Why I Haven’t Worn My CI In Five Weeks Wednesday, April 23, 2008

In my last post, I said that I hadn’t worn my CI for three weeks.

While I was at home over Spring Break, and chatting with my mom, I was itching, so I started to scratch my ear. She saw that my ear was red, and asked me to take off my CI, which revealed that it looked like I had contact dermatitis. My ear had been itching, but I never paid much attention to it, since I figured it was part of normal bodily functions, if you have a itch, you scratch it. Living alone, I can’t see the side of my neck/behind my ear, so I paid no attention to it.

Her thought was that the redness that was there, was along the same area where the CI Processor and the battery pack were resting against my skin. I stopped wearing it for two days, to let it subside, and on the third day, when I put it back on, it started to flare up again.

I went to the doctor, who said it looked like an allergic reaction, who then called a ENT specialist to see what he thought, and he agreed. I haven’t changed shampoo, or used anything that was new and could be possible triggers for an allergic reaction. Catherine was talking with the audiologists at AB, who sent me a list of questions, and decided to keep an eye on it and see what happens.

Thus began the journey of not wearing it for five and a half weeks, which was my decision. I finally put it back on Wednesday afternoon, April 16, as my boyfriend’s parents came up to visit. It was my first time meeting them, and I wanted to be sure I could hear them. By the time we got to Friday night, my ear was all red again, sore, and irritated. During the break with the CI, my ear felt much better, and wasn’t sore.

This is why I think there’s something with the processor/batteries that is causing me to have a reaction to the materials used (I suspect the paint). I’m back to wearing it off and on (depending on my mood) and what my day is going to be like.

My options at this point are to clean it with a alcohol wipe, put moleskin on it/behind my ear, and recently, somebody recommended clear nail polish. I’m a bit iffy about adding more chemicals or materials to the CI, as it’s heavy enough as it is, and I don’t want to void any warranties by modifying it. I want to wear it as it is. I haven’t had problems with the hearing aids, why am I having problems with the CI? That’s what I don’t understand.

Alarms Going Off Thursday, April 10, 2008

I’m sitting here at work right now, going through photos from this week’s photo shoots. I feel this beeping on the side of my head, on the CI side (I don’t have it on, and I haven’t worn it for about 3 weeks now), and I look up, confused at this noise which I don’t recognize, coming from all the way across the lab.

“Amy,” I say to my coworker sitting next to me, “it sounds like an alarm is going off.”

“Yeah, Kurt’s scanning the control strips.”

“Oh.”

Certainly was odd for me, because I couldn’t hear it in my left ear, even though that’s the only ear I’ve been listening with for the last three weeks, through my hearing aid. Yet, the sound feels like it’s coming in through my right CI ear, resonating on the right side of my head.

An update later on why I haven’t worn my CI for the last three weeks. I should get back and start wearing it, but at this point, I feel like why. Why bother?

The last few months or so, I’ve gotten to the point where I sometimes wonder why I even got the CI in the first place. Catherine told me that one of her other patients called it the post-CI high.

It’s not about which method, it’s about getting the information out there Monday, March 10, 2008

Again, it’s not a matter of which method one uses, but the fact that early exposure to language is the key. I’ve been asked whether having the cochlear implant or not will make a deaf child more “hearing”, and whether a parent should choose the oral only or sign only or both methods.

But here’s a story that may be of interest for that argument…it doesn’t matter, as long as you get the information out there to the child. Read out loud, show words, and sign…as long as the language is being shared, the better chance of success.

I got lucky though. My mom started off with the Auditory-Verbal method, and one day, I said to her, “Mommy, I can’t hear you. I can’t see your lips.” That’s when she realized that I had taught myself, at the age of 2, to read lips. That’s when she switched to the Auditory-Oral method.

Even during that, I was read to and read along with family members from an early age, and a love of books in the family helped me perform at above-grade level in English and Reading.

I didn’t get exposed to sign language on a regular basis until 6th grade, formally learning the language at 17 years old.

