (and, was not apparently angry about it), then learned to sign as an adult. She enjoyed asking about the boys, and it was with reluctance that I finally left when I had to go. I felt good because I was able to use my past experience with my MIL (and speaking so that someone could lipread) and I felt that we connected. She seemed happy for Oliver. I would say that we could have become fast friends, and I even wished that I had shared my phone number with her.

It highlights the point that not all deaf adults, nay, even perhaps most of them, are not opposed to what we have done. In fact, it takes bravery and maturity to see when people have advantages that we didn't have years ago and yet, to see them as good. I think it is similar to my mother-in-law's discussions with me years ago about breastfeeding. She had not done it, didn't know how, didn't know the benefits, etc. She was a very young mother, recently deafened, and had bottlefed her boys. Yet, when she had grandchildren and read a few things about the benefits, she was wholeheartedly in support and didn't make any of those "I didn't do it and my kids turned out fine" comments.

There are militant sites which rail against cochlear implants, calling them "snake oil" and calling us parents horrible names. Fortunately, I know that they work well and it doesn't influence my ability to raise my boys. But there are kids whose parents are in the throes of having only just discovered that their child is deaf, and are hoping that the CI will work for their child. When they read these blogs, they may not know that those minority voices are telling tales. Cochlear implants work very well in children. The surgical risks are very low. They do not hurt. While some kids feel like they are made fun of, what kid doesn't? I would imagine that if it wasn't the CI, it would be the deaf accent, or the (in my case as a kid) funny clothes or glasses. No one escapes, it seems, being a kid. But now, our kids can at least speak in the language of their family and neighbors.

Updates on progress...

Oliver and I can now have conversations in the car in which I can determine that he is not only hearing, but understanding me. I was driving home from dropping his brother (age 13) off at a friend's house, and he was getting fussy. He likes to have his brothers in the car, and is used to them entertaining him. I told him we were going home, and that we'd see Elliot and daddy, and eat dinner. "EAT?" he squealed. He loves to eat. He also said "Eh-ee-uh eat um ums?" He always wants to know what Elliot is doing. I talked about it, asking if he wanted to eat. "DA," he said (which is his "ya.") He answered a few other questions, but basically the conversation got us home without so much difficulty. We talked about the scenery, and he knew what we had to look forward to. This was all while I was driving and he was behind me in a carseat.

Just another example from our rather ordinary lives.

Take this Poll

kwilinski@mac.com — 2008-01-18T15:04:53-05:00

http://www.misterpoll.com/polls/320907
Here is a poll for parents of kids with cochlear implants. If your child is a candidate, you may be interested in reading the results! Keep checking back to see what other parents have to say.

Safety First

kwilinski@mac.com — 2008-01-10T14:34:45-05:00

Already, Oliver has taken advantage of the safety of hearing. You'd think this would come later! Of course, Elliot uses it all the time-- he routinely crosses the street and plays in the neighborhood, on the alley, etc. All the boys do in our neighborhood, and he freely roams about. Now with bilaterals, I know we are in a much better situation for that. He comes straight home and knows to be more careful if one side is out of batteries. There are multiple benefits to hearing in a hearing world, but this is just one of them.

We have baby gates all over the house, but so far we have not used the ones which prevent him from getting to the area to go UPstairs, only the ones that are drilled in at the top of the stairs. He would only sit on the bottom step, usually. Any time at a playground he had been unsuccessful climbing stairs because he tries to scoot up them-- feet first (because he scoots rather than crawls due to vestibular problems). Doesn't work! Last week at a playland he figured out that head first is better. The next day, I heard his little voice saying "uh, uh, uh." After about 10 of these I ran like lightning from the kitchen to find him 3/4 of the way up the flight of stairs. Ours are wood, with wood floor at the bottom, so I was glad to have discovered his first foray into height! Thankfully he was talking his way up the stairs, which alerted me to his antics. We always say "up the stairs, up, up, up" or something of that sort as we climb the stairs.

He laughed and laughed when he saw me-- he knew it was quite an accomplishment! So, verbal language saved the day, and all is well. The gates go up around the base of the stairs now, and we practice climbing on safer stuff.

