Deaf Child Speech With Cochlear Implants - Update

Drew's Mom is presenting to a class of audiology students this week, to introduce them to the world of cochlear implants and speech therapy from a parent's perspective.  She did this last year to rave reviews, and was asked back again.

To prepare, we made a new video of Drew so these students can see his progress year over year; from a little baby responding to his name, to the talkative little boy we have today.  While Drew did a fine job, he was in rare form.

Watch this latest video to get a sense of Drew's personality and sense of humor - including his wardrobe of choice: Drew Singing, Rhyming and Laughing With Cochlear Implants"

Link to last year's video: "Cochlear Implant Speech Therapy"

Drew at 1 1/2: "Cochlear Implant Child Speaks 10 Months Post-Activation"

What Does the "Wrong" Ear Sound Like?

On rare occasions, Drew's Dad or I will accidentally put the "wrong" ear on Drew. We'll put his right on his left or vice versa. Each of Drew's processors is specifically programmed for an individual ear. For some CI users, their programs on each ear are nearly identical, so mixing them up won't create too many problems. Sure, hearing won't be maximized, but there isn't any tell tale sign that there is an issue.

That's not the case for Drew. His maps on his two ears are quite different. His right ear requires so much power that we actually had to go to a wider pulse width than his left ear. As a result, mixing up his right ear and putting it on his left causes him pain. It is "too loud", as he has told us in the past. And we always know when we've put the right ear on his left because he cries out in pain.

Now that Drew is a bit older, we were able to ask him after this most recent mix up what putting on the wrong ear actually sounded like. Here is Drew's response:

Wow!

I just looked up at that little ticker that tracks the "age" of Drew's hearing and it says 2 years 6 months. Wow! My little guy has been hearing for 2 1/2 years. Two and a half fabulous years of hearing for a little guy that is profoundly deaf.

I don't really remember if I had an exact idea of how this whole "cochlear implant thing" would turn out. I certainly knew that Drew would be able to hear something if we gave him cochlear implants. I certainly knew that Drew would be able to learn to listen over time. I certainly knew that when we chose to implant him we were giving him the best opportunity to learn to talk.

But I don't think, even in my most wild of dreams about Drew's future, that I even envisioned the past 2 1/2 years playing out the way that they have. A little boy that loves his ears. A little boy that communicates all of his needs verbally (and Drew has a lot of needs!). A little boy that tells "Knock, Knock" jokes with his sister. A little boy that sings Christmas Carols with his grandparents. A little boy that hears the church bells ring, the roar of a lion, the "I love you" whispers from me.

I am just so, so thankful. So thankful that Drew's Dad and I made the choices that we did when we learned of Drew's deafness. So thankful for a smart, hardworking little boy that has spent more time in therapy than on a playground. So thankful for the team of professionals that have guided us. So thankful for the technology that has given Drew not only the gift of hearing, but the gift of a lifetime of endless opportunities.

Two and a half years. Wow!

Having Trouble Keeping CI's on Your Little Girl?

When Drew was first diagnosed with hearing loss, I spent all of my time researching cochlear implants, talking to professionals, at doctors appointments, with one goal in mind: getting Drew implanted at as early of an age as I could. What I didn't think about was the post-activation time. Sure, I knew he would need multiple mappings, and that the implants would be slowly activated to the hearing we have established for him today and that we would spend a lot of time in therapy. But I didn't consider how difficult just keeping his cochlear implants on his head would be!

To celebrate Drew's activation, we had lunch with family at Champp's. By the end of the lunch, I was so frustrated with keeping the coils and processors on Drew's ears. It was so challenging with a little baby that was constantly wiggling and moving around. I would get one ear back on, just to have Drew move and knock the other ear off. I left that lunch feeling so defeated! I had worked so hard to get Drew implanted so early, but it wasn't going to work if I couldn't keep the implants on his head!

