CI Parent

College Life - 1/17/2011

2011-01-18T10:10:00.004-05:00

It has been so many months since I last posted here to talk about Nichole's hearing journey. I was so caught up n the end of her Senior year in high school, the college application processes, getting ready for her Freshman year at Worcester Polytechnic Institute (WPI) that I dropped the ball on this Blog. But as I think of it, that is exactly what I hoped would happen back when Nichole was newly diagnosed with a hearing impairment. Nichole grew into a young woman going off to college. Not specifically a hearing impaired girl, but an 18 year old who like all her peers was transitioning form child hood to adult hood. Facing all the same challenges, and succeeding!

Nichole was accepted to WPI early decision to pursue Computer Science. It is very tough (her mother and I both graduated from WPI). She is working until the wee hours (2 or 3am) many nights, and loving it! She is absolutely thriving in the college environment. WPI has ben great as far as accomodations. They purchased a new FM system for Nichole. She has taken the initiative to schedule a meeting with each professor before classes start each term. She explains about her hearing, shows them how to use the FM and discusses how she can get the most from their classes. She had been asking questions in class (I can hear her in one of the recorded lectures), and going back for office hours extra help. It is so rewarding to see that she is advocating for herself. And to top that off, her first term (WPI has four 7-week terms versus two semesters, and students take three classes per term) Nichole earned two A's and a C (in her intro to programming class). She was concerned with the C, but I had looked at the language they use, and it is a really strange one that has no real-world application. I suggested she put that behind her and keep going with CS classes to see if she does better as the courses progress. Sure enough, she earned an A in the next CS class during B term, along with two more As! All her hard work is paying off.

WPI also installed a remote Fire Alarm sensor with bed shaker that detects when the alarms sound in her dorm and shakes her bed. This has been one thing which has not gone smoothly. It kept false alarming, to the point where she was simply ignoring it. At my urging, she worked with the residence life people to get the unit and the remote transmitter changes for new units. That appeared to solve the problem, though as you will read below, it has since issued a false alarm again.

After Christmas break, Nichole wanted to go back a few days before classes started in order to do some pre-reading for her classes. Classes started last Thursday (1/13/11). Saturday morning, about 3:00am, our phone rang. It was Nichole. She had gone out with friends to watch a movie on campus. When they returned (about 1:00am) and Nichole put her jacket in her dorm room, on the floor by her bed. All was normal. The group hung out in the common room on her floor to chat (such a great thing for a Dad to hear about a girl with her hearing background!). About 2:30am, someone came to the common room to say water was coming out from under Nichole's dorm room door.

She and her friends opened her door, to get a blast of hot steam in their faces! IT took a minute for the steam to clear, before they could see the room was flooded with 2" of super hot water. The radiator had leaked. Steam had filled the room, with condensation forming on the walls, ceiling and everything in the room. If she had been sleeping, she probably would have been scalded (her roommate had gone home for the weekend). Even if she had woken up, she would have stepped into the super heated water getting out of bed. It gives me shivers to think how lucky she was to have been hanging out with her friends.

She and her friends rescued what they could from the room. Facilities game around early in the morning to vacuum up the water, and eventually replaced the radiator. They shampooed the rugs as well. Nichole came home for the day to get some sleep (after this unscheduled all-nighter), and wash all her bedding and other items (like her jacket) that had been on the floor and were soaked. Luckily the only items that were destroyed was a 19" TV we had sent to school with her, and a bedside reading lamp. Her CI gear appears to be ok, though the battery chargers for her rechargeables did have lots of pooled water from condensation in them, and one of the batteries was super hot. We will keep an eye on that one, as WPI has offered to replace anything that got damaged by the flood. Oh, and the fire alarm bead shaker went off.

So now I am thinking that a fire alarm bed shaker is not the only thing she needs. A high-temp warning feature, and maybe even a Carbon Monoxide and smoke add ons to the alarm system would be a good idea. Maybe even a doorbell flasher type device so that if she were in the room and someone needed to rouse her, they could hit the button and it would shake her bed. But of course that would present an annoyance factor as anyone walking down the hall at night could simply hit the button (the old ring and run game) just to be a pain. Does anyone else have these type of "features" for their kids who are in mainstream colleges?

That is all for now.

Nichole's Presentation to Teachers About Her Hearing Loss - 6/17/2009

2009-06-26T08:48:00.003-04:00

Each year since Nichole was in pre-school, I have given a presentation to her teachers describing her hearing loss and her need for them to use the FM transmitter. This includes a demonstration of them listening through her hearing aid as I move around a classroom, with and without the FM activated. When Nichole hit high school, the administrators requested that I come in at the end of the school year to "pre-brief" her teachers for the following year. I have it down to a well orchestrated PowerPoint presentation which walks the teachers through a hearing overview, where Nichole's hearing resides with respect to environmental sounds, and the importance of the FM.

Two weeks before this year's meeting, I told Nichole that she would have to give the presentation. She is going to be a high school senior this fall, so this is her chance to get comfortable with talking to her teachers as a self advocate. For those who don't know her, Nichole is quite shy in these type of situations. The night before the meeting, she gave us a dry run. It was horrendous! She was mumbling, avoiding eye contact, leaving out any background information. We were considering not having her give the talk out of fear she would prejudice her teachers against her! But we forced ourselves to "let go" of the reins (tough thing to do as involved parents).

Nichole, my wife and I got to the meeting room a bit early and got the laptop set up with the school projector. As the "new" teachers arrived, Nichole gave them each a hard copy of the presentation. Once they were all seated, she started her presentation. Oh My God. She was awesome!!! She spoke with volume, authority and confidence. She made eye contact with all the teachers. She introduced herself, explained why she was talking to them, then walked them through the presentation flawlessly. She answered questions from her teachers in a comfortable manner throughout the talk. We were so proud of her. This was the Nichole we only dreamed she might become when we put that shy little girl on the bus to first grade 11 year ago. I wish I had hidden a video camera in the room in order to capture her presentation!

When Nichole finished her talk, she asked for any additional questions. Her chemistry teacher for next year said that he had an observation. He said that he was quite impressed that she was brave enough to stand before a group of new (to her) teachers and give such a good presentation. He said that it was obvious that she was comfortable talking with new people (yahoo!), and that he was impressed with her; that she seemed to be a fine young lady and he looked forward to having her in his class.

While I know I will miss her in a year and a half when Nichole goes away to college, the fact that she rose to the occasion and advocated for herself so eloquently helps allay one of our concerns for her secondary education. Go Nichole!!!

Hearing in the noisy Emergency Room - June 15, 2009

2009-06-15T12:03:00.002-04:00

Since I haven't posted in a while, I will give you a very recent Nichole story . This past Friday, Nichole got the pinky of her right hand crushed in a car door. I took her to the ER, where they took x-rays and closed the cut that also came with the slightly broken finger.

