Is Bilateral Really Better?

From Ci Circle News

Is Bilateral Really Better?

Written by Val B., Nov 14, 2008

"One of the most common questions people ask me is "So what's the difference between having a child with unilateral and bilateral hearing?" Having a child who wears only one cochlear implant (CI), but also a child who wears two, lets me see on a daily basis how different my children are in that respect. Before I begin telling you about my kids, I wanted to mention that not everyone is a candidate for bilateral CIs. It may surprise you to hear that just because your child received a cochlear implant in one ear, doesn't necessarily mean that they would be a good candidate for bilateral CIs. Maybe they have good access to sound with amplification or a hearing aid or maybe medically they don't qualify for the surgery itself, but you should always consult your surgeon and audiologist to help determine whether your child would be a good candidate. In my son's case, his anatomy prevents him from receiving a second cochlear implant. He has severe inner ear malformations and his facial nerve is also higher than that which is found in a typical patient. In fact it took two attempts for him to receive his one CI.

When each of my children received their cochlear implant (Gage at age 3 1/2, Brook at age 2 1/2), we knew we had done the right thing. We couldn't have been more pleased with the results, they were actually hearing. It was amazing to watch them listen to new things, hearing soft sounds they never knew existed. While at the audiologist's office for a routine visit, we were told that my daughter would be a great candidate to receive a second CI. I told her we would think about it, but I seriously doubted that we would be interested. I had already read about the benefits of bilateral hearing: I knew that it would help with localization (figuring out the direction where sounds are coming from), I knew that she would have an easier time hearing, I knew she would be less tired at the end of the day. My concern was that I had a five year old boy, who I could not offer these things to. How could parents offer all these great and wonderful things to one child, and not the other? After many sleepless nights, I realized that we as parents shouldn't deny my daughter these things either, just because her brother was not a bilateral candidate.

I called the audiologist's office, and we began the pre-implant process once again. Like before, we didn't really know what they were missing until she received this second cochlear implant. She wore both processors from the beginning, removing her first one during therapy visits, so that we could try to teach her to hear with the newly implanted ear, just as we did after the first surgery. Within weeks, my now bilateral child, could actually hold a conversation in the car without me having to turn around to face her, something I still need to do with my son.

Even today, over a year later, she cannot only hold a conversation in the car, but she can do it with the radio on. I also discovered that she was no longer searching for sounds, they simply found her. If they are both playing on the floor and the telephone rings, my son's head pops up, he looks from side to side, and resumes play, realizing it was the telephone. My daughter never even looks up, but might say "Is that my Nanny calling?" She automatically processes the information since she can determine direction from where sound is coming. While outside playing, my son can hear cars pass by and for safety reasons alone, we are so thankful he can. My daughter however, can hear the cars approaching, before they pass by, truly amazing. When using the phone, my son needs to use the telecoil option on his processor. My daughter can use the speaker phone and not only hear the person on the other end of the line, but she can hear background information from that party and detect what is going on at that house. She heard her grandmother cooking as she spoke to her on the phone one day, and that was incidental information. We naturally say my son's name before we speak to him, to let him know that he needs to listen to us, but with my bilateral daughter, we can skip this and jump straight into conversation and she can follow along with greater ease. If someone approaches my son unexpectedly or doesn't announce that they are speaking to him, he always follows with "what?" needing a repeat.

Those considering bilateral cochlear implants for their child need to also consider the added expenses. The child will need to have both processors mapped as opposed to just one device, and there will be other added expenses such as batteries, co pays, etc. For us, we decided the benefits outweighed these expenses and we chose to proceed with our daughter's second device. We felt that having a back up way to hear, should one CI lose sound temporarily, would be to her advantage. I can certainly tell when my daughter only has one device on, because she needs frequent repeats just like her brother. We feel good that she now benefits from the bilateral hearing, and we know that her brother has learned to adapt well with his unilateral hearing. He automatically positions himself close to the speaker, he uses closed captioning when available, and he has little sister to look to for help when he needs it."

Story Kit

Logan's teacher did this fun activity in class to help teach Thanksgiving vocabulary. When we were reading the story, The Old Lady Who Swallowed a Pie, he asked me to tkae a picture to show his teacher "Ms.Virgi",so I shot this little video.

Photo and video editing at www.OneTrueMedia.com

My Busy Day...

I had speech therapy at 8 am with Miss Brittany...

I had my Thanksgiving celebration at school at 11 am...

I took a quick snooze in the car at 12 pm...

I met up with dad for my ENT pre-op appointment at 12:30 pm...

Then we were home for about 20 minutes--long enough to do my "stars"...

We were then off to another appointment for my pre-op with anesthesia at 3:30 pm...

And finally, a reward for all my patience and good behavior today...

I should probably explain the Mickey Mouse countdown above...

I received a phone call form the surgeon's office 2 days ago saying that they had a cancellation and that Logan was scheduled to have his surgery done THIS Tuesday, Nov. 25. I was a thrilled that they got us in so fast, I was nervous that we hadn't had time to prepare Logan for his visit to the hospital, I was emotionally not ready for it to happen so quickly and then....I was disappointed that November 25 would not work for us. We are planning on going to Orlando (and Disney World) over Thanksgiving break. The boys would be crushed if we changed plans and since they had another date that was also soon, we took that one instead.

DECEMBER 9, 2008!

Here we go again...

Logan's new speech therapist!

While I was in the next room yesterday, I heard my older son, Tanner, doing "therapy" with Logan. It made my heart melt!

