Amanda's Cochlear Implant Journey

Amanda update-March 10, 2010

2010-03-10T17:06:00.000-08:00

What have we been up to since my last post in early August?? Here are photos from some of our activities.

We went to Universal Studios, Hollywood later that month. Here are two photos from that day.

At the end of August we were working in a jigsaw puzzle. Amanda decided that she needed auditory stimulation so you can see her working the puzzle in this photo with her iPod and headphones. She was multi-tasking very well! She also had her Sidekick, which has since been replaced with an HTC Hero from Sprint because we got fed up with T-Mobile.

In October, we went to San Bernardino County Museum. Amanda LOVED listening to the bird call display. She could push a button to hear how different birds sound. She thought some of them sounded really WEIRD!

Here she is playing a game after her haircut and fancy french braids.

In February we went to Terp Expo in Irvine, California. Since my retirement from being a Teacher of the Deaf two years ago, I have been interpreting and pursuing my National Interpreter Certification (NIC). The last day of the expo, I took Amanda with me and she had a blast! Where else could she spend the day where EVERYONE could communicate with her.

While I was attending workshops she was hanging out and being silly with some of the staff. They were great with her!

Here she is with Peter Cook, fabulous ASL storyteller!

She also got to see special ASL Performances starring Peter Cook, Keith Wann, Crom Saunders, and Branton Stewart. She was thrilled when they posed with her after the show.

In March, my son, Joel came for a visit on leave from the Navy.

Here she is with her brother, Joseph. He will have a tracheostomy tomorrow.

Can't have a blog posting without a photo of chihuahua, Goldy!

JULY HAPPENINGS

2009-08-02T20:44:00.000-07:00

So what's Amanda been up to during the month of July? Lots!

July 3rd we went to Long Beach Aquarium of the Pacific. I didn't even notice until I uploaded the photos to my computer that her magnet cover matched the coral colors exactly! You will notice Amanda's new braces on her top teeth which she got June 26th. For photos of the process of getting her braces you can check out my facebook photos by following this link:

http://www.facebook.com/album.php?aid=28332&id=1278145675&l=497c67995e

On July 12th we had the fabulous experience of meeting

Evelyn Gardner at Disneyland! She is as gracious in person as she is online. Evelyn is a bilateral cochlear implant user who has been a strong source of support for many!! It was great to meet her! July 14th was the first Amanda's anniversary of her CI surgery and Evelyn had offered much support and encouragement in the whole process.

For more photos posted on facebook of our meeting with Evelyn, follow this link:http://www.facebook.com/album.php?aid=29792&id=1278145675&l=fb02e21621

July 25th was Amanda's 15th birthday!

We had a family birthday BBQ and swim party.

Amanda also invited three of her deaf friends from school. Amanda and the two girls, Sisilia and Dominique will both be starting high school in the fall. The boy, David is entering 7th grade. The money Amanda received as gifts will be used for Amanda to buy a new laptop with a built-in camera. She wants to use it to have ASL video chats with her deaf friends. To see more facebook photos from Amanda's party follow this link:http://www.facebook.com/album.php?aid=31189&id=1278145675&l=aab4d3a149

July 31st was

Amanda's last

day of summer school. Daddy's Rock Star arrived home and then to beat the heat we got relief from by spending time in the pool. To see more photos from that day on facebook, follow this link: http://www.facebook.com/album.php?aid=31684&id=1278145675&l=2c460684e2

Second CI for Amanda??

2009-07-02T22:21:00.000-07:00

Today we had an appointment with Amanda's CI surgeon to discuss the possibility for a second implant. It took us an hour to drive to LA and three hours to drive home and the bottom line is that today was a bit of a disappointment.

Amanda has wanted a second CI before she even got her first one a year ago this month. There was only a brief period of time during her recovery period and before activation that she had to think twice about going through it again. But that quickly subsided and she was right back wanting the second CI again.

In our meeting with her ENT today, he was unconvinced that a second CI would benefit her speech production, which he said was the reason second implantations are performed.

We had brought documentation from her school audiologist and speech pathologist (who have both known Amanda since she started at the school at age 3 and was a student in my class) showing that she had made considerable progress in the areas of speech and listening since her CI.

Nothing about Amanda has ever followed a typical pattern. And even though she only has three electrodes active, has facial stimulation if she turns the volume past 11:00 and can't hear her own voice...Amanda is thrilled with her cochlear implant. It has made a huge difference in her life.

She now watches television with the volume on, has favorite songs on her iPod (she especially likes drums), she can hear people talk, buzzers, bells, helicopters, traffic, her dog, Goldy's dog tags, dogs barking and many other environmental sounds although she can't always localize them.

In addition to her increasing ability to hear and identify environmental sounds, she has made tremendous gains in closed set speech detection, identification, discrimination and comprehension. And her speech production when combined with visual cues has improved as well. If something is written, she can read it with a fair amount of intelligibility and combining auditory with visual cues (lipreading & visual phonics) she can correct her speech production errors.

We believe Amanda deserves a chance to see if with a second implant she can have more electrodes active, be able to hear low frequency sounds, hear her own voice, and experience less facial stim. This will increase the chances that she will be able to make even more progress with her speech and listening abilities and pick up other environmental sounds.

The plan right now is for his audiologists to do a series of tests before he decides to do the second surgery. We will be contacted for an appointment and go from there.

If anyone has any wise words of wisdom we'd be happy to hear them.

Amanda is officially a high school student!!

2009-06-12T11:10:00.000-07:00

Amanda's Middle School promotion ceremony yesterday was fabulous! Can't even believe she'll be in high school in the fall! It's been 11 years since she was my student in preschool where we first met.

Here is Amanda walking into the Social Hall as the promotion ceremony began. She survived 8th grade and the first year of her CI among many who don't exactly think kindly of cochlear implants and those who get them.

Here she is walking onto the stage to receive congratulations from the Superintendent, Director of Instruction, Guest Speaker and Director of Residence. She also received her hard earned 8th grade diploma.

