Hello everyone!
Its been over a month since my last posting. As the weeks went by, I did not have anything dramatic to share...but that has changed!
Firstly, for those of you who do not know, my older brother Matt decided to embark on his own cochlear implant journey starting back in May. After going through his own candidacy process, he was approved for the surgery and had it completed on July 19th at the Cleveland Clinic in Ohio. His surgery was a success and he spent the last week recovering under his finance, Molly's, careful eye. Today is his first day back at work! I can't wait for him to be activated and for us to share our experiences. He decided to use the technology of a different company so it will be interesting to see how similar or different our journeys are...especially since we have nearly identical medical backgrounds as far as our hearing loss goes. Please keep him in your prayers as he spends the next few weeks healing -- he's doing well but he is still hurting.
After my most recent appointment back in June, I did not like the programs I was given. They seemed too loud, capturing excessive amounts of background noise, making it even more challenging to understand people around me. After just over a month of having these programs, and 3 months of being activated, I'm starting to realize things are changing...and maybe the programs aren't so bad.
Since activation, I've been able to catch snippets of conversation here and there, usually just a few words... and that is very exciting because the more I can "hear" without lip-reading, the more progress my brain is making with learning sound comprehension.
In the last two weeks, I've noticed I'm starting to hear entire sentences... at first, I didn't trust myself to NOT look at someone's lips. After all, I've been lipreading since I was a little girl! My natural reaction is to look at someone when they are talking to me. When I don't look, I panic. I never give myself a chance to focus on what I'm hearing.
Two weekends ago, Matthew and I were watching a movie at home. We had all of the lights turned off. Usually, we keep the dining room light on low so I can see his face just enough to read his lips. For some reason, that night, everything was off. Perfect stage to test my comprehension skills.
I asked Matthew a question...he responded...and I realized I understood what he said. So every once in a while, I'd ask another question, he'd respond and while holding my breath, I'd understand! I started to respond to HIM with another question/statement/comment, he'd respond...I'd understand AGAIN!!! All of this done without lipreading. I was excited that I could respond to HIS responses to ME! Isn't that called...a conversation!?
As the week went by, I would try to give myself a chance to understand Matthew before looking directly at him. Its hard not to panic and immediately whip around and find his face. He provides a safe environment for me to practice my listening skills. I don't do it too often at work because I'm uncomfortable with the possibility my comprehension ability would fail and I'd be embarrassed to ask people to repeat themselves. But with Matthew, its ok. I ask him to repeat himself once, twice, five more times and he'll patiently do so, giving me the chance to focus on what I'm hearing and turn it into meaningful sound.
My practice is paying off. This past weekend, we were on my cousin's Jim and Mary's sailboat, cruising around the Potomac River. Saturday night, we were docked at a marina. Toward the end of the night, we were all sitting at the back of the boat after dinner, in the dark. I realized I could respond to Mary's questions and I couldn't see her lips. Doesn't that mean I heard and understood her? We also had the radio on, tuned into the local weather report. I was repeating back to Matthew what I thought I heard and amazingly, I was understanding what was being said! "Highs, 87 degrees. Winds 5-10 knots. Partly cloudy with chance of thunderstorms." AHH!! I was listening to the radio...the radio! There aren't captions on the radio!
Then, yesterday, Matthew and I were laying on the deck of the boat, face up, eyes closed, enjoying the wind in our faces and the rock of the boat (I was loving the sound of the water crashing on the sides!). I asked him a question and I understood his response perfectly...which enabled me to follow up with another comment/statement/question and the cycle continued for a few minutes. I had an entire conversation, totally independent from lip-reading! I can't believe it!
I feel so fortunate to be going through this experience. I can't even begin to imagine what things will be like 6 months from now...a year from now. Even if this is the most progress I'll ever make, I'd be perfectly satisfied. I've never been able to lay on my back, stare up at the sky, and enjoy a conversation with my husband all at once... now I want to try campfire conversations...where I get to participate. =)
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Monday, July 30, 2007
Wednesday, May 30, 2007
Old Voices, New Experiences
Hi everyone!
It's been a few weeks since my last posting. This month, I had the opportunity to go home to Erie, PA for the first time since my surgery and visit with family and friends. It was exciting and nerve-wracking all at once. Sometimes I worry that people will have the wrong impression of what my hearing abilities are with the cochlear implant. While I can now hear amazing things like birds or the dripping of a leaky faucet, I still struggle with basic human conversation. There have been days where I felt like I took ten steps backwards as far as my comprehension of the spoken language. Then there were days where I felt like I could understand everyone around with me with incredible ease! I'm sure how well I understand speech is dependent on a variety of things, such as alertness level, environmental factors, or the lighting of a room. The point being that my comprehension is not a predictable, static ability. While driving home to Erie, I wondered if I would disappoint friends or relatives with any gaps in comprehension. What did they expect?
Needless to say, I was worried about nothing because I had a fantastic trip home. Everyone sounded so different! People who stood out were my father's voice, my grandfather's voice, and my one of my old friend's voice. You know how when you read a book, you develop "voices" for the characters in your head? Then if you go see the movie, and the characters on the screen are dramatically different from what you developed in your mind, its a bit of a shock? Well, thats the best way I can explain my experience with talking to some of my relatives and friends for the first time since surgery. One night, my extended family gathered at my house for a pizza party and I had a wonderful time because I was able to follow large group conversations with my aunts in a way I never had before. I was in awe when I caught comments or jokes that would normally have otherwise passed me by unnoticed. My confidence level has soared! Over the weekend in Erie, we attended a wedding for a dear old family friend and I was able to carry on full conversations with many people, despite the dim lighting, the loud music in the background, and the multiple glasses of wine! This weekend in Erie was not one where I felt I took ten steps backwards!
On Memorial Day, Matthew and I went into DC to watch the National Parade. While we were there, we stopped in Smithsonian's Natural History museum to grab lunch on the food court. When we walked into the building, we lined up to have our bags checked and walk through the metal detector. At the last possible second, it suddenly hit me that I couldn't go through it! I looked at the security guard and said, "I can't go through! I have a cochlear implant!" Of course he looked back at me blankly. I have not been issued a medical card for these situations yet (mental note to self--get this taken care of!) so I had a brief moment of panic. Then I did the only thing I could think of: I flipped my hair up, pulled the external processor off my head and then put it back on, demonstrating my magnetic trick to the guard...then proclaimed: "I can't go through because I have metal in my head!" He was kind enough to nod me through. That was definitely a first for me!
I finally purchased my own MP3 player, a Nano! I'm in love with it. My good friend sent me this incredible list of songs to play while I'm out running. My Sunday morning runs have become one of my favorite times during the week. I've always loved music and lyrics...being able to take music with me on a run has transformed the experience. I've been trying to listen to songs that used to sound terrible to me -- any Jimi Hendrix songs, alternative music, or hard rock. A predominant instrument in those types of music is the electric guitar and through my hearing aids, they sounded terrible. Worse than pots and pans. I couldn't hear the singer on those songs either because they were drowned out by the terrible "music." But with my processor, I can hear the singers now, and the electric guitars don't sound so screechy and muffled anymore. So I've been having fun with ITunes...and probably helping their stock with how many songs I've been buying!
On June 11th, I return to Johns Hopkins for my next activation appointment. I'm looking forward to this one because after just over a month of using the implant, I'm excited to fine tune the programs even more. Remember how I commented that I have three different programs on my processor and how I couldn't tell the difference? Well, that has changed. I can definitely tell the difference between them which means my auditory nerves have been adapting and rewiring themselves. Baby steps!
Love to you all!
It's been a few weeks since my last posting. This month, I had the opportunity to go home to Erie, PA for the first time since my surgery and visit with family and friends. It was exciting and nerve-wracking all at once. Sometimes I worry that people will have the wrong impression of what my hearing abilities are with the cochlear implant. While I can now hear amazing things like birds or the dripping of a leaky faucet, I still struggle with basic human conversation. There have been days where I felt like I took ten steps backwards as far as my comprehension of the spoken language. Then there were days where I felt like I could understand everyone around with me with incredible ease! I'm sure how well I understand speech is dependent on a variety of things, such as alertness level, environmental factors, or the lighting of a room. The point being that my comprehension is not a predictable, static ability. While driving home to Erie, I wondered if I would disappoint friends or relatives with any gaps in comprehension. What did they expect?
