Hearing the Television - 11/9/2007

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.