Her good friend and fellow graduate, Sisilia and her family made candy leis for all the graduates. They also made flower leis and head pieces which they shared with Amanda. The girls were really weighted down. Sisilia is a year younger and maybe 3 heads taller.

Joseph was really proud of his sister. So proud in fact, he didn't even complain, too much, when she adorned his head. She likes to share. :-)

And of course you gotta pose with the family in attendance. Here are Amanda's mom's mom and her husband, her mom's sister and her daughter...and Gonzálo, Joseph and me. Missed my sons, Amanda's stepbrothers Joel and Trevor...but they're off in other states with their own commitments.

Here is Amanda posing with her Middle School Principal for three years, Tammy Mitchell. Amanda received the 8th Grade Principal's Award this year at the awards ceremony last week. :-)

And last, but certainly not least, are Amanda and me after lunch at Souplantation. A great end to a great day!

Busy Week!

2009-05-31T15:49:00.000-07:00

We have had a VERY busy, very fun week!

Sunday, May 24th we went to the beach, which is something we don't do very often because sand and a motorized wheelchair don't mix very well. My sister was visiting from Massachusetts as well as my brother's son and his family from Colorado. So my nephews were having a get together at the beach and we hadn't seen some of them in a very long time, so it was a golden opportunity to get together.

First photo Amanda, Gonzalo and Joseph on the Santa Monica Pier.

We met this family that had the cutest little chihuahua complete with sombrero so I had to take a picture of them!

It started getting cold so Amanda, Joseph and Gonzalo are covered up and watching the beach fun.

We stayed until dark and as we were leaving Amanda and I tried to get a photo of us with the lit up ferris wheel in the background.

Monday, May 25th we went to my brothers house for a family gathering. My nieces and nephews prepared a song entitled, "It's Good to be a Geek" for my nephew who was celebrating his 25th birthday. It was a great time for my brother, sister and me to be together!

Wednesday, May 27th we went to Disneyland with my nephew and his family from Colorado. Here they are around my mother's brick that is between Disneyland and DCA. Amanda was very mindful of her CI and brought a baggie to put it on when we went on Splash Mountain.

Thursday, May 28th, we went to Disney's California Adventure with same nieces and nephews. Here we are WET after having ridden Grizzly River Run. And here are the brave souls getting ready to take off on the Maliboomer. I prefer to stay on the ground and take pictures.

Friday, May 29th we went to Anaheim Convention Center for the annual Abilities Expo. Joseph mentioned to the Permobil people that his right front tire was making a strange clicking noise. They replaced BOTH front tires AT NO CHARGE! We had never seen a wheelchair jack before. It was fascinating!

And tomorrow, Monday, June 1st Amanda is going to Universal Studios with her 8th grade class for the end of the year trip. She wrote a new blog entry about it yesterday. amandakristineconde.blogspot.com

I posted a lot more pictures on facebook. Go to www.facebook.com to sign up. You can find me by my email: jenniferbrunoconde@sbcglobal.net. My ID is jenniferbrunoconde.

We had a great week! But we're TIRED!

Amanda and her brother, Joseph

2009-05-22T23:14:00.000-07:00

We're well into a gorgeous Southern California spring season! It's been just over 2 months since I posted my last blog entry. I've been hanging out a lot on facebook lately and have many photos posted there. Take a look if you get a chance. Just click on the facebook icon or go to facebook.com. It's free and easy to join.

So what's Amanda been up to since March? She's finishing up 8th grade and getting ready to promote from middle school to high school in the fall. So are these photos of her graduation cap? Nope! The cap actually belongs to her brother, Joseph.

We've been involved in several festivities related to Joseph receiving his Crime Scene Investigation (CSI) Certificate from San Bernardino Valley College (SBVC.)

First event was Karaoke night at the Korean Restaurant, Myung Ga, with the New Visions Club. This is a club that advocates for SBVC students with disabilities. Since Amanda and Joseph's dad, Gonzalo and I are also SBVC students, we belong to the club along with Joseph.

Did Amanda attempt to sing along? No way! Here she is in the background chatting away on her Sidekick with various friends. Joseph was belting out a tune along with his fellow graduate, Sam. The next photo is Gonzalo and Joseph "gracing us" with their singing voices. Sam and New Visions club advisor and favorite SBVC history teacher Ed, both surprised us with their vocal abilities. They were GOOD!

This one is of Joseph, Goldy and Amanda before we left for the next pre-graduation event. The next one is of Joseph, "Rose" and Amanda at a special recognition ceremony for disabled students receiving certificates and degrees.

And finally, May 21, 2009 arrived - the day of Joseph's college graduation. My sister, Kathryn was visiting from Waltham, Massachusetts so we were pleased that she was able to witness Joseph receiving his CSI Certificate.

Joseph has Duchenne Muscular Dystrophy (DMD) and Amanda does a lot to help him..and it's mostly positive. (It's tempting to poke and torment your brother when he can't poke back.) Amanda had another brother, Chris who died 3 years ago on 06/06/06 at the age of 14. Chris also had DMD. As Amanda enters high school as a freshman in the fall, Chris would have been a senior.

I'll post a blog entry of Amanda's June 8th grade promotion. She is very excited right now because the 8th graders are going on an end of the year class trip to Universal Studios June 1st and she can't wait because she is tall enough to ride everything this time. She's planning on how to effectively care for her cochlear implant processor on the water rides. She continues to do a great job of being responsible with her CI and still wants a second one to become bilateral.

Deaf Day @ Disneyland March 14, 2009

2009-03-16T01:18:00.000-07:00

Amanda, her dad, Gonzálo and her brother, Joseph went to Deaf Day at Disneyland on Saturday, March 14, 2009.

It's been 6 months since Amanda's cochlear implant was activated and her brain is still working to make sense of what she's hearing in noisy environments. She doesn't always share freely about what she can hear, so it's exciting when she volunteers information.

When she got home, she told me that she heard the music, actors singing and speaking in the live stage play, "Aladdin" in Disney's California Adventure. She sat up close and was especially excited to hear the Genie's voice. :-)

Amanda used a sport band to be sure that her processor stayed firmly in place on the fast rides. It was cold and she also kept her sweatshirt hood on most of the day.