Needless to say, I was worried about nothing because I had a fantastic trip home. Everyone sounded so different! People who stood out were my father's voice, my grandfather's voice, and my one of my old friend's voice. You know how when you read a book, you develop "voices" for the characters in your head? Then if you go see the movie, and the characters on the screen are dramatically different from what you developed in your mind, its a bit of a shock? Well, thats the best way I can explain my experience with talking to some of my relatives and friends for the first time since surgery. One night, my extended family gathered at my house for a pizza party and I had a wonderful time because I was able to follow large group conversations with my aunts in a way I never had before. I was in awe when I caught comments or jokes that would normally have otherwise passed me by unnoticed. My confidence level has soared! Over the weekend in Erie, we attended a wedding for a dear old family friend and I was able to carry on full conversations with many people, despite the dim lighting, the loud music in the background, and the multiple glasses of wine! This weekend in Erie was not one where I felt I took ten steps backwards!
On Memorial Day, Matthew and I went into DC to watch the National Parade. While we were there, we stopped in Smithsonian's Natural History museum to grab lunch on the food court. When we walked into the building, we lined up to have our bags checked and walk through the metal detector. At the last possible second, it suddenly hit me that I couldn't go through it! I looked at the security guard and said, "I can't go through! I have a cochlear implant!" Of course he looked back at me blankly. I have not been issued a medical card for these situations yet (mental note to self--get this taken care of!) so I had a brief moment of panic. Then I did the only thing I could think of: I flipped my hair up, pulled the external processor off my head and then put it back on, demonstrating my magnetic trick to the guard...then proclaimed: "I can't go through because I have metal in my head!" He was kind enough to nod me through. That was definitely a first for me!
I finally purchased my own MP3 player, a Nano! I'm in love with it. My good friend sent me this incredible list of songs to play while I'm out running. My Sunday morning runs have become one of my favorite times during the week. I've always loved music and lyrics...being able to take music with me on a run has transformed the experience. I've been trying to listen to songs that used to sound terrible to me -- any Jimi Hendrix songs, alternative music, or hard rock. A predominant instrument in those types of music is the electric guitar and through my hearing aids, they sounded terrible. Worse than pots and pans. I couldn't hear the singer on those songs either because they were drowned out by the terrible "music." But with my processor, I can hear the singers now, and the electric guitars don't sound so screechy and muffled anymore. So I've been having fun with ITunes...and probably helping their stock with how many songs I've been buying!
On June 11th, I return to Johns Hopkins for my next activation appointment. I'm looking forward to this one because after just over a month of using the implant, I'm excited to fine tune the programs even more. Remember how I commented that I have three different programs on my processor and how I couldn't tell the difference? Well, that has changed. I can definitely tell the difference between them which means my auditory nerves have been adapting and rewiring themselves. Baby steps!
Love to you all!
Tuesday, May 1, 2007
Say WHAT???
I had a jaw-dropping moment last night while opening the mail.
Anthem Blue Cross Blue Shield Health Insurance Bill
Oh ... my ... gosh.
God bless health insurance and the state of Virginia!
Anthem Blue Cross Blue Shield Health Insurance Bill
- Amount Provider Paid (Johns Hopkins Hospital, Baltimore MD) - $39, 579.00.
- Amount Network Paid - $563.00.
- Amount You May Pay - $100.00
Oh ... my ... gosh.
God bless health insurance and the state of Virginia!
Monday, April 30, 2007
Rolling With The Punches
Last Tuesday, the 24th, was my 3rd Activation Day at Johns Hopkins. The whole day started off terribly. First, the 6:30 morning news reported two accidents, both on my planned route to Baltimore. So I shortened my workout and made a mad dash shower, get dressed, and race out the door 30 minutes before I planned to leave. I was on the road by 7:30. Matthew, the master of back road travel (its a Novinger thing), plotted a new course of travel for me which included lots of winding back roads. His strategy worked and I made it to my appointment on time. However, on the way up, a bad thing happened. Remember how I mentioned my processor (i.e. hearing aid) has three different programs on it? While up until that morning, I had only used one program...not on purpose--I forgot I had two other programs to choose from but I also enjoyed the program I had been using for a week. Well, it suddenly occurred to me that I never used the other two programs so I decided to switch over and see what it sounded like. Big mistake.
The other two programs, by default, are MUCH louder than the program I had been using for a week. As soon as I flipped over, my face began to seizure and twitch. Needless to say, I immediately turned the processor off. I wanted to verify that the processor elicited that response so I carefully turned it back on and sure enough, as soon as I heard anything, my right eye seized up, my upper right lip twitched, and the muscles on the right side of my neck spazzed out. It was terrifying to be completely honest. I left the processor off until I arrived at my appointment.
After describing what had happened, Ryan smiled knowingly and told me the seizures were a reaction to sound that was simply too loud. The seizures and twitches were my brain's gag reflex, in other words. Since I did not turn my volume level down before transferring to the other programs, my auditory nerves were shocked by the intensity and loudness of sound. He assured me the twitches and seizures would go away in a few days. But, since they had flared up, we had to locate the electrode causing the twitches and seizures. This was the most unpleasant experience in recent memory. He would produce a rhythmic sound and increase the intensity until my face began to freak out again. He did this several times...for each electrode...and I believe I have 4. Ugh. For an hour, my face was all over the place. But the appointment was not entirely negative. I did leave with three new programs, expanded to include new frequencies and Ryan's assurances that he feels I'm making solid progress.
From Tuesday night until pretty much yesterday, anytime someone laughed, dropped a book, slammed a door, or if I talked, my right eye would twitch. It made me so self-conscious and absolutely drove me crazy. Its not fun to laugh, then grab your eyelid to keep it from spazzing out. But it did fade..and this morning, almost a week after the first seizure, I can say they're down to about maybe one or two an hour. A definite improvement.
Now onto the good stuff!!! First, my dad pointed out last week on a phone conversation that he thinks I'm talking better. Matthew concurs! This is exciting because that means I'm more aware of my own speech, and therefore, am more cognitive of how I'm shaping sounds. This is especially true with words that have very specific sounds like "ssh" and "cchh" and all of my "ssttt." While my first hope with this experience was to gain better sound comprehension, I'm excited to find that I'm gaining some wonderful side effects of improved hearing.
Saturday, Matthew and I went mountain biking. I'm able to wear my processor while biking so I got to enjoy my heaving breathing and little gasps as we tumbled down hillsides ridden with rocks and overgrown tree roots (what a great sport!!!). Then, while we were taking a break, I was just listening to the forest around me...and I could hear all these wonderful variations of sound. The first thing were the birds...I could tell there was a distinctive different between my friend Mr. Bird who lives outside our apartment patio, and all the birds in the forest. It was a happy moment for me to sit on the ground and hear all this life around me. I love these moments.
Sunday...Sunday...was AWESOME. My processor came with a few different parts--one of which is a small hook that has a little output for a wire. The wire can be inserted into a computer to listen to music, a phone for a conversation, or an Ipod. Yesterday, I decided to experiment with this feature by hooking my processor up to Matthew's Ipod. Oh my gosh...I've never heard music so clearly! It feeds directly into my hearing aid, just like music would feed directly into your ears via ear phones or head phones. Just a tiny wire made this happen! Sundays I go for long runs that typically last between one and two hours. During marathon training, however, I can be out there for two to three hours at a time...so long runs are looooong. I've trained myself to daydream, problem-solve, plan, pray...whatever to entertain myself as I run and run and run and run...but still, there are moments of boredom when you just wish you had someone to chat with...or....music to listen to! Yesterday, I took the Ipod with me on my long run and I had the absolute best run ever! I made a playlist with random songs just to try it out... when "My Humps" came on, I literally was shaking my butt here and there...then Sean Paul's "Temperature" came on and I'm rocking to it with my body...then some good country, then a big Broadway ballad I tried to (in a gasping, panting way) sing along with...it was awesome. Before I knew it, I was done with my run and I was on cloud 9. I've never worked out to music before so I never appreciated the motivating and entertaining factor it can have! I'm so excited to create a workout playlist and take it out with me. I'm running a half marathon in September and then the Marine Corp marathon in October so I'll be doing long runs all summer long. I need playlist ideas people!
