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!

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.

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.

Off and A Little Conversation

There are many times during a day when one (if not both) of Drew's coils fall off through play. Either from falling down, rolling around or running, it is inevitable that coils will fall off, thus leaving Drew with only one ear to hear from or in silence. In the past, we have relied on the little flashing lights on his ear level piece to tell us that Drew is not hearing. I find myself constantly looking at his ears to make sure that everything is working correctly. Now, we have a new way of knowing: Drew!

Drew now tells us when his ear(s) is off. He can even tell which ear is off, as he will bring his hand up to the ear that is off while saying, "off, off." While driving in the car yesterday Drew said, "Mommy." I turned to look at him while saying, "Yes, Drew." He then pointed to his ear and said, "Off." Drew actually knew to get my attention and then tell me that his ear was not working correctly. I found that rather amazing.

At dinner this evening, Drew kept pointing to his left ear while saying, "Off." I kept telling him, "Drew, you ear isn't off," because I could plainly see that the coil was attached to his head. Upon further investigation, the flashing light was off. I found that his processor had indeed turned off and that Drew was not able to hear. I need to learn to listen to him and investigate more thoroughly!

On another note, Drew is having fantastic conversations with us! I feel like he is really understanding what we are saying and he is conversing with us appropriately:

Me: "Drew, please stop pushing your sister."
Drew: Continues pushing her.
Me: "Drew, look at me." [Drew turns his head and looks at me] "Will you please stop pushing your sister?"
Drew: "No."
Me: "Drew, you need to go to timeout."
Drew: While walking toward the timeout chair, "Okay."

And a conversation with his sister:

Drew: [Calling sister's name while running after her]
Drew's Sister: "Drew, do you want the vacuum?"
Drew: Shaking his head, "Esss."
Drew's Sister: [Hands him the vacuum] "There you go, Drew."
Drew: "Thank you."
Drew's Sister: "You're welcome."

The expression of "normal" is often over used and mis-understood. And seriously, what is normal? But I can't help feeling that whatever "normal" is, we're there. Sure, I have to talk to Drew all. the. time. And do "therapy." But I love to talk, so I would talk to him all the time even if he wasn't deaf. It feels natural, not forced and has become part of who I am and who we are as a family.

We're having a lot of fun. Drew is becoming a toddler, exploring the world around him and becoming more and more independent. Drew can have conversations with his sister, his Daddy, his aunts and uncles. Can it get any better? Knowing Drew, I'm sure it will!

How To Swim With A Cochlear Implant On

This video gives us hope for those hot, humid days in mid summer. Many times we have sat and wondered "How can Drew swim with a his cochlear implant on?"

At first we figured it couldn't be done. We thought that we'd have to just keep a close eye on him, maybe communicate solely through sign because he wouldn't be able to hear a thing in the pool.

I know Cochlear's Nucleus Freedom Implant is "water resistant", but certainly that doesn't mean it can withstand a furious game of "Marco Polo". We figured swimming would be a difficult task to endure.

Then we came across this video, which has me ready to do a giant cannonball - Greg Lougainis style - right now!



The video states several times to proceed at your own risk (to the equipment), but I think this could definitely work. We will most definitely be shopping for the FoodSaver to protect the implant and some flashy swimming caps, to get Drew ready for some big-league splashing this summer.

Note: Another accidental benefit of having bilateral cochlear implants pops up here. We'll have him wear just one in the pool, and if for some reason it is damaged, we have the other to fall back on until we can mortgage our house to pay for a replacement.

Happy Swimming!

Why Cochlear?

Drew's Dad and I have been playing around with Blogger and were experimenting with the survey feature, hence the "Which brand of C.I. Did you Choose?" question on the sidebar. It's a little coincidental since Amy recently left a comment asking why we chose Cochlear as the brand of implant for Drew. She is trying to decide which brand to choose for her daughters upcoming surgery, so I thought I would share "Why Cochlear?"