She posted additional Disney photos on her facebook page.

It has been an exciting 6 months adventure and we're looking forward to the next 6 months. Her PE teacher, Lindy texted me the other day to say that Amanda kept saying she heard a pager or something ringing. Lindy tried to locate what it was, but couldn't figure it out.

Later she sent me another text message to say she had finally figured out what it was that Amanda had been hearing. It was birds outside. :-)

Amanda Calls BINGO-Captioned Video Clip

2009-01-12T23:43:00.000-08:00

BINGO! You gotta love it! And what better way for Amanda to practice her speaking skills?! It's practical and fun and as the BINGO caller, it gave her LOTS of enunciation opportunities as well as grammar and syntax.

Watch this 8 minute and 56 second captioned video clip of our first attempt at playing BINGO since Amanda had her cochlear implant activated 5 months ago.

Did we understand her? Were there any confusions? Did someone lose the game due to Amanda's pronunciation.....OR not paying attention? Watch and see!

Keep in mind that American Sign Language is Amanda's primary mode of communication and that she never ever heard anything until her CI activation August 12, 2008 following her CI surgery July 14, 2008. Nor did she spend any extended length of time using her voice.

We bought the bingo game specifically for her to practice her speech skills. We also plan to use it to practice her speechreading and listening skills as well.

Notice that the first number she called was O 62. She pronounces it O six-two. During the course of the game she increases her confidence and abilities to the point of knowing that during spoken English, people say O sixty-two. She even self-corrects a few times.

We're very pleased with how it went! Go Amanda!!

Lots of New Sounds 4 1/2 months After Activation

2009-01-03T00:35:00.000-08:00

Fourteen year old Amanda heard chihuahua, Goldy walking through dry leaves and "we" (meaning "I") decided it would be fun to sweep them up. She did a good job, enjoyed herself and didn't stop until they were all swept up. (Then she marched in and asked her dad for money--which he did NOT give her. We think she was kidding.)

Amanda helped her brother, Joseph connect earphones to his iPhone. Sometimes she uses the earphones to listen to herself play the piano keyboard or her iPod or the TV.

Gonzálo, Jennifer and Goldy are very pleased with Amanda's progress!

Daddy's girl all the way!

HAPPY NEW YEAR 2009!

This was an incredible New Years Day for Amanda! Last year - January 1, 2008, Amanda heard one thing. Absolutely nothing.

This New Years Day, 4 1/2 months after her cochlear implant activation, we sat outside our home in sunny Southern California for about an hour and we listened.

AMANDA HEARD:

Vehicles passing by

Dogs barking

Goldy's dog tags jingling

Jennifer sniffing and blowing her nose (FIRST TIME)

Jennifer coughing (FIRST TIME)

Herself sniffing (FIRST TIME)

Herself calling Goldy (a little bit) (FIRST TIME)

Airplanes (a little bit) (FIRST TIME)

Jennifer sighing (FIRST TIME)

Pen dropping (FIRST TIME)

Ice Cream Truck (FIRST TIME)

Birds tweeting (FIRST TIME) and Amanda tweeted back

Leaves Crunching (FIRST TIME)

Camera Shutter (FIRST TIME)

Our slippers shuffling on the sidewalk (FIRST TIME)

Jennifer singing, "We Wish You A Merry Christmas"

Her dad, Gonzálo whistling (a little bit) (FIRST TIME)

Gonzálo snapping his fingers

Everyone crunching Sun Chips except herself (Same thing happened with popcorn last month)

Each of us calling her name

Other recent new sounds for Amanda have included awareness of the sounds that bodily functions make. Enough said.

Today she was watching Tom and Jerry and could hear the slurping, crashing, zinging, hitting, plunking, screeching, zooming, clicking, buzzing, yelping, smooshing, and all the other sounds effects involved when a TV cartoon cat and mouse get into it.

2009 is going to be a FANTASTIC year!

Amanda is hearing lots of new things!

2008-12-22T20:27:00.000-08:00

SMOOCH! "I heard that!"

Dad & Joseph: "Amanda!"

Amanda: "What?"

Since Amanda's last mapping a month ago she has been hearing more and more each day! In fact she just posted a new blog entry with photos of some of the new things she is hearing.

It's pretty amazing since she has only been activated since August (4 months ago) and had NEVER EVER heard anything before.

One of Amanda's goals for herself was to be able to have people call her name and have her be able to answer and say, "What?"

After she posted her blog entry tonight, she was surprised to hear herself kissing her chihuahua, Goldy.

Last week Amanda and I were playing cards and Amanda could hear the difference between 8 and ace! They looked the same on the lips but she could hear the "t" at the end of eight and the "s" at the end of ace.

Check out her blog entry: Deaf Girl Amanda

amandakristineconde.blogspot.com

And below, if you didn't have a chance to view them, are two videos of us doing two elf dances; a Disco Elf dance and a Country Elf dance. Amanda can more easily follow the music and dance moves since her cochlear implant.

The videos will be available until mid January. Let me know what you think of our fabulous moves!

Country Elf Dance

2008-12-22T13:46:00.001-08:00

Send your own ElfYourself eCards

Conde Elf Dance

2008-12-17T16:12:00.000-08:00

Send your own ElfYourself eCards

Amanda and School

2008-12-08T01:24:00.000-08:00

Busy couple of days! Amanda received an honor roll

award last Thursday. She often gets positive behavior

recognition, but seldom realizes the same academic

triumph. So we were quite pleased, and of course

attended the award ceremony.

The next day, parent teacher-teacher conferences

were held. Amanda is in 8th grade and rotates for

8 periods among 7 teachers plus a speech therapist

(4 times weekly) and an audiologist (once a week.)

Mr. Zarembka-Math Ms. Maxwell-English

Ms. Chute-Family Life Mr. Branton-History

Mr. Tarpay-Science Ms. Caustin-Speech & Language

Mrs. Gleicher-Reading

Her Adapted Physical Education teacher, Ms. Hoffee was unavailable as was the

Audiologist, Ms. Rogan, so unfortunately, we didn't get pictures of them. However, we maintain regular contact with them so we know how she's doing, but I would've liked pictures.

