Bells Clanging and Ringing!

It has been 2 days since my cochlear implant was activated.  I have gotten somewhat used to hearing all the clanging and ringing in my ear, though it's still very unpleasant.  I'm constantly telling my kids to talk quietly.  When people talk or when there's any kind of noise, my hearing aid hears those sounds at the same time my CI makes those weird sounds.  It makes it harder for me to understand speech, so I have to really read lips.  It's like trying to hear someone talk while there's a bell clanging in my ear.  Yikes!!!  But I am still very determined to get through this stage.  My audiologist assured me again this is normal and it will pass.  My brain still has a lot of learning to do.
I had an appointment with Dr. Beatty early yesterday morning.  The doctor said my incision is healing very well.  It's still a little swollen and it could take up to 6 months for it to completely heal.  My ear looks like it has drooped since the surgery.  He said it will eventually go back to the way it was.  I will need to go back for a check-up in February.
Allan, my little joker, wanted to play a prank on Dr. Beatty.  He offered him a stick of gum and it "snapped" with a fake roach on the other end.  Dr. Beatty knew it was a prank, but he played along.  He's such a kind man.  He said that on his way home from vacationing in Park Rapids, which is about 45 minutes north of our house, he thought about making a house call to see how I was doing.  He drove through Verndale, but he didn't know where we lived.  I thought it was so nice that he thought of me.
My second programming or "mapping" appointment with Dr. Peterson took 2 1/2 hours.  Fred and the kids sat out in the lobby the whole time.  I felt bad they had to wait that long.  They were such troopers!  This is probably the longest appointment I'll ever have with her because she had to show me how to work all the little parts to the CI, in addition to the mapping.  It's a fancy device!
She did the same thing she did with me on the first day.  She wanted to increase the range of sounds as much as possible without going over the comfort level.  She said its going to be very loud, but then it won't be so loud as I get used to it and I will be able to increase the volume and distance of sounds as I get more comfortable.
Fred took a video of my activation.  My parents recorded the activation through Skype so they also have a video.  Their video is rather long so I will post Fred's edited & shorter version for now.
I will keep you updated with my progress!  Thank you all again for your prayers!  I'm relying on God more than ever!
"The Lord is my strength and my shield; my heart trusts in him, and I am helped.  My heart leaps for joy and I will give thanks to him in song."  (Psalm 28:7)

Cochlear Implant Activation!

We woke up early this morning, had breakfast at the hotel and then headed over to Mayo.  My appointment was at 8am.  I had to wait for 30 minutes before my audiologist was ready to see me.  I was so excited, I had butterflies in my stomach!  I didn't know what to expect.  I knew that it might be difficult, based on what my friend Laura went through during her activation.  It took her a couple of weeks before she could really understand speech.  She said that her kids sounded like chipmunks and her husband sounded like Darth Vader.  So I guess I was expecting my kids and Fred to sound really funny!  I told the kids they might sound like chipmunks to me, and they were really hoping that they would!  Ha!!

So anyway, I sat down in Dr. Peterson's office, and she attached the processor to my head.  I was wondering if the magnetic part would hurt, if it would pull on my skin.  That was not the case at all- I didn't even feel it.  My incision is still sensitive, but the processor didn't bother it too much.

She attached the wire from the processor to her computer for programming- or "mapping".  She started an intensive test to set the 22 electrodes (they are what stimulate the nerve endings in my cochlea) at the right volume and tone.  They all have to flow together smoothly.  I didn't even know when she started the test- I didn't know what to listen for.  I was supposed to tell her how many times I heard a sound.  I told her I didn't really hear anything but there was pulsing in my head.  She said that is the sound I needed to listen for.  I was surprised because it was totally different than what I was expecting.  See, I'm used to sound coming in through my ear with the hearing aid.  The sound was coming from a totally different route, so it didn't register as "sound" to me.  So once I knew what to listen for- the pulsing in my head- I had to tell her how many times I heard the sound.  She did this with each of the 22 electrodes, so it took a while.  It was a very exhausting test.  Once she completed the "mapping," she said she was ready to turn it on!  I sat with anticipation, thinking that it would sound different than the pulsing I heard during the test.  

