A Lotte Update

After I sent a response to Lotte's father about "the experiment," I received the following response. Lotte's father has given me permission to share it:

"Hi Laurie,

Thanks for that experiment. And a thorough job you did...Was great to hear how you perceived the sound. "Distant and nasal" is a description we can use. With this we will try to have Lotte to wear it on the ear. With the battery still on the shoulder perhaps. We'll do some experimenting ourself. Thinking of it, the fact that the BTE is not just hanging on the ear, but also hugging the bone of the head, might be a reason for a different sound. Like we, and you said, Lotte will decide for herself. And with her being used to the current sound, changing might not be the most popular thing to do. But we'll try in the weekend. I don't think the distance between face and microphone makes the difference, but who knows. Lately Lotte has been talking louder. We feel that it has to do with the vacation. Being outside for so much (weather in Holland and Italy was great) might require more sound in order for her to hear her voice in the same way. Another factor might be the fact she has been excited 24/7 during the holiday... Happy bunny...

By the way... Have you found ways that you benefited from it? Again, thanks for your help. It has been very informative."

Lots of love, Onno & Marieke B----, on behalf of Lotte

I wrote back and said this:

As far as benefitting from having the processors on my shoulders, I can see where it might help in certain situations, like if I was in surgery or in bed for an extended period of time, doing an outdoor activity like boating, skiing, or something active where I would not want to lose my processors if they fell off....

And later, another response:

"This weekend we tried it on the ears. With the batteries on the back, and with the complete BTE on the ear. Lotte doesn't mind, but still prefers them on the shoulder. So do we.... after she came back with a broken BTE. It had fallen off, and 2 of the 3 little pins of the bayonet-closing thingy (how on earth do you call that) broke, making it impossible to close it. Well, it's on tape now. Duct tape will be the next move..Anyway, we put it higher on the shoulder than before... not much change though..."

Poor Lotte, she now has a broken processor after trying it on her ear...I feel bad for her. Hopefully she will get a replacement processor soon!

A Very Special Request

Last month I received a very special request from another blogger who lives halfway around the world in Norway. His daugher, Lotte, wears the BTE (Behind The Ear) Cochlear Freedom Processors and is also bilateral like me. Her father asked me to be a guinea pig for an unusual experiment....

You see, Lotte does not wear her processors behind her ears but on her shoulders in little handmade pouches. Several medical specialists do not like the way she wears them but really cannot provide an answer why her cochlear implant processors should be worn on her ears. Lotte was implanted at a young age and has always worn her "ears" on her shoulders. And does not want them any other way. I know of other bilateral children whose parents put the processor(s) on their child's shoulders because it keeps them from falling off their small ears or manipulating the controls or losing them. Lotte's parents want to have some ammunition the next time the doctors and audiologists started complaining.

So, Lotte's dad reached out to me via Facebook and asked me to try wearing my processors on my shoulders for a few days so that they could have an adult opinion when this issue came up. Lotte is still too young to give them feedback on what or how she hears because she does not know anything different. Her parents are curious to know if sounds are softer on the shoulder or more difficult on the shoulders as opposed to being on the ears. They also wanted to know if there was a difference if the processors were covered with a coat or jacket, whether sounds were easier to hear without the wind blowing across the microphones or they were more muffled. I tried hanging my processors off my ears but my coils were too short to notice any changes in sound perception. After we traded several messages, here is what I got in the mail....this...

... and this! They sent me some "pouches" for my processors to clip on to my clothing, a pair of long coils, and the sweetest note! I have a feeling that Lotte put those stickers on! I love the beautiful handwriting, too.When I was Lotte's age until the age of 20, I had the most powerful body hearing aid available on the market and wore it tucked in my bra. I was very creative hiding my cords using my bra straps and rubber bands because I did not want anything to show. My microphones were in front of me on my chest. In fact, when I talked on the phone, I looked like this:I never really knew a difference having my "ears"on my chest because I did not have anything else to compare with and it was all I knew. And heard enough to get by with what little hearing I had.

Later, as an adult, I was tired of the "box" on my chest and got BTE hearing aids, mainly for cosmetic reasons. Even though the BTE's were not as strong as the body aid, I did not care because I wanted to "look good" and not have to bother with the cords, etc. My hearing was so poor that I really couldn't tell the difference between the body aid and the BTE's on my ears, except the BTE's were softer and not as strong.

I was honored and happy to do this "experiment" for Lotte and her parents. Not everyone can move their "ears" to their shoulders! The first thing I noticed was that my voice and sounds were very "nasal" or muffled, as if I had water in my ears or was in a swimming pool area. That did not change after a few days. But, the brain is an amazing organ and probably would have adjusted if I had kept them that way for a longer period of time. It was also very inconvenient having my processors on my shoulders because I could not change my batteries or change my programs or settings quickly. Lotte's parents probably handle those details for her. And, it was almost impossible to use the telephone. I had to move the processors to my ears to use the phone. Also, there really was no difference with or without a coat or sweater covering the processors on my shoulders. When I wear a hat over my BTE processors, I hear fine. I do like the sound of the wind so it does not bother me if it is there or not.

But, after I thought about it for a while, I realized that the distance from my ears to my shoulders is probably greater than for a child like Lotte. And the space from shoulder to shoulder is a greater distance on an adult when compared with a child. So, Lotte's processors are probably closer to her ears than mine are when I wore them on my shoulders. That may change as she grows. I still got "surround sound" no matter where the processors were located.

My advice to Lotte's parents was to let Lotte make the choice how she wears her processors. Why change something if it isn't "broken?" It should be her choice to move her BTE's to her ear. She may change when she gets older for convenience, or when she wants to look good, or when she sees how others wear theirs, etc. She does see other children with BTE's on their ears with amazing contraptions to keep them there but her father says she will follow her own way. She does not complain and is a happy seven year old going to school, interacting with friends and family, and even playing the piano. I really do not not think it should be an issue because she is hearing sounds, communicating, and is getting surround sound. There really is no "right" or "wrong" way to wear a cochlear implant processor as long as a person can hear!

To my readers, if you are a parent of a child that wears cochlear implants or hearing aids, an adult CI user, an audiologist or other health professional reading this, please do two things for me:

1. Leave a comment on your thoughts or experiences on this post for Lotte and her parents, AND...
2. Go visit Lotte's blog and say "hi!" She'd love to hear from you!