All of Amanda's core academic teachers (English, Reading, Science, History and Math) are deaf. Since the focus of the school is on instruction through ASL, the SLP and the Audiologist support what instruction she is getting in the classroom.

Amanda has only been activated less than four months and had NEVER EVER heard anything prior to implantation. Hearing aids did not benefit her although she wore them diligently, especially in her early years hoping to hear something. She began asking for an implant at age 10 and after major insurance battles, was finally approved for surgery just before she turned 14.

Both the SLP and the Audiologist have noticed improvement in speech production this school year. And since her last mapping, we have all noticed a very positive effect on what she is able to hear. She is increasing her accuracy and consistency in being able to distinguish between individual phonemes, words, phrases and sentences.

And she's immensely able to hear the ruckus that goes on in deaf classrooms. In fact she sometimes acts as an interpreter for students trying to get deaf teachers attention. The student will yell out and Amanda will let the teacher know the student wants them. THAT would never have happened before. So it's an interesting way to measure progress, but progress it is.

March for Equality-Signs of Change

2008-12-01T23:12:00.000-08:00

This is not my typical posting regarding Amanda and her cochlear implant journey, but it is something that does affect her and the rest of our family. Amanda has two stepbrothers: my sons. One of them is straight. The other one is gay. We love them both and believe they deserve equal rights in all areas, including the right to marry whomever they fall in love with.

We participated in the nationwide protest November 15th against the passage of Proposition 8 here in California November 4th. Above are some photos of us at the Redlands City Hall.

It was a heartwarming day and we met many diverse people from all walks of life, gay and straight, who were standing on the corner for one sole purpose; to support equal rights for all and to repeal Prop 8.

I found this video on jointheimpact.wetpaint.com and decided to post it here because I think it really speaks to love and acceptance of all families and justice for all, not just for some.

On a connecting note to the theme of this blog.....Amanda did hear the supportive honks of cars that passed by!

Signs of Change from Woven Essence on Vimeo.

It is not captioned, which, if you've been following my blog, you know that I caption all of my video clips.

However, I listened to it several times and can tell you that at the beginning and at the end, the marchers are chanting, "What do we want?!" "Equal rights!" "When do we want it?" "Now!"

In another part of the video the marchers are chanting, "Gay, Straight, Black, White! Marriage is a Civil Right!"

The music playing throughout the video is called, "Nothing In Between" by Stuart Davis. The lyrics and his website are printed below.

Nothing In Between

from the album Something Simple

Stuart Davis 2008

stuartdavis.com

There is nothing in between us when we sleep 

Every night the bliss begins to leak 

Nothing in between us when we laugh 

it’s something that our head will never grasp 

It’s seen in between

There’s nothing in between your joy and mine 

It’s all a lot of nectar on the vine 

Joy is how my parents were entwined 

and there’s nothing in between their lives and mine 

We’ve seen

There’s nowhere to hide in the open Reality 

Love is so wide, there isn’t a boundary 

There is only one eye without any enemy 

when you’ve seen in between

There’s nothing in between our skin and light 

Nothing in between the wind and kite 

Nothing in between our lips and grace 

Nothing in between the tongue and taste 

It’s seen

(Refrain)

There is nothing in between you and I 

Nothing in between blue and sky 

Nothing in between us and love 

Nothing in between wings and doves

(Refrain)

There is nothing 

in between

Amanda's 3 months mapping-Video Clip

2008-11-23T01:33:00.000-08:00

Here is a short captioned video clip (2 minutes and 52 seconds) of a portion of Amanda's 3 month mapping (11/14/08) to go along with the previous post below, dated November 16, 2008.

The actual appointment was about an hour and 15 minutes.

Amanda really likes the 3 channel program and has been using it consistently for a week now. She's got less twitching and is able to detect as well as discriminate and identify more sounds.

We're optimistic and pretty satisfied right now!

Amanda's 3 months mapping

2008-11-16T00:01:00.000-08:00

Daddy's Girl--Ain't she "sweet?"

Amanda being "kind" to her big brother, Joseph

Amanda took this picture of Gonzálo and me

waiting for her mapping appointment

Amanda's 3 month mapping went pretty well. Lalita, the Advanced Bionics audiologist was again working with Amanda's Kaiser audiologist, Fran to assist in giving Amanda the best possible programming for her unique situation. I'm working on editing and captioning a short video clip and will post that when it's ready.

Because of incessant facial stimulation, Amanda's surgeon, Dr. DiTirro had ordered an xray of her head last month. We had it done last week and brought the results in with us and gave them to the receptionist, Claudia. Dr. DiTirro reviewed them and let Fran know that nothing had shifted and her internal implant was right where it was supposed to be.

Claudia--the best receptionist ever. She even signs!

Of the 16 channels available to her, Amanda has been operating on 4 active electrodes since her initial mapping 3 months ago. It was decided with Friday's mapping to turn off another electrode in one of her programs to see if the twitching can be more controlled. She wasn't getting any auditory benefit from the 4th electrode anyway.

One of her programs, P2, was left as is and P1 was set similarly, with HiRes-S w/Fidelity 120, an IDR of 80 and a wider pulse width. P3 was the program in which one more electrode was shut off so that she is now operating on 3 electrodes. In order to operate with Fidelity 120, 4 electrodes must be active, so P3 is HiRes-S without the Fidelity 120.

Amanda was tested in the sound booth with all three programs. She's still not getting much response in the lower frequencies on any of the programs. Interestingly, her best responses overall were with P3, the 3 electrode program! She got a response at 65 dB at 1500 Hz; 40 dB at 2000 Hz; 45 dB at 3000 Hz; 40, 35 and 30 dB at 4000, 6000, and 8000 Hz.

And detection of Ling Sounds with P3 was between 25 dB and 45 dB except for /u/ in which she had no response.

