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!

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!

Deaf NBA Player Has Cochlear Implants

Lance Allred was just signed to a 10-day contract by the NBA's Cleveland Cavaliers. While a fantastic accomplishment in itself, his stint in the NBA is even more spectacular considering he is deaf.

Lance has had around a 75% loss of hearing since birth, but now has (bilateral?) cochlear implants. In one article he described his implants as helping him hear most sounds, but when sounds are coming from behind him, sometimes he misses it. The result, he said, was that he'd been "wiped out" on several screens while playing basketball. Anyone who's played knows what that's like!

I'm not clear on whether Lance has one implant or two. I'll try to keep an eye out for him during the next few Cavs games, but if anyone knows for certain, please let me know.

Congratulations to Lance!

Cochlear Implants: Q & A

I have received several emails recently from parents of children newly diagnosed with hearing loss. I love the fact that this blog has allowed us to connect with other families all across the country (well, the world, really) that are going through similar experiences. Some of the questions I have received may be on the minds of others, so I thought I would post all of my answers here:

What genetic testing should I have run on my child now that he has been diagnosed with hearing loss? Do the genetic testing results have any relevance in regard to the treatment options? Did you see a geneticist or can an ENT order genetic testing?

While I am sure genetic testing varies from one hospital to the next, our genetic testing was ordered by Drew's ENT. He ordered the test after our initial meeting as a result of Drew's hearing loss. Drew's testing was run when he was about six weeks old. The genetic test is called a "Comprehensive Hearing Panel" and consists of testing for Connexin 26, Connexin 30 and a specific gene mutation. These are the most common, non-syndromic causes of hearing loss that can be tested and are genetic.

Many people never find a cause of their child's hearing loss. It is believed that there are many genetic causes of hearing loss that have not yet been discovered, so if these tests come back negative, that does not mean that your child's hearing loss was not a genetic cause, just not anything they can test for. I would however strongly recommend having this test run because if your child's hearing loss was caused by one of these genetic causes, you can rule out other causes, some of which are syndromic.

In addition to the initial genetic testing, your ENT will order a CT scan or an MRI to check the anatomy of the child's' ears. After the CT scan or MRI, the ENT may elect to run further genetic testing. If it is found that the child has enlarged vestibular aqueducts, malformation of the inner ear or other anatomical abnormalities, there are specific genetic tests that can be run for syndromes that have these abnormalities, such as Pendred Syndrome. This is just one of many syndrome's associated with hearing loss.

The genetic testing has no relevance in your actual CI candidacy. The only thing it can give you is an idea of how well your child may do with a CI. Children with hearing loss caused by Connexin 26 are known to do very well with cochlear implants because they don't have any other known problems, such as with thier balance, kidneys, eyes, just to name a few. So you might get an understanding of the possible outcomes with a cochlear implant. For instance, if a child has Mondini or EVS, all electrodes might not go in the cochlea, so results can vary. Ultimately, the success of the child is in the hands of the parents. The surgeon and audiologist can only do so much. Without parent support, intervention and therapy, the child will never perform to his maximum potential.

What made you so sure about having Drew simultaneously implanted? Furthermore, what made you feel that Drew needed two implants?

There were several reasons:

First, bilateral cochlear implants are proven to help with sound localization and with hearing in noisy situations, two areas we felt were vitally important for children. Drew can hear what direction a car horn is coming from if he is playing in the street. Also, for children in noisy situations - classrooms, play grounds, Chuck E Cheese - they can hear much better. For example, we were having dinner at Roosters the other night and I was talking to the waitress, who is an audiology major at Ohio State, about Drew's cochlear implants. I was listing all of the words he can say and he was repeating them! He was sitting on the other side of the table, I was turned talking to the waitress and he could hear everything I was saying. I don't think this would happen with just one cochlear implant.

Second, we did not see the need to put Drew through two surgeries when we already knew we wanted Drew to have bilateral implants.

Third, if you do sequential implantation, meaning one ear after the other 3-6 months, or more, apart, there is a "big" ear and a "baby" ear. The new ear has to catch up. You have to do specific therapy to catch up that second ear because it has gone longer without auditory stimulation to the brain. We didn't want to do that. It is important to know that many parents did not have this option when their children were first implanted, as research into bilateral implants has only been around for about two years. When Drew was diagnosed we received mixed reviews on the medical necessity of bilateral implants. The whole concept was very new. Drew is only the second child in Ohio to receive bilateral implants. I have a feeling that many families would have chosen simultaneous implants if it would have been a choice at the time.

We have also, over the last eight months, run into other reasons why there is a significant advantage to bilateral cochlear implants.

What made you decide to have Drew implanted at such a young age?