Last night, I talked to my mom on the speaker phone and she was sounding better to me. I could pick out words she was saying without Matthew's help. I think I'm back to where I was pre-surgery as far as my sound comprehension goes with people. I'm confident I'll continue to improve. I think I'm overcoming my first bump in the road, as far as the twitches go. During moments of frustration, I try to remind myself to be patient with progress. This is a race I can't win by sprinting...baby steps. =)
Love to you all!
The other two programs, by default, are MUCH louder than the program I had been using for a week. As soon as I flipped over, my face began to seizure and twitch. Needless to say, I immediately turned the processor off. I wanted to verify that the processor elicited that response so I carefully turned it back on and sure enough, as soon as I heard anything, my right eye seized up, my upper right lip twitched, and the muscles on the right side of my neck spazzed out. It was terrifying to be completely honest. I left the processor off until I arrived at my appointment.
After describing what had happened, Ryan smiled knowingly and told me the seizures were a reaction to sound that was simply too loud. The seizures and twitches were my brain's gag reflex, in other words. Since I did not turn my volume level down before transferring to the other programs, my auditory nerves were shocked by the intensity and loudness of sound. He assured me the twitches and seizures would go away in a few days. But, since they had flared up, we had to locate the electrode causing the twitches and seizures. This was the most unpleasant experience in recent memory. He would produce a rhythmic sound and increase the intensity until my face began to freak out again. He did this several times...for each electrode...and I believe I have 4. Ugh. For an hour, my face was all over the place. But the appointment was not entirely negative. I did leave with three new programs, expanded to include new frequencies and Ryan's assurances that he feels I'm making solid progress.
From Tuesday night until pretty much yesterday, anytime someone laughed, dropped a book, slammed a door, or if I talked, my right eye would twitch. It made me so self-conscious and absolutely drove me crazy. Its not fun to laugh, then grab your eyelid to keep it from spazzing out. But it did fade..and this morning, almost a week after the first seizure, I can say they're down to about maybe one or two an hour. A definite improvement.
Now onto the good stuff!!! First, my dad pointed out last week on a phone conversation that he thinks I'm talking better. Matthew concurs! This is exciting because that means I'm more aware of my own speech, and therefore, am more cognitive of how I'm shaping sounds. This is especially true with words that have very specific sounds like "ssh" and "cchh" and all of my "ssttt." While my first hope with this experience was to gain better sound comprehension, I'm excited to find that I'm gaining some wonderful side effects of improved hearing.
Saturday, Matthew and I went mountain biking. I'm able to wear my processor while biking so I got to enjoy my heaving breathing and little gasps as we tumbled down hillsides ridden with rocks and overgrown tree roots (what a great sport!!!). Then, while we were taking a break, I was just listening to the forest around me...and I could hear all these wonderful variations of sound. The first thing were the birds...I could tell there was a distinctive different between my friend Mr. Bird who lives outside our apartment patio, and all the birds in the forest. It was a happy moment for me to sit on the ground and hear all this life around me. I love these moments.
Sunday...Sunday...was AWESOME. My processor came with a few different parts--one of which is a small hook that has a little output for a wire. The wire can be inserted into a computer to listen to music, a phone for a conversation, or an Ipod. Yesterday, I decided to experiment with this feature by hooking my processor up to Matthew's Ipod. Oh my gosh...I've never heard music so clearly! It feeds directly into my hearing aid, just like music would feed directly into your ears via ear phones or head phones. Just a tiny wire made this happen! Sundays I go for long runs that typically last between one and two hours. During marathon training, however, I can be out there for two to three hours at a time...so long runs are looooong. I've trained myself to daydream, problem-solve, plan, pray...whatever to entertain myself as I run and run and run and run...but still, there are moments of boredom when you just wish you had someone to chat with...or....music to listen to! Yesterday, I took the Ipod with me on my long run and I had the absolute best run ever! I made a playlist with random songs just to try it out... when "My Humps" came on, I literally was shaking my butt here and there...then Sean Paul's "Temperature" came on and I'm rocking to it with my body...then some good country, then a big Broadway ballad I tried to (in a gasping, panting way) sing along with...it was awesome. Before I knew it, I was done with my run and I was on cloud 9. I've never worked out to music before so I never appreciated the motivating and entertaining factor it can have! I'm so excited to create a workout playlist and take it out with me. I'm running a half marathon in September and then the Marine Corp marathon in October so I'll be doing long runs all summer long. I need playlist ideas people!
Last night, I talked to my mom on the speaker phone and she was sounding better to me. I could pick out words she was saying without Matthew's help. I think I'm back to where I was pre-surgery as far as my sound comprehension goes with people. I'm confident I'll continue to improve. I think I'm overcoming my first bump in the road, as far as the twitches go. During moments of frustration, I try to remind myself to be patient with progress. This is a race I can't win by sprinting...baby steps. =)
Love to you all!
Saturday, April 21, 2007
Birds and Barking
Greetings!
Fairfax, Virginia weather has finally turned a corner. Its a gorgeous Saturday morning so I'm sitting on the patio of my apartment, enjoying the sunshine and warm temperatures. I'm also having fun with "outside" sounds!
But let me back up a second and talk about how the rest of the week has been unfolding.
On Wednesday, Matthew and I returned to Baltimore for my 2nd day of Activation. The first twenty minutes of the appointment, I just sat there and listened to a rhythmic, repetitive sound very similar to hoof beats. Every once in a while, I'd notice the rhythm would change slightly, either slowing down or subtly increasing in volume. After my doctor was satisfied with the sound mapping he had completed, he turned my implant back on to the normal setting.
We did a variety of therapeutic activities. First, he opened his little box of musical instruments and shook, rang, and banged the different instruments and asked me to describe the sound. What I heard was a dramatic improvement from my 1st day -- instead of hearing a swooshing, buzzing sound when he shook a particular rattle, I heard a squeaky sound. His face lit up with delight because what I was hearing was much closer to the natural sound the instrument was producing. When he rang his little bell, it definitely sounded like a ring-a-ling rather than a buzz-a-buzz! This simple exercise was so exciting because I could see the dramatic improvements myself.
Next, we did our "oooooo"s and "aaahhhhh"s and "eeeeee"s. He covered his mouth and I repeated back what I heard. I did well, but he raised the bar when he brought out "mmmmmm" and challenged me to recognize it when he alternated between "oooooooo" and "mmmmmm." Those are the two hardest sounds for me to recognize independently of lip-reading. "Aaahhhh" is the easiest!
We moved onto word recognition next. He covered his mouth and asked me to repeat back simple, everyday sentences we often encounter. I did pretty good! Some were more tricky than others. It was an encouraging experience for me though because when I did goof up, my mistakes were actually not too far off from the real words. Most of you know how crazy my sentences can be if I lip-read wrong! The most exciting part of this activity was I could acutely hear the sound "ssshhhh" which still blows my mind. So when my doctor said the word "see", I was slow to recognize it but I definitely heard the "sssss" sound at the beginning! These clues will help my brain learn how to hear better.
At the end of the appointment, my doctor said: "Just for fun, I'm going to put the program that you had before today's appointment, back on your processor." I said okay ... waited a few seconds ... then my doctor started talking but I couldn't hear him. So I lipread him saying: "Its on." I couldn't believe it. The first program I had on my 1st day was so quiet compared to the one I have on now. That whole first 20 minutes of the appointment where I was listening to hoof beats, he was gradually stimulating my auditory nerves, increasing the intensity. He showed this to me on his computer screen -- it was very cool to see where my neurons were firing! I have a lot more juice in my implant now!