So, true to form, no standard pattern fits Miss Amanda. With more time, we'll see if P3 makes a significant difference in what she's able to hear and how the twitching is apparent.

She continues to love her CI and wears it all day until bedtime without fail. Even before this last mapping, she is hearing more things including the RAIN, which she said sounds like Shhh.

Gonzálo and I were playing mancala the other day in the kitchen. It is a game in which you move polished stones (rocks) from one cup to the next one at a time in the wooden game board and drop them onto other stones. Amanda was in the bathroom and we were in the kitchen. She came out of the bathroom and reported that she could hear us dropping the ROCKS.

Another new sound for her is consistently hearing the TURN SIGNALS in the car.

So progress is slow and marred with obstacles in the form of twitching, not being able to hear her own voice or low frequency sounds...but she's liking whatever it is she does hear and still wants to become bilateral.

As we were leaving the appointment and hearing towards the elevator, she saw her surgeon Dr. DiTirro walking down the hall ahead of us. She said, "I need to tell him I want another CI!" She waited until he came out of the bathroom and then told him she wanted a CI on her left side.

He said he knew there'd been problems with her CI but that he'd need to speak with Fran about her recommendations regarding another CI. Then we asked if we could take his picture and he graciously knelt down by Amanda, put his arm around her and

smiled.

Dr. DiTirro and Amanda

Advanced Bionics Tour

2008-11-09T23:18:00.000-08:00

On October 24th, we went on a family outing to Advanced Bionics in Sylmar, California which is about an hour away from our home.

Amanda had been wanting to tour the plant where they made her cochlear implant ever since seeing photos a fellow blogger, Jennifer (Sweetpea) posted on her blog. stereophonicbionic.blogspot.com. Sweetpea had toured the AB plant in June of 2008 and posted some great pictures and described them in detail.

http://stereophonicbionic.blogspot.com/search?updated-max=2008-08-21T12%3A39%3A00-05%3A00&max-results=15

Above is the spot in her blog where Sweetpea posted the photos. If I knew how to link it by naming it, I would. But at this point I don't. You can still get there from here. Copy and paste and then look at June 27th and June 29th.

Everyone at Advanced Bionics was very gracious and we enjoyed our tour immensely! They reserved an accessible parking spot so that we could park close and Amanda's brother, Joseph could get out of the van with his wheelchair with ease.

They also hired an interpreter for Amanda who was very efficient and it was a good experience for her to have someone other than her stepmother interpret for her. Plus it freed me up to take photographs. They didn't come out great however, which is another reason to check out the photos on Sweetpea's blog.

Of the five photos I posted above:

#1 is of Amanda and me at the AB sign just outside the front door.

#2 is (from left to right) our interpreter, tour guide, Amanda, her brother, Joseph and her dad, Gonzálo.

#3 is of spooky hands getting ready to attack Amanda

#4 is of workers in a sterile environment putting components into the cochlear implants

#5 is what looks to be an older section of Advanced Bionics. We didn't actually go into that building but saw it as we were leaving. When I went to take a photo, a man wearing an AB name tag came out, so it is apparently still being used for something related to AB.

The only thing I had hoped to see but didn't was a whole stack of cochlear implants ready to put into boxes. We did, however see the boxes ready for shipping, but it wasn't the same.

Probably what impressed me the most was how incredibly fine the electrodes were that go into the array. They looked as fine as a spider web. I took a picture but they were so fine that I couldn't even find it in the photo.

If you are interested in where and how Advanced Bionics cochlear implants are made, I highly recommend the tour!

What does twitching look like? Video Clip

2008-10-26T17:59:00.000-07:00

Twitching! What does it look like?

Curious about what Amanda's NAS (Non-Auditory Stimulation) or twitching as we call it, looks like...here is a video clip. It is just under 8 minutes long (7 min. and 58 sec. to be exact.)

In it, her dad is videotaping while I am testing her on all three programs with the 6 Ling Sound Test (Ah, Oo, Ee, Mm, Ss, Sh) as well as listening for Goldy's dog tags and clapping. She wanted me to test her with the volume all the way up. She doesn't typically keep the volume this high, but from time to time she does turn it up like this.

When the volume is lower, most of the twitching is not there, but the sound is quieter except for Ss and Sh which she seems to be able to consistently hear.

For you who have cochlear implants or are involved in those who do and want details about her programing, her current mapping is as follows:

Advanced Bionics 90K Harmony

Hi Res-S w/Fidelity 120

P1 (09/12/08) T-Mic only IDR 70

P2 (10/10/08) T-Mic only IDR 80 (newer program with wider pulse width and increased IDR)

P3 (09/12/08) Mic/Aux 50/50 IDR 70

Although all electrodes are inserted into her cochlea, she currently only has 4 of the 16 electrodes active due to trying to control the twitching.

We are still awaiting an xray of her implant to see if there is anything internal that is causing this twitching and we have an appointment with her audiologist and an AB audiologist on Nov. 14th.

Amanda likes hearing whatever it is she's getting and can distinguish some words based on the high frequency sounds she is hearing. If this wretched twitching could be eliminated...

Jennifer's son, Trevor visits

2008-10-20T01:04:00.001-07:00

Here we are at Disney's California Adventure where we had a few hours to play in the park with my son, Trevor. He will be on the Disney Cruise Line on the Magic for 6 months. So if you happen to be going on a cruise and end up on the Magic look for Trevor as Entertainment Host.

Behind us is Hollywood Tower of Terror as Amanda poses with Trevor. In the next photo is Amanda's brother, Joseph, her dad, Gonzálo, me, Trevor and Amanda in front.

It was Amanda's first visit to Disneyland and California Adventure since her CI was activated 2 months ago. She still can't identify any sounds but knows she hears "something." If it's turned up a little too loud, she gets twitching. If it's turned down to avoid the twitching, she hears soft sounds. Sigh.

Her next mapping is November 14th and an Advanced Bionics audiologist will again be in attendance to see if she can help figure out why the twitching is still present, why Amanda can't hear her own voice and to assist in finding an appropriate map.