Nichole was in the exam room, and I was walking back up the hall with the Dr., having just looked at her films. He stopped me and asked how Nichole managed pain (we were about 25 feet down the *noisy* hall, and Nichole was 10 feet into the exam room, a 90 degree turn from the hall - all in all, about 35 feet from me). I explained that she has gone through two CI implantation surgeries, and handles it quite well (she is very stoic), and that she didn't like pain meds.

When I got back in the room, Nichole asked me why I had been telling the Dr. about her two surgeries! I was shocked that she had heard most of our conversation. I walked her to the door, and pointed to the spot down the hall where the chat had taken place. A grin came over her face. This is certainly one conversation she wouldn't have heard two years ago before her first CI.

Nichole's observation 3 Months Post Bilateral Activation - November 19, 2008

2008-11-19T17:37:00.002-05:00

We were in the kitchen the other night getting dinner ready, when Nichole said

"I came home from school today and decided to watch TV before starting my homework. After about 5 minutes, I realized that the closed captions were not on. I hadn't even noticed!"

This from the girl who ALWAYS uses closed captions and gets annoyed if they are not present. In the past, she wouldn't even go to movies because they don't have captions. I guess that means that after three months with bilateral CIs, she is hearing better than before going bilateral. At least she is hearing well enough to understand television without the captions. Of course, once she realized they were off, she turned them on. Old habits are hard to break.

Bilateral CI helps Nichole with localization of sounds - 9/8/2008

2008-09-08T15:59:00.005-04:00

When Nichole just had one CI and one hearing aid, she didn't do that well locating the source of sounds. And if she turned off either the CI or the hearing aid, she of course did even worse. We were curious if having two CIs had any impact on her sound localization ability.

This past weekend, the whole family played a game with Nichole - "Find the portable phone". Our portable phone has a button on the base station that causes the handset to start beeping, allowing you to find where it was last put down.

We had Nichole stay in the kitchen, then one of us would go either in the basement, or upstairs, and hide the phone. We then started the phone beeping and Nichole had to use her bilateral CIs to locate the handset.

We were amazed at how well she did. In all but one or two cases, she would zero in on the hiding place fairly quickly. Even when we hit the phone in cabinets and containers. She would walk into a room, turn her head left and right, then head off in the direction of the sound. Once, when I had hidden the phone in the ceiling of our basement (can't make things too easy for her :-), Nichole navigated herself to a spot directly below the phone, and was going crazy because she couldn't find the phone on the floor, or on the nearby shelf. Then, she looked up and noticed the open ceiling tile, and the phone. From then on , when she couldn't find the phone, but knew she was in the right area, she would tip her head to the side (one ear up, one ear down), in order to determine if the sound was above or below her.

So besides the improvement in basic hearing, understanding speech and having a "backup" ear in the event one stopped working (or the FM in her case) , we can add sound localization as another benefit of going bilateral! And that is only about 3 and a half weeks post activation!

First day in 11th grade for Nichole with Bilateral CIs

2008-08-27T21:52:00.002-04:00

Today was Nichole's first day in 11th grade after having gone bilateral this summer. I asked her during dinner how school went. She said it was pretty good, but ... her right (older) CI wasn't working for the first two classes. Arggg.

She has Freedom FM receivers for both ears. During the first two classes, her older right ear was not picking up the FM signal, nor was it picking up sounds of the other students using the processor mic. But her newer left ear was working. She said she could hear the teacher clearly through the FM on the new side, and best of all, she understood almost all of what the teacher was saying (though she did say she supplemented with reading their lips). Not bad for just two weeks post-activation! But the point is, if she hadn't had the new implant, she would not have gotten much out of those two classes.

Between her second and third class, she removed the FM receiver from the old ear, and re-installed it. This brought it on-line. She guessed that the FM insert was not properly seated, thus not working. Whew!

So for the rest of the day, she had a clean FM signal to both ears. However, she said she still couldn't hear other students around her in her right ear. It wasn't until she got off the bus after school that it occurred to her that the night before, she had been playing around with the FM-only program her audiologist had put in P4, so she could listen to music from an MP3 player. That setting cuts the mic input to 1/9th the FM or direct audio input. No wonder she couldn't hear her class mates on that side. She will remember to user her regular P1 program from now on.

So all in all, going bilateral was a good thing, since it gave Nichole a "backup" hearing capability over last year. And her brain is re-wiring nicely to utilize the new implant.

First full day with new CI - 8/13/2008

2008-08-13T23:44:00.001-04:00

Well, today was the first full day with Nichole's new left implant activated. I was at work most of the day, but saw her at lunch time, and she had not really tried much "listening" yet. We took a family walk after I got home from work, and I told her that it seemed she was much less interested in exploring sounds with this implant than she had been with her first one last year. She agreed. She said that with her old (right) CI, she now knows all the new sounds so it isn't as exciting trying to hear them with the new (left) CI.

She said that in the late afternoon, she did try the different programs which Marilyn had saved in the Freedom processor. Program 1 (P1) is basically what felt comfortable at the end of her activation on Tuesday. P2 and P3 are increasingly louder versions of P1. Marilyn thought that those three would give Nichole enough to work with until her next mapping, which is 9 days after her initial activation. She wasn't even sure Nichole would get to P3, but gave it anyway. Well, Nichole is already comfortable with P2, at volume = 9 (full volume)! She has tried P3, but it is a bit too loud. I reminded her that this isn't a race, and that she shouldn't feel the need to push herself too fast.

As for speech recognition, it didn't seem she was understanding much, if anything, by just observing her during normal conversations. So tonight, at about 11:15pm, after everyone else was asleep, I asked her if she wanted to play the "closed set" game. We pick a category (numbers 1 thru 10, or colors, etc), she faces away from me, and tries to repeat each word I say. I was not too optimistic given it was only day 1, and that I hadn't observed her understanding much earlier in the day. Boy was I in for a wonderful surprise!

I started with the numbers 1 thru 10 in random order. Nichole correctly repeated 8 of the 10 on the first try. For the two she got incorrect, I repeated the number once, and she then got it correct. Yahoo! I moved on to colors. Out of 11, she got eight correct first try, two correct on my first repeat, and one (indigo) she couldn't get. Next was animals. She correctly repeated nine out of 14. She got seven out of 11 sea creatures and five out of six oceans/seas (south china sea, she missed the "china").

So her "first try" success rate was about 80% for most lists, with 65% for the two really hard ones of animals and sea creatures. I have shown her raw results below, so you can get a feel for the difficulty of the words I picked, and so I can keep a record somewhere.

We have her first Listening Therapy session tomorrow afternoon.

Raw Closed-Set Listening Results, I have bolded those items where a mistake was made. Where two percentages are shown, they represent raw score on first try, then with a word repeated if it was wrong the first try. If she had no guess, I put a ????.