She turned it on, and started talking, and she sounded horrible!  She sounded like a bell clanging in my head.  Then I started talking, and it sounded even louder.  Oh, it was very unpleasant!  Then Fred started talking, and I had to shush him because he was too loud!  I had mixed feelings.  I was excited I could hear sounds, but they did not sound anything like people...or chipmunks or Darth Vader!  Everyone sounded the same--like bells clanging and ringing.  Dr. Peterson said this is very normal at the beginning.  It will take time and perseverence to let my brain adjust to the new sounds.  

If Dr. Peterson told me not to wear my hearing aid on my other ear, I would be totally lost.  The volume setting is very low- but is loud to me.  But I cannot understand speech at all--not yet.  I'm so glad I can wear my hearing aid.  Dr. Peterson said it would be good for me to wear my hearing and continue to lipread.  She said my brain will learn quickly what the sounds are with help from my aided ear.  My aided ear will help "train" my CI ear.  So I will need to be patient!  I am still very excited about hearing better down the road.  It's kind of like a race.  You can't just start running to win a race without training first.  First you have to train and then you can race to try to win the prize.  I need to continue to wear the CI even though its making everyone sound like bells.  I know that the brain will eventually recognize speech.  Hearing speech and understanding is my prize at the end!  Just gotta keep training!  

I didn't realize just how deaf I was in that ear.  I have fooled my brain into thinking that I can hear better than I really can with hearing aids and lip-reading, ha!!

During the whole session, my parents were watching live through Skype.  We had our laptop set up right in front of me, so they had a full view of my activation.  They wanted to be here so badly, but they flew up here from Atlanta when I had my surgery 3 weeks ago.  We are so thankful that technology has enabled us to connect even though we are 22 hours apart!

You would think that after getting the CI, I would want to stay in a quiet place all day.  Well, after taking a short nap to rest my tired brain, we did something so ridiculous.  We went to Chuck E. Cheese!  With all the loud beeps and music and alarms and kids laughing and screaming!  Laura thought I was absolutely NUTS!  Haha!  I could have taken off my CI, but I wanted to stay strong and keep it on.  I kept it on the entire 2 1/2 hours we were there!  I was so tempted to tear that thing off, but I didn't!  Eventually all the bells "clanging" in my head blended in with all the noise, and then after a while I got used to it.  I didn't even get a headache!  

It was a joy to see my kids so happy.  We wanted to let them have one last hoorah before school started next week.  Fred and I even had a basketball shooting contest...and I beat him everytime.  :)

Tomorrow morning I have an appointment with Dr. Beatty, my surgeon.  He will check my ear and my incision to make sure it's all healing properly.  Then I will meet with Dr. Peterson again at 2pm for another long mapping session.  She will increase the volume tomorrow.  Maybe I will hear some speech tomorrow, but I don't expect to.  I will need to come back here to Mayo several more times for mapping and adjustments.  

I am very hopeful and still very excited!  I will persevere and ask God to help me.  "I can do all things through Christ who gives me strength" is my verse during this time!!  (Phil 4:13)  God is so good.  I'm so thankful He allowed me to have this done.  I want to give Him all the glory and praise through my whole experience.  I will give Him glory and praise even if its hard!!  I look forward to the day when I can hear music and sing wholeheartedly to Him!  It will come!

Big day tomorrow!

I am sitting here in our hotel room and I can't sleep!  I am so excited about tomorrow!  My activation appointment is at 8am (Central Time).  

We decided to bring Allan, Gabrielle & Luke. We wanted our children with us so they can experience their mommy hearing new sounds for the first time.  :)  Fred will be taking video of the activation.  I don't really know what to expect.  I've heard that the experience is different for everyone.  It might be wonderful, or it might be awful at first.  My brain will need time to adjust to the new sounds.  It could happen the first week, or it could happen in a month or 6 months from now. The doctor said that it is a big advantage that I have worn hearing aids for a long time.  So it won't be a total shock for my brain.  It is harder for someone who has never heard anything before to adjust to the cochlear implant (but it's possible- it just takes longer).  

You are probably wondering what the difference is between the hearing aid and cochlear implant.  Hearing aids amplify sounds that enter the ear.  Cochlear implants transform sound into electrical energy which stimulate the hair cells in the inner ear.  It is both internal and external.  I had the internal put in 3 weeks ago.  Dr. Beatty cut a 3 inch incision behind my ear and drilled a tiny hole through my skull to put a thin electrode into my cochlea in the inner ear. The electrode is what livens up the hair cells.  This electrode is attached to the cochlear implant just inside my skin.  

