Tuesday, December 10, 2013

I Got Lost...

Did you think I got lost? I did. In life. The summer flew by and the fall came and went. Here it is December and it's COLD! It's been over a year since I lost the hearing in my right ear and so much has happened in that time. Let me catch you up!

I had one more mapping in August before I went back to school. More testing and mapping. The awesome results from June were even more incredible! The test where I had 93% correct in June jumped to 98% in August. Wow! That is in the sound booth. Real life isn't always that amazing, but I still love the results and feel so much better about my hearing.

The school year has gone really well. I feel so much more together and confident this year. With all the new mandates, Common Core, Student Learning Objectives, and teacher evaluations, I really have to stay on my game. If I had to face all this craziness that is education these days without my hearing, I'd be done real fast.

We have a really cool program in Northwest Ohio called Kids on the Block. This organization comes around to classes and groups and uses full body puppets to teach kids about disabilities and how to interact with someone with a disability. They have come to our school for years, but just last year they added cochlear implants to the list of disabilities that they address. Knowing this, I shared with my kids that I wear a hearing aid in one ear and have a cochlear implant in the other. Most did not know this about me and they found it fascinating! They thought they were pretty special to know someone with a cochlear implant when the Kids on the Block were sharing about them.

This fall I decided to get a new hearing aid for my left ear. My hearing has been deteriorating slightly (old age!) and my hearing aid was five years old. That is about the usual lifetime of a hearing aid and my old one had been bumped up to maximum volume for that model. Plus, technology has changed so much since I bought my last hearing aids, that my audiologist had lots of cool new hearing aid advances she wanted to share with me. We have been saving money all year with the idea to buy 2 new ones in the near future. Now that I have a CI on the right, I only need to purchase one hearing aid. In case you are wondering, an average hearing aid runs about $2,000. Like all technology, the more bells and whistles, the higher the cost. I got a Phonak Naida Q70. I really like the Phonak hearing aids. I switched to this brand with the last hearing aids I got. I have been very pleased with the devices and the service, which I cannot say about some of the hearing aids I have had in the past! I got my new hearing aid about 2 weeks ago, just before Thanksgiving. Things are louder which I like, but sound quality is not what I would like it to be. First of all, my internal sounds (my voice, chewing, etc.) sound very "tin can - like". I do not like this at all. I was hoping this would eventually go away as I got used to the new hearing aid, but it is still there. Also background sounds are so loud, I have trouble hearing conversation - especially on the phone. I have worn hearing aids long enough that I know the settings are never ideal the first time around. It takes constant tweaking with honest communication between patient and audiologist. I will have lots of requested changes when I go back in a week for my follow-up.

Well, you're about up to speed now. I have a hearing aid follow up on Dec. 20 and a 6 month mapping appointment for my CI on Jan. 2. I will update after those appointments. Until then, I wish you a blessed holiday with all the wonderful sounds of the season! Merry Christmas!

Friday, June 28, 2013

I LOVE my cochlear implant!

Well, I apologize for the delay in posts. Life has been just crazy since school let out at the end of May. Here it is the end of June and the chaos hasn't stopped! I had my third mapping on June 13 and immediately left for camping for 4 days. No internet connection to update the blog. Upon returning home we had vacation bible school, swim team practice and a meet, technology training at school, horse camp, and getting the girls packed for 4-H camp. Then drive kids to camp, scrapbook evening, whirlwind surprise bedroom makeover for my oldest girl while she was away at camp, and then put things back together and pick kids up from camp. <breathe> Then, continue with swim team practice, horse camp, and drive kids to musical rehearsal every day. Recover from bedroom makeover. We're still working on the pile mountain of junk "stuff" in the living room from Maddie's room. And... we're out of town again this weekend.

BUT... I am doing all this running around with renewed vigor because I can hear! I REALLY LOVE IT! At my last appointment, my audiologist did more mapping, and after setting my new programs, put me in the booth for some hearing tests. She and I were so excited to see the results! One of the tests I did was sentence testing. Sentences were spoken by many different kinds of voices and I had to repeat the sentences back. In January, wearing the high-powered hearing aid I had to try for a month prior to my CI, my score was 32% correct in a quiet environment. In June, wearing my CI processor, my score was 93% correct! The same test with background noise was given. My audiologist didn't even do the background noise with me in January because my score was so low. In June, I had 84% correct in noise. Incredible! I thought I would share my audiograms from January and June also to show you the improvement. These are for the ear with the implant. Sorry they are a bit blurry!