But while there are success stories, there are also stories of failure out there. Parents have picked one method, only to have it fail, and the child loses ground in language. That’s one of the risks that my mom took, and it paid off. Same thing with getting a cochlear implant, you don’t know until you try. There was a girl I went to JWPOSD with, whose parents took the same approach with her as mine did, but it just wasn’t working for her. I don’t know what’s happened to her since then.

This is why I believe that getting the information to the child using all available methods as early as possible, regardless of hearing ability, is the best way to go. I think it would be beautiful to engage as many of the senses one can.

Baby’s Got Book! Tot Can Read
An amazing 17-month-old girl rekindles the nature-versus-nurture debate

Today show
By Mike Celizic
TODAYShow.com contributor
updated 55 minutes ago

Elizabeth Barrett is to all appearances your standard 17-month-old girl, complete with wisps of gossamer hair so blond it’s almost white and the unsteady gait that is the definition of a toddler. As her parents and two other adults talk earnestly around her, she paws through a couple of large-format children’s books on a table, blissfully unaware of the conversation around her.

Then TODAY’s Ann Curry holds up a sheet of paper with the word “HAPPY” printed in big, block letters and asks Elizabeth to read it.

“Hap-py,” Elizabeth chirps without hesitation, enunciating each syllable in a bright little voice.

Curry holds up another sheet of paper.

“Zip-per,” Elizabeth says.

Curry goes on flashing words, none of which Elizabeth has been coached on, and the remarkable little girl reads them.

“Kang-a-roo.” “Flow-er.” “Nice to meet you.” “Take a bath.” “Good morning, Ann.”

This happened on the TODAY show Monday in New York. Elizabeth wasn’t showing off or performing, this sort of thing being old hat to her. Way back when she was 13 months old, she read her first word, says her mother, Katy Barrett of Lubbock, Texas.

The word was “corn,” and little Elizabeth read it on a cereal box at the supermarket. There was no picture of corn to give her a clue. She just pointed at the word and read it. She also signed the word in sign language.

Katy Barrett and her husband, Michael, are speech pathologists, and when Elizabeth was born, they said on Monday, they started teaching her sign language along with spoken language. They read to her often, and her favorite television program — the only one her parents let her watch — was a PBS show called “Signing Times,” which teaches kids sign language.

Yet, as much as her parents worked to stimulate her language skills, they were as astonished as anyone when she started picking out words and reading them, especially as they never attempted to teach her to read.

“We tried to do everything we could to try to stimulate her language growth,” Michael Barrett told Curry. “From day one Katy has been using sign language with her. We think anything relating to language is a good thing to nurture.”

Even so, he went on, that wouldn’t be enough to teach Elizabeth to read. “I think there’s more to it than that,” he said. “I think she has some special abilities that have just been a fortunate thing she’s been born with.”

“This is something we never expected,” added his wife. “We didn’t teach her this. We don’t sit down and drill her on words. She loves reading books.”

Nature or nurture?
The Barretts were joined by Susan Schwartz, a clinical director at the Institute for Learning and Academic Achievement at the New York University Child Study Center, who agreed that Elizabeth’s extraordinary abilities have a lot to do with genetics.

“I think she has extremely well-developed visual perception and visual memory,” Schwartz said. “I think that Katy and Michael have done a great job giving her a lot of multisensory input, so she sees things, she’s talking about them, she is signing and she is using all of those skills together.”

The Barretts said that as amazing as their daughter’s skills are, they’re also a little frightening.

“The fact that she could do it was scary to us at first,” said Michael Barrett.

“Even though this is an amazing skill, it makes her different, and it’s not easy to be different. So that worries me,” added Katy Barrett.

In fact, they said, the reason they called their local NBC affiliate with their daughter’s story was because they wanted to reach out to experts who could help them deal with Elizabeth’s abilities.

On Monday, they were surprised to discover that Elizabeth had talents they weren’t aware of. While Schwartz was talking, Curry wrote a word in script on the back of a sheet of paper, then showed it to Elizabeth.

“That’s cursive,” Michael Barrett started to say.

“Ba-by,” Elizabeth interrupted.