Amanda's surgeon has authorized an xray of her head to see what's going on in there (smile) so as soon as we hear from radiology we'll get that scheduled.

Amanda continues to enjoy hearing whatever it is that she's hearing, wears her processor faithfully and has a positive attitude about the whole thing.

Amanda's 6th Mapping

2008-10-12T21:58:00.000-07:00

Life's Little Pleasures--feeding cheese to Goldy!

Amanda just posted a new entry on her blog. http://amandakristineconde.blogspot.com/

Amanda had her 6th mapping on Friday, October 10th. Programing her CI continues to be a challenge for her audiologist, Fran. At mapping #4 Lalita, an Advanced Bionics field specialist flew in to assist in Amanda's situation. I described that mapping below.

As of Friday, she still has only 4 electrodes active because the others give her twitching with no auditory benefit. She went into the booth for an audiogram and came out with dismal results. She was only able to hear high frequency sounds, which pales in comparison to her audiogram during her 4th mapping, in which she could detect some mid frequency sounds. Fran even replaced Amanda's T-Mic to troubleshoot, set her up with a new program (P2) and went back into the booth. Same results.

After Friday's mapping, Fran left P1 and P3 the same.

P1 is no clipping, T-Mic only

P3 is no clipping, Mic/Aux at 50/50

At the mid position (12:00) Amanda can hear minimally, but if it goes much higher, she hears more but the twitching accompanies it, which she doesn't really mind.

Her previous P2 map was clipped so that there was no possibility of twitching so at school during speech, the SLP could work with her on detection and discrimination without her having the physical response. The other benefit was that the other kids couldn't torment her by getting her to twitch with purposeful loud sounds.

However, she started having twitching with P2 as well, so that's why we scheduled the additional mapping. That, in addition to the fact that Amanda reported that couldn't hear anything. She had a cold, which we have learned, affected her ability to hear. So for about two days she wasn't able to hear anything, but that eased up after her cold symptoms did.

P2 is a new program with a wider pulse width and increased IDR. She is also on Fidelity 120 which apparently she had been after week 2. There is no clipping, T-Mic only. So far at the 12:00 position there isn't twitching and she can hear environmental sounds and people talking.

But she can't hear her own voice on any of the programs, although she previously could. Sigh.

We check the ling sounds, clapping and Goldy's tags most days. Amanda's ability to hear the ling sounds varies from day to day. The more we think about it, we are wondering if there is some intermittent malfunction either in her processor or internal components.

Several things came out of Friday's mapping:

1. Fran will be talking with Amanda's ENT surgeon, Dr. DiTirro this week to ask him if he thinks Amanda should have an xray to see what's going on in there.

2. She ordered two new T-Mics for Amanda.

3. She will be talking to Lalita, the AB audiologist to see if she will be available during Amanda's mapping next month to be able to access the mapping computer remotely to offer assistance in Amanda's unique case.

Amanda is obviously getting enough benefit out of her CI to make it worthwhile. Sometimes she'll come out of her room and ask if someone is calling her because she's hearing "something." She had a speech session today and could hear almost all of the 44 speech sounds from the computer and could tell that some were different than others. Then minutes later she couldn't hear some of those she previously could. So we're back to the intermittent "malfunction" theory. Gotta figure out what's going on with it.

Meanwhile, in spite of everything, Amanda loves her CI and wears it faithfully.

In fact, she wants another CI.

She wants to be able to hear from her left side as well and tell where sound is coming from. Perhaps a second CI would bring more positive results.

Jennifer's son, Joel visits!

2008-09-23T02:26:00.000-07:00

My son, Joel, who is in the Navy and stationed in Hawaii, came for a very brief visit. Here he is with me, and then with Amanda and getting a kiss from Goldy.

The BIRDS and the bees-Captioned Video Clip

2008-09-23T02:16:00.000-07:00

Our visit to the Aquarium of the Pacific in Long Beach, California was unusual and eventful when we entered the Lorakeet Forest to feed nectar to these active and colorful birds.

Amanda's First Musical Keyboarding Experience-Captioned Video Clip

2008-09-22T23:13:00.000-07:00

Okay everyone! This is it! A profoundly deaf 14 year old who just 38 days ago (prior to her cochlear implant activation) couldn't hear ANYTHING, and never had, is calling some of the sounds coming from her new electronic keyboard, "weird."

Mapping #5 - One month anniversary of activation!

2008-09-12T19:31:00.000-07:00

Today is Amanda's one month anniversary of being activated!

What a difference a month makes!

She had her 5th mapping today and so far so good!

We took Goldy's collar and dog tags with us and made sure Amanda could hear them before we left the audiologist's office. She's still got some twitching going on (CLICK PHOTOS TO BIGIFY)

with louder sounds

but...

hopefully she'll habituate

and her auditory nerve

won't be so sensitive at

some point. She has one program where the volume is clipped off before the twitching starts so that will be good for Disneyland and other loud places.

And yes, she can once again hear Goldy's dog tags. Yay!

We also had a productive day in another sense! We bought a brand new van today! We had two big old gas guzzling vans to accommodate Amanda's two brothers with Duchenne Muscular Dystrophy. Since her 14 year-old brother, Chris passed away two years ago we decided to get a new more environmentally and economically friendly minivan . Joseph fits nicely in it, don't you think? And it is a rear entry van which we've never had so hopefully parking won't be so much of a problem! AND we don't plan to towed, ticketed or flat tired on the way to or from audiology appointments.

Amanda is eating a snack, doing her homework and watching television...with earphones on! That is a first...well the earphones part anyway! Great study habits, hmm?!

Okay...here's an update! Amanda just posted a photo entry on her blog. I had taken a picture of her on the way to pick up our new van. Remember I had said that we took Goldy's tags with us to the mapping? Well look at what's around Amanda's neck! Click it to BIGIFY. Not sure why some pictures allow you to bigify and others do not. But this one is definitely worth bigifying!

http://amandakristineconde.blogspot.com/

5th Mapping Tomorrow

2008-09-11T21:16:00.000-07:00

Amanda has a mapping appointment tomorrow.