Numbers (80%, 100%)

I said	She repeated
5	7, then 5
3	3
4	4
10	10
1	1
7	6, then 7
9	9
6	6
8	8
2	2

Colors (72%, 91%)

I said	She repeated
Blue	Blue
Yellow	Yellow
Red	Red
Black	White, then black
White	White
Pink	Pink
Orange	White, then orange
Green	Green
Brown	Brown
Indigo	????
Violet	Violet

Animals (65%)

I said	She repeated
Cat	Cat
Squirrel	Squirrel
Bird	Bird
Dog	Bird
Snake	Snake
Fox	Smocks
Beaver	????
Robin	Robin
Chickadee	Chickadee
Hawk	????
Bat	Bat
Blue Bird	Little Bird
Great Blue Heron	Great Blue Heron
Owl	Owl

Sea Creatures (63%)

I said	She repeated
Whale	Whale
Dolphin	Dera fin
Tuna	????
Oyster	Oyster
Clam	Clam
Sea Horse	Sea Horse
Skate	Snake
Jelly Fish	Jelly Fish
Shark	Shark
Walrus	Walrus
Seal	Snail

Oceans/Seas (83%)

I said	She repeated
Pacific	Pacific
Atlantic	Atlantic
Arctic	Arctic
Indian	Indian
Red Sea	Red Sea
South China Sea	South ???? Sea

Shapes (88%)

I said	She repeated
Circle	Circle
Oval	Oval
Square	Square
Rectangle	Rectangle
Star	Star
Ellipse	Erect
Octagon	Octagon
Pentagon	Pentagon
Triangle	Triangle

Left CI Activated - 8/12/2008

2008-08-12T14:09:00.002-04:00

Early today Nichole had her new left side CI activated. Her audiologist, Marilyn, got her all hooked up to the programmer, and started out setting the T-levels (threshold levels). This is the minimum stimulation which Nichole can detect. Nichole then used the keyboard and software to set the C-levels (comfort levels) herself. This sets the stimulation level where she can hear, and it is comfortable, versus being too loud.

Once all the T and C levels were set, Marilyn turned on the microphone (after reducing the overall volume a bit to avoid Nichole being overwhelmed with sound). Nichole said that it hurt, kind of like an electric shock. Using a little electronic keyboard, Nichole played the notes, and told Marilyn exactly which notes caused discomfort, and which felt ok. Based on this information, Marilyn modified the T and C levels to a point where Nichole could hear sounds, while at the same time feel no pain. In fact, the contour of the new levels (viewed on a graph on the software) closely follow the "telemetry" readings that Marilyn took while Nichole was still on the OR table. I am not 100% sure what these are, but Marilyn said they can predict what her C-levels will probably look like after she gets acclimated to the implant. Nichole was happy with how the new levels felt.

An interesting observation was how Nichole described what she heard when she played a scale on the small electronic keyboard (left to right which would be low to high pitched notes). She said the first 6 or so keys went from high to low pitch (opposite what I hear), then the next bunch of keys went low to high (correct), then the last two were low again. I seem to recall her making the same observation at an earlier mapping session with her right CI. Not quite sure what it means though.

I asked Nichole how it sounded when we spoke (with her other CI turned off). She said that if she looks at our lips, she can make out some of the words we are saying. Wow! That is much better than when her right side was first activated a year ago. At that time, she could hear us talk, but had no idea what we were saying (we sounded like a waterfall or birds chirping). Maybe the fact that that this ear was her better ear helps. Or maybe the fact her brain has had a year with the right side CI will help it decode the new left CI. It could also be that Marilyn is using a slower stimulation rate (720Hz) which is what Nichole eventually settled on with the right side (so we wouldn't sound so "chirpy"). Most likely, it is a combination of all of the above. In any case, all the electrodes are working, and I am confident her brain will re-wire to accommodate the sounds from the new implant. I just hope it happens as quickly as it did last year (see my Day 1 Update post from last year to see how quickly she started understanding speech). She starts junior year of high school in two weeks!

Participating in CI/HA research at MIT and Northeastern

2008-07-03T11:28:00.000-04:00

Nichole has been participating in two different research programs. The first is at MIT. They are testing Nichole's hearing ability with her Cochlear Implant. There are a number of different tests they are running. Some deal with her ability to identify vowels, some consonants, others the pitch of musical notes. The main researcher, Ray Goldworthy, who has a single CI himself, is eventually hoping to modify maps to allow CI users to hear better in vaious situations. he even spent some time in Australia at Cochelar learning more about their processors.

The second study is taking place at Northeastern University. Dr. Ying-Yee Kong is the principal investigator on this study, which is looking at people with one CI and one Hearing Aid (HA). They are running similar tests as those done at MIT, but with some variations, including testing in noise. They are interested in testing Nichole, because they want to see how she performs using one CI and one HA, then retest her after her second CI is fully "integrated". The results of this testing will possibly help other single CI users decide if going bilateral is better or if keeping one HA and one CI is best.

Nichole has enjoyed participating in both studies. She likes the idea that all this testing (and it is quite tiring - I know because I enrolled in it as a normal hearing study subject to help out), will eventually help other people struggling with the decision of going bilateral, or staying with a single CI. In addition, she is earning money, which for a 16 year old approaching her coveted driver's license, is a big deal :-), especially at $4 for a gallon of gas.

In addition to the main thrust of the NU study, Dr. Kong recorded Nichole speaking in order to determine if her speech generation improves, declines or stays the same after going bilateral. Here is a 3.5 minute long MP3 sound recording of Nichole telling a story. They gave her just the starting point, and told her to make up a story on the fly (thus some "ums" as she pauses to figure out where to take the story next).

I thought some parents of smaller kids would be interested in hearing how Nichole speaks. Keep in mind that she was not diagnosed with a hearing loss (70dB flat - moderate-severe bilateral sensori-neural hearing impairment) until 18 months old, and only spoke a handful of words to that point. She started wearing hearing aids at 20 months. We did Auditory Verbal therapy until she was 3 years old (though of course we continued doing it at home). Her hearing stayed at that level until her teenage years, when it started getting worse. She was at about a 100dB loss when she/we decided to get her first implant (right side) at age 15 (last year). This recording was made on July 2, 2008, just before her surgery to implant her left ear.

Of course, I understand Nichole perfectly, but I would really like to hear from other parents to see what they think of her speech. Does she sound "normal" to you, or can you tell she has a hearing problem? I am too close to tell. Any comments?

Hearing at a Carnival - 5/17/2008

2008-05-17T09:38:00.000-04:00

Last night Nichole went with her friends to the travelling carnival that comes to town each year. It comprises a bunch of loud rides, arcade booths, food vendors, etc. I walked through it with my other daughter just to see what they had. It was *very* loud there. Hard for us to communicate, and we have good hearing.

I asked Nichole if she enjoyed spending the evening there with her friends. She had. Then I asked the inevitable question - could you understand any of the conversations the group had? Nichole said that last year when they went, she only caught a couple of words during the evening. But last night, she understood almost all of the conversations! The only time she had trouble was when one friend whispered into her left (hearing aid) ear. She couldn't make out what she was saying. But when she turned her head, to use her CI, she did get what was being said.