Before CI surgery, I could not hear the high frequencies. See the big drop?

With the CI, I can now hear those higher frequencies!

Life is good right now. I really feel like I can hear important things that I was missing before. Life is more enjoyable also. The sound with the CI is not yet perfect. I still hear robotic voices a bit. But if I don't concentrate on that, I can block it out and things feel mostly normal. I have 4 different settings now on my processor - everyday, noise, quiet, music. My "homework" is to practice using each of these settings. Right now I mostly use the everyday setting. It's the one that sounds the best. I have switched to the noise setting when I am at gatherings with lots of people, restaurants, and so forth. It seems to help a little with conversation. Music comes and goes. The music setting doesn't seem to improve it much. Acoustic music sounds the best. Electronic music such as electric guitars, radio, etc. often still sound a lot like static. But it will get better. I am confident in that.

Want to know some of the times I have been utterly grateful for this opportunity and just thank God I have a cochlear implant? Well, it's my blog so I am going to share anyway! There are no longer burned meals in our house due to that high pitched oven timer. I can hear it from several rooms away! I drove to a party at a friend's Michigan cottage and was able to have a conversation with my girlfriend in the car without having to look at her and read her lips! I can hear my kids when they talk to me from the back seat of the car. Right now I can hear the TV two rooms away. Those things would never happen before. I am so thankful.

I have to leave you with this humorous photo my dad found in an ad in the paper. Sometimes I feel like this!

Thursday, May 23, 2013

More new sounds and reasons to dance for joy!

Well, I passed the restaurant test. I am so excited! This afternoon I went to a restaurant with a large group and I could hear 95% of the conversation around me! I could participate because I could hear!! I could even hear people talking that were a couple people down the table. It was awesome. If I hadn't been in a public place, I may have done a happy dance. (It was a mexican restaurant with fantastic margaritas, so maybe it is not unusual to see someone do a happy dance in the restaurant. But I refrained.)

Before my surgery, and even before the sudden hearing loss in November, restaurants were not a favorite place. Large groups were even worse. It was just too much noise, and no matter how hard I tried, I struggled to be a part of the conversation. I usually ended up feeling left out. Not today. I really enjoyed myself like I haven't in years. Yay! More HOPE.

I had my one week appointment yesterday. My audiologist did more testing and mapped out a new program for me. When she turned the new program on, it was LOUD! She had to back it off quite a bit, but it is still even louder than the programs I had last week. I am hearing even more new things. Again, I have homework before my one month appointment. I have four programs and, again, I have to work my way up to program four by June 13.

This little miracle inside my head just keeps getting better. I still have the munchkin voices, but I don't care. I'm hearing things I haven't heard since I was a kid. Last night, I heard an incredibly annoying bird outside the window. Today I heard the kitchen timer I use in my classroom - from across the room! I can hear the morning and dismissal bell again at school. (The kids will tell you, it's loud! But I couldn't hear it after November.) A friend came into my classroom to talk to me while my kids were watching a video and she spoke very quietly and there was background noise from the video, and I had no problem hearing her. She even said she was speaking much softer than she normally would when talking to me. All of these little things are miracles to me! I am overjoyed by the sounds I am hearing. Each different situation provides another opportunity to test out my new hearing. One thing I have not done since activation is watch TV. I just haven't had time with the craziness of the last few weeks of school. Maybe come June 4, I can sit down with some of my favorite shows and do some more "testing".

Monday, May 20, 2013

Testing, testing...

Can I just say how excited I am?!?! This first day at school with my cochlear implant turned on was not high on my list of priorities. In fact, I was sort of dreading it. I was sure the noise and static would get to me and I would have to remove my processor before day's end. That was not the case. In fact, I was pleasantly surprised at how well my hearing was today. I came home in a good mood, and it was a MONDAY!