I left the appointment excited about my progress!
Wednesday and Thursday evening were challenging, however. After so much stimulation, I was exhausted in the evenings. My doctor had warned me that there would be times when I just wanted to take my processor (my hearing aid) off because I'd be so tired of sound. I thought he was nuts when he told me this but I definitely understand now.
After a full day of work and then class, when I get home, I'm wiped out. Everything sounds louder and more intense. My darling dogs--I've wanted to hurl them out the door because they just LOOOOVVEEEE barking hello at everyone who walks by the window. Or leaves. Or sometimes, nothing at all! The barking is so intense. I used to think Matthew had very little tolerance for their racket but now, I completely understand. I hate barking.
My friend made me feel better about my frustration over being so tired in the evenings. She told me I was like a newborn! Babies sleep so much because they're thrust into this new world of sound and activity. My brain is so overstimulated at the end of the day, I'm just tired! Yesterday was better -- I was able to go out with some good friends and I had a good time.
And now...I'm sitting outside on my lovely patio listening to birds!!! I was out here studying and noticed I kept hearing this repetitive sound. I asked Matthew to come outside and help me figure out what I was hearing. I wagged my finger to show him each time I heard the sound. Immediately he started grinning and told me I was hearing birds! I've never heard birds before!!! Annnnd I thought I was also hearing some odd white noise because it was a fast tapping sound....but those sounds are baby birds talking to loud momma bird!!! Haha! I love this.
So this is where I"ll be for a majority of the afternoon...working on my paper, listening to the birds.
=)
I go back to Baltimore on Tuesday for another sound mapping appointment. I'll post again soon!
Love,
Becky
Fairfax, Virginia weather has finally turned a corner. Its a gorgeous Saturday morning so I'm sitting on the patio of my apartment, enjoying the sunshine and warm temperatures. I'm also having fun with "outside" sounds!
But let me back up a second and talk about how the rest of the week has been unfolding.
On Wednesday, Matthew and I returned to Baltimore for my 2nd day of Activation. The first twenty minutes of the appointment, I just sat there and listened to a rhythmic, repetitive sound very similar to hoof beats. Every once in a while, I'd notice the rhythm would change slightly, either slowing down or subtly increasing in volume. After my doctor was satisfied with the sound mapping he had completed, he turned my implant back on to the normal setting.
We did a variety of therapeutic activities. First, he opened his little box of musical instruments and shook, rang, and banged the different instruments and asked me to describe the sound. What I heard was a dramatic improvement from my 1st day -- instead of hearing a swooshing, buzzing sound when he shook a particular rattle, I heard a squeaky sound. His face lit up with delight because what I was hearing was much closer to the natural sound the instrument was producing. When he rang his little bell, it definitely sounded like a ring-a-ling rather than a buzz-a-buzz! This simple exercise was so exciting because I could see the dramatic improvements myself.
Next, we did our "oooooo"s and "aaahhhhh"s and "eeeeee"s. He covered his mouth and I repeated back what I heard. I did well, but he raised the bar when he brought out "mmmmmm" and challenged me to recognize it when he alternated between "oooooooo" and "mmmmmm." Those are the two hardest sounds for me to recognize independently of lip-reading. "Aaahhhh" is the easiest!
We moved onto word recognition next. He covered his mouth and asked me to repeat back simple, everyday sentences we often encounter. I did pretty good! Some were more tricky than others. It was an encouraging experience for me though because when I did goof up, my mistakes were actually not too far off from the real words. Most of you know how crazy my sentences can be if I lip-read wrong! The most exciting part of this activity was I could acutely hear the sound "ssshhhh" which still blows my mind. So when my doctor said the word "see", I was slow to recognize it but I definitely heard the "sssss" sound at the beginning! These clues will help my brain learn how to hear better.
At the end of the appointment, my doctor said: "Just for fun, I'm going to put the program that you had before today's appointment, back on your processor." I said okay ... waited a few seconds ... then my doctor started talking but I couldn't hear him. So I lipread him saying: "Its on." I couldn't believe it. The first program I had on my 1st day was so quiet compared to the one I have on now. That whole first 20 minutes of the appointment where I was listening to hoof beats, he was gradually stimulating my auditory nerves, increasing the intensity. He showed this to me on his computer screen -- it was very cool to see where my neurons were firing! I have a lot more juice in my implant now!
I left the appointment excited about my progress!
Wednesday and Thursday evening were challenging, however. After so much stimulation, I was exhausted in the evenings. My doctor had warned me that there would be times when I just wanted to take my processor (my hearing aid) off because I'd be so tired of sound. I thought he was nuts when he told me this but I definitely understand now.
After a full day of work and then class, when I get home, I'm wiped out. Everything sounds louder and more intense. My darling dogs--I've wanted to hurl them out the door because they just LOOOOVVEEEE barking hello at everyone who walks by the window. Or leaves. Or sometimes, nothing at all! The barking is so intense. I used to think Matthew had very little tolerance for their racket but now, I completely understand. I hate barking.
My friend made me feel better about my frustration over being so tired in the evenings. She told me I was like a newborn! Babies sleep so much because they're thrust into this new world of sound and activity. My brain is so overstimulated at the end of the day, I'm just tired! Yesterday was better -- I was able to go out with some good friends and I had a good time.
And now...I'm sitting outside on my lovely patio listening to birds!!! I was out here studying and noticed I kept hearing this repetitive sound. I asked Matthew to come outside and help me figure out what I was hearing. I wagged my finger to show him each time I heard the sound. Immediately he started grinning and told me I was hearing birds! I've never heard birds before!!! Annnnd I thought I was also hearing some odd white noise because it was a fast tapping sound....but those sounds are baby birds talking to loud momma bird!!! Haha! I love this.
So this is where I"ll be for a majority of the afternoon...working on my paper, listening to the birds.
=)
I go back to Baltimore on Tuesday for another sound mapping appointment. I'll post again soon!
Love,
Becky
Wednesday, April 18, 2007
My First 24 Hours!
Yesterday morning at 10:00 my cochlear implant was turned on for the first time. Nothing could have prepared me for what I experienced.
On the drive up to Johns Hopkins, I alternated between feelings of excitement, anxiety, and dread. While I was excited, yet nervous, to finally experience my first day of hearing through the implant, I was dreading the worse. What if it didn't work? What if my expectations are too high? What if I end up regretting my decision to have the surgery in the first place? These thoughts tumbled around in my brain as we made our way to Baltimore.
After being stuck in the most horrific traffic jam, we barely made it to my appointment on time. My audiologost, Ryan Carpenter, greeted us with a smile and asked, "are you ready?" I grinned and responded with an eager "yes" and followed him to his office. It was surreal walking down the hall because I knew in a few minutes, my life would be changed forever.
I signed some paperwork and we talked about my recovery. I fidgeted in my chair. Then it was TIME. He placed a large box on his desk filled with equipment and little gadgets. I would take the entire thing home with me. There were TWO hearing aids in there, along with TWO external processors, and EIGHT batteries! I couldn't believe all the equipment I was being given. I was fully aware of the monetary value of the equipment in front of me. I'm grateful to have backups to my backups! God bless medical insurance.
He started to assemble my hearing aid and external processor, hooking it up to a long cord connected to his computer. Then I had my first refrigerator moment -- he placed the external processor on my skull, directly over the magnetic plate. I had a magnet on my head! I played around with it for a few minutes, very amused with how well it stuck to my head.
After a few moments of Ryan describing to me what I'd hear at first, he finally turned it ON. Although he gradually raised the volume, the first time I heard a sound, I jumped out of my skin. I heard a robotic, buzzing noise and after a few seconds, I realized that sound was my voice and Ryan's!