New Year gifts

kwilinski@mac.com — 2008-01-02T14:32:01-05:00

It's been almost like Christmas in my email! As the New Year came in, so did several thank you notes from parents. It was gratifying and reaffirming. How did they know that I SO needed this right now? Periodically I receive emails from parents and it is always uplifting, but to get 3 in two days. Whew. Here's a bit of one of them (with permission from the author):

"I just wanted to send you a little Thank You and let you know that I really appreciate all that you did for our family this past year. I hardly know you and yet you have probably made a bigger difference in our lives than anyone we have ever known. Seriously. I really appreciate all of the time you have spent with me by e-mail and by phone helping me through all of the tough issues that come with having a child with unexpected profound hearing loss. **** has made such great strides in the past 8 weeks since activation."

I tell you, there is nothing better than to hear those words. Truly. This IS my occupation right now-- helping my kids and others. In my "past life" I was an advocate and counselor as a La Leche League Leader, and loved helping mothers and babies bond in the process of breastfeeding. I still love it; I sat for the exam when Elliot was a baby to become a Board Certified Lactation Consultant. But over the years, what has overtaken my time is the cuase of helping deaf children learn to listen and speak. Everyone needs a cause. :-P As a stay-at-home mom, perhaps I need these causes even more because they help me to feel like I'm contributing. Even though I know parenting and homeschooling in a big job, I like to be in the thick of the causes which I enjoy. It's an outlet. My sister jokes about my "medical degree" which has come about from curiousity and reading a lot over the years. I'm sure there are huge gaps, but I do have a few little areas of knowledge. Recently I was also asked to be involved in an organization which will lobby for the rights of parents in Georgia to choose how to school their children-- at home, in private school, charter schools, etc. I look forward to helping others make these choices freely.

Coincidentally, one of the people who emailed me (innocently) decided that they wanted to post about the boys' website on deafread.com. Gulp. Been there, done that! Last spring, the posting of Oliver's video to deafread was an unfortunate and painful eye awakening experience about what is still being said and done in the militant factions of Deaf Culture, because after an anonymous person posted it we had all sorts of crazy emails and comments, and had to change the youtube videos so that we could approve comments before they show up. However, so far so good, this time-- a couple of positive comments have arrived and no hate mail. Yet. :-)

Our 13 year old sings in Georgia Young Singers of Kennesaw State University. What a pleasure to hear him sing!

We had so many activities and family visitors in the last few weeks that I have not updated on Ollie's progress. However, much progress is still happening. As a typical toddler, he is learning words at a fast rate. I could tell him (with his back turned) to give a cracker to Elliot and he can do it. He can be instructed to go get his shoe, shut the door, wipe his face with a washcloth, etc. Most likely his AVT will soon be asking us to work on instructions that have several steps, and this will increase auditory memory. An example would be to "go get your sock and put it on your foot" or pick up the ball and put it in the basket." Our old AVT used to have Elliot learn a sequence of items... there might be 7 items in front of him and she would ask for three, in a list. He had to recall the three that were asked for.

How do we know that this works, and brings about a normal auditory memory? After all, many deaf children typically had problems with sequential memory (and this is why therapists work on it). Today, in Elliot's 1st grade curriculum we practice "dictation." It is a great way to practice, and we did it with my oldest son as well. He is very good at memorizing, too. Elliot can hear a long sentence (8-10 words) and then write it from memory. The trick is that he knows I will not repeat it, and he needs to repeat the entire sentence and THEN write it. So he has to work on his spelling, capitalization and handwriting during the entire time that he is recalling the order of words. He does very well at it. We also practice a bit of recitation, and will do more of that in the future.

Some of the cute things Ollie did over the holidays... called all decorations "tees" (trees). Yes, every decorated wreath or lighted display became a tree. Except "anta," which of course is Santa. He thoroughly enjoyed opening gifts this year and especially his OWN TREE from Children's Healthcare of Atlanta. He was the recipient of his own tree (fully decorated) and it came with a tricycle, cars, a drum set, a teddy bear, a gumball machine, and several other little goodies. Elliot was, of course, equally or more excited than Oliver. Our 10 year old got the Rubix cube. Fun was had by all.

Love and kisses

kwilinski@mac.com — 2007-11-03T09:23:02-04:00

Last night, after we had dinner, Kevin took Ollie out of the restaurant. He had reached the "throwing food" time of the meal, and was needing to leave the table. They went outside while I paid the bill. Oliver has, like some toddlers his age, a desire to whack those that he loves, and he took a whack at daddy while being carried. Daddy gave him a frown and sad look, and said "ouch, that hurt daddy!" Oliver, imitating what he has seen in the past, hugged daddy and said "I sowwy!" I was thrilled when he reported the story!