I showed my students the processor and explained to them how it worked. I showed them that the magnet in the coil sticks to the metal chair and to my head. They thought that was cool. (I'm a little amazed by that too!) I told them that I could hear better now, but when they all talk at once I can't understand them - it's just a bunch of noise. I need everyone to talk one at a time so I can understand what they are saying. A few times today, when I couldn't understand them, I saw them shushing their fellow students so that they could be heard. (Maybe I should have used that line at the beginning of the year!) Anyway, I passed day one of the "classroom test". We'll see how tomorrow goes.

I also got to test out my CI at a retirement party this afternoon. A crowded room full of noisy conversations on Saturday put my CI into a tailspin and all I could hear was static and electronic noise. I had to remove it for a while. Today, no need. While there was background noise that was difficult to shut out, I could hear more conversation. I still missed some things, but I caught more than I have in the last 6 months, and maybe even more than before I had my sudden hearing loss. It was promising instead of depressing, which is what situations like that usually are for me. The background noise and hum of many conversations going on simultaneously just drowns out the voices I am trying to hear, no matter how close I am or how hard I am concentrating. Today, I felt like I was close to being able to hear and participate even at a noisy party. HOPE.

Sometime on Sunday, voices moved from being mostly robotic to more munchkin-sounding. I almost laughed during church as I listened to the congregation singing and it sounded very much like I was surrounded by a munchkin choir.

Tonight I changed to program three. My assignment was to work my way up to three or four by my appointment on Wednesday. I am being a model student and doing my homework. I am happy that sound is becoming "normal" and I am adjusting as quickly as I am. I really didn't expect these results this fast. Sounds aren't yet normal. Everything still has that electronic ringing and voices are still munchkin-like, but each day gets a little better. Music isn't quite as wonderful, but I am not concentrating my effort on that at this time. I want to get speech recognition mastered first. My audiologist said it would take several months to enjoy music and get to the point where I would be able to sing in choir, praise team, etc.

My new sound to rejoice over today? I can now hear the beeper on the oven timer - even from another room! Believe me when I say the whole family is happy about that!

Saturday, May 18, 2013

Activation Day

My cochlear implant is activated. On Friday, I was fitted with my processor and turned on. It wasn't a miraculous thing like some people imagine. It wasn't clear. It wasn't even too loud. The first thing I heard was squeals and squeaks and beeps. Lots of them. Then with in a few minutes those squeaks and beeps only happened when people were speaking or there was sound in the room. Within the 40 minutes I was in the audiologist's office, the squeaks and beeps turned to words. Everything was very electronic. Voices sounded like robots. Yesterday, all sounds had an electronic quality. They were louder than before and they sounded like the sounds they are, but they were accompanied by an electronic ringing - like you might hear from a bad microphone - that hollow, ringing sound.

Today, sounds were fairly regular sounding - a little bit of the ringing remains. I notice that I can hear things that I could not before. So that is something to rejoice over! I heard the cat's bell yesterday for the first time. (OK, maybe that is something I am not going to rejoice over!) I can hear the keys on my keyboard clicking as I type. The rustle of paper. So, I discover that maybe I was not being quite as stealth as I thought when I sneak into my children's rooms or quietly try to do something without disturbing others.

Voices continue to sound like robots. In regular conversation, I can deal with that. In noisy situations, I get nothing but electronic static and reverberation. I am a little concerned about being in the classroom on Monday. My classroom qualifies as one of those "noisy situations". We'll have to see if I can make it through the day wearing the processor.

I picked out a lovely, fashionable dark brown for my processor. OK, I admit, I just wanted it to match my hair color. Fashion had nothing to do with it. Until she told me I get one processor cover with my kit. Then, of course, I picked a zebra print! When we walked out of the audiologist's office, she sent me on my way with a suitcase of accessories and literature. I am not joking when I say suitcase. It is literally the size of a small carry-on suitcase. It has a shoulder strap and everything! It weighs eight pounds. (I weighed it.) This gadget comes with more bells and whistles than an iphone. She only explained about half of them to me and I have to bring my suitcase with me next week to my appointment to get briefed on the remaining cords and gizmos. I even have a remote to work my volume, programs, and check battery status.