So, as I drove home that day, feeling so sad and defeated, with Drew safely sitting in his car seat without any hearing, I remembered reading about how other family's on CI Circle had successfully used Hanna Andersson pilot caps to keep the equipment on their child's head. Problem solved! We used those caps for about a year, until Drew was fully walking and had much more control of his head, causing the implants to be knocked off less often.

I'm always interested in how other families keep the equipment on their child's ears, as it truly is a huge struggle. Lily's Mom showed how Lily is wearing her CI's these days. Check out these headbands! They are so cute, and so effective at keeping CI's on little ears. For anyone with a little girl, I think this would be great!

Please Talk To Me

Last week I took Drew with me to Lowe's to pick up some home & garden equipment at fabulously low prices (can you tell "Pitchmen" is my favorite show this summer)?

On the way there, the boy just wouldn't shut his mouth. Perhaps we should start calling him "Mouth". I don't remember what he was talking about, but he likes to repeat things.

"Dad, I have my ball. It's a golf ball."

"That's great buddy, you have a golf ball."

"Dad, I have a ball. A golf ball."

"I see that Drew, you have a golf ball"

"I have my golf ball."

Now I'm always happy deep down inside whenever he says anything at all, but I wasn't feeling that deep down warm and fuzzy feeling at that point. I was beginning to tune him out.

A few minutes later, I start to realize that he's talking to me. Not about the golf ball. So once I tune in I realize he's a little upset. What's he saying?

"Daddy, PLEASE talk to me! Talk to me DaDa!"

It was wonderful. I might have had a tear. It was another one of those moments that make some of the rough times worth it - a moment where you remember just how special it is that he is able to continually improve his speaking ability, and a time to be so thankful that he can talk and likes to be talked to. Nothing can diminish that feeling!

Except...

"Dad?"

"Yes, Drew?"

"I have a golf ball. It's my golf ball, Dad."

18 Months?

That's right! It has now been over 18 months since Drew's cochlear implants were activated. Time flies when you're having fun!

Drew is an amazing little boy, and we could not have scripted this 18 months any more perfectly. He has clearly mastered listening, and will indicate when ever he hears something with the cutest little, "Hear sound?"

Drew is a curious little boy, and asks questions daily like, "What's that?" (We can't wait for the "why" questions to begin.)

Drew is quite social. He will talk to just about anyone, mostly about his two loves: sports and cars. I love watching him talk to his sister, grandparents, friends. He has this cute little way of bending his knees and tilting his head when he is talking to you. It is so precious.

Drew can now clearly articulate his needs. This has made life for the tantrum-proned-boy's Mommy much, much better. When he starts in with a tantrum, I can now say, "Drew, use your words," and he will tell me exactly what he wants. (The only time the tantrum continues is when what he wants to do is not allowed).

Drew now understands the concept of "time-out". If he is doing something he is not supposed to, I will say, "Drew, do you need a timeout?," and generally he will stop the behavior. He also understands my "counting to three" and will stop, most of the time, what he is doing. When Drew does earn himself a timeout, he will sit in the chair and say, "I want down!" And, when it's all over he will say, "Sorry Ma Ma."

My favorite time of day is in the morning. Usually Drew's Sister wakes up for the day first, and will be eating breakfast by the time Drew wakes. After getting his ears on and dressed for the day, Drew always wants to find his sister. He'll say, "Morning [name]. How you?" It is so sweet.

Drew enjoys music, and really likes to dance. He can now sing several songs, relatively in key, and knows most of the words. His favorites are Twinkle, Twinkle Little Star, Baa Baa Black Sheep, Shake Out Your Hands, and Jingle Bells. I am so impressed with how he knows to sing "high" and sing "low" with his voice, and he can do so on command.

Drew's Dad and I have been fortunate enough to watch Drew grow over these past 18 months with a sincere appreciation for all he has accomplished. We celebrate each new word or milestone, as it truly is a gift. We are forever grateful for this wonderful technology.

I took some random video of Drew over this past weekend. Enjoy what our little boy can do, 18 months post activation and 2 years, 3 months old!