• Cochlear is the brand that our surgeon and audiologist have worked with the most. Therefore, the surgeon has inserted the most Cochlear arrays and our audiologist has the most programming experience with the Cochlear brand. We took this in high regard. We did not feel that it would be good to choose a brand of implant that they were unfamiliar with. We know that our implant team has a lot of relationships with Cochlear, as has been evidenced in the audiologist from Cochlear attending Drew's mapping sessions, on occasion.


• Cochlear is the brand of choice of Dr. Jacques Herzog and all other surgerons we met with. We hold Dr. Herzog's opinion in high regard, and that weighed on our decision.


• We liked the bodyworn processor and were aware of the impending babyworn launch. We thought that having the microphones on Drew's ears was vital for developing sound localization, so we were very impressed with the Snugfit for chilren, to help keep the processors on their ears. We liked the rechargable battery option for both configurations (I do not know about the battery options for Med-El or Advanced Bionics).


• We like Cochlear's Customer Service and their commitment to future techonology. When we discovered that Cochlear has a commitment that all current recepients of their product can take advantage of new product introductions we were thrilled. Knowing that processor and software upgrades will be available for their current paitents is wonderful. In fact, we are awaiting the current software upgrade that will program the internal device such that we never put a processor on the wrong ear again. Yeah, no more tears!

Ultimatly the equipment and customer service can only do so much. If you do not have appropriate mapping or therapy post implantation, the recepient is not going to excel with his/her implant.

So the question is, readers, which brand of implant did you choose (for yourself or your child), and why? Let's help Amy out with this difficult decision.

Babyworn

We received our Babyworn upgrade from Cochlear this week. I have been so excited to try this new product. I have to admit its' arrival was a little anti-climatic.

First, the babyworn cord is way too long. There is a lot of extra cord flopping around which Drew likes to play with. He accidentally pulls off his processor and coil all day long, especially in the car. This creates a problem because then he is chewing on his processor and coil. My Mom had to pull her car over after therapy the other day to get the processor out of Drew's mouth!

Second, the babyworn allows a child to use the standard BTE in a way that fits the child. The problem is that the BTE does not have a setting to turn on an audible alert if the coil is not on. With the bodyworn, we would always hear four beeps if Drew's coil would fall off (rolling around on the floor, running into something or just removing it himself). Now we don't have any alert other than the flashing red lights on the processor, which are often hidden by his Hanna Andersson hats. The other night he was attempting to remove all of the ornaments from the Christmas tree. I was saying, "Drew, that's a no-no." He is a very good boy, so usually when we say "no," he stops whatever he is doing. But this time there was no response. He wouldn't respond to his name or anything. I got up from the couch and walked over to him to find that both of his coils had come off. It's a little frustrating to not know exactly when they come off.

I do think that Drew likes the babyworn better and these small issues will go away as Drew gets older. The babyworn is significantly lighter in weight and takes up by far less space on his back than the bodyworn. I think we are going to continue to use the pockets on his clothing to help minimize the amount of cord that is hanging idle on his back. And as he grows, he will be able to tell us exactly when his coils come off, so the audible indicator will not be nearly as important as it is now.

Also in the free upgrade was the Snugfit. I purchased it from Cochlear's website in August, so we already knew what an AWESOME product the sungfit is! I don't know what we would have done without it the past four months! We used the mic-lock for the first month. They were a disaster. The processor was always falling off of Drew's ear.

It's funny what you get used to. I was so against ordering the bodyworn when we placed Drew's equipment order back in April, but our audiologist insisted on it. The babyworn was not available and she was opposed to pinning the processors to Drew's shirt because she felt Drew would not be able to localize sound as well with his ears on his shoulders vs. on his ears. After using the bodyworn for five months, I have to say that I am so thankful we have it. I can not imagine in the early days, when Drew was still so young, rolling on the floor all the time, trying to make sure his processors were on without the audible alert.