I am loving my cochlear implant!

This blog is way over due!  I have been blogging in my head with every intention of getting it down on here.  I hear something new, and I say to myself, "Oh I've got to put that in my blog!"  Well, I've been doing this for more than 3 months!  I'm so sorry for leaving you all hanging about my progress!

In my last post, I was feeling frustruated about the static-y sounds my cochlear implant was picking up and background noises were drowning out people's voices.
I went back to Mayo on November 16 for another mapping appointment- this time with a different audiologist.  I was very VERY pleased with the new one!  She took the time to listen to me and took notes on what I was saying.  Then I was hooked up for the mapping.  I thought it would take 2 hours, like the other appointments.  But, no, she mapped me very quickly and kept the computer off so I couldn't see what she was doing.  This made a difference because I had to really focus on what I was hearing rather than what I was seeing.  After the mapping, it sounded SO much better.  She told me to walk around the hospital, go to the cafeteria where it was the loudest, and then come back.  I was pleased with the adjustments she made.  The sounds weren't annoying, and she decreased the high pitch sounds.
 After setting the map, she wanted to do a test to see how well I can hear- just with my CI and without my hearing aid.  I thought for sure I would not do well because it was still so new.  She gave me a paper with 20 sequences of 4 words.  Then she covered her face while she said a word from each sequence.  I had to tell her what she said.  I was able to tell her what word she was saying without reading her lips!  I got 100% right on that test!  She was very surprised I did so well- so was I!
She gave me another test, this time 20 sequences of 4 sentences.  I had to tell her which sentence she was saying from each sequence.  She said this was going to be difficult, but do the best I can.  Well...I repeated each and every sentence she said!!  I got 100% on this test!!!  She could not believe it.  She said that when she looked at my profile before I came in for my appointment, she expected someone who relied wholly on reading lips, because my hearing was so bad.  She told me she could not believe how well I could speak, and that she has never met anyone who was profoundly deaf and could speak as well as I could.
She wanted to do one more test, this time with no paper for me to look at.  I had to totally guess what she was saying.  She said a lot of common word phrases, such as "good morning" or "what is for lunch?"  I got about 75% correct!!  She was flabbergasted!  It was so much fun doing these tests with her because her reactions really spurred me on and encouraged me.  She told me that it will definitely continue to keep getting better.  She said I won't ever get perfect hearing, but I'm doing better that she thought I would- and so early on!  Whoo hoo!!
This was almost 2 months ago.  I have gotten so used to wearing my CI that I can't imagine being without it.  It complements my hearing aid so well.  My hearing aid is still better for picking up "whole" sounds but my CI rounds it up with clearer and sharper sounds.
I still have a hard time hearing people in a noisy place, but it is not nearly as bad as it was.  Sometimes I can hear what people are saying in the other room if it is quiet enough.  I was at a friend's house and I kept hearing a clicking sound.  I realized that it was from their dog's nails clicking on the wood floor.  I could even hear the tags clinking when he shook his head.  I can hear the beeping sound in my car if I forget to turn off my headlights before getting out.  I can even hear people scratching their heads or rubbing their arms if they are cold- if I am close enough!  I heard my dad scratching his head and I told him I could hear him doing that- he looked at me like I was kidding. Ha!! Pretty exciting to hear things I've never heard before!
Fred said that he can tell that I have more confidence and that I am speaking a little better.  It really helps to hear feedback from other people if they have noticed any change.  Thank you to all who have asked how I was doing and prayed for me.  Starting out was hard, with many ups and downs.  I am so glad now that I had the surgery.  It is definitely worth it!!

One month since cochlear implant activation

The last two weeks flew by before I had a chance to sit down to give an update.  I went to the Mayo Clinic on Sept. 14 for my check-up and mapping appointment.  The next day I had to take my 5 year old son, Luke, to the ER because he was coughing and having trouble breathing.  He was probably allergic to something in the air (this is harvest time up here- we live in a farming community) and had a reaction.  The doctors put him on prednisone and antibiotics and a nebulizer.  He is doing much better, but still has the occasional cough.
Fred's mom came up here a few days after.  She took care of the children while Fred and I went down to Dallas, TX for 6 days for a pastor's and wives encouragement conference, which happens to be at our brother-in-law's church.  Fred's sister and her family live there, and it was such a treat to visit with them.
We just got back 3 days ago.  So it's been a whirlwind for me with adjusting to the cochlear implant, working, Luke's ordeal, getting ready for our trip, spending time with family, and school events.