In my first few days, I have to say that it hasn't been bad. It hasn't been overwhelmingly great, either. But, I can say that it shows promise. I have to be patient and let my brain adjust to the sounds. I have four programs on my remote. My audiologist set up the same program on all, just bumping up the volume on each one. My assignment before my next appointment is to move up to the next program every 2-3 days. Today I tried the second program just to see what it sounded like. Truthfully, it didn't sound much different from the first one, except maybe a bit louder. So I left it there. In a couple of days I'll try program three. When I return for my next mapping appointment on Wednesday, we will do more testing, tweaking and eventually set up specific programs for different situations.

So, my first impression? I don't hate it. I don't love it. But, I think eventually I will.

Wednesday, May 15, 2013

"Bad Hearing" Days

Well, I've had a few "bad hearing" days in the last week. Not as many since surgery as I thought I'd have - my kids at school are actually more understanding when I don't hear something now than before my surgery. I think it's because they (and others) are now more aware that I cannot hear in certain situations. This makes life a bit easier for me. People who are aware of my hearing loss and recent adventures adapt to speak to me by doing simple, but effective things. Speak directly to me, face to face. I need to read your lips. Speak loudly and clearly, but don't shout. I appreciate these small gestures that people close to me have been doing for years because of my hearing loss.

So what are "bad hearing" days? I'm sure people with normal hearing don't have them, but then again, maybe you do. There are some days or situations that I just feel like my hearing aid isn't working correctly or my ears are plugged up. I just struggle to hear. I can't understand anything. Sometimes it may be the situation. Maybe I can blame it on the weather. I don't know why my ears do this sometimes, but I do know that other people with hearing impairments have "bad hearing" days also.

Last Thursday, the girls and I went to Rally's for supper. I hate that staticky order-taking microphone/speaker thing. Even on good hearing days, I can't understand a thing they say to me. I relay our order and the lady inside the box says something back. No clue. I look at Maddie with a confused look and she translates. I answer and order the rest of our food and again she speaks in gobbley-gook. Maddie again translates. This happened about 3 times just placing our order. As we pull away, Maddie states that she should always place the order when we go through the drive-thru. Ugh. Inside my head I am hoping that next time I go through that drive-thru I can understand.

This time of year I have to attend a lot of meetings for work. Meetings are the worst. I hate meetings, but probably not for the same reasons as others. It is so hard for me to hear anybody not speaking with a microphone at a meeting. Even in small groups it is difficult to understand everyone if more than one person is talking at a time. It's worse if there is background noise. Even if it is just a fan or vent. That white noise is NOISE. It gets in the way of me hearing what I need to hear. Sometimes I am utterly exhausted just trying to hear and understand during the course of a day.

Last night we went to my daughter's band concert. I was not looking forward to it because listening to music in a place with bad acoustics is often just a noise-fest for me. The concert was in the high school gym - not the greatest place to appreciate music. Also, I have struggled with hearing higher frequencies and the melody of music since my sudden hearing loss in November. But I can say that the concert was quite enjoyable. Either my expectations had dropped so low that it was not nearly as bad as I thought or I was having a better hearing day. Who knows. Maybe the bands were so spectacular that they prevailed over my bad hearing. Yeah, we'll go with that. They were good.

I know I'll still have "bad hearing" days after my CI is activated, but I am hoping that they will be minimal. I am setting high standards for my bionic ear to hear and UNDERSTAND that voice in the drive-thru speaker, go into a meeting and UNDERSTAND the whole conversation, no matter who is speaking. I am not as confident on the clarity of music as I have heard mixed results from other CI recipients. That will have to be determined.

Just 2 days until activation. I am very excited. I am not nervous, more of a feeling of uncertainty. I do not want to set my expectations too high and be disappointed in the first few days. But I do put a lot of hope into this device. In my heart, I want to hear NOW. In my head, I know it can be days, weeks, months, even years of mapping for some people to find the settings that give them the best hearing and clarity for the situations of their lives.

Four weeks. When you are waiting for something, time usually goes by so slowly. I am amazed that surgery has come and gone and my activation date is upon me. I am ready.

Monday, May 6, 2013

Wanna see my scar?

OK, it's been two and a half weeks. It's not really that gross anymore. In fact, I was surprised to see that you can hardly see it anymore. So if you want to see where they cut me open to make me the bionic woman, take a look. If not, don't read any more of this post!