And, I used Overstream.net for the first time to caption the video. I have never done it before, so I am sorry if the captions are a little off.

Drew and His Sister Playing at COSI

After the holiday, we have been going a bit stir crazy at home, and the mess is still beyond annoying, so I decided to take the kids to COSI today. Despite the fact that it was incredibly busy, we had a very fun day. The Sesame Street Exhibit was awesome, and the morning was enough to wear the kids out for an excellent afternoon nap!

It is amazing to me how much Drew has grown and changed, in so many ways, since our last trip. I'm so excited that we received a membership for Christmas, so now we can go to COSI whenever we want! Enjoy the video!



Drew absolutely loved the rat basketball. He probably could have watched them make baskets all day. Every time the rats would make a basket he would say, "Made it again," or "dunked it" or "see that?" It was awesome!

As a side note, I am loving my new Flip! camera. Thanks to this Mom for recommending it! It is so easy to trim and edit videos, and make a movie. I love it!

One, Two, Three, Four, Seven

Drew is learning to count, and is doing quite well! Our primary therapist says that counting is a skill usually learned around the age of three, but we are going to start working on this now. At his most recent therapy session he was counting on every task we worked on, so he has shown a clear interest which is why she wants to go ahead and work on this skill now.

Often Drew will be playing by himself and I will over hear, "Oooone. Twoooo. Threeeeeee. Fooooour. Seven." It is hilarious, and makes me smile and laugh every time. He will count coasters, M & M's, balls, leaves. It really doesn't matter, he will count anything he can find, and he really enjoys it.

Drew continues to progress well, now talking regularly in three word phrases/sentences. He often says "I don't wan it," when referring to his dinner, or "I wanna go downstairs," telling me he wants to play with his sister. He has several phrases he uses on a regular basis, and it is becoming easier and easier to not only understand his needs, but understand his language.

We are having so much fun with this. I am forever thankful that I have learned to truly appreciate this gift. It is so fun hearing him talk, and each day we find him saying something new. I'm just so thankful that life is this normal, and that I don't take it for granted.

Happy Halloween From Drew!

We took Drew and his sister out Trick or Treating earlier tonight, and they both had a great time. Drew loved walking up to the doors holding his orange candy bag, arms outstretched and bag wide open.

After his sister knocked on the door and the bowl of candy was offered, his natural instinct took over and he tried to grab 2-3 pieces with each handful. He got away with this several times.

He'd say "Trick or Treat", and "thank you", and sometimes ask "other one?" if he wanted another piece. More than once the people handing out candy remarked "he is so good at saying that! You must have trained him!"

Yep, every day for almost all of his life. Talking about the color of the sky and how FLUFFY the white clouds look. Mentioning the dirt stains on his blue jeans and how GRIMY it looks. Investigating the red, orange and brown fall leaves and remarking how CRUNCHY they sound.

It made our day that people were so impressed with his speech. And oh - by-the-way - he had his dragon head on all night and his cochlear implants were totally invisible.

Happy Halloween to all!

Our First Cochlear Implant Ear Infection

It's been a long time coming, but Drew's first ear infection has popped up. Yesterday he was pointing to his ear saying "Ow, ear". He continued to say this in the morning, and so after a trip to the pediatrician, we found Drew has his first ear infection.

Our cochlear implant surgeon had told us before Drew's surgery that should he ever have an ear infection, to contact him immediately to head off any problems the infection could cause with Drew's implants.

It turns out that our surgeon wants to treat the infection more aggressively than the pediatrician would (for good reason). We got a higher-powered antibiotic and it was prescribed for twice as long.

Drew seems to be doing OK right now (playing with his hockey puck and watching Little Bear), but I'm going to keep my eye on him.

As a side note, I recall having multiple ear infections as a child. Much of those memories is focused on the pain and pressure of the ear infections, but I also remember how it sounded as if you were underwater, hardly able to hear.