My appointment at the Mayo went well.  I told my audiologist how everything was so loud and had to resist the urge to take the CI out at times.  But I told her I was able to hear sounds so much better.  I told her about the crickets and being able to hear the ''S'' sound.  She did more mapping and turned down the volume of different tones a bit.  She changed the settings on my remote so that I could control the background noise when people talk to me.  After she finished the mapping, she did a hearing test to see how I hear with the CI as compared to my hearing test done in May with my hearing aid.  I could hear just about every sound on the test and did WAY better than I did with my hearing aid.  That was exciting to me!

However.  I find that I have an even harder time trying to understand people.  I think its because the middle tones are too low and the higher sounds are louder than the sound of people's voices.  So it seems like I can only hear people when there's no noise around.  I was trying hard not to feel discouraged the last 2 weeks.  Especially at school and at the conference we went to, where there are many people and conversations going on.  When there's a lot of noise, it all sounds like a loud hum and its very distracting when I'm trying to understand the person talking to me.  I have to rely on reading lips even harder.  So I am even more exhausted by the end of the day.

I was very pleased with my new "map" at the Mayo, but after I got home I realized I didn't like the new map.  It's hard to know if it's going to effective when it's done in a quiet room.  I think I'm going to bring my family to the next appointment so they can all talk at once and see how I do when one of them talk to me.  My next appointment is not until November, but my audiologist said I can change it to earlier if I want to.

I had a great time at the conference, even though I had a hard time hearing.  Each year, the church in Texas invites 10 pastors and their wives to the conference to encourage them and lift them up so they feel refreshed and recharged by the time they go back home.  Fred and I were honored to be one of the ones they chose this year.  It was a real blessing to be there.
I especially enjoyed listening to the guest speaker's wife during the women's sessions.  She was easy for me to understand (we were in a quiet sunday school room), and she was a dynamic speaker.  Her love for Jesus is so real and infectious.  The joy of the Lord just spilled out of her, and I wanted what she has!  The key to having such a relationship is to spend time with Jesus everyday, and treat him like he's right there with you all the time...spend time reading His Word and talk to him.  Make him priority, and everything will fall into place, no matter what situation we are in.  I knew this already, but I am not always consistent in my quiet times, especially when I am so busy.  But if we don't "keep our eyes on Jesus" we will sink.

2 Week Update

Well it has been two weeks since my Cochlear Implant was activated.  It seems like longer than that!  I have had ups and downs, but I'm hanging in there!!
I am still hearing new sounds I've never heard, and each time I find out what I'm hearing, it's exciting!  Noises such as hearing keys jiggling in the hand of someone walking in front of me and birds chirping in the morning as I walk from my car to the school.
Last Monday night I read Fred's lips while he prayed for our kids, and it dawned on me I was hearing the "s" sound in his words.  They were so loud and clear.  Before, I could never hear that sound because it was so high-pitched.  I have always struggled with this sound because I could never hear it, but could only see the lips moving.  I couldn't believe I was hearing this sound, and it's SO loud!!  I decided to try making the "s" sound, and I could hear myself making the sound once I got it right!!!  It was no wonder people thought I was talking with food in my mouth (those who didn't know I was hard of hearing), or if I was from another country.  Ha!!
I was so excited, I got on Skype to tell my parents about it.  They were so thrilled with me because they know how I have struggled with this all my life.  They told me to say several words that have "s" in them.  The name "Jesus" is one of them.  After a few tries, I was able to perfect it!  I was sure that Jesus was smiling at my attempts!
I won't be going around emphasizing the "s" in my words because I still have to practice until it flows smoothly.  Right now it would sound like I'm trying to learn English, saying words slow and with lots of concentration.  Also, it's hard for me to hear this sound with a lot of background noise.

