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!

Part I - The People I Meet - 2009 HLAA Convention Pictures

The 2009 HLAA Convention in Nashville has come and gone but the memories remain.....here are some pictures for you to enjoy!

HLA of Knoxville Chapter

This is my local chapter (click on the above name to access our Chapter blog) and I was so pleased that some of our members were able to come and experience this convention. Every time I saw one of them, they looked like they were having a great time!

Mark Brogan and I

I am so PROUD of Mark! He shared his story at the Opening Night Ceremony about how he lost his hearing in both ears as a result of a suicide bomber in Iraq three years ago. When he first started coming to our meetings in Knoxville, I knew that there was something special about him. His story is incredible and he has been through a lot. His wife, Sunny, is his biggest cheerleader and they will be on the cover of the HLAA magazine in the near future.

Sam Spritzer & I

Sam is a very special online friend. We met each other via my blog in April of 2007 when he was starting his cochlear implant journey. We've kept in touch regularly online and he has a blog HERE. He had recently had scare last week with a heart attack and is so thankful to be alive. This picture was taken at the Nashville airport where I was volunteering and was our first meeting in person. I knew who he was right away when he started walking towards me with his smile!

Me with Judy Martin
Judy is the President of a HLAA Chapter in Florida. We've kept in touch online for quite some time. She has been a great help answering my questions and giving me support for the Knoxville HLA Chapter. It was fun to finally meet her in person!

Tracey & Susan
These two beautiful gals were my roomates this year. This was Tracey's first convention and she was very interested in the seminars and exhibits. Susan is the first person that I met with a cochlear implant and was the one who was so supportive and helpful when I started my CI journey. She has a blog HERE about her CI Journey. Both of these gals work as nurses in my ENT/CI doctor's office, so I was well taken care of!
Debbie & Steve Bottles
This wonderful couple are a sister and brother team from Idaho. I met them online in the HLAA CI Monday night chat and they are just as charming as they look! They both have cochlear implants and received them together at the same time a few years ago. And doing great! They have a blog as well at (Insert Blog here)
GIRLFRIENDS! (Click on their names to access their blogs)
Left to right: Me, Abbie, Tina, and Jennifer
I met all three of these gals via blogging. Abbie and Jennifer were my roomates last year and are great fun. Joining us in this picture for the first time is Tina from Washington, D.C. who writes about her young son's cochlear implant journey. Tina is a GREAT advocate for her little boy and is doing everything she can for him and other children with hearing loss. Abbie was the Convention blogger this year and you can access the Convention Blog HERE. Jennifer is the current President of the Nashville HLAA Chapter and had a beautiful welcome speech on Opening night. Sir Tom, Me, and Big Bear
I met these two men last year in Reno and and also online in the Monday Night CI Chat room. They both have cochlear implants (Tom has one and Big Bear has two.) Sir Tom and his wife, Judy, have been guests in our home twice this past year and are such a great couple. They brought their Wii the last time they came and we played games during their whole visit! Big Bear (Wayne) is has been part of HLAA for over 20 years and lives in New Jersey, working for Sprint CapTel.
My Brother, Doug!
I was SO excited when my brother decided at the last minute to come to the Convention for one day! Doug and I are the only ones in our family with a hearing loss. He came specifically for the Hair Cell Regeneration Symposium on Friday, attended some workshops and visited the exhibit hall. He would have liked to have stayed another day but was around long enough to experience what HLAA has to offer and meet some HLAA friends.
Just me and my Hubby!
Last, but not least, is a picture of my other half! The Convention was close enough to home that he was able to come over for one day. It was such fun to introduce him to the Convention experience and share how much it means to me. He also brought a friend from church, who wanted to get some information about putting in a loop system.

I don't think I stopped smiling for days! My face hurt from all the smiling, laughing, and talking we all did! But it was such a wonderful and uplifting time. I have more pictures to share but will save them for another post since it is challenging to upload so many at one time. Until then, enjoy!

Another Friend Goes Bilateral!

Another friend has taken the step to bilateral hearing! I met Becky a few months ago because she had many questions about having two cochlear implants versus one. She traveled to Nashville on Sunday from Knoxville with some members of her familly and had her second CI surgery yesterday! And is doing amazingly well. Check out her blog here and give her some encouragement! She will be activated in three weeks on June 9th!

Happy Birthday To My Best Friend!

Happy Birthday, Steve!

Today is his birthday but he is not here to celebrate with us. We usually go out to eat and have presents for him. He left on July 5th for a business trip to Latvia and Bulgaria so I put a card and present in his suitcase while he was packing. He returns home at the end of this week. Two weeks is just too long to go without my best friend!

I did arrange for him to have a surprise celebration today and he emailed me to tell me about it. We have been to Latvia several times for mission trips and business so we have some good friends there. The church that he went to this morning sang "Happy Birthday" to him and gave him several gifts. They also had a reception afterwards with cake and tea. I also arranged for our administrative assistant, Irina, to take him out to eat after church. So she, our engineer, Sergey, Steve, and our friend & lawyer, Apolonija, went to the Macaroni Noodle Bar for lunch. Apolonija needed to leave early so he, Sergey, and Irina had tea at the Apsara Teahouse afterwards. He was pleasantly surprised and had a nice day. I'm glad.

I did talk with him on Skype yesterday morning. I have some great headphones and can hear him as if he were sitting next to me. There was a slight buzz in the background but I was able to understand most of what he said. And he types on the computer if I miss a word, much like an instand message. He has been sick with a fever and deep cough so I've been a little worried about him. But, he does have people taking care of him for me!

I miss you, Steve. Hurry home so we can celebrate YOU!

Jennifer's Post

Steve and I are in Texas visiting our son, Jason and met our new "daughter in law to-be," Jessica. What a sweetie she is! I will write later when I get home but for now, read Jennifer's recent post that she wrote. She says it all. . . go HERE and read her comments, too.

OKC Pictures

Joyce, Jennifer, Mike, & Laurie in the Advanced Bionics booth.

Jennifer, Laurie, Susan, and Dr. Norm on the Riverwalk in Downtown OKC.

Dr. Norm, Jennifer, & Laurie at the Banquet Reception.

Mike Royer & Joyce (Punky) at the Closing Ceremony Banquet

A CI Moment

I'm sitting here in the kitchen with my laptop computer and heard a faint crinkling type noise near me. You will not believe what it was. . .it! was! a! FLY! walking! on! tin! foil!!!! We had just finished eating dinner and the tin foil was laying on the counter. It took Chris and I a little while to locate the source of this unusual sound. Chris couldn't believe that I could hear it! I've also been hearing the water run into the icemaker in the freezer. I always notice the ticking of the clock on the wall when I'm in here. Kitchen sounds.

I'll be busy the next few days. . .am leaving tomorrow after I get off work to go with Marissa for orientation at the University of Tennessee - Chattanooga. We'll be back on Friday. And then, starting on Sunday, we'll have guests here in our home from Latvia for a week. The Latvia Youth Choir is coming to the U.S. on tour and the director, his wife, and son will stay with us. Should be a fun and busy time!

And then. . . on June 21st, I will get on a PLANE for Oklahoma City, Oklahoma for the HLAA Convention with Jennifer! I am so ready for a break and a little mini-vacation. . .