Things are pretty much back to normal around here. After my first week back at work, I was exhausted. Add state testing (which in and of itself is somehow an exhausting experience) on top of getting back into routine and I was beat every evening. On Saturday, I slept in. That rejuvenated me for my busy weekend of getting the sunporch and patio unpacked and cleaned out. It was such a gorgeous weekend, that I got the itch to entertain. I am ready for summer! I can now hang out in my favorite room of the house - the sunporch! I went to the greenhouse and got plants and got started on my gardening. Next weekend it will be getting the camper out and cleaned up and packed for the summer season. And while I am busy doing all my favorite things of this season, it's OK that I really can't hear any better than before. My activation date is May 17 and with that date in my head, I can continue to plow through my days, because I know it will be here before I even turn around! I keep telling people "Now it's just a waiting game." Well, not really. I am NOT sitting around waiting. If you know me, you know I don't ever sit around! I have plenty of my favorite things (gardening and getting ready for summer) and some of my not-so-favorite things (grading papers and end of the school year tasks) to keep me busy. But the days are flying by. So even though I have nothing new to report right now, I will soon! Stay tuned!

Thursday, May 2, 2013

Every day is a little better

I went back to work on Monday. All in all, I've felt very good and haven't had to use much medication to manage pain. But, boy, am I worn out at the end of the day!

My little third grade buddies were so fun on Monday. I shared a few books with them to help explain cochlear implants. I love the book, Let's Hear It For Almigal! It's about a little girl who gets a cochlear implant and how she is absolutely the luckiest girl in the world. It's written in fun, kid-friendly language and my students have enjoyed reading it this week. I also showed them my scar (if they wanted to look). I think the boys liked that! They are eagerly awaiting to see the processor (the outside component of the CI) when I get it in a few weeks.

My jaw and ear area have been a little sore, but it comes and goes. The incision has been very itchy lately and the funny taste in my mouth continues. Some things taste fine (like coffee! Yay!) and there are other things that the funny taste prevails over the taste of the food. These are minor things in the grand scheme, but annoying. Overall, I am amazed that my incision has healed so well and I am as pain free as I am. My ear is starting to lay flatter on my head and I don't look so lopsided.

I am also excited that I woke up this morning and realized that I had slept on my right side last night! Two weeks after surgery and I can lay on the right side of my head without too much discomfort. I also have almost all the feeling back into my ear lobe. There are still a few spots that are numb yet, but mostly I feel an ear there, now!

With the nice sunny, warm weather, I am glad I can now wear my sunglasses. Last weekend it was painful to wear sunglasses. The area was still too swollen and sore.

Every day is a little better and a little closer to my activation date. I am looking forward to getting my sound processor and hearing with my bionic ear in two weeks. May 17 is just around the corner!

Here is another info graphic I found while doing my internet CI research. I hope it helps clarify how a cochlear implant works. I got the inner parts implanted during my surgery and will begin to wear the outer parts in two weeks.

Cochlear implants use an external microphone and speech processor that you generally wear behind your ear. A transmitter sends radiofrequency signals to a surgically implanted electronic chip, the receiver-stimulator, which stimulates the auditory nerve with electrodes that have been threaded through the cochlea.

Thursday, April 25, 2013

One Week Down, Three to Go

It's amazing how fast a body heals and rejuvenates itself. One week ago I had my surgery. Even two days ago, I was feeling well, but lacked energy and was basically a couch potato. Yesterday I had my follow-up appointment with my doctor. It was the first time in a week that I had been out of the house. My mom took me to lunch at Panera and then drove me to my appointment. It was nice to have a little mother/daughter time. We don't often get to do that. Dr. Benson was extremely pleased with how the surgery went and thought my incision was healing nicely. I no longer have to wear any bandages and I am clear to use any hair products! Yeah!

I feel better each day. Showers are my favorite thing and each night I am getting better sleep.  Mornings will be hard when I have to go back to work next week. I have been sleeping in each day and then I am in some pain because my meds have worn off during the night. I am not getting up in the middle of the night to take pain medications any more, so that makes for an unpleasant morning. Right now it's OK to be slow and lazy in the morning. I hope I am able to pick up the pace next week. I have never been a morning person, so that will be a challenge. My energy is slowing returning. I made it through the day without a nap yesterday, but that was only because I was not home!