I had to relax for a second, I was completely thrown off guard. Then the fun stuff started. He shuffled papers and I heard it! He opened his desk drawer to retrieve a pen and I heard stuff rattling around in the drawer! He reached into his filing cabinet and as he moved through files, I heard the metal hooks scraping on the file holder. He held a paper over his mouth and made "eeeee" sounds, then "aaahhhh" sounds, and then finally, "ooooooo" sounds. I could tell them apart pretty well. Next, he placed a sheet of paper in front of me with several rows of three words. Then, covering his mouth, he would say one word on that line and I'd repeat it back. With the visual cue, I realized I could immediately pick up on syllables; specifically, I was able to detect 3 syllables in the word "qualification" and they sounded so crisp and acute. While it'd be unlikely I could repeat a word without a visual cue, I was excited because this was new -- acute syllables!
At the end of the appointment, Ryan warned me that when I left his office, I'd hear a constant stream of sound. Matthew would have to help me figure out what I heard. He wasn't kidding! When I put on my jacket, I was startled and it took a second before Matthew realized that what I was hearing was the rustle of my jacket! Then as I left Ryan's office, I acutely heard the rattle of the doorknob. We were very slow leaving the hospital, stopping every few minutes to point out new sounds. An elevator ding. A baby coughing around the corner. Feet shuffling on the lobby floor. A woman digging her keys out of her purse behind me. While I've heard sounds like this before, I've never heard them so crisply or acutely. They are very specific sounds that stand out of me, rather than blending into a background of chaotic noise. I hear sounds, not noise. When we left the hospital, I had my first teary-eyed moment when I heard the wind. Now, I've heard wind before, but not the sound of wind...with my old hearing aids, wind rushing by the microphones created noise and made it hard to hear a person talking--not pleasant. But yesterday, I stood facing the wind, and it sounded so incredibly different. It whooshed!
Last night, Matthew and I had the chance to talk to my family. We called home and I got to talk to aunts, uncles, my parents, and my grandparents. I'm lucky to have such a supportive family!!! I can't wait to go home and share my experiences. After the phone call, Matthew and I had a lot of fun in the apartment. We played music for a little while on the surround sound. He played 10,000 Maniacs for me and I loved it because I could hear all these crazy percussions going on in the background that I have never been able to hear before. Rather than hearing a big mess of sounds, I could detect individual parts of the song. Very cool experience. I heard my dog crunching on her dog food. The salad bag or the potato chip bag crinkles in a way its never crinkled before...loudly and crisply!
Today, I return to Johns Hopkins for my 2nd day of sound mapping with Ryan. I'm excited because he's supposed to make it even louder! Right now, the things that will sound the best are simple sounds. My finger tapping on a desk, a zipper opening and closing, or my lips smacking as I eat crackers and peanut butter! Ryan assured me that within a week, human voices should sound less robotic and more human. But thats ok...I'm enjoying the simple sounds right now because they are all new experiences for me. While I've heard fingers tapping before, never like this.
Crisp. Defined. Specific.
Thank you, everyone, for your continued support and prayers. I really feel everyone's good wishes...I'm lucky to have so many positive individuals in my life to share this experience with. I will post again tomorrow!
Love,
Becky
On the drive up to Johns Hopkins, I alternated between feelings of excitement, anxiety, and dread. While I was excited, yet nervous, to finally experience my first day of hearing through the implant, I was dreading the worse. What if it didn't work? What if my expectations are too high? What if I end up regretting my decision to have the surgery in the first place? These thoughts tumbled around in my brain as we made our way to Baltimore.
After being stuck in the most horrific traffic jam, we barely made it to my appointment on time. My audiologost, Ryan Carpenter, greeted us with a smile and asked, "are you ready?" I grinned and responded with an eager "yes" and followed him to his office. It was surreal walking down the hall because I knew in a few minutes, my life would be changed forever.
I signed some paperwork and we talked about my recovery. I fidgeted in my chair. Then it was TIME. He placed a large box on his desk filled with equipment and little gadgets. I would take the entire thing home with me. There were TWO hearing aids in there, along with TWO external processors, and EIGHT batteries! I couldn't believe all the equipment I was being given. I was fully aware of the monetary value of the equipment in front of me. I'm grateful to have backups to my backups! God bless medical insurance.
He started to assemble my hearing aid and external processor, hooking it up to a long cord connected to his computer. Then I had my first refrigerator moment -- he placed the external processor on my skull, directly over the magnetic plate. I had a magnet on my head! I played around with it for a few minutes, very amused with how well it stuck to my head.
After a few moments of Ryan describing to me what I'd hear at first, he finally turned it ON. Although he gradually raised the volume, the first time I heard a sound, I jumped out of my skin. I heard a robotic, buzzing noise and after a few seconds, I realized that sound was my voice and Ryan's!
I had to relax for a second, I was completely thrown off guard. Then the fun stuff started. He shuffled papers and I heard it! He opened his desk drawer to retrieve a pen and I heard stuff rattling around in the drawer! He reached into his filing cabinet and as he moved through files, I heard the metal hooks scraping on the file holder. He held a paper over his mouth and made "eeeee" sounds, then "aaahhhh" sounds, and then finally, "ooooooo" sounds. I could tell them apart pretty well. Next, he placed a sheet of paper in front of me with several rows of three words. Then, covering his mouth, he would say one word on that line and I'd repeat it back. With the visual cue, I realized I could immediately pick up on syllables; specifically, I was able to detect 3 syllables in the word "qualification" and they sounded so crisp and acute. While it'd be unlikely I could repeat a word without a visual cue, I was excited because this was new -- acute syllables!
At the end of the appointment, Ryan warned me that when I left his office, I'd hear a constant stream of sound. Matthew would have to help me figure out what I heard. He wasn't kidding! When I put on my jacket, I was startled and it took a second before Matthew realized that what I was hearing was the rustle of my jacket! Then as I left Ryan's office, I acutely heard the rattle of the doorknob. We were very slow leaving the hospital, stopping every few minutes to point out new sounds. An elevator ding. A baby coughing around the corner. Feet shuffling on the lobby floor. A woman digging her keys out of her purse behind me. While I've heard sounds like this before, I've never heard them so crisply or acutely. They are very specific sounds that stand out of me, rather than blending into a background of chaotic noise. I hear sounds, not noise. When we left the hospital, I had my first teary-eyed moment when I heard the wind. Now, I've heard wind before, but not the sound of wind...with my old hearing aids, wind rushing by the microphones created noise and made it hard to hear a person talking--not pleasant. But yesterday, I stood facing the wind, and it sounded so incredibly different. It whooshed!
Last night, Matthew and I had the chance to talk to my family. We called home and I got to talk to aunts, uncles, my parents, and my grandparents. I'm lucky to have such a supportive family!!! I can't wait to go home and share my experiences. After the phone call, Matthew and I had a lot of fun in the apartment. We played music for a little while on the surround sound. He played 10,000 Maniacs for me and I loved it because I could hear all these crazy percussions going on in the background that I have never been able to hear before. Rather than hearing a big mess of sounds, I could detect individual parts of the song. Very cool experience. I heard my dog crunching on her dog food. The salad bag or the potato chip bag crinkles in a way its never crinkled before...loudly and crisply!
Today, I return to Johns Hopkins for my 2nd day of sound mapping with Ryan. I'm excited because he's supposed to make it even louder! Right now, the things that will sound the best are simple sounds. My finger tapping on a desk, a zipper opening and closing, or my lips smacking as I eat crackers and peanut butter! Ryan assured me that within a week, human voices should sound less robotic and more human. But thats ok...I'm enjoying the simple sounds right now because they are all new experiences for me. While I've heard fingers tapping before, never like this.
Crisp. Defined. Specific.
Thank you, everyone, for your continued support and prayers. I really feel everyone's good wishes...I'm lucky to have so many positive individuals in my life to share this experience with. I will post again tomorrow!
Love,
Becky
Tuesday, March 27, 2007
Feeling Good!
Greetings! It has been almost 3 weeks since my surgery and I feel great. Things have dramatically improved since last week. My energy levels, in particular, are getting back to normal. It is a beautiful feeling! Yesterday, I was a bad patient. While taking my dogs for a walk after work, I couldn't resist -- the weather was beautiful, there was a gentle breeze, my dogs were happy, I was happy...I felt so good, I took my walk up a notch and jogged for the 1st time...but just a little! My doctors told me to wait 4 weeks before exercising or otherwise raising my blood pressure. I don't think I elevated it that much. Besides, my spirit soared -- that has to count for something, right?
