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!

A Must Read....Jennifer's Post

My friend, Jennifer, posted a very moving and poignant post yesterday.....it is a must read! She shares her bilateral cochlear implant journey from her heart at SURROUND SOUND...

Part II - The People I Meet - 2009 HLAA Convention

Here are a few more pictures from the Convention. I don't want to leave anyone out but I didn't get pictures of all the new people I met there.Barbie & Ken (Sunny & Captain Mark Brogan)

I finally got to meet Mark's wife in person at the Convention. She is a sweetheart! And is so supportive and understanding of Mark's hearing loss. They make the cutest couple, don't you think?!!!

Sandy Cohen, Director of the Library Services for the Deaf & Hard of Hearing at the Nashville Public Library

Sandy has a BIG heart for the deaf & hard of hearing. She has worked hard for 10+ years at the Nashville Library to make sure that the deaf & hard of hearing have access to EVERYTHING they need. You name it, she has it. The Nashville Library Services for the Deaf & Hard of Hearing is the largest resource on this side of the Mississippi River. If you are ever in Nashville, this is a "must-see" activity, as well as the rest of the library, which is a gorgeous facility in the heart of Downtown Nashville.

Thom Roberts and I

Thom is the Executive Director for the TN Council for the Deaf & Hard of Hearing, which meets four times a year. I met him two years ago when he asked me to serve on the Council with him. He is also hearing impaired and amazes me with all that he does!

Valerie, Jenna, & I

Valerie and Jenna are mother & daughter and this was their first convention experience. I love these two ladies! Valerie has bilateral cochlear implants and got them AT THE SAME TIME several years ago (she's a brave woman)! Jenna is so supportive of her mom and reminds me of how thoughtful and considerate my own kids are for me with my hearing loss. I met them in Gatlinburg (which is only about 40 minutes from my house) last year when Jenna had a dance competition. Valerie writes a blog at Tales From A CI Gal about her CI journey.

Karin Robertson

I met Karin a few months ago when she started coming to our HLA of Knoxville meetings. I found out later that she was a past President of our chapter! She is still involved with the deaf & hard of hearing and works for the Tennessee School for the Deaf in Knoxville.

Me with Zac LaFratta

I met Zac last year at the HLAA Convention in Reno. He is going to Gallaudet University to become an audiologist. And he has a hearing loss as well. There is no limit to what anyone can do! There were several audiologists and hearing professionals at the convention, which amazes me because I thought one needed to "hear" in order to be in these careers.

Rosemary Tuitte and I

Another amazing woman! Rosemary is a regular participant in the HLAA CI Chat on Monday nights. We've chatted online and traded emails so it was such a delight to meet her and her hearing dog, Janet.

Jennifer Thorpe, Jeffrey Johnson, & Mike Turner

This picture was taken at the Volunteer Dinner the night before the Convention. Jennifer, Jeffrey and I volunteered (along with several others) at the HLAA Convention Table in the Nashville Airport the day before the Convention started. I met Jeffrey briefly at the Tennessee Walk4Hearing in Chattanooga the month before. We had a great time talking while assisting and greeting people flying in for the event.

Mike Turner and I have been friends for a while and he spoke at one of our chapter meetings about videophones and Hands On Purple VRS (Video Relay Service) about how the deaf, hard of hearing and even the hearing customers can have access to high quality communication services through video relay.

Me with Mike Turner's Wife, Colleen

Here I am with Mike Turner's better half, Colleen. We met for the first time this past February when I was in Nashville for a Council meeting and hit it off right away. I felt like we had been friends for years! Colleen was at the Convention every day, helping Mike with his booth in the exhibit hall. Colleen & Mike both have hearing losses and make a great couple.

Arlene Romoff and I

Arlene wrote the book "Hear Again" about her cochlear implant journey and how she regained her life back in the hearing world as a late deafened adult. This was our first meeting!

Deb McClendon and I at the Birthday Party Celebration

Deb & I also met last year in Reno. She is a bilateral cochlear implant recipent and is a hoot! She is very involved with her chapter in the San Diego, California area.