Thank you to those who prayed for me as I went back to work at school last week!  It has gone a lot better than I expected, even with all the loud sounds.  I think my brain is starting to adjust to the different sounds a little bit.  There are so many sounds at school.  So many students talking and laughing, footsteps, doors closing, humming and beeping of different electronics.  I have a hard time knowing what I'm hearing at times, but that's ok.  My brain is still adjusting.
By the end of the week, I was emotionally and mentally drained.  I went to bed early on Friday night, took a long nap on Saturday and went to bed early again on Saturday night.  I felt much better on Sunday.

The ringing and clicking noises are still there periodically, but now I'm noticing high feedback sounds like my old hearing aid would make.  My CI does not make any sounds.  My brain is still working out the kinks.  This feedback sound is very very annoying.  I used to dislike this sound when I wore hearing aids that had feedback problems whenever I smiled or hugged someone.  Hopefully this won't last too long.

Speech is still unclear.  People still sound like "waa waa" when they talk.  I still need to be patient and hope that this will pass soon.  Wearing a hearing aid in my other ear helps balance out the sounds of peoples' voices.

I have my 3rd mapping appointment this Friday at the Mayo Clinic.  My audiologist will make some adjustments and hopefully she will notice some improvement in my hearing test.  I will post an update after this appointment.

New sounds

It has been 6 days since activation.  It seems like it has been 2 weeks!  It has been quite an adjustment.  I have worn the cochlear implant everyday for as long as I can without taking it out.  The "clanging" and "ringing" sounds have been changed to "beeping" and "clicking" sounds, but with very loud muffled speech.  Speech sounds like "waah waah waahh," like the teacher from Charlie Brown.  I read somewhere that this is what it sounded like to someone who was activated, and I thought that was a perfect description of what I'm hearing.

I will have to be honest and say that I am very tired and worn out before each day is over.  My brain has been working overtime with all the new sounds.  Especially where there is a lot of talking.  I went to school on Thursday with my kids to meet their teachers.  There were people talking in the hallways and occasionally the intercom come would on...my head was spinning by the time we left the school.  I was wondering how I'm going to do when I go back to work on Tuesday.  I work as a teacher's aide at the same school my children go to.  My audiologist told me if it gets too uncomfortable or if it interferes with my job, I can just take it out for a while.  I absolutely love my job and I look forward to it!  But I don't want to get headaches or feel overwhelmed.  I would appreciate your prayers that I would adjust quickly to a noisy environment.

On a positive note, I am starting to hear certain sounds and understand some speech!  I first noticed the sound of crickets outside when I needed a break from the "clanging sounds" in the house.  At first I didn't know what it was, but then I remembered when Fred made a comment about how noisy the crickets were.  It dawned on me I was hearing crickets.  I was delighted to hear this new sound, even if it was annoying.  Haha!!

The next day I went to visit a teacher friend at her new school.  While she was showing me around the new building, I heard her flip flops clicking on the floor.  I heard wheels squeaking on a cart that someone was pushing.  Never heard that before!

That evening, I decided to take my hearing aid out of my left ear and just wear my CI for awhile.  Allan, my oldest son, started talking to me, and I realized that I could hear the different tones.  I couldn't hear the difference when I was first activated.  It's still very loud and muffled, with beeps and clicks, but at least I'm able to separate a few different tones!  I got excited and told Allan I could understand him a little bit.  He covered his mouth and said a few words...I was able to get a couple right!  Fred joined in on the fun and said a few words under his shirt.  I was so encouraged when I got some right.  I'm definitely taking some steps in progress- it's slow, but nonetheless it's progress!

While I was making lunch the other day, I heard a rapid clicking in the kitchen.  I couldn't figure out where it was coming from.  I said to Fred, "What IS that sound??"  He said it was the toaster oven.  It makes fast ticking sounds like a clock.  I had no idea it did that!  Ha.

I went to church today, and it was the first time hearing music since getting the CI.  It did not sound good.  It was very VERY loud.  And when the speaker used the microphone, it echoed in my head.  BUT...I was able to understand every word that he said!  Even with all the echo, beeps and clicking sounds.  I still had to read his lips, of course, but I didn't have to concentrate so hard! 

I so look forward to when speech is clear.  God is teaching me patience and perseverence.  I'll have to say, I feel closer to God then ever before.  I need Him to help me get through each day.  I need His strength, only the kind He can give.  

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!!!