This morning, Alex and Elliot were playing with Oliver on the floor. Alex said "tell Alex: I love Alex." To our amazement, he repeated it: "I yu Ah-eh."

Obviously his hearing is much improved since the map, and he's really taking off, despite having a bad cold this week and lots of grumpies!

What is ESRT

kwilinski@mac.com — 2007-11-01T11:18:41-04:00

I thought I'd add to what I wrote earlier by explaining what ESRT is, and why it is important. Here is what an audiology site says about it:

Electrically Evoked Stapedius Reflex Threshold (ESRT):

A stapedius reflex involves contraction of a tiny muscle in the middle ear in response to loud sounds. In the normal hearing ear, the reflex is elicited bilaterally in response to acoustic stimulation in either ear. The reflex can be measured in either the ipsilateral or contralateral ear using a standard tympanometer. In cochlear implant patients, a stapedius reflex can be measured in the contralateral (non-implanted) ear in response to electrical stimulation through the implant. An Electrically Evoked Stapedius Reflex Threshold (ESRT) is defined as the lowest level of electrical stimulation that elicits a measurable response. Measurement of the ESRT requires passive cooperation, meaning that the patient should remain relatively still and quiet during each recording. Excessive swallowing, talking, or head movements could disrupt the measurement. To record an ESRT, the patient must exhibit a healthy middle ear status. Fluid in the middle ear or dysfunction of the eardrum or middle ear ossicles can prevent measurement of the ESRT. In some cases, a patient with normal middle ear function may not exhibit a measurable reflex response.

The ESRT is measured using a standard tympanometer, cochlear implant software, and the patient’s cochlear implant equipment. A soft recording probe is placed in the ear contralateral to the cochlear implant. Tympanometry is performed to confirm normal middle ear status. A good seal of the recording probe and peak compliance of the middle ear should also be confirmed prior to recording an ESRT. The tympanometer is set for measurement of reflex decay, providing a longer recording window. Electrical stimulation is presented through the cochlear implant via interactive software. Stimulation is gradually increased until a sufficient deflection is observed in the reflex decay window, and a standard bracketing procedure is used to determine the stapedius reflex threshold.

ESRT measurements are performed using the same software platform and electrical stimulus utilized for fitting the cochlear implant.10 Thus, stimulus parameters, including pulse duration and repetition rate, can be identical to those used to obtain behavioral judgments for psychophysical levels.1 This allows a direct comparison between ESRT and behavioral measurements, making the ESRT data potentially more predictive for purposes of fitting the cochlear implant. Studies have been conducted to determine the correlation between ESRTs and behavioral measures of THR and MCL values. A positive correlation between two values is represented by a correlation coefficient value between 0.0 and 1.0. A coefficient value of 0.0 would represent a random relationship, and a perfect correlation would be represented by a coefficient of 1.0.

Measurement of the ESRT can be performed both intraoperatively and postoperatively. Studies have shown that postoperative ESRT results are more closely correlated to behaviorally measured MCL values. The overall correlation between postoperative ESRT and MCL is extremely high, indicating that ESRTs are highly predictive of MCL values. Stephan and Welzl-Müller reported a correlation coefficient of 0.92.1 Similarly, Hodges et al. found a correlation of 0.91.10 In most cases, the behavioral MCL is recorded at levels exceeding the ESRT.1 A number of investigators have confirmed that the ESRT can be measured with no discomfort to the patient.1, 5, 10, Stephan and Welzl-Müller concluded that measurement of ESRTs during the fitting process can help avoid overstimulation via the cochlear implant, which is of particular importance when fitting children.1

The ESRT pattern across electrodes is similar to the pattern observed in behaviorally measured MCL values. Thus, individuals with flat MCL responses also demonstrate flat ESRT responses. Likewise, an irregularly shaped MCL response will be replicated by the ESRT response. ESRT data for the MED-EL COMBI 40 and COMBI 40+ cochlear implant systems reveal no significant variance in the ESRT/MCL based on location of the electrode stimulated. This finding is significant in relation to the loudness balancing between MCL values across electrodes.1