Sensations in my scalp and ear are gradually returning. My head itches these days from the glue slowly peeling off my wound (no stitches, just glue!). It feels like a scab-- you want to pick it because it itches and there's a little piece that can be pulled off so easily but you know you shouldn't. So I've been trying my best to leave it alone. Matthew checks it regularly for me to make sure it stays clean and continues to heal properly. My tongue is still a little numb on the right side and my taste buds are still kinda funky. But things feel better since last week...again, progress!
My biggest challenge these days is lip-reading. Since they severed the hearing in my right ear, I am relying only on my left hearing aid and even that sounds different. I feel like my ears are plugged -- so everything sounds more muffled than I'm used to. This past weekend, Matthew and I went to a wedding (which was the most beautiful event ever...congratulations Jesus and Heather!!) and while I had a great time, I quickly developed a headache from trying to lip read so many different people at the reception. Work is a lot easier because I work independently a majority of my day. When I do need to communicate with someone, the office is quiet so the environment is not nearly as stressful as a loud, dimly-lit reception hall. On Saturday, we'll be heading up to Penn State for my Lady Icer Alumni Weekend. I'm excited to see old friends but definitely worried about the communication aspect.
April 17th is "Activation Day." I'll head back up to Johns Hopkins and they'll turn on the implant for the first time! It'll be my first opportunity to experience the cochlear implant. I will return to the hospital the next day, on April 18th, for another appointment. The purpose of the 2nd day meeting is to review the first 24 hours of hearing through the implant and make the first "tweaks" to the device. These "tweaks" are called "sound mapping." A week after my 1st activation, I'll go return to Baltimore for my 3rd appointment and then my 4th is a month later. I go back up several times over the next 12 months.
Technically, my activation day should have been in the next two weeks. However, my audiologist will be on vacation! So I have the first appointment for when he returns. I'm so excited for activation day, I hope the next 21 days go back quickly!!!
Love,
Becky
Sensations in my scalp and ear are gradually returning. My head itches these days from the glue slowly peeling off my wound (no stitches, just glue!). It feels like a scab-- you want to pick it because it itches and there's a little piece that can be pulled off so easily but you know you shouldn't. So I've been trying my best to leave it alone. Matthew checks it regularly for me to make sure it stays clean and continues to heal properly. My tongue is still a little numb on the right side and my taste buds are still kinda funky. But things feel better since last week...again, progress!
My biggest challenge these days is lip-reading. Since they severed the hearing in my right ear, I am relying only on my left hearing aid and even that sounds different. I feel like my ears are plugged -- so everything sounds more muffled than I'm used to. This past weekend, Matthew and I went to a wedding (which was the most beautiful event ever...congratulations Jesus and Heather!!) and while I had a great time, I quickly developed a headache from trying to lip read so many different people at the reception. Work is a lot easier because I work independently a majority of my day. When I do need to communicate with someone, the office is quiet so the environment is not nearly as stressful as a loud, dimly-lit reception hall. On Saturday, we'll be heading up to Penn State for my Lady Icer Alumni Weekend. I'm excited to see old friends but definitely worried about the communication aspect.
April 17th is "Activation Day." I'll head back up to Johns Hopkins and they'll turn on the implant for the first time! It'll be my first opportunity to experience the cochlear implant. I will return to the hospital the next day, on April 18th, for another appointment. The purpose of the 2nd day meeting is to review the first 24 hours of hearing through the implant and make the first "tweaks" to the device. These "tweaks" are called "sound mapping." A week after my 1st activation, I'll go return to Baltimore for my 3rd appointment and then my 4th is a month later. I go back up several times over the next 12 months.
Technically, my activation day should have been in the next two weeks. However, my audiologist will be on vacation! So I have the first appointment for when he returns. I'm so excited for activation day, I hope the next 21 days go back quickly!!!
Love,
Becky
Thursday, March 15, 2007
Recovery is Hard...
Today, I'm back at home on my couch.
Tuesday, I moved around the apartment a lot and was productive. I loaded the dishwasher, read a few pages in my textbook, and made dinner. Based on my successful day at home, I decided to go to work on Wednesday. I was so excited to get out of the apartment! Cabin fever had set in.
Wednesday morning was tricky. I was running late because I couldn't figure out how to make gauze stick to my head and cover my wound. The headband I had purchased for this purpose was not working out as I hoped. I finally got it set in place and rushed out the door to my ride. My friend, Stephanie, an old college friend and teammate, was kind enough to offer to drive me to work! (Mental note to self -- buy head scarves this weekend.)
The morning went well. I was very productive. Work had piled up for me while I was gone but I was working through one thing at a time, enjoying being back in the office and being around other people again. During my lunch hour, I started to feel tired. I went back to my desk and worked for another couple of hours. At one point, I had to walk a form across the office to another desk and while doing so, I realized I was feeling light headed and a little unsteady on my feet. When I got back to my desk, I just sat there and slowly, a wave of complete and total body exhaustion overcame me. Worse, my head started to feel like a 20 pound bowling ball rolling around on my neck. My equilibrium was thrown off, and I felt like I did the day after I came home from the hospital. Needless to say, I was taken home from work early. I'm very grateful to two of my coworkers who drove me home and set me back up on my couch.
Last night, I was really depressed. I am not used to feeling this way -- so out of control and easily fatigued. Me? Tired? Never! I'm used to running at 6 in the morning before work, then working all day, then going to class at night, and doing homework afterwards! I'm not used to this extended period of feeling like I have so little stamina. I was not prepared for this. So I'm bummed out.
Today, I'm home. I'm going to take it easy. I'll work on my midterm paper and take my dogs out when they need to. I'm going to try to walk around my apartment complex for ten minute periods every now and then, just to get my legs moving again. Maybe tomorrow I can do a half-day at work. We'll see.
On a different note, my wound is healing beautifully. I'm starting to feel my skull and the skin around my wound again. I still can't feel my ear or the right side of my tongue. Something else has happened. Whenever I talk, or hum, I hear this low buzzing sound in my ear. The doctors told me this might happen but it still freaks me out! I feel like I have someone following me around with the emergency broadcast channel on the television! I now know for sure that the implant is in there! I can hear it! :)
Love,
Becky
Tuesday, I moved around the apartment a lot and was productive. I loaded the dishwasher, read a few pages in my textbook, and made dinner. Based on my successful day at home, I decided to go to work on Wednesday. I was so excited to get out of the apartment! Cabin fever had set in.
Wednesday morning was tricky. I was running late because I couldn't figure out how to make gauze stick to my head and cover my wound. The headband I had purchased for this purpose was not working out as I hoped. I finally got it set in place and rushed out the door to my ride. My friend, Stephanie, an old college friend and teammate, was kind enough to offer to drive me to work! (Mental note to self -- buy head scarves this weekend.)
The morning went well. I was very productive. Work had piled up for me while I was gone but I was working through one thing at a time, enjoying being back in the office and being around other people again. During my lunch hour, I started to feel tired. I went back to my desk and worked for another couple of hours. At one point, I had to walk a form across the office to another desk and while doing so, I realized I was feeling light headed and a little unsteady on my feet. When I got back to my desk, I just sat there and slowly, a wave of complete and total body exhaustion overcame me. Worse, my head started to feel like a 20 pound bowling ball rolling around on my neck. My equilibrium was thrown off, and I felt like I did the day after I came home from the hospital. Needless to say, I was taken home from work early. I'm very grateful to two of my coworkers who drove me home and set me back up on my couch.
Last night, I was really depressed. I am not used to feeling this way -- so out of control and easily fatigued. Me? Tired? Never! I'm used to running at 6 in the morning before work, then working all day, then going to class at night, and doing homework afterwards! I'm not used to this extended period of feeling like I have so little stamina. I was not prepared for this. So I'm bummed out.