Can't wait for the second implant. Hope it will make hearing in these noisy situations that much better!

Vestibular Testing at Mass Eye & Ear - April 25, 2008

2008-04-25T22:25:00.000-04:00

Today Nichole underwent vestibular (balance) testing at Mass Eye & Ear. Because of the size of the testing room, they didn't allow me to come in (which for an engineer, is a bummer!). I will get a description of what they did from Nichole later and back-annotate this post.

Bus Stop Listening - Woodpecker getting breakfast (4/18/2008)

2008-04-18T09:39:00.005-04:00

I walked Nichole to the bus stop this morning. As we were going down the driveway, she stopped and looked around, scanning the tree tops. She said "I hear a woodpecker". I too heard it. It was near the top of a 70 foot tall tree, who's trunk was about 70 yards away (about 75 yards from the bird to her ear). While she could not locate where the woodpecker was "ratatat-tatting", she could clearly hear it (along with other birds chirping). Maybe after her July surgery to go bilateral, she will even be able to locate the sound source too!

Speech Perception Testing 9-month post-activation (4/11/2008)

2008-04-11T08:30:00.002-04:00

I received the Speech & Language assessment report from Children's regarding Nichole's referral for a second (bilateral) implant. The clinician had interviewed Nichole, asking her lots of questions, and had her do a list of Word Association for Syllable Perception (WASP) words that she had been tested on last year, prior to receiving her first implant. On the original pre-implant testing, Nichole scored a 33% accuracy with auditory-only information. On the retest with her CI (now 9 month post-activation), she scored 96% accuracy!!! Now if *that* doesn't show people the benefit of a CI, I don't know what does!

Approved for Bilateral CI !!! - April 3, 2008

2008-04-03T22:03:00.000-04:00

We met with the Speech and Language Pathologist and Nichole's surgeon at Children's today. These were the final two appointments we needed to "pass" in order for Nichole to be approved for her second implant. The language testing went fast - Nichole has a very advanced vocabulary.

The meeting with Nichole's surgeon went very well. Dr. L. stepped through all the pros and cons of a 2nd implant. She told him how the CI on her right side was *so* much better than the hearing aid on her left side, and that she had tested both in different situations, and really wanted to have her left side implanted. He said he fully agreed, then said, "lets go get you a date"!! I had been expecting that their team would have to meet to discuss her case, as happened with the first one last year. Nope. He walked us to Sarah, the implant team coordinator, and asked her to schedule us for surgery. She immediately asked if July 11th would work for us! Yahoo. She knew we were looking for a slot right at the beginning of summer, and had lined things up for us. She is fantastic!. Nichole was very happy on the drive home! So now we wait.

Hearing a Distant Sound While Cross Country Skiing - 2/24/2008

2008-02-24T20:40:00.000-05:00

The family all went cross country skiing today. We were stopped for a few minutes, enjoying the peace and quiet while the kids were taking turns skiing down a little hill, taking a jump at the bottom. I was waiting to take a picture of the next run down the hill, and Nichole was standing at the top of the hill, about 40 feet from me, just resting after her last trip up, when I heard a snowmobile start zipping across the neighboring lake. It was about 3/4 of a mile away, through a line of trees. About a second after I first heard it, I noticed Nichole turn her head left and right, trying to see what she was hearing. She quickly spotted the snowmobile moving across the open lake, and returned her attention to the skiing. It was cool to see her being tuned in to the sounds of her environment!

Hearing with a CI on a Noisy Chair Lift While Skiing - 2/20/2008

2008-02-20T21:05:00.000-05:00

We were skiing at Sugarbush today (February Vacation week). I was riding up the chair lift with Nichole and her sister, Corey. I was sitting between the two of them, turned so that I could face Corey while I told her about a conversation I had with another skier on an earlier lift ride (when I was just with my son Mitchell). The snow guns were running (for non-skiers, they sound like jet engines, though a little "deeper" in tone). The wind was blowing at about 30MPH (yes, it was *very cold). These are about the worst conditions for listening. When I finished relating the story to Corey, Nichole asked me "what was that?". I turned around to face her, and stared to retell the story from the beginning. She interrupted me, and said "I heard all of that. I just wanted to know the very last thing you said". I was amazed. With my back to her, over all that noise, with her wearing a helmet, and my voice muffled by a neck warmer pulled up to my nose, she had heard and understood a one or two minute story, only missing the very last sentence! She certainly never would have heard *any* of that with just her hearing aids. From past ski trip experiences, Nichole usually would just space out and turn "inward" on the lift rides, never even trying to participate in conversations, since she couldn't hear anyone, and with face masks on, couldn't read any lips.

Nichole's "Bilateral" E-mail to her Audiologist

2008-02-05T20:12:00.002-05:00

At dinner tonight, I told Nichole that I had exchanged e-mails with her audiologist, Marilyn, regarding Nichole getting her other ear implanted. One thing Marilyn noted was that with two implants, she would not hear *anything* when her processors were removed. Nichole then sent the following e-mail to Marilyn, copying me. For those with very young kids, who can't really give you feedback, this is what you can look forward to as they get older.

Hi Marilyn,

My dad asked me if I was willing to give up my remaining hearing in my left ear for a second implant. Definitely!! I would give my residual hearing in an instant because as my little investigations have shown, a CI is about 100% better than a hearing aid. The only hearing (without the hearing aid in) I would be giving up is:

-hearing the water hit my ear in the shower

-myself humming with my hands over my ears

-an MP3 player on Volume 30 (maximum volume setting-I can barely hear it)

So I wouldn't be losing anything really except the title of having a hearing loss.

Thank you for the tip on how to turn off the FM microphone but keep the CI one on. It has made school life a lot more tolerable than before : D

Thanks,

Nichole

Second (bilateral) Implant Insurance Approval - 1/30/2008

2008-01-30T12:29:00.000-05:00

I just got off the phone with Blue Cross of Mass. They pulled up Nichole's records, and confirmed that an implant for her left ear would be covered 100%. Look out bilateral hearing, here she comes!

Audiologist agrees with Nichole going Bilateral - 1/29/2008

2008-01-29T22:02:00.001-05:00

I received an e-mail reply from Nichole's audiologist at Children's Hospital Boston (Marilyn) regarding Nichole wanting to get her left ear implanted this summer (1 year after her right was done).

I see no reason why Nichole can't get a 2nd CI and in fact it's a great idea.  She just has to be prepared how
quiet things will be with her ear gear off (she may hear a few loud sounds now.)

I had to go to Nichole's High School at lunch time to check her FM transmitter (it was having some issues). After dealing with that, I told her what Marilyn said in the e-mail. Nichole's face lit right up! You would have thought I told her she won the lottery. Now I just have to check with Blue Cross of Mass to ensure it will be covered.