Tom Vorjohan The Magician

Tom provided some magical entertainment for a day in the exhibit hall. His tricks were incredible and amazing! He is also my neighbor and has a wonderful family. I always ask his kids to do a trick or two for me when they come to my door selling fund raising items for school! It must be fun to grow up with a magician in the house!

AND.....ELVIS!!! (Ken Arcia)

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!

The Wellspring...: Ear number two!

Below is another blog that I like to read. Some of it is hearing related but mostly concentrates on their family and pictures. This couple adopted their daughter from Quito (I think) and she went bilateral today! Click here to see more! The Wellspring...: Ear number two!

The Main Event of the Year.....

....is one week away! It's the Annual HLAA Convention 2009 in Nashville, Tennessee from June 18th - 21st at the Gaylord Opryland Hotel and Resort. Ever since Jennifer and I went to our 1st HLAA Convention in Oklahoma City, Oklahoma, we promised ourselves that we would not miss another convention. It was a life-changing experience for both us to meet with other people "just like us." And for the first time in our lives, it was a "perfect world" because we didn't have to struggle to hear or understand what was going on around us. Every single session and event is transcribed, captioned and interpreted. I, along with many others, look forward to this event and we are ALL getting excited about being under one roof again, seeing old friends and making new ones!

This year promises to be a FANTASTIC convention. I've "heard" that over 400 rooms are registered and that doesn't count the persons staying in nearby hotels or who live in or around Nashville. The workshops and seminars are wonderful and very informative. The Opening night features Vint Cerf, from Google who is considered to be the "Father of the Internet." He also has a hearing loss and his wife, Sigrid, has bilateral cochlear implants after wearing hearing aids for 50 years. I cannot wait to hear their stories and get their autographs on my HLAA magazine!

The Convention is also the 30th Birthday Celebration for HLAA and there will be a Birthday Party on Friday night. My neighbor, Tom Vorjohan, is part of the "entertainment" for the party and promises to be GREAT!

There is also a Research Symposium sponsored by the Deafness Research Foundation where they will be giving an update on the Latest Hair Cell Regeneration Research. My brother, Doug, is very interested in this research and is traveling from Ohio specifically for this. I'm so excited that he is coming and cannot wait to introduce him to the Convention experience and to my friends!

The Exhibit Hall is something to see & experience, as well. One can see and try many different assistive devices, cell phones, telephones, gadgets, weather alerters, fire alarms, and other new products and get a wealth of information on how to deal with and cope with hearing loss. Hearing aid and and cochlear implant manufacturers will have booths, too, for support and information. You can find out more about the exhibitors HERE! Even though the registration has closed online, anyone can still come and register in person for a day or two on site. And, entry to the Exhibit Hall for visitors is FREE with a pass that can be obtained at the registration desk. See http://www.hearingloss.org/ for more information.

An offsite trip to the Grand Ole Opry is planned, too! And if there is time, there is much to see and do around Nashville. I would encourge anyone to stop by the Nashville Library Services for the Deaf & Hard of Hearing in Downtown Nashville to see the Deaf & Hard of Hearing Section. Friday morning would probably be the best time for this trip. Due to recent budget cuts, the LSDHH library is only open from Mondays through Fridays from 9 a.m - 2 p.m. or by appointment. Call the director, Sandy Cohen, at the library at (615) 862-5750 for an appointment to see this particular section. It is WORTH the trip!

If you cannot make it, you can keep up with the Convention through the Convention Blog starting on June 18th. Abbie Cranmer, is the featured Blog Host this year and she is absolutely wonderful. She was one of my roommates last year in Reno and has a great sense of humor!

I plan to be there early on Wednesday morning at the Nashville airport to greet anyone coming in that day! And will work at the Convention Booth until 4 p.m. I'll be the one with a big smile on my face (and will be wearing RED, my favorite color!) Hope to see you there!

P.S. If you are coming, leave me a comment or email me at ldpullinsATgmailDOTcom so I can look for you!