Drew got zero, and I mean zero, benefit from his hearing aids. He never responded to anything with his hearing aids! Seriously, we got one response in the testing booth in over six months time. We never saw him respond to any environmental sounds at home (phone ringing, dog barking, doorbell). Every day that went by was one more day that Drew was not getting any auditory stimulation and one more day further behind in his development. Had Drew shown even the slightest benefit with his hearing aids we probably would not have pushed as hard as we did. (Although, seeing the results, I can't imagine not getting him implanted as young as possible). Once a child is 6 months old the complications of surgery reduce considerably, as the risk of anesthetic declines.

I was very persistent and direct with our ENTs on my expectation that Drew be implanted at eight months of age. I finally called each of the ENTs we were considering and asked them for a surgery date the first week of June for bilateral implants. One agreed, one did not. We would have gone to the end of the earth to get him implanted when we did. Travel distance to the implant center did not matter to us. We would have searched out skilled doctor after skilled doctor to have Drew implanted at that age.

What is the difference between Auditory Verbal and Auditory Oral philosophies? I know there is an Auditory Oral school near us - is that successful as well from what you have heard?

The line between AV and AO is blurring.

Traditionally, AV believes in not allowing the child to do any lipreading, mainstreaming from the beginning (meaning there are no AV schools because they believe in putting the child in a preschool with typical, hearing peers) and the process of catching up a child's hearing age to their actual age happens without any special needs schooling.

Traditionally, AO allows you to see the lips of the person talking. In fact, AO used to encourage the use of lipreading as a means of communication, although I think that idea is fading as amplification options become better and better. In addition, with AO, the idea is to give the child intensive therapy from the beginning, in a special needs setting, so that the child can mainstream in school by kindergarten, or when the child is ready.

We are doing a combination of both therapy methods with Drew. In his therapy sessions we use a lot of AV, where we don't allow Drew to see our lips, making him perform all tasks with auditory input only. But in everyday life, Drew can see our lips. We also strongly believe in sending Drew to an oral preschool that will focus on his specific needs and give him a head start to mainstreaming in kindergarten. I would not feel comfortable sending him to a mainstream preschool. To me, that would be like giving up precious years that we can use to educate him with intense auditory and speech therapy.

How old was Drew when he received hearing aids? Were you able to use loaner hearing aids? I'm thinking my child will be 3-4 months of age before he receives his hearing aids through our states loaner program.

Drew received his hearing aids when he was 10 weeks old. We did get loaner aids through our Regional Infant Hearing Program, because we knew that the hearing aids were likely not going to give Drew enough amplification to develop normal speech and hearing.

There is a mandatory hearing aid trial in order to develop candidacy for a cochlear implant, so the sooner your child receives hearing aids the sooner you can head down the CI path (if the aids aren't working). We had to wait 3 months from when we got the aids to begin down the path toward the cochlear implant, and this time frame may vary by program. We actually started the official cochlear implant process in March. We then had to do the candidacy process, which included meeting with a Social Worker, SLP, ENT and our audiologist. I had scheduled many of these appointments in advance to speed things up. The best advice I can give it to advocate for your child in order to move the process along. I went with the old saying, "The squeaky wheel gets the oil." I called the doctors office everyday to see if there were cancellations so that I could get Drew in for his evaluations sooner. I think that the receptionist got so sick of me calling everyday that she finally just gave me an earlier appointment.

What forums would you recommend I join?

There is a great Yahoo! Group: CI Circle. It is a group for parents with kids who have cochlear implants and for parents of kids in the cochlear implant process, although there are many professionals involved with the group as well. This group has been an excellent source of information for me throughout this entire process. This group was where I initially discovered that kids were being implanted under 12 months of age. They were also great with providing information on insurance companies that were providing coverage for bilaterals and for under 12 months of age.


If you have any recommendations or would like to expand on these questions, please leave a comment.

"Is That It? I'll Just Pay Cash."

We got Drew's "Explanation of Benefits" for his bilateral, simultaneous cochlear implant operation in the mail on Tuesday. We had a little bet going on who would come closest to the total cost, but both Drew's Mom and I were way too low.

The total "Provider Charges" were a whopping $155,232.71! However, because our insurance company Anthem Blue Cross and Blue Shield evidently "gets it" regarding how important bilateral cochlear implants can be for a child (or adult), the total out-of-pocket cost to us is only $1,170.15.
As I constantly "meet" people from Spain, Sweeden, California, South America, and all over who are dealing with hearing loss, hearing aids or cochlear implants, one thing is clear. That is the fact that whether one has insurance that will cover their chosen "plan of attack" directly impacts how successful that plan will be.

We are the fortunate ones. Our insurance company (Anthem of Virginia) gave phone approval in under five minutes for a procedure that some families never get. (I'd like to thank those who have decided to cover this procedure, as it truly makes a difference for Drew. I'll never meet you, but if you happen to see this please know we feel you have done a great service to your customers.)

Some insurance companies (now the minority) don't cover cochlear implants at all. Other insurance companies claim that a second cochlear implant is experimental or not medically necessary, despite growing evidence that they do benefit the users.