With Drew, of course, his hearing is not affected at all by this ear infection. Rather, he only feels the pressure building up on his swollen eardrum. I just thought this was interesting since having an ear infection usually brings such a drastic loss of hearing ability...but not for our CI guy.

Picking Up Good Vibrations (With Limitations)

In this New York Times article "Picking Up Good Vibrations (With Limitations)" psychologist Teresa Cochran discusses her decision to get a cochlear implant and how it has helped her serve her patients. It's a good read, but there were also some interesting statistics:

People who use hearing aids, on average, live with hearing loss for seven years before resigning themselves, usually around age 70, to using a device, according to the Hearing Loss Association of America. “You are in a position where you’ve been struggling, and you get tired of asking people to repeat themselves,” Mr. McKenna said.

...

Today, baby boomers account for 10 million of the 31.5 million Americans with hearing loss, according to the Better Hearing Institute, a nonprofit educational organization, and many hearing experts attribute this to listening to overly loud rock music.

I hope that as cochlear implants become more common and therefore more visible, the public in general will become more comfortable with using assistive devices to help them hear. It's a shame that people would rather pretend that they can hear a conversation rather than wear a small hearing aid out of embarrassment.

First Deaf NBA Basketball Player Lance Allred Cut

I just heard on the radio that Lance Allred, the first deaf NBA basketball player was cut by the Cleveland Cavaliers. We wrote about him in March when Lance was first signed by the Cavs and then later detailing his battle with bigotry and discrimination.

Lance is currently writing a book detailing his life growing up in a polygamist sect in Utah, and how he dealt with his hearing loss. We wish him the best of luck in signing with another team, or with whatever he chooses to do next.

Bump in the Road

I always hesitate to write when what I have to say is not positive. Not because I want to provide an image that everything is always sunny in our world, but because one of the downfalls of having a public blog is not knowing who is reading. So, in large part, Drew's Dad and I have chosen to keep our more problematic situations and debates between us, instead of sharing it with the cyber world.

Having said that, we have been going through a rather rough patch with Drew's cochlear implant services. We have been so fortunate to be surrounded by such wonderful doctors, audiologists and therapists throughout the past two years. But recent transitions have not been going well, and Drew's Dad and I are now facing some difficult decisions.

We learned back in May that Drew's primary therapist was moving. Her husband accepted a job offer on the east coast. We were devastated to learn of her departure. (In fact, I don't even know if I wished her luck when she told me the news I was so upset!) Drew responded so well with her. She had this nature about her that echoed a quite confidence. She knew when to talk a lot to Drew and when to let him quietly investigate the task. She provided invaluable guidance for our family. She worked so well with Drew's audiologist, providing detailed information on how Drew was responding in therapy, and potential areas for adjustment to his MAPs. Her personality just clicked with our family, and we felt like we were not only loosing Drew's therapist, but a wonderful advocate and friend.

The search thus began for a new therapist. Our old one departed in July, and we actually missed our last appointment with her, due to Drew's bout with Roseola. There was no replacement immediately in place, so we took nearly a two month hiatus from therapy. While I was not thrilled with this, Drew enjoyed the summer months, and it made coordinating all of his therapy with the fact that his sister did not have school much easier.

Now we find ourselves working with the new therapist. While she is an extraordinarily nice woman, she is not providing the level of service we are accustom to. So, I am left questioning our situation. What should a therapy session look like? How much interaction should take place between the therapist and child? The therapist and parent? What "homework" should be given? Do you learn something new at each therapy session? The list goes on.

Part of me knows that we were very blessed to have someone as talented as our previous therapist, so I know that I can not hold anyone to her standard. But I have concerns after our appointments this month about the way the sessions are being conducted, and I certainly have not learned anything new. Maybe it will get better, but I feel so helpless right now. While Drew is doing so well, we have worked so hard to get him to this point, I don't want to lose momentum now. The difference in language between a two year old and three year old is outrageous, so this transition is not happening at a good time. In addition, Drew's Dad and I both work full time, so taking him elsewhere for services would be challenging. We will do anything we have to for Drew, but I feel like we shouldn't have to do that.

