The Bionic Sound Project

this girl’s journey to sound

First Day Back At School With The CI Monday, April 6, 2009

Filed under: 120-channel processor,itching,listening,observations — Allison @ 3:39 pm

First day back at school with the cochlear implant on.  It’s very…interesting.  I’ve been switching back and forth between using Fidelity 120 and the regular programming.

Irritated with myself because my alarm clock didn’t go off this morning, so I missed seeing Laurie.  I didn’t wake up until Marvin jumped up on my bed, pushed his way into the crook of my arm, sitting on my shoulder, and stuck his wet nose in my face, while purring madly.

I have to turn up the volume on my CI when I’m listening to it with Fidelity 120, as it’s softer and more distant.  But so far, I think I like it better without Fidelity.  I listened to Steve and Sheila talking over the weekend, and tried to get an idea of what voices sound like.  At this point, everything is very mechanical, but it’s just the edges of sound that’s bugging me.

My ear is hurting and my skin is getting very itchy, but I’m trying to suffer through wearing it for as long as I can.  Can’t wait to get home and take it off…but I have a feeling that it will be coming off before then, as I have to finish my Flash animation for my class.

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Heart-Stopping Moments Friday, April 3, 2009

Had my appointment with Catherine today.  And we came up with a plan of action.

  1. Borrow the battery from them, to see if it reduces the itching/redness, and if it’s my batteries that are causing the problem.
  2. If that doesn’t work, try out a body processor.

So that’s where we started.  We went into the CI booth, plugged me into the computer, with the intention of changing my MAPs because I cannot handle the intensity of the old MAPs after a year of inactivity.

So here I am, hooked up to the computer, watching the screen, and the first thing I see is red over the internal part.  Everything was recognized and green, except for the internal implant.  Checked it again, made sure everything was connected properly.  No luck.

It was time to call Advanced Bionics for troubleshooting.  Catherine found the “dummy” internal parts, and tried it with their processor.  Everything worked.

I held my breath.  This was not looking good.

We took my processor and attached it to to the dummy.  It worked.

I started to cry.

Crying because my internal processor wasn’t working.  Crying because at the thought of having to go through a third surgery in less than 3 years.  Crying because maybe that’s why my CI wasn’t working back in January.

Catherine picked it up to take it off, and then the computer recognized the internal part!  It was a loose wire.

Talk about a heart-stopping moment.  A huge sigh of relief.

So now I’m sent home with MAPs that are more than 100 points below where I was, and with my IDR reduced to 60 from 75.  One has Fidelity 120,and the other doesn’t.  I’m going to try both, as Mandy said in her last notes that I may do better without Fidelity 120.

30 minutes into wearing the CI, my ear was red and itching, and Catherine confirmed it by seeing that there was a red spot where the CI was.  So now it’s time to find a solution.

It’s amazing how quick the brain adapts to using a CI after not wearing it for so long.  I’m missing it…..and feel like I’m re-experiencing activation day all over again…in the sense that I’m discovering sounds that my hearing aid definitely did not pick up on.

 

I’m Back Thursday, April 2, 2009

Filed under: Uncategorized — Allison @ 5:55 pm

Back…and going to be wearing my CI for the first time since….last spring, really.

Correction, I’ve made a few attempts to wear it over the summer, and most recently,  in January, when I had a dinner date.  I wanted to be able to have a conversation in a loud restaurant, with a person who was hearing and did not know sign language.

It was a disaster.  The sound kept cutting in and out.  I kept adjusting it.  Finally, I sat with my hand over the magnet, elbow on the table, wondering if it was my hair that was causing it to possibly slip off, or if it wasn’t strong enough.

Finally I just ripped the processor off my head in frustration, and said “to heck with it.”  First, having surgery twice.  Then the rashes/redness, the itching, not being able to see Mandy, and now the processor wasn’t working properly.  What else was going to go wrong?  Maybe I was just not meant to have a cochlear implant.

In short, I gave up.  Nobody seemed to care, so I stopped caring.  Course, other things were going on in my life at the same time which didn’t help the situation.  Lack of support from the people I needed and craved it the most was one.

After several trips home visiting family, and fights with my mom over my lack of using the CI,her disappointment with me for not wearing it, and the fact that I hear much better with the CI, than with just the hearing aid alone.

Graduation looms in 7 weeks.  So time is running out.  So I took action.

I made an appointment today, and was able to get in and see Catherine tomorrow.  I’m not able to see Mandy, as she’s had no room for me for the last year.  I’ll be working with Laurie next, starting on Monday, to ease myself back into this whole CI thing.

Let’s see how it goes.

edit: the correction is that my mom was upset with me because she felt like I was not wearing my CI because I didn’t want to, not because of the issues I was having. If I had made an effort to resolve the problem, with no luck, and then finally made the decision that it was not worth pursuing anymore, then that would be a different story.

 

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

Filed under: Uncategorized — Allison @ 8:50 am

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

Filed under: Uncategorized — Allison @ 4:26 pm

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

Filed under: Uncategorized — Allison @ 12:04 pm

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

Filed under: Uncategorized — Allison @ 9:59 am

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.