Because most of us can't quite find it in the budget to write a check for $155,000, not obtaining insurance approval means that they won't be able to take advantage of the cochlear implant technology. Families often fight for months or years to get insurance approval, while precious weeks roll away. These vanishing months quickly close the window of time during which a young child can grasp the foundations of language, with it often closing before the appeals, court arguments and battles have concluded.

Make sure this does not happen to your child. If you have decided that a cochlear implant is best for your son or daughter, I want you to do two things:

#1 - Start the insurance approval process immediately. Don't wait. Don't assume. Request a copy of what is covered by your policy. Politely demand that your chosen surgeon or audiology team contact your insurance company right away for approval.

#2 - If you are having difficulty, contact the Let Them Hear Foundation. They help families battle insurance companies that deny cochlear implants (or a second implant) to those who need them. Perhaps you should contact them even if you don't foresee trouble, just to take advantage of their educational resources.

We are going to send our approval letter and explanation of benefits to the Let Them Hear Foundation so they can demonstrate to the other insurance companies that bilateral, simultaneous cochlear implants are being covered. I hope that in this way we will be able to help others "Turn on their ears".

Raise Your Hand!

Everyday in the US, approximately 1 in 1,000 newborns is born profoundly deaf, with another 2-3 of 1,000 babies born with partial hearing loss. While pregnant with Drew I worried about so many things, but not once did I ever worry about him being able to hear. Little did I know that it is the most common birth defect in the United States.

My life has been forever changed as a result of congenital hearing loss, but I have taken action to not let this hearing loss impact Drew's ability to communicate in the hearing world. There are amazing technological advances that people of all ages with hearing loss can take advantage of, but only if their hearing loss is properly diagnosed and treated.

May is Better Speech and Hearing Month and I recently learned of an awareness effort called "Raise Your Hand". If you have ever taken a hearing test yourself, you know that when you hear the tones in the headphones you raise your hand. If you or someone you know is dealing with the far reaching effects of a hearing loss, "Raise Your Hand" for better hearing and help do something about it!

Please

Read this. Then you will understand why I feel the need to comment here.

. . .

Drew's Dad stumbled upon this blog post today about "Turn On My Ears" and he made the mistake tonight of letting me read it. I can not ignore this blog post, and feel the need to comment here.

I can imagine how "startled" I would feel if I simply read a few posts of someones blog and then proceeded to make assumptions and assertions from simply a few pieces of information.

First, if you would like to know where we came up with the name "Turn On My Ears," you can read this post. I personally like the name, as we are going to have the opportunity to take our perfect little boy and turn on his hearing, a moment that we will be able to witness (and video tape) for the first time!

Secondly, we started this blog when Drew was a little over six weeks old in November, 2006. He is, as I write this post, a little over seven months old, awaiting his simultaneous cochlear implant surgery. He will be eight months at the time of surgery and nine months when he is "turned on" for the first time. He will be eleven months old on August 24, 2007.

If you would like to know how a cochlear implant works (note it is cochlear implant, not cochlea implant), then you can read this.

Furthermore, we have taken all of the advice and education we have received from the specialists that are working with Drew. As we have learned from our teacher of the deaf through the Regional Infant Hearing Program, our therapists through Auditory Oral Children's Center and Columbus Children's Hospital, there is a lot of research that shows sign language is a great bridge to oral communication if established at birth. If you are interested in the communication, a.k.a. sign language, we have established to date with Drew, then read this.

Also, we have been quite clear and have understood from the very beginning that the cochlear implants alone will not allow Drew to communicate orally. It will take years of hard work and therapy to ensure that Drew will communicate orally and mainstream with his hearing peers. You can read posts on this subject here, here and here.

More than anything, Drew's Dad and I have made the decision to have Drew join the hearing world. We are his parents and we have to make decisions for both of our children that will give them the best opportunity to be all they can in this lifetime. We want him to hear us say "I love you". We want him to hear his big sister call him "Dew". We want our dog Eddie to wake him up with a bark. But more than anything we just want him to have all the abilities he needs to do what he wishes in this life. And "Turning On His Ears" will do that.

Cochlear Implants: Young People's Views

What do teenagers who received a cochlear implant when younger think about their parent's decision to go ahead with the surgery?

The National Deaf Children's Society (UK) and The Ear Foundation (UK) has produced a booklet with contains the responses of around 30 children who were between 13 and 17 years old to questions including the following:

1) How Do You Feel About Wearing the External Equipment of the Cochlear Implant?
2) What are the Advantages of Having a Cochlear Implant?
3) What are the Disadvantages of Having a Cochlear Implant?

This informal study also includes information on how the implant works, issues of using a cochlear implant at school, communication, language, identity, and deciding to have a cochlear implant.

This is another nice piece of informative material that I hope parents find as they look for information to help them decide what is best for their child.

You can visit the National Deaf Children's Society or The Ear Foundation for additional information, forums, and more.