She is totally maxed out on volume,

and some of the sounds she previously had

have still not come back since last week.

Like Goldy's tags!

And knocking. LOUD knocking! Nothing!

Her dad, Gonzálo is a fantastic cook!

Wouldn't it be great if Amanda could hear

shishkabobs sizzling on the BBQ?

Mapping #4 INTERESTING results

2008-09-06T00:01:00.000-07:00

Hmmm, yesterday's mapping was interesting. This is Lalita. She is an audiologist from Advanced Bionics, the manufacturer of Amanda's cochlear implant, who attended Amanda's mapping to provide support to our audiologist, Fran. Both Lalita and Fran worked diligently to provide Amanda with appropriate programs.

Amanda is not that easy to program. She has had such quirky results with her mappings;

#1 Twitching; #2 A feeling inside her head; #3 Sound; #4 Which brings us to yesterday.

AB audiologist, Lalita (L) with Fran (R) and Amanda's back

Bottom line is Amanda is hearing some things she didn't before, but she isn't hearing some that she was hearing previously...like Goldy's dog tags. If you've been following along, you know that those tags were #1 on Amanda's list of reasons for wanting a CI. Hopefully she'll get those back soon. And also, as of tonight, she can't hear plastic crinkling or clapping, which were additions from mapping #3 last week.

But she CAN now hear her own voice, and that is new. So for now, it's a trade off.

What we had heard about mappings being trial and error is revealing itself to be oh-so-true. We're living it. EVERYTHING with this whole CI procedure for Amanda has been so unpredictable. So at least this follows a sense of consistency in a very odd way. Sigh.

We're scheduled to go back in two months to give her auditory nerve a chance to do its thing (be stimulated after 14 years of hearing NOTHING and to then communicate with her brain.) So for now, our plan is to ride this roller coaster and see what happens. Tomorrow is a new day.

However, we're already a little concerned that she's already adjusting to the volume as this evening she has it turned all the way up in order to hear anything. So we'll see if we last the 2 months before we make a call and visit lovely LA again, which is about an hour and a half from home without traffic.

One REALLY POSITIVE thing is that for the first time in 14 years Amanda has an audiogram with measurable hearing!! She's had many many many audiograms over the years and they've always looked the same NR (No Response) at any frequency or intensity. And she now has dots above 90 dB and no arrows pointing down to 120 dB!

Shortly after we got home, Amanda and her brother, Joseph decided to have a "video iChat" with each other on their laptops. Since Joseph has Duchenne Muscular Dystrophy and can't lift up his hands to sign, and Amanda can hear some things but certainly cannot identify speech at this point, take a minute to imagine how their conversation went.

Here they are comparing their screens, as they were having technical difficulties. Turns out Amanda's computer settings were on audio instead of audio/visual. So for a while they were attempting to communicate via voice or texting. It was pretty interesting and we tried to stay out of their way and let them figure it out unless they asked for help, which eventually they did.

Pretty soon, I got invited to join the iChat, accepted and participated briefly.

THEN they decided to get creative with Photo Booth. Amanda posted a lovely photo of herself along with Goldy and me on her blog.

http://amandakristineconde.blogspot.com/ It is a must see!

And right here, for your viewing pleasure is a one of a kind photo of the Conde family!

AMANDA HAS HER OWN BLOG!

2008-08-31T11:59:00.000-07:00

Amanda has REALLY enjoyed reading everyone's comments on my blog! In fact so much so that she started HER OWN BLOG last night! And guess what color template she chose? Yep! Pink! So I have switched my template and may switch again as there are so many nifty colors!

I tried green, which is my favorite color but it was SO bright it hurt my eyes and was difficult to read. So for now I'm using fall colors.

Check out Amanda's new blog! Deaf Girl Amanda http://amandakristineconde.blogspot.com/

Here are some photos of us at a family birthday party yesterday.

Jennifer, Amanda, Gonzálo and Joseph

Amanda put these "headbands" on us that were made from the popper steamers for the surprise party. They were cute at the time, until we took them off and realized they had stained our foreheads!!

Amanda is making sure that Joseph gets some birthday cake. Gonzálo is conversing with "our" mother-in-law, Roberta in the background. Roberta is Amanda and Joseph's grandmother. Her daughter was Laura, the kids' mom and Gonzálo's wife, who died when Amanda was 2 months old. So she is our mother-in-law.

Amanda can hear something!! VIDEO CLIP

2008-08-30T00:22:00.000-07:00

Amanda's mapping results have been interesting to say the least!

After her activation-she got twitching.

After her first mapping after activation-she got something she could feel inside her head.

After yesterday's mapping-she got SOUND!

YES, SOUND!

Her audiologist, Fran was trying to figure out some decent maps for Amanda to try this week and was getting some very bizarre and unexpected twitching results.

During the programming, Amanda had been responding with, "Twitching," "Inside," or "Both" to indicate if she was getting twitching, an inside the head feeling, or both. We got quite an pleasant surprise when quite casually and rather nonchalantly, Amanda announced in ASL, "I heard it."

Just to double check, we asked, "You mean this is different from before?" She signed, "Yes, this wasn't inside my head. I heard this."

So we are on our way!!!

When we got home I grabbed the video camera to do a repeat filming of some of the things I taped of her in the last video clip (See Amanda's CI Activation-Part 6 of 6, posted August 19, 2008.)

First thing she tried was.........of course.......Goldy's dog tags! She also tried the TV and flushing the toilet. We added the dryer and ended with the microwave.

Success all around!! Enjoy watching the video clip! I certainly enjoyed filming, editing and captioning it! Woo-hoo!! It didn't even matter that we had a flat tire on the freeway on the way to her mapping appointment and made it just in time because we had allowed enough time for lunch which we didn't get until after the appointment! Don't even know why I brought it up. None of it matters! This was a GOOD DAY! A VERY GOOD DAY!

Amanda's Second Mapping Update

2008-08-23T21:46:00.000-07:00

Dear readers and followers of Amanda's Cochlear Implant Journey,

Review

If you've been following my blog, you know that on Wednesday, August 13, 2008, I posted regarding Amanda's Tuesday, August 12th activation. You also know that we were surprised, unprepared and disappointed to say the least.

