A Spooky CI Moment...

Here is a question for you:

If a car alarm goes off in the garage and no one is around, does it make a sound?

The other day I was working in my office upstairs (I work at home for our consulting business) and heard a car alarm go off. I had my window cracked a little bit so I could hear the birds and thought that maybe it was my neighbor's car going off but didn't see anything or anyone. Then it stopped a few seconds later.

I continued working for a few more minutes.....then I heard it AGAIN. Before I could get up from my chair to investigate, it stopped. Now, whenever I hear an unusual sound or one that confuses me, I find someone to tell me what it is. But this time I was alone in the house and had to figure out for myself this time. I thought that maybe Chris had come home for something and was in the driveway messing around, teasing me. (As a mother of boys I've had my share of "pranks" and "jokes" played on me before!)

Then, I heard the car alarm go off AGAIN! And this time it stayed on (and Riga was going crazy barking and pacing in the kitchen). So, I got up and went downstairs because it sounded like it was coming from the garage. Sure enough, it was coming from MY CAR and the lights were flashing on and off, all by itself. No one was around, nothing was touching the car or had bumped it, and I was pretty sure the keys were in the house. I just stared at it for a few minutes with my jaw open trying to figure out what to do. As I started to turn around to go back inside to locate my keys, the darn thing shut off by itself.....RIGHT IN FRONT OF ME!

By now I was really starting to get confused (and a little spooked) because this had never happened to me before and I was alone in the house. I sent Chris a text message to his phone and told him what was going on. He said that maybe my door alarm system was going bad and that maybe I should call the dealership to get it fixed. I found my keys on the hook in the kitchen where I usually hang them and I heard the car alarm go off AGAIN! And it shut itself off about 30 seconds later. I took my keys out to the garage, pointed my keys at the car, and pressed the buttons a few times to see if I could deactivate the alarm. The car stayed quiet after that so I went back upstairs to continue working.

But, later, I transferred Steve's laundry from the washer to the dryer and found my EXTRA car key in the bottom of the washer! He must have left it in one of his pockets! He is usually good about emptying his pockets and almost always puts the car keys in the same place in his office. So, while the key was being "washed" it must have set off the sensors to activate my car alarm! I just had to laugh and realized that was why the car alarm was being set off. I immediately took the key and put it in my cochlear implant dryer to dry it out and keep it from being damaged any further. We had just gotten new keys for my car and they were not cheap. I've used my Dry-N-Store for my CI to dry cell phones before. If it can "dry" a $7,000 cochlear implant processor, it can certainly dry an electronic key or cell phone which costs a lot less!

I was relieved that I was able to figure out why my car alarm was going off. I was afraid it had gone off in the middle of the night, waking my neighbors, when I wouldn't be able to hear it at all. And no one would have been able to get a hold of me to tell me to shut it off. There are times when I don't have my processors on and do not hear a thing, like when I'm alone, in hotel rooms, fixing my hair, etc. Which brings me to another post later regarding my thoughts about considering a hearing service dog in the next few years for my next dog....

Four Years Ago Today...

Four years ago today my first cochlear implant was activated...

Four years ago I heard the sound of a little boy's voice as he talked to his mom....sounds I had missed when our children were little...

Four years ago my four children surprised me with my very first iPod.... (I'm on my second one now!)

Four years ago I heard the beautiful sound of 19,000 women singing in acapella, the faint sounds of 19,000 Bible pages turning in complete silence, and 19,000 women worshipping together at a Beth Moore Conference in Knoxville...

It is hard to believe that I've been on this wonderful "Dance with Sound" for the last four years. I never dreamed it would be possible to hear this well in my lifetime, going from a severe/profound hearing loss to normal hearing in both ears. (I went bilateral with my second ear in January of 2007.) I still continue to discover "new" sounds in different environments but not as frequently as I did in the beginning. Getting a cochlear implant (or two) is not a "quick fix" to a hearing loss and it took much hard work and perseverance on my part to get to where I am today. I spent over a year in therapy just learning to hear all over again because I never heard those high pitched sounds that are such an important parts of speech. I had family members read to me and practiced listening to books on tape. I practiced on the phone even though I dreaded it. But it has all been worth it worth it and I'm still "practicing" today.

My cochlear implants have given me a new lease on life and connected me to another world of deaf and hard of hearing friends from all over the U.S. and the world, through the Hearing Loss Association of America (HLAA) and through this blog.

One of the best parts of this journey is being able to hear the precious & sweet "little voice" of our grandson! And it has increased my faith....for NOTHING is impossible with God! He always has a plan...in His timing...if we only ask...

And I couldn't help but smile and say "Thank you, Lord" as I listened to the sound of the rain above me in church this morning as we sang "Grace Like Rain...falls down on me.....Alleluia!"

A Cochlear Implant Journey Video

This is a must see video! It describes the hearing loss journey of Josh and Sam Swiller, their cochlear implant surgery, activation, therapy, and life afterwards perfectly....and is almost identical to my hearing loss experience and results. It is captioned, too!

What a gift technology has given to the deaf and hard of hearing....Enjoy!



Soundproof Trailer created by filmmaker Rebecca Haimowitz.

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)