Collection of ESRT data on all stimulating electrodes can be completed in less than one hour in most cases.10 Based on findings that patterns for ESRT and behavioral MCL responses are similar across the array,1 it may not be necessary to record ESRT data for every stimulating electrode. For young children, recordings can be performed on a sampling of basal, medial, and apical electrodes. In this way, ESRT measurements could likely be completed on a total of 3-5 electrodes in approximately 15 minutes. For all other electrodes that utilize the same pulse duration, the ESRT-derived MCL value can be interpolated based on the electrodes measured. The use of cartoon videos or the child’s natural sleep schedule has been found successful for measuring ESRTs with less cooperative and very young children.10 Hodges et al. concluded that the ESRT is ''an accurate and rapid method of estimating maximum comfortable loudness levels, which may be useful in the initial programming of young implant recipients.''10

Researchers have compared speech perception results between maps with ESRT-based MCL values and maps based on behavioral measurements of MCL. Spivak et al. showed that 5 of 7 subjects performed either better with the ESRT map or equally well with both maps. This study also found that 4 of 7 subjects preferred the sound quality of the ESRT map when compared with conventionally determined maps.5 Other researchers have reported similar findings.1, 10

Hodges et al. found that the majority of adult subjects with the Nucleus multichannel cochlear implant system prefer a map set using ESRTs over a map set behaviorally, ''generally describing the sound as sharper and clearer.''10 Spivak et al. concluded that ESRTs ''may be an adequate substitute for comfort levels when programming the implant for patients who are unable to make reliable psychophysical judgments.''5 Finally, because the ESRT has been shown to be a more stable measurement over time than behavioral MCL values, it has been speculated that the ESRT may be ''a more reliable and consistent measure on which to base the map.''

from:
http://www.speechpathology.com/articles/article_detail.asp?article_id=44

Amazing things

kwilinski@mac.com — 2007-11-01T11:00:34-04:00

We had another mapping yesterday. I spent about 3 hours on the road, and we were at the audiologist for about 5 hours (that includes a lunch break at the hospital cafeteria, fortunately) but it was VERY worth it. It is the 6th anniversary of Elliot's first activation, and it is amazing to think how far he has come. We tweaked his maps, especially his new side, which is only a little over a year old. He had been complaining that it was "too soft."

But the most difference occurred in Oliver's map. Again, it was turned up considerably because we did ESRT on 6 or 7 electrodes while he napped! Incredibly, they showed that his MCL (maximum comfort level) was much higher than we had thought. I am a big believer in ESRT now, and I have been amazed at his progress in expressive language in less than 24 hours. Clearly he has had the awareness of sound, but has been struggling in some frequencies to hear WELL. Now that he's hearing better, he can copy us. I sat outside with him last night as we waited for trick or treat time, and I touched a bush with sharp leaves. I said "ouch" and he said "oush!" Previously he has said "aw" for "guitar," but last night it became a two syllable sound. He made his first "k" sound when we told him to give daddy a kiss. "up" has gone from "uh" to "up." Kitty cat was said for the first time when I read a book this morning-- "tat tat." Amazing.

How can this much change take place so rapidly? All I can say is that he is scaffolding rapidly based on the language awareness that he already had, and now with improved hearing he is taking off. Obviously mapping still takes time, but now I believe we are set for some time. It was worth the drive!

We await even greater things.

Governor Perdue at AVC Gala

kwilinski@mac.com — 2007-10-27T14:28:41-04:00

We were honored last night to have the Governor of Georgia, The Honorable Sonny Perdue and his wife Mary as our guests last night at the Auditory Verbal Center's 30th Anniversary gala! Yes, they attended as our guests! What a privilege! It was a wonderful evening and full of the appreciation and thankfulness that we all share regarding the work at the AVC. We enjoyed chatting with our therapist, surgeon, audiologist and friends. We listened to graduates of AVC tell their story and listened to great music! We also enjoyed meeting Dewey and Cookie Smith from Kiwanis International, which has been very generous towards the AVC; Cookie has made the AVC her platform, and we know this has helped a lot of kids. We appreciated that the governor and his wife both addressed the attendees and had relevant and interesting things to say to the crowd. A fun evening was had by all! When we get some pictures, we'll post them here, as well. About 200 people were in attendance, and it was a great testament to the accomplishments of both the AVC and the kids who have graduated from the program.

"I see..."

kwilinski@mac.com — 2007-10-14T12:01:06-04:00

Oliver sees things. He hears them, too, but when he does he says "I see dat!" The "see" is done with the tongue protruding, but it's pretty obvious what he's saying, even to strangers. He still loves the outside, and will say "I see ow-sigh" and "I see har (car)." When asked, he can point to a variety of body parts and things. Some things he knows: toes, hair, mouth, grass, bushes, trees, etc. He learned that he had Elmo on his shirt one day, and when asked, out of the blue, "Where's Elmo," he would point to his shirt!