My question to you is, what are your therapy sessions like? Do you see "lesson plans"? Do you leave with a focus or homework to do for the next week? What can we do to help make this transition better? How long should I give this transition period before I change therapists? Any comments you have would be greatly appreciated.

Music For New Ears - Creating Music For Cochlear Implant Users

Mike from Music For New Ears contacted me through Drew's Facebook page today to tell us about their amazing non-profit collaboration which aims to create music especially designed for cochlear implant users.

We all know how big of a deal music appreciation is to many CI users. Imagine a group of speech and language professionals collaborating with musicians to design music created just for those with CI's!

Please take a moment of your time to visit the Music For New Ears page on Ideablob.com and click on the green VOTE button on the right. If they get the most votes, they'll win a $10,000 grant to help develop this music.

Not decided whether you want to spend 2 minutes on this? Here is the description of their idea - in their own words.

Cochlear implants are surgically implanted electronic devices that provide a sense of sound to people with profound deafness. However, many aspects of sound, including pitch and timbre, are almost entirely lost in the process, making it difficult for cochlear implant users to enjoy music.

Music For New Ears is a non-profit collaboration between composers, hearing scientists, and cochlear implant users. We identify sounds that C.I. users can hear with the most clarity and use these sounds to compose new music.

Our mission is to help cochlear implant users better enjoy music by creating music specifically for them and the unique way in which they hear.
What will you do if you win $10,000 for this idea?

1) Pay our primary composer to create full-length music compositions for cochlear implant users.

2) Recruit C.I. users to provide us with valuable input during the composition process.

3) Arrange live performances for audiences of C.I. users in Boston, MA and surrounding areas.

4) Organize a national contest for composers unaffiliated with our organization to create their own pieces of music for C.I. users, with a grand prize of $1,000.

We have everything in place and we are eager to begin working. We simply need the funds to get started.

Sound good? Now go vote - I can't wait for them to get started!

Have a question for Mike? Email him directly at michaelpeterevans@gmail.com, or post your question as a comment so we can all see the response (Mike, let us know if this is ok).

Cochlear Implant Mapping For Children

Nationwide Children's Hospital is holding a Hearing Team Support Series which discusses important topics for families of children with hearing loss. I attended the Individualized Education Plan session in July and this past week I attended the session on Cochlear Implant Mapping. The presentation was excellent, and I learned a lot of technical information regarding implant mapping, specifically for young children, that I did not know. Cochlear Implant Mapping is very technical, and even a year later, I still have a difficult time understanding it all. As parents, we play a crucial role in the mapping process, so it is important that we understand as much as possible about this technology.

The information I will provide was taught at the presentation and is correct, to the best of my understanding, and is specific to the Cochlear Brand of implants. There are slight differences between the three manufacturers, so the terminology used may vary slightly from one manufacturer to the next. If you feel that any information provided is inaccurate, please leave a comment so I can research further.

There are three parameters of sound that the audiologist is programming during the mapping session that allows the implant to translate external sound into the electrical signal that stimulates the auditory nerve, allowing for perception of sound. These three parameters include pitch, loudness and tempo.

With normal, acoustic hearing pitch is heard from 20 - 20,000 hertz (Hz). Cochlear Implant maps provide pitch across 120 - 7200 Hz, which are the primary speech frequencies. The hertz distribution is coded among the available electrodes providing electrical stimulus for the cochlear implant recipients. Individuals with cochlear implants do not hear the entire distribution of sound like a person with normal hearing. For example, the Middle C of a piano is at a pitch of 250 Hz. As you move down the piano, the hertz get lower and lower, so an individual with electrical hearing can not tell the difference in the pitch of the sound outside of the parameters of their map. Programming the pitch across the electrodes is critical for hearing all of the nuances of speech. Consider the "eeee" sound, for example. "Eeee" is not just one sound, but a collection of sound across different frequencies. In order to develop speech equivalent to hearing peers, pitch programming is essential.