Decision on second (bilateral) implant - 1/28/2008

2008-01-28T11:21:00.000-05:00

Unbeknownst to me, Nichole has been doing a lot of thinking about getting her second ear implanted.
She loves her CI, but at first, she thought she would wait until the summer of 2009 to get the left done.
That would have been a two year delay following the first implantation.

On her own, she has been doing experiments in different settings over the past few months, enabling only her
hearing aid (left) or CI (right) to compare the benefits/drawbacks of each. Her basic comment is that with
just her hearing aid, she can't really understand many of the words her teachers are saying (even with the FM).
If watching TV, she only gets about 1 word every few minutes. With her implant only, she understands almost
all of what the teachers are saying, and is able to understand TV shows quite abit (though she still uses the
captioning). The *only* thing about her hearing aid that she lists as a Pro, is that if her teacher is wearing the
FM transmitter, and has left it on while conferring with another student, thus disturbing Nichole, she can flick
a switch on her Hearing Aid's microlink to kill the FM input. Conversely, the only Con in the CI column (and yes,
she made a Pro/Con table :-) ), is that there is no way to shut off the FM input on the Freedom receiver. This
would be a good piece of feedback for either the Phonak rep, or the Cochlear rep - allow the wearer to easily
shut off the FM input while still using the processor's mike. I passed this to Nichole's audiologist, who told me
what sequence of buttons to push to disable the FM input. While not as easy as flicking a single switch, like
with her hearing aid boot, it should be a usable option.

Driving home from one of Nichole's last driver's ed class (yes, she is eligible to get her learner's permit in just
another week!) , Nichole informed me that she wants to have her left side implanted right after she gets out of
school at the end of this year (June 2008), similar to what she did just six months ago. Time to start talking
with the team at Children's Boston to start the process!

Ski Racing with a CI - 1/15/2008

2008-01-15T11:15:00.000-05:00

This is Nichole's second year racing for her High School Alpine ski team, thought the first with her CI. I asked Nichole how the CI worked, what with wearing a ski helmet and all. She said it was *much* better than her hearing aids. She can hear a lot more, especially because she doesn't get any feedback with the CI. Last year, she would turn the volume down on her two hearing aids, to keep them from whistling. Now, since she can hear so much with the CI, she simply is turning off her hearing aid and relying completely on the CI!

Hearing the Television - 11/9/2007

2007-11-09T12:13:00.000-05:00

I was talking with Nichole in the car last night (which in and of itself is a miracle, since conversations in a car were very difficult before her CI). I asked how school went. She indicated they had a substitute for Chemistry. They watched a movie and then had to take a quiz about the contents. I asked if she had the substitute put the FM beside the TV. "Well, no, because the TV is mounted hi up on the wall" (since it is a lab setting). Ok, well was the movie captioned? "No. There were no captions".

Nichole sits about 15 feet from the TV (I now know). Before her CI, she would not have been able to hear any of the movie. So I could feel my protective dad "turbine" starting to spin up at the thought of her being quizzed on a movie under such conditions, when Nichole's face brightened and she said "I understood most of what they were saying in the movie, and I think I did pretty well on the quiz"!

Having her be able to hear electronically produced speech has been one of the goals that I wasn't sure would be achieved (see my earlier post The straw that broke the camel's back). Her experience with her CI just keeps getting better !

Trick or Treat - 11/1/2007

2007-11-01T09:46:00.000-04:00

Last night was Halloween. While Nichole was not going to go out trick-or-treating with the family, her Sister was able to convince her to join us. Nichole dressed up as a skier (she is on her high school ski team). We went through the neighborhood. At one house, the wife greeted the pack of kids at the door, while the husband was inside, about 15 feet from the front door, up a set of stairs. He called out Nichole's name, asking how "it" (the CI) was going. Amidst the noise of kids saying "thank you" for the the candy, and bags rustling, she heard him, looked up at him, and said "good" (which for my 10th grader, is verbose :-). He commented that it "must be going well" for her to be able to respond to him like that.

When hearing your kids argue is great ! - 10/29/2007

2007-10-29T11:03:00.000-04:00

As most parents will agree, hearing your kids argue with each other can be quite exasperating. Last night, Nichole was up in her room doing homework. Her sister Corey was on the same floor, at the opposite corner of the house in her room, also doing homework. They were about 40 feet away, with a bit of a dog-leg left "jog" caused by the hallway and location of their desks (not direct line of site). I was in the kitchen straightening up after dinner, when I heard Nichole bellow at Corey to "stop that whistling, I am trying to do homework". Ok, whistling is high frequency, which Nichole never used to hear, let alone from 40 feet away. Hearing her frustration at the distraction, and her vociferous displeasure with her sister's whistling talents was pure music to my ears!

Listening Therapy - 10/24/2007

2007-10-25T09:37:00.000-04:00

I know it has been a long time since my last post. Sorry about that. We have scaled back Nichole's listening therapy to every three weeks. Yesterday, I took Nichole for her session. Dorothy (her therapist) did the normal Ling sound checks (still cool that Nichole can hear the "s" ans "sh" sounds with her CI, where as she can't with her Hearing Aid). One of the major exercises she did with Nichole was to read her one of Aesop's Fables (without visual queues) and Nichole had to repeat back each sentence verbatim. Nichole scored a 96% with just her CI !!!

Dorothy asked if we had been doing any exercises at home. I had to confess that we have not. The fact that Nichole has been doing so well (96% with her CI versus pre-implantation word recognition of 32%), has, for better or worse, made us relax a lot. I think the only area in which we really need to do more work is having Nichole listen to electronically produced speech. Time to put that on the "front burner" I guess.

Using FM patched into Computer audio port - 9/10/2007

2007-09-11T09:01:00.000-04:00

Nichole is taking Spanish again in 10th grade (and has taken Spanish since 7th grade). The High School has a language lab that uses computers with headphones/mics and an application to allow the students to speak to the program and get graded. I have arranged to get into the lab this afternoon to figure out how Nichole can best utilize the system.

To that end, last night I used a patch cord to connect her Zoomlink hand held FM transmitter (which beams the input to her FM receivers on her CI Processor and Hearing Aid via the teacher's SX Campus FM Transmitter) to her computer headphone jack. Nichole said she could hear the music, but it turned out she was hearing the speakers on her desk (which I then muted). The FM portion was not working. Then I figured out that Windows XP or one of the applications on her PC had detected the new "device" plugged into the headphone jack and was asking me (via a pop up menu) what it was, and if I wanted to enable it. I had to click "ok" before it actually turned on the port (a bit of overkill if you ask me). Anyway, once I responded, Nichole was able to hear the music being pumped over the FM. She was walking around the whole upstairs listening to music that the rest of us could not hear. Way cool!