Oliver's hearing much better after an audiology visit a week and a half ago. I had long suspected that he was not turned up loud enough. eSRT testing confirmed this on a few electrodes (not easy to do with a wiggly baby!) and we were able to extrapolate and turn the entire map up. We are seeing a sound and language explosion, now, expressively. I am so glad that he's hearing better! Note to parents: go with your gut. If you are concerned, say something. I had to be firm to get what Oliver needed, and this has been the case with several friends of mine. A friend of mine saw a 20% increase in her daughter's hearing in the soundbooth when she went out of town for a second opinion. Don't delay! Another mom on CI circle was told that her child was just not an "auditory" child, and should just learn sign. Turns out, they got a new audiologist and, lo and behold, their child hears very well now. Professionals can be very busy, see many people, and sometimes even they will admit that another person can add to the equation and help coordinate the child's mapping process. Different audiologists have different philosophies and styles, and you need to find one that suits your family.

Once maps are stable and tweaked, they need little change in the following years. Elliot has needed very few mappings on his "old" ear. His new ear is going for another tweaking in a few weeks, because both he and I suspect it is needing to be louder. But probaby, after that, he's had this ear for over a year and will need only twice yearly mapping sessions, if that.

Reading, well, sort of

kwilinski@mac.com — 2007-09-29T11:15:33-04:00

Oliver and I have read a book about Elmo and it includes a page in which he is holding an umbrella and rain is falling. This morning, while I was in getting dressed, I heard him say "all wet (pronounced "ah eh)." I looked over and Oliver was pointing to Elmo on the page where he was getting all wet! It was pretty cute.

Oliver's favorite thing to do is go "ou sigh." He asks to go outside all the time... it's the word of the week. He wants to look out windows, knock on doors and generally figure out ways to convince us to take him outside. Fortunately the weather is starting to cool off so that it's more bearable out in the yard!

Elliot is reading, too. He has not only developed great reading skills but has begun choosing, on his own, books off the shelf to read to himself while mommy is busy. He is coming right along... faster than either of the older boys did at this age, probably due to the excellent phonics program we are using with k12 (k12.com), the curriculum we use for homeschooling. I have videotaped him doing a lesson and plan to add it to the website, whenever I have a spare hour... not sure when that will be! This year we are using the same curriculum in the Georgia Virtual Academy, which is like the Colorado Virtual Academy we used when we lived out west. It is free-- a "public" homeschool. Elliot is flying through his 1st grade materials.

All Wet!

kwilinski@mac.com — 2007-09-08T15:59:58-04:00

We have used the phrase "all wet" quite a bit around here, but I wasn't sure if Ollie knew it. He does. I was watering the plants on the back porch, when the fern ran over and water dribbled down through the patio table and onto the stones. Oliver, who was scooting around near the table, scooted right up to the puddle and declared: "ah yeh." He repeated it several times, and I reinforced it. He doesn't have all the consonants, but clearly understands us all when we say that things are "all wet." This is one of those phrases we make sure to use because he needs to know all the washing and bathing terms even though he won't hear the discussions while IN the tub.

Ollie's words plus some fun discussion

kwilinski@mac.com — 2007-09-05T13:37:57-04:00

Elliot was working on phonics today. We have homeschooled all of our boys for a portion of elementary; he doesn't homeschool specifically because of his hearing loss. He does do well in the one on one, but he will probably do fine in the mainstream in a few years, when I'm ready to "let go." He had to finish some sentences with a word that was missing. He was selecting from a "bank" of 4 words. He read "I will ____ the fun." I went to water the flowers on the front porch while he worked. He came in to me and asked, "Do you think "I will fill the fun" makes any sense? I said "no, you'd better look again at the other words." He replied, "yeah, that's what I thought, but I wondered if it was an expression. Haha! I love that he knows what "expressions" are, and that kids are still learning them.

Oliver's words and phrases from the last couple of days:
expressive:
outside
chicken
Ha ha (the clown sound in the AV Learning to Listen list)

receptive:
shut the door
open the door
bite
food
grapes
cheese

Test Result (or, the proof is in the pudding)!

kwilinski@mac.com — 2007-08-30T14:36:34-04:00

It's always a relief to see test results after implantation, no matter how successful previous experience has been. Parents worry-- that's our job! Oliver is 15 months old, and his test results are in: 16 months receptive language and 12 months expressive. The expressive is gaining ground quickly but is, of course, delayed because of the lack of babbling before implantation and the cycle of input and internal modification when he hears the results. Now, he's babbling up a storm, but it will take a few more months to catch up. As he makes sounds and practices movement with his mouth, he hears the changes.