Make an on-line slideshow at www.OneTrueMedia.com

Ci Circle post

Although I know that by making the decision to have Logan (bilaterally) implanted we have given him a better future, you still worry every waking moment if he's progressing enough, when he will catch up with his peers and how hard his struggle will be as he grows. I love stories like this that give such hope and remind us that all this hard work is definitely not going to waste!

I found myself on YouTube!

I was searching through The John Tracy Clinic's website and came across this video of me being interviewed about Logan's story and the clinic, when we lived in LA. If you can get past the fact that I am speaking a million words a minute, it's fun to watch...

Fun!

So cute. Click here to check it out!

"My son has what?"

I received a very interesting phone call from the surgeon's office last week. Here's how it went:

Dr. Antonelli's assistant: So Mrs. Cragun everything looks good to go forward with the surgery, we are just waiting for insurance approval. The doctor looked at the CT scan and other than Logan's birth defect, everything else looks normal.

Me: I'm sorry, did you say birth defect?

Dr. Antonelli's assistant: Yes, Logan's E.V.A.S.

Me: His what?

Dr. Antonelli's assistant: His E.V.A.S., enlarged vestibular aqueduct syndrome.

Me: You'll have to start over, I have no idea what you are talking about.

Dr. Antonelli's assistant: Mrs. Cragun, your son has E.V.A.S. This is the cause of your son's deafness. Is this the first you are hearing of this? What did your previous doctors tell you the cause was?

Me: We were told that every possible test was done and that the cause of Logan's hearing loss was unknown, so yes, this is news to me.

After the call ended I immediately Googled Enlarged Vestibular Aqueduct Syndrome. I learned that E.V.A.S. is the number one cause of progressive hearing loss and the only cure for it is Cochlear Implants. A ton of questions went through my head. Why is this the first I was hearing of this? It's not like it is uncommon. Why wasn't Logan tested for this sooner, especially since they knew he had a progressive hearing loss? Why did his first surgeon not see it on the CT scan? I became confused and upset at our previous doctors in LA. I couldn't help but to think, "what if". If Logan had been tested for this when he was younger, he could have been implanted by age one (which is recommended). If the doctor had seen it in the CT scan last year, they would have known that Logan needed the second implant and we wouldn't have had to fight them for it (and fail) like we did. We had struggles with our audiologists and doctors in LA from the beginning and I feel like this just put me over the top.

Knowing this new information doesn't change the future much and I know that. Logan is still getting the second implant and that's what is important. But I think as a mother, you become upset by feeling that your child was not fully taken care of. I look at the struggles he is facing right now and how he is now starting to really feel the effects of not being able to communicate with children his own age. I can't help but to think that we are two years behind in his progress because he was not diagnosed and implanted 3 years ago.

Someone asked me, if it makes that big of difference that we know the cause, because it doesn't change much of anything--and they are right. But knowing that Logan has E.V.A.S. and that his left ear will FOR SURE become progressively worse, helps me feel peace now in getting the second implant done. I have been slightly nervous not knowing if we were doing the right thing or not, I know now that we are. Once again, I am grateful that we followed our promptings to pack up our family and move across the country. I know that a lot of this move had to do with Logan, we are so happy that things are all coming together.

Already?

People stare at Logan's "ear" all the time, I have just come accustom to it. It doesn't bother me, it never has. Logan's CI is what makes him special, unique and I want him to grow up knowing that and appreciating it. I actually prefer it when strangers (politely) ask about it rather than point and whisper. I have had many different assumptions from people as to "what is on his head."

I actually did have someone say to me, "How cute! He wants to be a big boy with his pretend bluetooth." I thought this story was outrageous, but I guess the CI does look quite similar. I have also had someone ask me, "What kind of brain disorder does your son have?" And one of my most memorable was when we were at Disneyland last year and a man came to me and said he wanted to pray for my son to heal him and give him blessings. He proceeded to lay his hands on Logan's head and pray. I interrupted him and explained that the Lord had already "healed" him by providing a way for him to hear and that this little device was our blessing. Children are my favorite. We have been in the check-out lines many times when a young child will ask out loud, to his mother, "What is that thing on his ear?" The mothers are always extremely embarrassed and either ignore their child or whisper to them that it is not polite to say things like that. I always smile and go forward with telling the child that when Logan was born his ears didn't work so well, so now he gets to wear this cool blinking thing on his ear to help him hear and learn to talk like other children.

Again, none of this has ever bothered me . . . until I saw it bother Logan. He, too, has adjusted well to wearing the implant-it's a part of his every day. But the other day we were in the post office and this older woman was staring at Logan's implant. I smiled at her and then looked at Logan only to notice that he was covering up his implant with his hand and burying his head into me. I asked him what was wrong and he pointed to his ear and then pointed to the woman. She quickly turned away and I apologized to her, as to which she did the same. It broke my heart. When did Logan become self conscience about his implant? Logan has always thought his implant was cool, with the blinking light and the cool stickers. I wonder why that changed. We thought that this would possibly become an issue as he grows older, and we have prepared ourselves to maybe have to deal with this in the future. He is only 3 1/2 years old, and it is already starting. As silly as it sounds, this was actually one of my concerns about getting a second implant...he would no longer have a side of his head that looked normal.

I think sometimes we forget what a miracle this really has been. I am grateful for the opportunity to share our joy with others. Logan is by no means speaking "normally" so we forget how far he has actually come. We are coming up on Logan's 1 year "hearing birthday" and are still astonished and amazed when something new comes out of his mouth. We know how blessed he is and we will make sure that he knows that as well as he grows and continues on his journey.