So tomorrow I will get the external processor.  It looks like a hearing aid which will hang behind my ear, but without the ear mold.  This is where sound will enter.  Sound will then travel through a small wire (called a transmitting coil) that has a magnet on the other end.  This magnet will connect to the  internal device through my skin.  So the magnet will hold the device to my head, and I will be able to take it off whenever I want to.  It will all be covered up by my hair.

I will have a lot to learn tomorrow.  Not only will I get activated, I will need to learn how to use the processor.  It comes with a remote with different programs on it.  The different programs are for cutting out background noise, TV,  phone, music, and etc.  The remote looks like an Ipod.  I will have to be careful not to leave it out or my kids or Fred will probably change the programs to mess with me!  :) 

I appreciate all your kind replies to my blog.  You all have touched me with your words of encouragement and excitement for my new journey!  I will let you know how it goes tomorrow!!!

The big decision

Last fall, I saw a video that went viral online of a young mom who got a hearing implant and cried as she heard for the first time.  It really touched me.  I kept up with her in the news following her activation.  She was on Oprah, and she was given money to pay for her surgery as well as more money for surgery for her other ear.  Her implant was called the Esteem, and it is very different than the cochlear implant.  It is all internal while the cochlear implant is internal and external.  I started looking into this but soon gave it up because it costs $30,000 and it is not covered by insurance due to the fact that it is not yet FDA approved.  

In December 2011, I went to an audiologist to have my hearing tested and have my hearing aids reprogrammed to be louder.  As hearing aids age, they lose power over the years.  My hearing aids are over 5 years old, and I've had them refurbished to try to keep them working longer.  The audiologist told me that my right hearing aid was not working good and it was time to get a new one.  She told me that I would probably be a good candidate for a cochlear implant- the first time a doctor has ever told me that.  She recommended that I be tested at Mayo Clinic.  I started reading more about cochlear implants after this appointment, but I wasn't sure how I felt about having a big device sitting on my head and having what hearing I had left completely cut off.

In January, my parents went to an Esteem seminar in Atlanta to learn more about it, and they took my most recent hearing test results with them to see if I was a candidate.  They found out I was not because my hearing was too severe/profound.  While at that seminar, they ran into a friend of my close friend Laura Martin.  This friend told my parents that Laura was looking into getting a cochlear implant.  I had been mulling over it when my parents told me about Laura.  I couldn't believe the timing!  I thought, how great it would be to go through this together!  (Laura went on to be tested and was approved.  She had her surgery in June.)

So I thought about it some more and prayed.  Then I decided to take the next step and contact Mayo Clinic.  They scheduled a series of appointments for May 15 & 16.  These appointments would determine if the cochlear implant would benefit me better than hearing aids.

I told a close friend, Brenda Finch, here in Verndale that I was going to Mayo to see if I would be eligible for a cochlear implant.  She looked at me with big, wide eyes and said that she has been praying that I would get a cochlear implant since the first day she met me last summer!  She said that I reminded her of one of her heroes, who happens to be my hero as well, former Miss America Heather Whitestone.  She was the first deaf Miss America, who was crowned in 1995.  Brenda has been following her in the news over the years, and knew that she had gotten cochlear implants several years ago.  So when she met me, she felt led to pray that I would get a cochlear implant!  Isn't that wild?  I took that as a confirmation from God.

So Fred and I went down on May 15.  I was tested, and the audiologist could not believe how well I functioned with so little hearing.  She could not believe how well I could speak for a hearing-impaired person.  Then I met the surgeon.  I liked him immediately.  He reminded me of a doctor who makes house calls in Mayberry.  He looked at me in the eye and said that I would definitely benefit from the cochlear implant.  It would help me hear better than hearing aids ever could.  I felt totally at peace, and knew that getting this surgery would be the right thing to do.  

The next step was to have an MRI done so the doctor could see the anatomy of my ears.  My whole life I always thought that the reason for my deafness was because my ears were damaged from forceps that were clamped over my ears during birth.  That was just a theory.  When my doctor examined the results of the MRI, he said that my cochleas were not completely formed.  Normal cochleas have 2 1/2 turns, like a seashell.  Mine had only 1 1/2 turns.  My condition is called Mondini's malformation.  This was very interesting to me!  I had no idea.  It was interesting to see my brain and my inner ears on the screen.

So, after waiting a couple of months for my insurance to approve of the surgery, we scheduled it for August 3!