“She reads cursive?” Curry exclaimed.

Replied Katy Barrett, “We didn’t know that.”

Being Proactive When Undergoing Medical Treatment When You Have A Cochlear Implant Friday, March 7, 2008

From the Advanced Bionics Patient Identification Card

MEDICAL: Please contact Advanced Bionics before conducting any medical procedures including, but not limited to: MRI, diathermy, electrosurgery, ECT, Ionizing Radiation Therapy, Cobalt Treatment, and Linear Acceleration.

Growing up in Arizona, and being exposed to the sun as much as I have, it is imperative for me to keep track of my skin.

I had new moles on my skin, so I went to the dermatologist on Wednesday. She removed one from my shoulder, using electrocautery. I was a bit wary when she was doing that, because I realized that was one of the things that I couldn’t do with the cochlear implant.

My second appointment was on Friday, and I asked her if she was using electrosurgery for these procedures. When she said yes, I asked her to please call Advanced Bionics just to make sure that it would be safe.

She was hesitant at first, and decided not to do the procedure, and wanted me to come back at a different date. I was on spring break, and that was my last day at home, so I asked her to please call anyway. She sent the nurse to call them, while she removed one, and used a liquid solution instead of electrocauterization to stop the bleeding. The nurse came back and told her that they wanted to talk to her.

When I found out what Advanced Bionics had to say, I was grateful that I was pushy in asking her to please call anyway.

I found out that if she had gone ahead with using electrocautery, we could have been electrocuted or gotten an electrical burn. In order to do electrosurgical procedures above the neck, we either needed to have a grounded pad on the floor or placed on me, or the wires needed to be grounded.

It was a good reminder to me to be proactive with my doctors when discussing medical procedures, post-cochlear implant.

I Miss My Residual Hearing Friday, February 8, 2008

Fall 1999. Senior in high school. My only solace was to fall asleep to music every night.

I’d climb in bed with my discman, and jam those earbuds as far in they could go. Sometimes I’d fall asleep with a finger in my ear, holding the earbud juuuust the right way for maximum sound, and using the pillow to hold the other one in place. The music would be turned up as high as it would go, the volume-limiter disabled.

My mom would cringe, afraid that I’d be damaging what residual hearing I had left even more, as she could hear the music emitting from the headphones when she entered my bedroom to tell me goodnight. But me, being the stubborn teenager I was, went on my merry way.

In those days, the music of my choice was Christina Aguilera’s self-titled CD. That was the CD that could get me bouncy in the morning, and soothe me to sleep at night. I would start with “Genie In A Bottle” and often fall asleep by the time “Love For All Seasons” came on. I expanded to other CDs, most notably bt’s “Ima”.

Here I am again tonight, 9 years later, laying in bed. The state is New York, and instead of a discman, the technology is an iPOD. Tonight’s song of choice is blink-182’s “Give Me One Good Reason” (mostly because of the words/instruments (help?) at 0:24-0:30, 0:43-0:50, 1:36-1:49, which have been rattling around inside my head for the last three days)

My left ear is the only one that’s functional, as the cochlear implant has destroyed all my residual hearing. I feel saddened by this, almost two years after my surgery, that I can’t partake in a former guilty pleasure of mine (and that the sound of my CI hasn’t been great of late, and needs some more tweaking, plus I’ve been having other issues.).

I miss hearing sound in its natural state, yet am relieved to still be able to hear it naturally with my left ear and know that it sounds the same when I put my hearing aid on. It’s very odd to lay here hearing sound in one ear, and the other waiting for the sound that will never be. And I miss it.

The Snow Day Video Friday, January 25, 2008

On cnn.com last night, there was a comment made about the Snow Day video which piqued my interest. The wife of a Fairfax, VA school superintendent leaves a voice mail for a 17-year-old boy who called their home phone number to ask why there wasn’t a snow day. She snaps, calls him back and left a voice mail in which she was screaming at him.