Today, I'm home. I'm going to take it easy. I'll work on my midterm paper and take my dogs out when they need to. I'm going to try to walk around my apartment complex for ten minute periods every now and then, just to get my legs moving again. Maybe tomorrow I can do a half-day at work. We'll see.
On a different note, my wound is healing beautifully. I'm starting to feel my skull and the skin around my wound again. I still can't feel my ear or the right side of my tongue. Something else has happened. Whenever I talk, or hum, I hear this low buzzing sound in my ear. The doctors told me this might happen but it still freaks me out! I feel like I have someone following me around with the emergency broadcast channel on the television! I now know for sure that the implant is in there! I can hear it! :)
Love,
Becky
Sunday, March 11, 2007
The Days Afterwards...
This morning when I woke up, I felt the best I have felt in 3 days. Matthew and my mom have been wonderful angels, helping me with everything. I'm very grateful for the both of them.
The surgery was a success, no complications and no unexpected surprises. For me, the worst was waking up from the anethesia. I got really sick and was in a lot of pain so they put me back under for two more hours. Finally I was able to be moved to recovery, much to the relief of my anxiety-ridden spouse and mom! Since they intubated me during the surgery, I woke up with dry, sore throat, which is still bothering me 3 days later.
I've spent the last 72 hours in my big, oversized recliner. Dr. Niparko was not kidding when he said I might feel dizzy or have vertigo...I've been unable to get around the apartment independently. So I've been watching a lot of "parts" of movies since I usually doze on and off all day. My pain medicine is wonderful but it definitely puts me in lala land. Today I'm going to try to wean myself off of it and see how it goes.
I have two other really weird side effects: (1) The right side of my tongue is numb and (2) I hear poprocks in my ear, just the candy. Tiny little poppys go off when I shift around my body weight too much, or turn when I stand up. Very strange!
Well, thats my update! I'm glad the surgery is over and now I get to work on growing my hair back! Thanks again, everyone for your wonderful emails and text messages! Love to you all!
Becky
The surgery was a success, no complications and no unexpected surprises. For me, the worst was waking up from the anethesia. I got really sick and was in a lot of pain so they put me back under for two more hours. Finally I was able to be moved to recovery, much to the relief of my anxiety-ridden spouse and mom! Since they intubated me during the surgery, I woke up with dry, sore throat, which is still bothering me 3 days later.
I've spent the last 72 hours in my big, oversized recliner. Dr. Niparko was not kidding when he said I might feel dizzy or have vertigo...I've been unable to get around the apartment independently. So I've been watching a lot of "parts" of movies since I usually doze on and off all day. My pain medicine is wonderful but it definitely puts me in lala land. Today I'm going to try to wean myself off of it and see how it goes.
I have two other really weird side effects: (1) The right side of my tongue is numb and (2) I hear poprocks in my ear, just the candy. Tiny little poppys go off when I shift around my body weight too much, or turn when I stand up. Very strange!
Well, thats my update! I'm glad the surgery is over and now I get to work on growing my hair back! Thanks again, everyone for your wonderful emails and text messages! Love to you all!
Becky
Thursday, March 8, 2007
Today's the Day!
Good morning! I slept well last night. I went to bed at a decent hour and got a lot of help drifting off to sleep from my wonderful text book on health care law. I went for a walk this morning, watched the news, and now Matthew and mom are eating breakfast. We'll be leaving around 8:30. Baltimore is only about 47 miles from here but rush hour traffic plus "patchy ice" will promise at least an hour and a half drive...then of course, there's always the risk of running into accidents or construction or cows crossing the road...ok, maybe not the cows part. Anyway, I have to be there at 11am. The surgery is set for 1pm.
Tuesday morning I finally received official confirmation from my insurance company that they will pay for 100% of the procedure and that my co-pay will be about $130.00! I'm so blessed. I was very worried about the co-pay...different insurance companies have different policies on their co-pays...we'll gladly pay the $130.
Thank you everyone, again, for words of encouragement and support. I've loved your emails, your comments posted on my blog, and your text messages!! I'll let everyone know how it goes as soon as I can. Love to you all!!!
Love,
Becky
Tuesday morning I finally received official confirmation from my insurance company that they will pay for 100% of the procedure and that my co-pay will be about $130.00! I'm so blessed. I was very worried about the co-pay...different insurance companies have different policies on their co-pays...we'll gladly pay the $130.
Thank you everyone, again, for words of encouragement and support. I've loved your emails, your comments posted on my blog, and your text messages!! I'll let everyone know how it goes as soon as I can. Love to you all!!!
Love,
Becky
Tuesday, February 20, 2007
The Surgery and My New Hairstyle
I am touched by how many of you have left comments and emailed me after my first blog post. Thank you! Along with wishes of support and excitement, many of you had questions. What exactly will the surgery do for me?
Well, as I already stated in my first post, a cochlear implant is not a cure. Rather, it is a piece of technology that will ultimately give me access to a greater range of sound frequencies. My current hearing loss limits my sound awareness to low frequencies, preventing me from hearing sounds like birds chirping, a person whistling, or certain letters of our alphabet. Advanced Bionic's new technology is impressive in that the number of outputs on the processor and implant have increased, enabling the device to pick up and transmit to me, a greater range of the natural spectrum of sound. With time and therapy, I will learn to decipher these new sounds so they become meaningful and recognizable for me. In the beginning, I will be asking "what is that sound?" a lot! Thankfully, Matthew is one of the most patient individuals I know.
While I'm excited for the days after the surgery, I'm nervous about the procedure itself. I have full confidence in my doctors that they will do an excellent job; that is not my concern. The greatest source of anxiety for me, personally, is that at the start of the surgery, my doctors will sever the remainder of my natural hearing. From that moment on, I will never have any normal hearing in my right ear again. I was telling Matthew the other day that I had this mental image of myself putting in my right hearing aid one morning a few weeks after the surgery..just out of habit...and after turning it on -- nothing will happen. My stomach does flip flops at that image...it's a scary thought for me.
Back to the procedure itself...the surgeon will drill a tiny tunnel through my skull to the cochlea of my ear. They will insert the electrode array (the implant) through the tunnel and place it in the cochlea. After the device is implanted, they stitch me up, bandage my head, and I'm done! Some of you have asked...and yes, they will shave some of my hair off. While a buzz cut is a small sacrifice to make, I'm still a girl, I'm still vain, and it will still make me grimace when I look in the mirror. =( But no worries -- it won't be nearly as dramatic as Brittney Spears.
After the surgery, I will be given a month to heal and then I return to John Hopkins for "activation day." On that day, they will turn on the implant in my head and I'll be using it for the first time. The whole idea of an "activation day" is kind of weird to think about; it'll be an interesting experience. When they turn it on for the first time, I will not have an "aha!" moment where I'll immediately be able to pick up the phone and call someone. Rather, it'll be a slow, gradual process of my brain learning to interpret these new sound vibrations.
So in a nutshell, that is what I have ahead of me for the next month or so. I hope this post gives you a better idea of what the surgery is about and what my first experiences will be. 15 days!
Love,
Becky
Well, as I already stated in my first post, a cochlear implant is not a cure. Rather, it is a piece of technology that will ultimately give me access to a greater range of sound frequencies. My current hearing loss limits my sound awareness to low frequencies, preventing me from hearing sounds like birds chirping, a person whistling, or certain letters of our alphabet. Advanced Bionic's new technology is impressive in that the number of outputs on the processor and implant have increased, enabling the device to pick up and transmit to me, a greater range of the natural spectrum of sound. With time and therapy, I will learn to decipher these new sounds so they become meaningful and recognizable for me. In the beginning, I will be asking "what is that sound?" a lot! Thankfully, Matthew is one of the most patient individuals I know.
While I'm excited for the days after the surgery, I'm nervous about the procedure itself. I have full confidence in my doctors that they will do an excellent job; that is not my concern. The greatest source of anxiety for me, personally, is that at the start of the surgery, my doctors will sever the remainder of my natural hearing. From that moment on, I will never have any normal hearing in my right ear again. I was telling Matthew the other day that I had this mental image of myself putting in my right hearing aid one morning a few weeks after the surgery..just out of habit...and after turning it on -- nothing will happen. My stomach does flip flops at that image...it's a scary thought for me.