I believe that this is the miracle that we were praying for. 

In my next post, I will explain what exactly a cochlear implant is, and talk about my surgery.

Understanding who I am

Two weeks ago, I went to the Mayo Clinic in Rochester, Minnesota to have a cochlear implant.  When we moved to MN from GA a year ago, I never dreamed I would be getting a cochlear implant at one of the best hospitals in the country- which is just 4 hours away!  I never thought I would ever have a cochlear implant at all.  I never really looked into it because I always thought that it was only for people who could not hear at all, even with hearing aids.  But apparently technology has greatly improved the last 10 years!

I was born deaf.  My parents did not know I was deaf until I was 6 months old.  They just thought I was a very good baby, so docile and calm. My family went to see the original Star Wars movie when it first came out in 1977.  My mom held me the whole time and would cover my ears during the loud parts...I never budged!  I slept through the whole movie.  They were very amazed I didn't even throw out my arms like babies do when they are startled.  When I woke up from my naps, my mom would talk to me, but when she came in view I would be startled to see her.  My family would clap their hands or drop something and I wouldn't jump in surprise.  They became concerned so my mom took me to have a hearing test done...and I didn't pass.  They were devastated.

 I was fitted for hearing aids at 9 months old, and when they were turned on...I had the biggest smile on my face when I heard for the first time.  I will need to find that picture of me smiling and post it on here!
I went to the Atlanta Area School for the Deaf when I was 2, and was taught how to sign.  But I also tried to talk.  I am the only one in my family who is deaf, but I could see their mouths moving and hear them making sounds with my hearing aids.  So of course, I would try to mimic them.  A speech therapist at the school tested me, and determined that it would be more beneficial for me to learn to talk than to use strictly sign language.  So to make a long story short, I had speech therapy for years and did not continue to learn sign language.  I was mainstreamed from the deaf school to a public school when I was 6....beginning the transition to my own "world"...between the deaf and hearing worlds.  I was not completely deaf that I could not hear with my hearing aids.  I didn't learn enough sign language to communicate with deaf people, but I didn't know many deaf people who signed after I left the deaf school.  I learned to lip-read to go along with what I could hear people saying.  I relied on lip-reading and hearing with my hearing aids to communicate with people.  I did the best I could trying to live in a hearing world.

If I turned around and someone was talking to me, I might hear them talking but not know they were talking to me or what they were saying.  It is hard for me to hear low and high frequency sounds, but I can hear almost everything in between.  I can hear vowels in words, but not most of the consonants.  For example if I turned my head and someone said "cat," I can hear the "ah" sound, but not the "c" or the "t" because they are high frequency sounds.  It could be "bat" or "mat" to me.  So a lot of the time, it's guesswork for me when people talk to me.  I can usually figure out what they are saying if they talk in sentences.  But if they are talking about something totally random or too fast, I am lost!  I am also lost when someone has a long mustache or if they smile while they are talking.  Or if they talk too low or if they don't move their lips or when they over-enunciate their words so it looks like they are saying 2 or more words instead of just one.  So usually by the end of the day I was exhausted because it's a lot of work to listen and try to understand what people are saying.

This might be a paradox, but I am thankful for who I am.  God doesn't make mistakes.  He allowed me to be born without ears to hear.  He has a purpose for me.  I have seen him work in my life in so many ways.  He has allowed me to hear with hearing aids.  I am thankful for that.  He has allowed me to be a good lip-reader, and I am thankful for that!  Being a good lip-reader has helped me to be a good listener.  I am able to read people's expressions and empathize with them what they are going through.  I am not sure if I would be this way if I could hear.  Who knows?  But I don't get angry at God for making me deaf.  I will take whatever He gives me and do what I can to give Him the glory.  Sure, I have my ups and downs.  I share my frustrations with him, and ask him to please help me understand people!  He knows how hard it is for me at times.  He knows how lonely I get sometimes, especially in group settings or when people laugh and I have no idea what they are laughing about.  I have prayed and asked him to help me with communication problems.

About 2 years ago, Fred started praying for God to heal me.  The elders in the church started praying over me that God would allow me to hear.  I believe that God allows miracles to happen, even today.  So I believed that one day I would hear.  Whether it happened while here on earth or in heaven, I know that I will hear again.  Well, I will share in my next post how it came to be that I decided to get a cochlear implant!