The loudness, or intensity of the sound affects the voltage required to run the map. With acoustical hearing there is a loudness range of about 120 decibels (db). With electrical hearing, there is a range of roughly 40 db's. This is called the dynamic range and it is the difference between the threshold level, T-level and Comfort level, C-level. The T-level is lowest level of stimulation needed to hear. The C-level is the maximum stimulation of sound that can be comfortably tolerated. The difference in the dynamic range is no more than 40 db's for a person with a cochlear implant. For our children, patient participation is not practical, so the audiologist must find a different way to establish the T and C levels. Neural Response Telemetry is software provided by Cochlear that provides the audiologist with with the levels need for an individual to hear. There can be some minimal variability in what the computer suggests as T and C levels for the patient, so the audiologist with also use their past experience, updated information from parents, teachers and therapists and hearing tests (in the sound booth, with conditioned response when age appropriate) in order to program the processor.

I found this area of the presentation to be the most interesting. When looking at the dynamic range, this means that the map actually takes really soft sounds and increases them to the T-level, and it takes very loud sounds and decreases them to the C-level. This finally explains why Drew is so loud sometimes! He has no idea how loud his screams actually sound to me, with my natural acoustic hearing. We can roughly estimate, knowing that the goal for cochlear implant recipients is to hear at 20 db, that Drew is hearing his loud screams at what we would know 60 db's to sound like. With a dynamic range of only 40 db's (versus my range of 120 db's), Drew has no idea how loud he sounds! (I don't know why I didn't understand this prior to this course, but finally his behavior is making sense to me! As a side note, if any parents with older cochlear implant children have any suggestions on how to help Drew understand that he is actually louder than what he hears, please leave a comment.)

The final area of the programming revolves around tempo. This is referring to how fast the speech is coded. With the newest cochlear implant technology, speech can be coded between 250 - 1800 Hz. In layman's (my kind of) terms, this means how many times per second sound is coded through the electrodes in order to stimulate the auditory nerve fibers. This provides the recipient with detailed information on the timing of sound. The default is 900 Hz, which means that the processor codes sound 900 times per second. This can be tweaked for each individual, but apparently faster is not better, because if the sound is coded too fast, the recipient can have a difficult time interpreting sound. For children have little participation in the mapping process, most audiologists use the default settings.

During the time of activation, and shortly thereafter, mapping sessions are quite frequent. As a map is established, there are several ways that a parent can identify the need for a mapping session:

• Decrease in child's auditory reaction or alertness to sound
• Decrease in vocalizations and/or vocal play
• "Slushy" production of previously mastered speech sounds
• Any sign of physical discomfort, such as eye or facial twitches
• After one month of use, the child should tolerate their everyday program all day. If they require a quieter map to start the day, consult with the audiologist.
• Difficulty operating external equipment
• Irritation to the skin under the transmitting coil/magnet
• Refusal to wear sound processor all day
• Child complains of difficulty of hearing

I have found the following on-line resources to be helpful when trying to learn more, and understand, cochlear implant mapping for children:

Audiology On-line

American Speech-Language-Hearing Association

Speech Pathology

Hearing Pocket

Road Trip!

When we decided to take the kids to the beach this summer, Drew's Dad and I were worried about the long drive. What would we do to keep two kids entertained for 10+ hours of windshield time? We were worried that they would get cranky and make an already rough ride worse with crazy behavior.

I'm excited to report that they could not have been better (on the drive, at the beach is a different story)! I packed plenty of snacks and activities, and we coordinated the drive well with nap time and bed time, so the kids slept a good amount of the time. We split the trip up on the way down, and Drew and his sister enjoyed their first stay in a hotel room!

Drew and His Sister enjoying a morning cartoon.

Drew's Dad and I find that the car is an excellent language environment. There are so many things to look at and talk about while driving in a car, especially when you're driving through new areas of this beautiful country.