I was curious what the uproar was about, so I found the YouTube video, and my coworkers and I were watching it. I could tell from the tone of her voice that she was angry, but I couldn’t tell that she was screaming. Upon closer listening, I could sort of tell, but not the first time.

What do you think? Check out the video on YouTube or type in Snow Day.

Transcript: “This message is for Dave Kori. How dare you call us at home. If you’ve got a problem with going to school you do not call somebody’s house and complain about it. My husband was up at 4 o’clock this morning trying to decide the best thing to do to send you to school on a day when the weatherman is calling for one thing and another thing happened. You don’t begin to know what you’re talking about. And don’t you ever call here again. My husband has been at the office since 6:30 this morning. So don’t you even suggest that he purposely didn’t answer his phone. He is out almost every single night of the week at meetings for snotty-nosed little brats. And he may not have called you but it is not because he is home. It’s because it snowed. Get over it kid and go to school. Get an education. That’s what you’re there for.” - Candy Tistadt

My opinion about this whole situation is best summed up by Mark Fisher’s post, “In Cyberspace, Everyone Can Hear You Scream”.

The Last Two Months Thursday, January 24, 2008

I have neglected this website (along with other things), as my last entry was December 11th. This has been an incredibly busy year, with a heavy course load, and lots of hours put into work, plus my boyfriend (of 3 months). I’ve had some incredible opportunities that have been a stepping stone to future things, plus met some amazing people who have taught me some things.

I do check the e-mails now and then, and try to respond when I can.

A update on what’s been going on with me

Tammy S. (Northeast Representative) for Advanced Bionics came out to visit us on Monday afternoon. Mandy and Catherine were there with me, as a kind of additional training and observation of what Tammy was doing.

I was in the audiological booth and hooked up to the computer by noon. It was quite interesting, as we went over my case history and I discussed my concerns with her regarding the cochlear implant, the Harmony, and Advanced Bionics.

One thing that was interesting about the Harmony is that it’s designed more to make the processor think, than to have the user fiddle with all the controls as with the Freedom and other devices. I have always been one who just wants to slap my hearing aids on and go through the day with them, without having to adjust anything. I want to live life normally, without constant attention to my hearing. And that’s one thing that Advanced Bionics has done with their processors, to have the processor “think” for the user, instead of the user controlling how the processor thinks.

Anyway, we did a new NRI test to see how the electrodes were functioning, which they are. She also did some cool stuff with the programming software that I have never seen in almost two years of mapping sessions.

For this session, we changed the pulse width, and changed the M and T levels. Before all of this happened, she used the results from the NRI test to create a “listening profile” for me, which would help in the programming.

I wish I could say more, but there was so much information, and a lot of it was technical, and I don’t have the audiological background to explain it.

I also found out that the battery issue with the Harmony versus the Auria is a common one. The “wings” are missing on my batteries, except for one, which is what helps to hold the batteries in place with the processor. The Harmony also has a slightly different design specifications from the Auria, resulting in changes in the fit of the batteries.

I’m pleased with my new MAP, but it still needs some tinkering with, as I got used to it rather quickly. I’m hesitant to tinker around with it more, because I’ve been getting the migraine-headache-dizziness symptoms more frequently in the last month and a half (which Mandy thinks has to do more with stress than the cochlear implant). I’ve been having issues with the fluorescent lighting in one classroom, and watching the interpreter during class, which makes my eyes and head hurt.

Anyway, with all of that done, I have another audiologist to add to my list of audiologists who have been subjected to me being a challenging patient and picky about sound!

The AB Reps Tuesday, December 11, 2007

Finally saw Mandy today for what probably was the first time since October, when we went to Fear@Frontier, complete with all the balloon artists in tow.

Regarding the Harmony, the AB rep heard about my comments regarding the Harmony, and rather than giving Mandy suggestions to fix the programming, she wants to come out and meet me, as well as program me herself and see if that solves the problems.

This actually is great news, because I didn’t get to go to the CI reception for AB users back in November, due to my Grandpa being in the hospital, and I wanted to ask the reps there about it in person.