First Day of 10th Grade with new CI - 8/29/2007

2007-08-29T22:13:00.000-04:00

Today was the first day back to school (10th Grade) for Nichole since getting her implant this summer. She is exactly 5 weeks post-activation. We got the FM system all set just two days earlier (Freedom FM for her processor and Microlink for her hearing aid - nothing like bilateral FM technology!). Before bed, I asked Nichole to compare/contrast her first school day with her CI versus pre-CI school. She said she could hear everything much "louder". I asked if it was 10% louder, 50%, 100%, etc. Nichole thought about it and said that it is about 75% louder than just her hearing aids alone (and she had the same FM technology back then). She then went on to say that when she is home, she understands all the words that everyone says, but that is not yet the case at school. Nichole felt that once she gets used to the way her new teachers talk, things will be *much* better having the CI.

5-Week Mapping - 8/27/2007

2007-08-27T21:54:00.000-04:00

We saw Marilyn for Nichole's 5 week post-activation mapping session. School starts in 2 days, so we wanted to do the fine tuning now. Nichole's Listening Therapist, Dorothy, had sent Marilyn an e-mail summary of Nichole's progress so far, indicating a need for a "tweek" in the map to help her discriminated between d and g. Marilyn set the T (threshold) levels, then had Nichole sit at the computer and run the application to sett all the C (comfort) levels. Nichole likes doing this, because it empowers her (she is a whiz at computers), and lets her fine tune things. After following a discussion thread on CiCircle about FMs, we discussed with Marilyn the setting she would program into the processor for FM-vs-Mic levels. She recommends a 1:1 ratio. So that is what we have programmed into the first three memories. The fourth one has a 2:1 ratio (suppresses the Mic input) in case Nichole is in a class (maybe Chemistry lab) where it is very noisy near her, and she wants to have the teacher's voice over-ride the ambient noise.

Amusement Park Outing - 8/24/2007

2007-08-24T23:30:00.000-04:00

Well, we did our annual outing to Canobie Lake Amusement park (in New Hampshire) tonight. Given Nichole's processor falls off so easily, we were constantly putting in on, then taking it off. Got quite tiresome, but better than the alternative of loosing it. We eagerly await the adult version of the snugfit for holding the processor on more securely (she tried the kid's version in Sturbridge, but it was too small).

The highlight of the night for me, was not the excitement of the Yankee Cannonball roller coaster nor being shot into the night sky on the Starblaster, but driving away from the park, in the dark car, with Nichole sitting in the seat behind me, yet being able to carry on a conversation with her! It was one of those moments I never thought I would experience. She couldn't see me or my wife in order to lipread, but she was understanding our questions and enthusiastically participating in the chat. I know I have said it before, but this is really a miracle device!

Listening Therapy

2007-08-22T07:22:00.000-04:00

Nichole has been seeing a Speech and Language Therapist in Concord Mass (Dorothy) for post-activation auditory rehabilitation (a.k.a Listening Therapy). So far, she has had three one-hour sessions. Dorothy does a great job making it fun for Nichole.

At her first session back on 8/6/07 (1.5 weeks post-activation), Nichole was scoring 86% when repeating sentences verbatim. Dorothy was amazed. Nichole was having trouble discriminating between f/s and d/b but Dorothy said that will come as Nichole's brain re-wires itself.

Nichole's second session on 8/14/07 (3 weeks post-activation) went very well. Dorothy started with the ling sound check, hearing aid only, then CI only. Nichole missed-identified the e and s sounds with her CI (and didn't even hear the s with her HA).

Ling HA CI
a a a
e e e
u u e
m m m
s nothing sh
sh sh sh

During the word recognition exercise, Nichole got 100% of the "easy" words and 83% of the "difficult" words.

At the thirds session (8/21/07 - 4 weeks post-activation), Nichole was getting all the ling sounds. Nichole breezed through the single word recognition exercise, only having some problem discriminating between f and s. So Dorothy did some rapid rhyming words (just changing between Fat and Sat). Nichole go 100% of the words. Dorothy indicated that if you see an issue with mis-identification of two sounds, you can do the rapid ping-pong between two words just varying the problem sound. If they start to discriminate between them, then it is a brain re-wiring issue (needs time) versus a mapping issue. As the session progressed, we noticed that Nichole does have problem with g/d. She said they sound the same. IF you look at the Frequency Allocation Table (FAT) for these two, they have a lot of overlap. Dorothy felt that a mapping modification would help. The session ended with a verbatim activity. Dorothy read a kids rhyming book (Sheep Trick or Treat) and Nichole had to repeat back each phrase. Out of a total of 87 words, Nichole only missed 7, which is a 92% success rate! Dorothy still is amazed at how quickly Nichole's brain has re-wired (as we are)!

Nichole at IMAX movie - 8/2/2007

2007-08-02T09:53:00.000-04:00

Our family does NOT go to the movies together much any more (at least the past couple of years) because Nichole can not understand the dialog (except for one or two random word). Well, I took the family to the New England Aquarium in Boston last night for a private event which included a free showing of the "Dinosaurs 3D" movie in their IMAX theater. We were all curious how Nichole would do, given she was activated exactly one week ago.

The CEO of the aquarium got up to welcome the guests and to give a little speech. We were sitting in the 2nd to last row, way at the top of the theater, and he was standing way down front (so hard to see his lips). He was telling how much money this group (corporate sponsors) raised for the aquarium, when Nichole turned to me and said "wow, 1.6 million dollars is a lot". Way cool that she could understand that phrase he had just spoken !!

As the film started, she gave a few "thumbs up" hand gestures, and after the film finished, she said she could understand a little of the narration.

Here is a snippet from an e-mail Nichole sent her audiologist this morning

"... we went to the New England Aquarium for an event and they showed Dinosaurs 3-D. I could understand phrases that were being said on the film (if I actually concentrated on the narrators voice) whereas before the CI, I only understood one, maybe two words throughout the whole film!!! So, I am really thankful for the CI and your help in mapping it."

Nichole has always had problems understanding electronically produced speech. It is so wonderful that she has the potential to understand it now.

Closed Set "Animal" game surprise - 7/28/2007

2007-07-28T11:38:00.000-04:00

My wife Rochelle was playing a closed-set listening game with Nichole late last night. The category was "animals". Rochelle would say an animal name while Nichole looked away, and she would have to repeat it back to my wife. Nichole was doing well. Her younger (hearing) sister Corey joined in the game as another "caller". Corey has been re-reading all the Harry Potter books, so of course she offered "Blast-Ended Skrewt". Corey and Rochelle were cracking up laughing, but low and behold, Nichole (who's eyes had been closed during the "call') said "Blast-Ended Skrewt" !!! The joke was on Corey after all, thanks to the CI and a quickly re-wiring brain. (This was just 2 days post-activation)

Alphabet Game - Day 3 - 7/27/2007

2007-07-27T23:41:00.001-04:00

Nichole and Rochelle are playing the "closed sets" game right now. Rochelle randomly said letters from the alphabet, with Nichole looking the other way. Nichole correctly repeated 85% of the letters! And the ones she got incorrect, were the "close" ones like Z/C, B/E, T/P, and one oddball of A/O.