As we drove south through Virginia, we went through several tunnels in the Blue Ridge Mountains. Drew loved the tunnels! He would say, "Wow!" the whole time we were driving through one, and as we left the tunnel he would say, "More, tunnel...More TUNNEL!!" He loved them! And now we can add the word tunnel to his vocabulary list.

We also passed a lot of pastures while driving through Virginia. Anytime Drew saw an animal he would make his animal noises. We'd be driving and hear a "moo" or "neigh" from the back seat. Drew would even sing his little song, "Where oh where...cow?" All four of us had fun singing and looking for different things: trucks, cars, cows, horses, sheep, just to name a few. It's amazing how quickly the miles pass as you are playing fun games!

As we got into North Carolina and the sun was setting, the kids were becoming bored of games, songs and movies. We turned the movies off and told Drew and his sister that it was time for bed. They were both just sitting in their seats, settling down for the night when we heard Drew say, "Go Bucks!" It was hilarious! Clearly he was sitting in his car seat, bored, thinking, "Hmmm, I'm bored. I should say something. What should I say?" So, he busted out a "Go Bucks!" and we were all back to laughing, talking and playing games.

While Drew was watching one of his movies, we heard him sing "Twinkle, Twinkle Little Star." It was so sweet to listen to his little voice sing. He was able to say several of the words clearly and was even singing somewhat in tune. It was a wonderful moment as we realize just how special it is that he can even hear music, let alone sing along with it. I don't think Drew's Dad and I have ever smiled more on such a long car ride. It was an excellent reminder of just how far Drew's language has come in this past year. We are forever grateful for this wonderful technology!

What Does A Cochlear Implant Look Like? - Captioned Version

Last week I posted a video titled "What Does a Cochlear Implant Look Like?", which I thought would be helpful for everyone who hadn't seen one up close before.

In my rush to get it posted (it had been sitting on the camera for months), I neglected to add captions using Overstream. Elizabeth at DeafVillage.com told me she thought the video was really valuable, so I made sure to add the captions to make sure everyone could see what I am describing in the video.

Here is the link to the captioned version of What Does A Cochlear Implant Look Like?

Swimming with Cochlear Implants

Drew's Dad wrote a post in February after he found a wonderful You Tube! video showing a way to swim with a cochlear implant on. I have to tell you how excited we were to have found this, as I can not imagine Drew not being able to hear at the beach or the pool. He relies solely on oral communication, so it would be very difficult to communicate with him if he was not wearing his cochlear implants. And as Drew is all boy, we need him to hear us tell him no, stop, don't throw that, etc!

On our recent beach vacation we found a couple of modifications to the video helpful:

• Sealing: We modified the food saver technique by making two seals on the bag. We would seal the food saver bag once, then move the bag about 1/2" and seal again. This made us 100% confidant that the seals were clean and that the processor would not get any water on it.


• Increase Magnet Strength: We increased the strength of the coil magnet to help hold the bag to Drew's head a lot better. Typically Drew wears a strength "1" magnet. While using the food saver method, we used a strength "2", which held the coil in place much better, making it not only easy to get the swim cap on, but also keep the magnet in the proper place as Drew ran, rolled, swam and did all sorts of other crazy thing. (Note: We used a strength "1" on Day 1 at the beach and were very frustrated with the ability to keep his ears on.)


• One: For a bilateral child, only use one implant while swimming. We tried using two and it made getting the swim cap on virtually impossible. There is just too much equipment under the swim cap. It seemed like every time we would get one on with the swim cap, the other side was falling off. So, on Day 2 at the beach, we used just one processor, and had excellent results. (Also note, should you have an accident with a processor getting wet, your child will still have an ear to hear from).


• Which Ear?: For a bilateral child with varying map intensity, use the ear that has the "weaker" map. Drew's left ear requires much less "power" than his right, so we used the left ear while at the beach, just in case the coil became attached to the wrong ear. When Drew's right processor is accidentally put on his left ear it causes him great pain, so we avoided any accidental issues by "waterproofing" the left ear.