Anyway, this is another clear example of the fact that he UNDERSTANDS us at a rate commensurate with hearing peers! My prediction is that he will be caught up expressively at 18 months, which would be exactly 1 year after his first device was implanted. I can't wait to see.

So much for the theory that Elliot was a "star performer." We were told this once by Harlan Lane. What a joke! Oliver is a different child who even had a different surgeon. The only thing which remained the same is that he has the same parents and was implanted early. It supports the growing evidence that children who are implanted early are at a great advantage. Of course, we think Elliot is a star, but that's because we're his parents. He also has the advantage of health, a home, food and clothing, etc., but he is a normal boy who is lucky enough to live in an age of great scientific discovery.

We have a phrase!

kwilinski@mac.com — 2007-08-28T21:09:53-04:00

We actually have two phrases: "Hi, Dada" meaning "Hi, Daddy" and "hi, dada" meaning "Hi, doggie!" Yes, to the untrained it sounds exactly alike. :-P But context is everything, and he's saying that in two distinctly different situations!

More words

kwilinski@mac.com — 2007-08-25T20:17:58-04:00

Oliver has clearly gained several more words. Sometimes it's hard to remember them all! It's sweet to hear his voice call me on the baby monitor, now, when he awakens from a nap. No more screaming (at least not at that moment)-- we hear "momma, momma!"

Ollie's newest sound is "sh." He clearly hears and understands it; he is trying to make the sound but right now he simply breathes hard through his nose. It actually makes a close approximation! He started this all on his own, after hearing me talk about shoes and showers every day. This morning, as I was entering the bathroom, he made the sound on his own, obviously trying to talk about mommy taking a shower!

Oliver's 13 year old brother is thrilled that Oliver can show where his nose is; therefore, he gets practice in that every single day. It never fails to amuse, because he projects his finger up his nose as part of the trick. Ah, the joy of boys!

New words (receptive): shoes, shower, banana, tummy, nose, all done (and, all gone), water, wipe wipe, babas (word for nursing)

Expressive: Elliot, pronounced eh eeh uh,
pacie, pronounced aah ee
daddy, pronounced dada

Oliver's vocabulary

kwilinski@mac.com — 2007-08-11T18:51:41-04:00

Just shy of 15 months, here are the words I have noted which Oliver knows. There may be a few others that I can't recall at the moment:

Receptive:
yum-yum
mommy
daddy
Nick
Alex
Elliot
Precious (doggie)
more
uh oh
bite
kiss
peek a boo
up
knock knock
drink
car
truck
airplane
outside
bath
wash, wash
wipe, wipe
all clean
all done/ finished (hold palms up to indicate gesture!)
pacie (pacifier)
open
Where is it?
no
Oliver/ Ollie
ice cream
hot

Word he can say:

mah (more)
eh eh (uh oh)
ah uh (all done)
mom (mommy)
ha (hot)
eye- eee (ice cream)
um-um (yum yum)

Belated News

kwilinski@mac.com — 2007-08-11T18:16:39-04:00

We've been so busy with the boys that we failed to update regarding his 2nd device implantation on May 2nd, 2007. He was activated a few weeks later. He hears in stereo, now!

Video Posted of Oliver's Recent AV Session

kwilinski@mac.com — 2007-01-15T14:00:43-05:00

This video gives a good example of AV activities that can be used with a very young child.

See the AV Therapy Session Video

Oliver's Activation Video on YouTube!

kwilinski@mac.com — 2007-01-05T09:41:41-05:00

Oliver Receives his 1st Cochlear Implant

kwilinski@mac.com — 2006-08-11T22:01:13-04:00

Elliot's bilateral implant finally approved!

kwilinski@mac.com — 2006-07-06T09:41:17-04:00

We finally won our fight with our insurance company! We are in an HMO under Blue Cross/Blue Shield of Georgia and have been fighting to get approval for a second implant for Elliot for over a year. We were notified today that the Georgia state insurance commission overturned BC/BS. We had lot's of help from the Let Them Hear Foundation advocacy program. The free legal support LTH provided was instrumental in our getting this approved. Elliot's surgery is scheduled for August 12-- our 17th wedding anniversary!