Back to the procedure itself...the surgeon will drill a tiny tunnel through my skull to the cochlea of my ear. They will insert the electrode array (the implant) through the tunnel and place it in the cochlea. After the device is implanted, they stitch me up, bandage my head, and I'm done! Some of you have asked...and yes, they will shave some of my hair off. While a buzz cut is a small sacrifice to make, I'm still a girl, I'm still vain, and it will still make me grimace when I look in the mirror. =( But no worries -- it won't be nearly as dramatic as Brittney Spears.
After the surgery, I will be given a month to heal and then I return to John Hopkins for "activation day." On that day, they will turn on the implant in my head and I'll be using it for the first time. The whole idea of an "activation day" is kind of weird to think about; it'll be an interesting experience. When they turn it on for the first time, I will not have an "aha!" moment where I'll immediately be able to pick up the phone and call someone. Rather, it'll be a slow, gradual process of my brain learning to interpret these new sound vibrations.
So in a nutshell, that is what I have ahead of me for the next month or so. I hope this post gives you a better idea of what the surgery is about and what my first experiences will be. 15 days!
Love,
Becky
Friday, February 16, 2007
Welcome!
Growing up, some of my friends affectionately described parts of my vocabulary as "Becky words." Until someone corrected me in middle school, I always thought the word "herb" was pronounced with an emphasis on the letter h. I never knew it was silent! Cello was "shello" and chocolate was "shocolate."
This year, some of my "Becky words" just might fade into extinction.
This past November, my older brother, Matt, emailed me a link to a CNN news briefing reviewing recent technological developments of the cochlear implant. Specifically, the news article reviewed Advanced Bionic's latest developments. From that first day reading about the HiResolution Technology, I was hooked.
After a month of research, I made a very personal decision to begin the candidacy process of obtaining a cochlear implant.
On March 8, 2007, I will have the surgery at John Hopkins Hospital.
For many of you, this will be the first time you're hearing about this. Outside my most immediate family members and a few friends, I have kept this information to myself. In order to have the procedure, I had to be medically tested to determine my eligibility to receive the implant. Just last week, I completed the final medical exam, which was a CT scan of my brain and the anatomy of my ear. Until the medical team at John Hopkins gave me a thumbs-up, I maintained a very guarded optimism about the procedure. I was worried that because I do so well with lip-reading and bilateral hearing aids, I would not be eligible to receive the implant.
My concerns were put to ease when both of my primary doctors on the surgical team echoed their decisions: "You are an excellent candidate for a cochlear implant." I couldn't believe it! I still can't believe it.
As they explained, there are two primary reasons behind their decision.
1. My medical diagnosis is progressive hearing loss. When I was born, I was most likely hearing. Doctors believe I began to lose my hearing immediately after birth. After I was fitted for bilateral hearing aids as a toddler, my hearing continued to decline incrementally throughout my childhood. The point is this: my brain knows what sound, sounds like. My brain has a stored vocabulary of what a dog's bark is, what a lawn motor sounds like, and what laughter means. Therefore, when the implant is activated, neural pathways in my brain will transform the vibrations into meaningful sounds.
2. I lip-read like its my job! In order to understand simple human conversation, I rely 99% on lipreading. I also use environmental cues to figure out what a sound is. These are cognitive and problem-solving skills that I will use when I'm learning to hear with the implant. My implant will receive the sound, my brain will register it, then I will lip-read or see the book that just fell on the floor, and figure out exactly what I just heard. This process will take six to twelve months before I begin to see real results.
A cochlear implant is absolutely not a cure. Rather, it is a very powerful technological device that will allow me the opportunity to hear a much greater range of frequencies of sound. My hearing loss limits how much of the letter "s" I hear, or the word "grass" I understand. The implant, with intensive therapy and training, will enable me to possibly hear all of the letter "s" and all of the word "grass." Eventually, my sound comprehension will increase dramatically and understanding simple conversations will become much easier for me.
Starting the process of receiving a cochlear implant is definitely a milestone decision in life. Since Matthew and I are living in Fairfax, Virginia, far away from our closest family and friends, I needed to come up with a way to share my news and as the months go by, highlights of my therapy. Sending the same generic email to everyone seemed impersonal so Matthew made the excellent suggestion that I create a blog! My sister-in-law, Leah, started a blog to document her experiences as a 1st year medical student and we've enjoyed reading it so much. Her blog keeps us informed of whats going on with her, 500 miles away in snowy Vermont!
On a regular basis, I will post updates as the weeks go by with the implant. I'll post again before the surgery to explain more about why I've decided now to get the surgery. You'll be able to write back, or leave comments, if you want to. I hope you enjoy my blog and I'm looking forward to sharing my experiences with you!
Love,
Becky
This year, some of my "Becky words" just might fade into extinction.
This past November, my older brother, Matt, emailed me a link to a CNN news briefing reviewing recent technological developments of the cochlear implant. Specifically, the news article reviewed Advanced Bionic's latest developments. From that first day reading about the HiResolution Technology, I was hooked.
After a month of research, I made a very personal decision to begin the candidacy process of obtaining a cochlear implant.
On March 8, 2007, I will have the surgery at John Hopkins Hospital.
For many of you, this will be the first time you're hearing about this. Outside my most immediate family members and a few friends, I have kept this information to myself. In order to have the procedure, I had to be medically tested to determine my eligibility to receive the implant. Just last week, I completed the final medical exam, which was a CT scan of my brain and the anatomy of my ear. Until the medical team at John Hopkins gave me a thumbs-up, I maintained a very guarded optimism about the procedure. I was worried that because I do so well with lip-reading and bilateral hearing aids, I would not be eligible to receive the implant.
My concerns were put to ease when both of my primary doctors on the surgical team echoed their decisions: "You are an excellent candidate for a cochlear implant." I couldn't believe it! I still can't believe it.
As they explained, there are two primary reasons behind their decision.
1. My medical diagnosis is progressive hearing loss. When I was born, I was most likely hearing. Doctors believe I began to lose my hearing immediately after birth. After I was fitted for bilateral hearing aids as a toddler, my hearing continued to decline incrementally throughout my childhood. The point is this: my brain knows what sound, sounds like. My brain has a stored vocabulary of what a dog's bark is, what a lawn motor sounds like, and what laughter means. Therefore, when the implant is activated, neural pathways in my brain will transform the vibrations into meaningful sounds.
2. I lip-read like its my job! In order to understand simple human conversation, I rely 99% on lipreading. I also use environmental cues to figure out what a sound is. These are cognitive and problem-solving skills that I will use when I'm learning to hear with the implant. My implant will receive the sound, my brain will register it, then I will lip-read or see the book that just fell on the floor, and figure out exactly what I just heard. This process will take six to twelve months before I begin to see real results.
A cochlear implant is absolutely not a cure. Rather, it is a very powerful technological device that will allow me the opportunity to hear a much greater range of frequencies of sound. My hearing loss limits how much of the letter "s" I hear, or the word "grass" I understand. The implant, with intensive therapy and training, will enable me to possibly hear all of the letter "s" and all of the word "grass." Eventually, my sound comprehension will increase dramatically and understanding simple conversations will become much easier for me.
Starting the process of receiving a cochlear implant is definitely a milestone decision in life. Since Matthew and I are living in Fairfax, Virginia, far away from our closest family and friends, I needed to come up with a way to share my news and as the months go by, highlights of my therapy. Sending the same generic email to everyone seemed impersonal so Matthew made the excellent suggestion that I create a blog! My sister-in-law, Leah, started a blog to document her experiences as a 1st year medical student and we've enjoyed reading it so much. Her blog keeps us informed of whats going on with her, 500 miles away in snowy Vermont!
On a regular basis, I will post updates as the weeks go by with the implant. I'll post again before the surgery to explain more about why I've decided now to get the surgery. You'll be able to write back, or leave comments, if you want to. I hope you enjoy my blog and I'm looking forward to sharing my experiences with you!
Love,
Becky
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