They have switched to categories, like fruits, vegetables, dessert, etc. I was amazed when Nichole correctly repeated back "acorn squash"! It is 11:45pm and while Rochelle and I are both tired and want to go to bed, it is hard to say NO to Nichole when she is begging to do more, and clearly doing so well.

I will take some movies of this game tomorrow and post them (if I can figure out how).

Nichole Listening for new sounds - 7/27/2007

2007-07-27T14:05:00.000-04:00

I brought my stuff out to the car this morning in preparation for heading to work. Nichole, who usually sleeps late, per the sacred book of teenagers, was laying on her back in the middle of our driveway, eyes closed, just listening to all the sounds. She said she was hearing a constant "motor" sound, in addition to the birds in the trees, and an occasional car going by. I listened (hard) and the only thing I could detect (aside from the birds) was the very faint rustle of the breeze through the leaves of the trees (about 160 feet away). Hmmmm. Maybe that, or just a background hum from the processor?

Nichole's CI Activation - Day 2 (Mapping) - 7/26/2007

2007-07-26T21:03:00.000-04:00

July 26, 2007 - Mapping

Wow. What a great day!

Nichole had her day-2 activation session this afternoon with Marilyn (her Audiologist). She modified Nichole's processing to reduce the "chirpiness" of voices. Where yesterday she could only hear the SSSS and Shhhhh Ling sounds, now Nichole can hear all six (though the sss/shhh appear to be the same, as does eeee/mmmm). But she still hears them! I have posted a video on youtube.com of this part of the mapping.

We then put Nichole in "the booth" so that we could compare her CI hearing with her pre-implant hearing aid results. Back then, her right ear was about 105dB. Today, with her implant, she was at 20dB across the board (except 25db at 250Hz and 4000Hz). AMAZING !!!!! Her (hearing) little brother Mitchell was in the booth with her and said the sounds were *very* quiet.

We can almost watch her mind as it gets used to the new sounds. At 10:30pm tonight, Nichole wanted to see how many letters of the alphabet she could detect. It was a "closed set" game my wife started with her this morning (thanks to a session at Sturbridge). Nichole was 6 feet from me, facing *away* from me when she asked to "do the alphabet thing". In a normal voice, I said I didn't know what "the alphabet thing is". She immediately started explaining it to me. I stopped her to point out that with her back to me, she had understood my question, and had proceeded to answer it !!!! Whoohooo.

So we played the game. I sat 6 feet from her, in our kitchen (with the fridge running in the background, so not "sound booth" listening here), with only the CI on, and her facing away from me. Of the 26 letters I randomly said, she correctly said back 15 of them (that is 58% correct).

We have a toaster oven in one corner of our kitchen. When set to "toast" it ticks like an old egg timer. With her hearing aid, she needs to be about 3 inches from it to hear the ticking. With just her CI, she walked across the kitchen, into our living room, turned and went to the far corner of that room (so a wall between her and the oven). She could *still* hear the ticking 40 (serpentine) feet away!!!

She is totally psyched. She knows she still needs to work to understand speech fluently, but she is thrilled with the first 30+ hours with the implant (less sleep time last night). Her younger brother Mitchell (9) asked her if she would ever want to get the other ear implanted. She said YES, and that she would even elect to get it done NOW.

As a few people on the list pointed out to me yesterday, it is nice experiencing this journey with a young woman who can articulate what is going on, what she hears, and what she feels. Nichole even insisted on us carrying this electronic waterfall scene "thingy" (like a big picture frame) she had received for Christmas, to her appointment with Marilyn today. It plays an electronic rendition of a waterfall/burbling brook with birds in the background. She wanted Marilyn to hear it, because that sound, as she hears it with her hearing aid, is what she heard with her CI when it was first activated yesterday, and we tried talking to her. A cool way to get the point across to us.

Well, that is all for tonight.

Day 1 Update - 7/26/2007

2007-07-26T14:01:00.001-04:00

Yahoo. Nichole just IM-ed me at work all excited. My wife (Rochelle) was sitting on Nichole's bed, with Nichole about 6 feet away, with her back to my wife. Rochelle told her ahead of time that she would say a number (1-10) or a color (so this is a closed set of words that Nichole would be expecting). With her hearing aid off, and just using the implant, Nichole all but two of the words incorrect !!!!! Guess her brain is re-wiring already !!

Nichole's CI Activation - Day 1 (Turn On) 7/25/2007

2007-07-25T20:00:00.000-04:00

July 25, 2007 - Activation

Well, Nichole got her CI activated this afternoon. Her audiologist (Marilyn) had her face away from her while she did made the Threshold (T) settings of the quietest sounds Nichole could hear. Nichole heard the very first one. Whew! I had this fear that *nothing* would come through.

Marilyn spent time setting each electrode individually, then had Nichole turn back around and told her she was going to turn them all on, at a low volume, but that if it was too loud to tell her, and she would turn it down. When it was turned on, Nichole squinted her eyes, and said it was too loud. Marilyn turned it off, lowered it, then turned it back on. This went on for a few passes, with Nichole insisting it was too loud, and Marilyn lowering the volume each time. Marilyn indicated that Nichole had *great* auditory nerves because her "hearing" with the CI was so sensitive. That was GREAT news to us! She played with a few noise makers, and said that she hears a *lot* of high frequency sounds that she can't with the hearing aid in her other ear.

Nichole said that people talking sounded like birds chirping. While Nichole (and us as well) was *hoping* that she would simply understand what everyone was saying (the one in a thousand), she wasn't really disappointed that all she heard was "chirps". At least she didn't say so. We had been telling her ahead of time that it would sound strange.
Out of curiosity, how long after activation before your kids could actually understand spoken words? We didn't think of doing the Ling test until driving home, but she only hears the sssss and shhhh sounds (which is amazing in itself), but is missing the low frequency ones. We will mention that at tomorrow's session.

On the way home, it was obvious that Nichole was tired. She said that she had gotten a bit of a headache (anyone else experience that on activation?). She took the processor off for about 15 minutes to see if it helped her headache. She is upstairs now (10pm) unpacking all of the boxes of goodies provided by Cochlear, setting up the chargers, storing the accessories in her room, etc.

We go back tomorrow afternoon for the second part of the activation.

Nichole's "Outing" request - 7/24/2007

2007-07-24T14:07:00.000-04:00

Just wanted to share a little "moment" with you. I was at work when Nichole IM-ed me asking what we were doing this weekend. I let her know we didn't have any fixed plans and asked her why (figuring a friend may have asked her to go somewhere). She said she had checked the weather, and our area is due for some rain and scattered thunder storms all weekend. She said she wanted to be sure to be around "so she could listen for the rain and thunder"! Think she is excited about her new hearing and getting activated?