My outer ear is still numb in some places and sticks out. I certainly hope it will lay flatter against my head once the swelling goes down. Other than that and some bruising, one really can't see any difference from before. I still have that funny taste in my mouth. I asked at my appointment yesterday how long I would have to deal with that. He said anywhere from 1 to 12 months. Not the answer I wanted to hear. While it is not the most terrible side effect, it is annoying and definitely takes some enjoyment out of eating. Maybe this will be my diet plan for the next year! :)

One week is under my belt and I have three more weeks to heal before my device is activated. These three weeks will be tougher than the last one. I will have to venture out of my quiet, relaxing home and into the loud, real world and function with just one hearing ear for three weeks. I think this is one of my biggest fears with this procedure. Next week will be a challenge. Yesterday, Dr. Benson asked if I felt like I had any residual hearing left in my right ear. I honestly don't hear any change from before. Good or bad, that either means that my hearing was so bad in that ear, that I don't notice being completely deaf now or that he was able to preserve any residual hearing that was there. Either way, I basically cannot hear in the right ear in everyday circumstances. That will be my reality for just three more weeks. I can do it!

I can do all things through him who strengthens me.
Philippians 4:13

Be strong and courageous. Do not fear or be in dread of them, for it is the Lord your God who goes with you. He will not leave you or forsake you.
Deuteronomy 31:6

Saturday, April 20, 2013

Surgery Day

Surgery day (April 18) went well. We arrived at the hospital at 7:15 am. Our pastor came to the hospital for meditation and prayers before surgery and I ran into a friend in the waiting area and I spent some time catching up with her while we waited. I went into surgery around 10:00. I remember waking up in recovery about 3:00 pm. I was then taken to the post-surgery room and Ken joined me. Coming out of the anesthesia was difficult. I had nausea and was struggling with staying awake. I just couldn't keep my eyes open, literally. I had the most wonderful nurse, Alison. She was friendly, kind and did anything she could before and after surgery to make me comfortable. 4 stars for service! We left the hospital at about 6:00 pm and I was feeling a bit more alert.

I was bandaged up with a velcro protective cup around my ear that other CI recipients have dubbed "the jockstrap". I honestly cannot think of a better name for it. That's exactly what it resembles. My jockstrap and I will be buddies all weekend long.

Friday was a lazy day of resting and letting "Dr. Ken" take care of me. The nausea and dizziness had subsided and I was feeling pretty well for the most part. I have been taking my medications regularly so pain has not been a problem so far. I did not have much of an appetite on Friday, but ate enough so that I wouldn't get nauseous with the medications. My jaw hurt when I chewed and I couldn't open my mouth very far. I also have had a funny taste when I eat. I am not sure how to describe it - some have said it's a metallic taste, don't know about that - just an odd flavor. I also had a couple of nosebleeds. I was prepared for all of these things from talking with the doctor and other CI recipients, so nothing earth-shattering.

I had Ken take a picture of my incision when he changed the dressings because I couldn't see it. I wondered how big it was and what it looked like. It was not pretty so I won't be sharing the photo, but maybe later when it has healed some more, I can show you what it looks like. I have an incision the length of my ear right behind the ear where it attaches to the scalp.

Forty-eight hours after surgery, I am still doing quite well. Today, however, I have not had much energy and did more napping than yesterday. My jaw is not sore anymore, but swelling and bruising have shown up on the right side of my head/face. Between not being able to wash my hair and the bruising and swelling, I am not looking so hot. Can't wait for the 72 hour mark when I am permitted to wash my hair! I have taken bubble baths everyday which made me feel so much better, but the hair washing thing is awful!

Thank you to all of you who have had kind words to say and offered help in some way. Times like these let one know how wonderful the people in their lives are. YOU are wonderful!

Thursday, April 18, 2013


I have scheduled this post to be posted at 8:45 on Thursday morning. At that time I will be in surgery. I hope this post reminds you to do one thing. Pray.

Pray for me and the medical staff in surgery.
Pray for my husband sitting in the waiting room.
Pray for my beautiful children who are at school.

And while you're at it, just keep on praying.