Anyway, it was good getting to see all of the audiologists and speech therapists again. The Holiday party is next Monday, and I am excited to see how it turns out, because I helped host it last year, but this year I have been extremely busy, and rarely am home. (Case in point: I finally unpacked four boxes tonight that go into my kitchen, that have been sitting there since the beginning of September).

Quick Roundup Of Random Bits And Pieces That Have Been Bouncing Around My Mind Saturday, December 8, 2007

Quick Roundup of Random Bits and Pieces That Have Been Bouncing Around My Mind.

1. Forgot my iPOD when I flew home for Thanksgiving. I didn’t get to try out the Harmony on the plane. However, I did have my laptop with me and listened to movies/music via my MacBook.

When flying and using my headphones, there’s a slight hum/hiss in the “background” of the sound that’s being delivered to my ears. I figure that the noise of the engine (I was sitting just behind the wing of the plane) is very strong. I don’t know anything about electrical interference, but it’s just something I’ve noticed.

2. When in the bathroom at the airport, I was able to understand “Now Boarding Southwest Airlines Flight Fourteen —” and that was it.

3. My Sidekick II finally fell apart and started spazzing out back in October. I bought a brand new replacement, the Sidekick LX. So far I love it and all the features it offers, but the one BIG negative is that the speakerphone is very weak. Even with the CI, I can barely discern what is being said through the speakerphone.

I may take it back and switch to a Blackberry. Or I may just keep it until my contract expires, and use the time to practice and improve my hearing. I wish somebody would design the perfect smartphone for CI users.

4. I’m still ambivalent about getting a second CI. There are moments where I prefer the hearing aid over the CI. I’m still not thrilled with the Harmong 120 Fidelity, and more tweaking is probably needed. But I need to make a decision very soon.

5. Being sick with a cold and a sinus infection, I prefer wearing a hearing aid over my cochlear implant. The spot where the magnet is attached to my skull aches when I am sick.

6. One thing I’ve discovered due to my unhappiness with the Harmony, is that I can still understand speech with my hearing aid. But what I want to know is how much does the CI help fill in the blank. When all/most of the sound is being delivered into the HA ear, I understand it, whereas I don’t understand or hear anything in my CI ear. The capacity for understanding seems to be based on the direction the sound is coming from.

7. I babysat for a five-year-old last night, and I wasn’t sure how that was going to go, because children’s speech has always been difficult, even with my own nieces and nephews. However, I think it went very well, and the CI helped with the understanding of speech.

8. I get frustrated when I’m working in groups (or with a few people), and somebody who’s doing the majority of the speaking turns away and starts talking to somebody else. I can hear them talking, but not what they are saying. And when I protest, they tell me that they were talking to them, not me.

The question is, is it rude to do that? I didn’t like it that he turned his back to me when we were doing training, and when I said I couldn’t see what he was saying, he said that he wasn’t talking to me.

9. Me being Typhoid (or Typhoon, depending on who you ask) Allison since the beginning of November, have gotten several people sick. Mom got sick just in time for Thanksgiving Day, and I celebrated with one of her co-workers that I had never met, plus the co-worker’s family.

It was interesting, because I was nervous about going out into the desert for a picnic, and interacting with people that I didn’t know, and still understand everything that was going on. It went just fine.

10. Black Friday was my first day back at work, and it was scary. My Bosses had enough faith in me to stick me in Electronics. It was scary watching people stampede towards electronics. It was literally a tsunami of people.

This was my 5th Black Friday, and it never changes. What was different this year was that I was able to catch more people trying to get my attention. It was overwhelming. However, due to the noise level, it was extremely difficult to hear what was being asked.

That’s all for this edition!

Jingle Bells Batman Smells Tuesday, November 27, 2007

At work on my break. Walking into the backroom, I recognize “jingle bells” playing on the radio back there.

I love being able to recognize the song with the CI, but I am sooooo sick of hearing it.

Jingle bells jingle bells jingle all the way.

Pushing the flat with the squeaky wheel this morning, and everybody staring as we go through the store, I said we might as well as change the song to “squeaky wheel squeaky wheel squeaking all the way.”