• Swim Cap Issues: We had a problem with Drew not liking the fact that the swim cap is tight on his head. We avoided having Drew pull his ear off multiple times by allowing him to wear his regular ears to the beach. We changed Drew to the "waterproofed" ear (note the singularity) before letting him out of the stroller. At this time he had so much to do that he wouldn't try to pull the swim cap off. Then we placed his regular ears in the zip lock bag and placed them in our beach bag until we were ready to leave the beach or pool.

I can honestly say that the food saver bag does waterproof the processor, as Drew pulled his swim cap and ear off while sitting in the ocean! The bag was floating in the water, without a drop of water on the processor. For our next trip to the beach I will be bringing a critter clip with us, so we can attach the food saver bag to Drew's swim trunks so that his ear doesn't float away in the ocean!

Overall, the waterproofing technique worked very well, and we were really happy with how well Drew could hear us, even with only one ear, the background noise of the ocean and a bag covering the microphones. He was clearly able to hear us well, even at a distance. At one point Drew was playing in a water puddle about 50 yards from where I was sitting (with his Dad supervising) and he heard me tell him to "jump" in the puddle.

Both Drew's Dad and I commented that we wish we would have brought one of Drew's Hanna Andersson pilot caps to try as the way to keep the coil on Drew's head. We felt very confidant with the waterproofing of the processor, and we both think that Drew would have been more comfortable with the pilot cap, as opposed to the swim cap, as he is used to wearing those at home.

As I read cochlear implant message boards, it seems as though waterproofing hearing technology is a "hot topic". Is there anything you would like to add that has worked well for your family? If so, please leave a comment.

What Does A Cochlear Implant Look Like?

I recorded this video several months ago because as I was remembering our confusion and lack of information when we first heard the words "cochlear implant". What exactly was it? What in the world did this implant look like?

At first I was hoping that Drew wouldn't have to wear hearing aids simply because I feared people or children in school would make fun of him. When we discovered his lack of hearing was more serious than that, I was left wondering what the implants looked like.

I searched for cochlear implant pictures, and I found a picture of an implant that looked like it must have been used in medieval Europe. This thing was a GINORMOUS satellite dish on the side of the kids head, with what looked like cat-5 cable tv cords coming out of it, running to a box the size of a laptop tied to the kids back with barbed wire.

Ok, I exaggerate a bit - but that's what it felt like at that time. So, because I want to make sure curious parents or other members of the public can see what the implant looks like and what pieces it's made of, I give you:

What Does A Cochlear Implant Look Like?

Note: This video is showing Cochlear's Freedom processors with babyworn and snug-fit technologies. Bodyworn or BTE (behind-the-ear) setups can be used, but are just not depicted in this video. What this means is that this setup is for little kids. For bigger kids or adults, you wouldn't have that long cable, it would all sit right on your ear (imagine you "erased" the long cable and only have what's shown above it left).

Please let us know if this video is helpful.

***I've added a captioned version of this video through Overstream. Here it is!

Music

While Drew has been sick over the last several days, one thing we have found quite interesting and exciting is that music, specifically our singing, has been instrumental in calming him down.

Once we were at the emergency room on Sunday night, Drew woke from his post-seizure sleep very cranky and was crying very hard. I started to sing, "Rock-a-bye Baby" and he immediately calmed. Each time a doctor came into our room and would examine him, Drew would cry and I would sing. He would stop crying until the cycle repeated itself again. He enjoyed my singing. (I know, can you believe it?) My parents and I all noticed this and thought it was quite amazing that a deaf baby enjoyed singing so much.

Drew can certainly tell the difference between speech and music. When I would try to comfort him with, "It's OK, Drew," or something like that, he would continue to cry. But as soon as I would sing, he was fine. This pattern has continued all week. If Drew is really upset, the sure-fire way to calm him is with song.

Amazing, don't you think? A deaf baby calmed by his mothers singing. I couldn't write a more perfect story.