Pray for those who have disabilities.
Pray for those who are battling cancer.
Pray for those who are homebound.
Pray for those who are depressed.
Pray for the single parents.
Pray for the children who have lost their parents.
Pray for the parents who have lost their children.
Pray for Boston and all who have been effected by the terror.
Pray for the starving.
Pray for the enslaved.
Pray for the homeless.
Pray for the lonely.
Pray for those who serve others selflessly.
Pray for the persecuted.
Pray for those who are sick.
Pray for those who govern.
Pray for your family.
Pray for your friends.
Pray for your enemies.
God knows what's on your heart.

Wednesday, April 17, 2013

My Fears and Some Wonderful Encouragement

Tomorrow is the big day. I am excited, but a little scared.

I am not scared of the implant.
I am not scared of the sounds and loudness I will hear.
I am not scared of the surgery. (OK, maybe a smidge.)

What I am scared of is what music will sound like. Will it sound like it did before? Will I hear the high frequencies clearly? In my research, I have read that CI recipients can hear and enjoy music. But, I have also heard that music and voices will sound different. Even my audiologist has told me that.

What does that mean? HOW will they sound differently? That is probably my greatest reservation going into this adventure. I want to hear melody lines. I want to hear the entire range of frequencies in a piece of music. I want to be able to hear the alto part and sing along. I want to be able to hear my own voice. I don't want voices to sound like robots. I am sure they won't, but that keeps going through my head. Someone said that voices and music with a CI sounds more electronical, someone even mentioned Darth Vader. My husband might think that cool. So NOT. I'm sure I won't know until my device is activated and I hear the sounds.

I don't doubt that I will hear better with this implant. I know I will. I am sure that understanding of speech will be better. (How soon depends on each individual, I am learning.) But what I doubt and question is what MUSIC will be like. My heart longs to enjoy music and singing like I did even a year ago.

One thing that has become clear very quickly is that every CI recipient walks a different path and the journey is so individualized. As I talk to others who have experienced this same technology, I can learn from them and share with them, but each day and sound will be mine to experience in my own way.

And so tomorrow I jump in. Today (and always), my friends, family, and colleagues have been so supportive. Today I was showered with flowers and candy from my third grade buddies, hugs from my fellow teachers, and so many phone calls, Facebook messages and emails from everyone wishing me good luck on my surgery and the best of results. Thank you. It makes me feel loved and gives me confidence to keep taking the steps I need towards greater hearing.

Monday, April 15, 2013

Spell 'cochlear'

Ten Year Old Cochlear™ Nucleus Implant Recipient Heads to the Ohio Regional Spelling Bee

As a teacher and a cochlear recipient, I thought this article was so cool. It happened right here in Ohio, too! This is just one more great story of why this technology is so life changing. Click on the link above to read the article. Enjoy!

Saturday, April 13, 2013

How Does a Cochlear Implant Work?

Well, I had my pre-op appointment with my doctor yesterday. He looked over my CT scans and file and is very excited about the surgery. Dr. Benson is kind, personable and enthusiastically wants to help his patients. He answered all my questions and made sure I was ready for the surgery. I am in good hands.

OK, so I am a teacher. Expect to be educated once in a while on this blog. I have found that many people have heard of cochlear implants, but they do not understand what they are or how they work. My device is a Cochlear Nucleus 5. The Cochlear website has a terrific explanation of the components of a cochlear implant and how it works. Please check out this link to learn more of how it works. It is truly a miracle of science!

How does a cochlear implant work?

The surgery will take two to three hours. He will make a cut behind my ear to insert the electrode into the cochlea and the magnet under the skin behind my ear. I will be bandaged up in a tight bandage and sent home. It is an outpatient procedure. I will have to return for a check up the following day to have the bandage removed. Of course my vanity had me ask how long I had to wait to wash my hair. Three days. UGH! If you see me anytime next weekend, don't expect Beauty. I will more likely be The Beast. Dr. Benson said I would have some pain, funny tastes in my mouth, and possible bloody noses. Following surgery, I will have to wait four weeks before the device can be activated so that the nerves in my ear can heal. During that time and whenever I am not wearing the sound processor, I will be completely deaf in my right ear. After my device is activated, I will wear the external sound processor, which looks much like a hearing aid, to be able to hear. I will have many mapping appointments with my audiologist to program the device for my best hearing. I will be able to control programs, volume, etc. from a remote. When my children get too noisy, I can just take off my sound processor and enjoy peace and quiet!