Nichole's Cochlear Implant Surgery 6/22/2007

2007-06-24T13:07:00.000-04:00

June 22, 2007 - The Implantation Surgery

We checked into Children's Hospital, Boston around 10:40am. About 1:15pm, they moved us to the Pre-Surgical holding area, where Nichole changed into a Johnny and had an IV started. We met with her surgeon, Dr. Licameli and Dr. Scott. Nichole received a small amount of medication to start feeling sleepy. About 1:50pm I went with Nichole to the operating room. I helped move her to the OR table and talked with her until they put her under. I then took her hearing aids out.

The waiting area at Children's is very nice. They have two liaison nurses who check with the OR every hour and give parents updates. At 5:00pm, the Liaison nurse said they are finishing up and that it should be another 45 minutes. 5:45pm came and went. 6:00pm. 6:15pm. Then at 6:30pm, we were getting nervous. We decided to go check with Nurses on why no update. Dr. Licameli came out as we were heading to the nurse's office. He said “Nichole is doing well, and the implant is perfect. Now let me tell you what went wrong”.

The insertion of the first implant had an issue. Dr. Licameli had completed the implantation. They closed the incision and then our Audiologist (Marilyn) performed the post-implant testing. The signal integrity results were terrible. An X-ray showed that the implant was folded up. The tip, which is very soft and flexible, had folded over on itself when it hit a deformity within Nichole’s cochlea (Mondini Syndrome – see notes at bottom). Dr. Licameli decided that rather than send Nichole on her way and see “how she does” (which Marilyn indicated would be terrible), he opted to remove the first implant and use the backup. They re-opened the incision (had to cut all the stitches), removed the first implant and installed the second one. Dr. Licameli said that during the first implantation, he had removed the guide wire while inserting the electrode array. For the second implant, he left the guide wire in for the whole insertion process, and then removed the guide afterwards. An X-ray of the second implant showed it was well placed, and post-implant testing results were perfect. Nichole will get optimal use from this implant.

At 6:45pm, we joined Nichole in the recovery room. She was still sleepy, and appeared to be in a lot of discomfort. They have her IV morphine for the pain. Around 8:00pm, they released Nichole form recovery and moved her up to 8 West. Nichole started vomiting small amounts of "old" blood (not a great feeling seeing that!). This continued for the next five hours or so. The nurses (who were wonderful) gave Nichole medicine for nausea, but I think she just needed to get rid of all that drainage which had run from her ear to her stomach via the eustachian tube.

Around 6:00am, a resident came in and removed the bandage. Everything looked fine. Two other doctors came in at 8:00am to check on Nichole. They made sure her facial nerves were not effected by having her make a bunch of different faces. Whew. Then Nichole mentioned her tongue was numb. They said that the numbness in Nichole’s tongue would fade over the course of a few weeks. There is a major nerve near the implant site that forks into two branches. One branch is the main facial nerve, while the other is the taste/sensation nerve to the back of the tongue. They needed to drill a hole in the skull between these two branches. They try to err on the side of the tongue nerve so that the facial nerve is not damaged. All testing of Nichole’s face muscles show no impact to the face nerve. Nichole mentioned her neck was sore on the right side (the implant side). The doctor indicated it was just stiff from being in one position during the surgery and would ease with time.

Nichole was discharged around 1:30pm. The pain med they prescribed is quite strong, making her a bit wobbly, and sleepy. We headed home (with a stop in the North End for some Regina's Pizza to bring home for Nichole's sister and brother. While Nichole is supposed to be on a "soft food" diet, we caved to her desire for a slice. Nichole basically rested the balance of the weekend.

The straw that broke the camels back

2007-06-21T11:08:00.000-04:00

Some people have asked what caused us to finally have Nichole implanted. In the fall of her Freshman year in high school, Nichole came home with an assignment to listen to three recorded interviews on NPR radio on-line, and critique the interviewers. I set her up in the computer room (quiet location), with her facing the screen with the speakers 2 feet from her face. Perfect conditions. We increased the volume, logged into NPR and started the first story playing. After about 30 seconds, Nichole turned to me and said "Dad, I know they are talking, but I can't understand anything they are saying". As a Dad, this made me want to cry. I ended up sitting across from her at the kitchen table, with headphones on, listening to the story on my laptop, pausing it, and repeating each sentence I heard so that Nichole could hear me and read my lips. This got her through that assignment, but I knew I couldn't always be there to help in the future.

My wife had been commenting in the weeks before this event that Nichole was not hearing too well. This inability to understand the electronically reproduced spoken word drove home the point to me; the proverbial final straw. I called her audiologist the next day and made an appointment for a hearing test. The results showed her down around 100dB to 110dB, worse at some frequencies. Her aided results were between 40dB and 60dB. Her word discrimination was in the low-mid 30% range. Clearly she was not hearing a lot of speech.

With no real options with respect to new, more powerful hearing aids, the Cochlear Implant offered us the only real hope for Nichole. So we contacted Marilyn Neault at Children's Hospital in Boston and brought Nichole in for a battery of tests. The results showed that Nichole was a good candidate. A CAT scan showed Nichole was a mild case of Mondini Syndrome, where the cochlea doesn't spiral the full two and a half to two and two thirds turns. Nichole's turned only about one and three quarters times. Even still, her surgeon, Dr. Greg Licameli indicated he thought she would still do very well with an implant.

Nichole was in every meeting and participated in all the discussions about the CI. Given the anticipated amount of work involved with hearing rehabilitation, we wanted her to be 110% committed to this, otherwise we would not proceed. She decided it was necessary, and that she would work to learn how to hear with it, so we decided to go ahead with the surgery.

Introduction

2007-06-21T03:14:00.000-04:00

Welcome. This blog chronicles my daughter's journey through the process of getting a Cochlear Implant. Nichole is 15 years old and was diagnosed with a moderate to severe bilateral sernsorineural hearing imparement (~70dB) at 18 months old. She started wearing hearing aids bilaterally at 20 months. For those not up on all the lingo, this just means that she couldn't hear normal conversations as a baby, so she wore hearing aids in both ears (see how simple that can be).

We decided on the Auditory Verbal Therapy approach to help Nichole develope her speech. This worked very well. Nichole has very natural speech. Most people don't know that she has a hearing imparement unless they are told. Nichole has been mainstreamed in public school her whole life.

Over the years, Nichole's hearing loss slowly progressed (got worse), until this past year, while in the 9th grade, Nichole's hearing got noticiably worse. It had drifted down from her original 70dB loss, down to 100/105 dB. For those who don't know the numbers, that means she could stand beside heavy machinery (like jet engines) and just detect a little sound. Her hearing aides allowed her to only hear 45/60dB sounds. Her word discrimination in a sound booth was about 30%. That means, that in the best conditions, she could only understand 30% of the words she heard.

Nichole is a smart young woman though. She developed a good lipreading skill which helped her fill in the blanks. She always used an FM system in school, to help her hear her teachers during classes. But still, she was only understanding a small fraction of the words being said in each class. Even with all that, she managed A's and B's (with one C) during her Freshman year in high school.