Thursday, April 11, 2013

Just one week until...

Wow. "Hear" I am. Just one week until my cochlear implant surgery. It all still seems a bit surreal. I am excited and scared at the same time. I want to be able to hear so badly. I have dealt with hearing loss my whole life, but it has never effected my daily life in such a negative way. I am desperate to be able to do "normal" things like have dinner with friends in a restaurant, attend parties, have conversations with my third grade buddies in our often noisy classroom, watch TV, listen to music, or sing. SING. I really miss singing.
For those of you who are not familiar with my hearing history, let me bring you up to speed. I have had a hearing loss in both ears since I was a toddler. It has been told to me that the cause was probably a fever or infection. I often had ear infections, did the tonsils out and tubes in. I have worn hearing aids since seventh grade. I have never let my hearing loss stop me from doing something I want to do. Until now. In November of 2012, I had a sudden loss of almost all hearing in my right ear. I went to an Ear, Nose and Throat specialist (ENT) and he did several tests to determine the reason for the loss and some treatments to try to regain the hearing. Good news was that he found no tumor or other horrible thing causing my hearing loss. Bad news was that it was probably permanent. The hearing loss was so profound that I could no longer wear my hearing aid in that ear. It just didn't serve any purpose. But, my ENT, Dr. Benson, thought that I was a good candidate for a cochlear implant.
I underwent 3 hours of hearing tests with audiologist, Dr. Bernath, on December 27 to determine if I qualify for a cochlear implant. If I did not qualify under regular FDA guidelines, they felt I would be a likely candidate for a study to expand the implant guidelines. It was very disappointing to learn that I did not meet the guidelines for either one. Dr. Bernath suggested that I wear a high powered hearing aid for one month and then return for testing. This had been done with another patient and he then qualified the second time. I was fitted with a Phonak Naida. This hearing aid was much stronger than my Phonak Audeos and it sent vibrations into my head that made me dizzy. After an adjustment, it was tolerable, but not pleasant. I wore this for one month and was most happy to send it back at the end of that time period. It had not helped me hear anything better. It only sent vibrations into my skull every time someone talked or a sound was made. It was exhausting spending all my energy trying to hear and this hearing aid just added distractions. After the second round of testing I was heartbroken to learn that I still did not qualify. I was so borderline. For example, one of the tests required me to identify 25 words or less out of 100. I correctly identified 27. Ugh! So on January 30 I did not qualify for a cochlear implant according to FDA guidelines and I did not qualify as a candidate for the study. Dr. Bernath said she was still going to submit my request to my insurance. Although insurance guidelines are similar to the other targets I failed to hit, she was going to recommend that it would be beneficial for me to have this surgery. I was told that I could be reevaluated in one year to see if I would qualify again. ONE YEAR!?!?
At this point I was so discouraged. I could not continue to do my job if my hearing stayed this way. I couldn't go out with friends. I couldn't hold conversations in the car. I couldn't enjoy music. I was so frustrated. And so the waiting game began.
A Chris Tomlin concert in early March lifted my spirits and brought me hope. Of course the music at the concert was so loud that I had no trouble hearing. And the message of the music reminded me that I have a God that holds me in the palm of his hand no matter what happens in this world. He has a perfect plan for me that may not be the same as my plan for myself, but is good and perfect in His time.

In Your everlasting arms
All the pieces of my life
From beginning to the end
I can trust You
In Your never failing love
You work everything for good
God, whatever comes my way
I will trust You
                                              Sovereign (Chris Tomlin)

Near the end of March, just before my 40th birthday, I received the news that I was approved for the cochlear implant. I was overjoyed! In the last month, I have been so busy with tests and insurance "stuff" to be ready for this day. One week. I am scared. But I am willing to take that leap of faith that this will be a good and glorious blessing for me and those I love. I know that the weeks and years to come will not be easy. Mappings and training my ear to "hear" again will be hard work. But the possibilities are so promising! Hear I am!