We were not at all prepared for Amanda to only feel her right eye twitching and getting no sound whatsoever. If you viewed all 6 video clips you would even have witnessed this twitching for yourself.

Fran, her audiologist, set the volumes very low since Amanda said the twitching was bothering her. That afternoon and the next day, Amanda was experiencing music on her iPod with the direct connect earpiece and cable via the twitching.

What? No twitch? No nothing?

Two days after activation, half way through the day on Thursday, August 14th, Amanda reported she didn't feel a twitch anymore, which meant she wasn't sensing sound anymore. She had worked up through the softest to loudest programs: Program 1 (P1), Program 2 (P2) and Program 3 (P3). We thought that maybe after her auditory nerve rested perhaps she'd feel the twitch again. But the morning of Friday, August 15th, after a night of rest brought no twitching when Amanda put on her processor. So her brain had acclimated and she was ready for more volume.

On Friday, August 15th we put a call in to Fran. She had a small window of time and agreed to increase the volume since Amanda still had another week before her second mapping. Fran upped the volume in the computer and then when we arrived, took Amanda's processor and downloaded the new program. Amanda was back to twitching again and we felt somewhat relieved that she was getting something again. This time, Fran set the volume levels with a larger range since Amanda had adapted quickly through the smaller range of volumes.

Amanda took it remarkably well that instead of going to Long Beach Aquarium of the Pacific that we had started out for, that we instead drove the hour and a half to Los Angeles to fiddle with her processor. She has been such a trooper throughout this whole process and wants to have as much success as possible with her CI.

What? Increased twitching?

So again we started the process of starting on P1 and working her way up through the volume levels of each program 'til we got to P3. THEN....we were alarmed on Sunday, August 17th, five days after activation, when Amanda displayed severe facial twitching in her jaw in response to loud sounds at the increased volumes. We hadn't realized she had any facial twitching from the first day, until with the extended viewing during the editing and captioning process of the activation video clips, it was evident that the minor twitching had been there all along. Now, with the increased volume this facial twitching was major and quite alarming.

We again called Fran and who said to keep the volumes low to keep the twitching minimal if it bothered her. So Amanda adjusted her programs and volume where she could find the balance between keeping the eye twitching but not the facial twitching. It was a trial and error process which wasn't always successful. But even so, sometimes Amanda would adjust it so that she'd twitch wildly to the music in her iPod or PSP, or she'd ask us to clap or speak loudly so we could witness it. So it obviously wasn't painful, but something that took getting used to.

We likened it to electronic stimulation technology like a TENS machine or a High-Dow, which Gonzálo and I had purchased recently to ease aching muscles in our shoulders and back. The feeling is weird and a bit alarming at first, but you get used to it. So Amanda dealt with this odd twitching for 5 days, knowing that her second mapping was scheduled for Friday, August 22.

Amanda's second mapping: Friday, August 22, 2008

Amanda had her second mapping yesterday. Fran stimulated each electrode separately and isolated four channels where Amanda could sense something in her head in response to auditory stimulation. This was the first time Amanda felt anything inside her head. AND....no twitching was present!

When Fran found the first channel, Amanda excitedly exclaimed in ASL, "I feel something inside my head!" She described it as a pulsing or whooshing. We, of course, were ecstatic that there was something new there! The no twitching was a pleasant bonus!

Fran consulted the implant manufacturer, Advanced Bionics, by phone for assistance in setting a map for Amanda. The AB audiologist guided Fran in planning the mapping for this week. So, Amanda ended up with two 4 channel maps; one at a soft level (P1) and one at a louder level (P3.) The third map (P2) is a 14 channel map set at minimal facial stimulation level.

In addition, Fran programmed Amanda's second processor similarly except at a louder level for P1 and the loudest level for P3. P2 is also a 14 channel map, set slightly louder. Depending on how this week and Friday's next activation goes, an AB audiologist may be present at Amanda's September 5th mapping.

We have seen progress these last two days in that her auditory nerve stimulation seems to be habituating so that louder volumes are necessary to achieve the same "inside the head" feelings, pulses, whooshing, whatever it is that she is getting. She is already on her second processor and is experimenting between at P1 with higher volumes and P3 with lower volumes.

She just tried the P2 setting on the first processor. Even on the lowest volume there was facial twitching and no "inside the head" feeling. We'll try again later in the week.

We had a family get together today and Amanda's goal had been to be able to shock people by having them say her name and she would nonchalantly turn around to see what they wanted.

Needless to say, it didn't happen. It was noisy and lots of sounds were coming at her at one. She doesn't have the discrimination to determine if it is a voice talking to her or a door slam or people yelling and splashing in the pool. Plus she herself was in and out of the pool and spent a good part of the time waiting for her hair to dry enough to put her processor back on.

So, all in all we feel as though we are on a positive track. We had Fran initially leave Amanda's green processor light flashing in response to sound, and red light on if the headpiece magnet wasn't in place so we could have a visual cue. With her new found "inside the head" sensation, we may ask Fran to disable it at her next mapping.

School starts Monday, August 25, 2008 and that will be just one more thing kids find to be "curious" about. We've coached and practiced... and we'll see. Amanda is very excited to start the new school year as an 8th grader and be with her friends and favorite teachers.

Here is a photo of a gift she received from two of her young cousins who couldn't make it to the BBQ yesterday. It is a barrette from Olvera Street in Los Angeles, along with a note to say that they couldn't wait to see her, talk to her, hear her hear and were praying she'd do well. Sweet girls.

Amanda is ready for school!

2008-08-20T20:42:00.000-07:00

Just a quickie post to say that Amanda is excited and ready for school! She got a new backpack today...PINK, of course! She'll start 8th grade in the same school she's been attending since she was in preschool at age 3 and I was her teacher. That means this is at least her 12th backpack!

Most people don't know she received an implant this summer so there will be a variety of responses, I'm sure.

We also ordered her techno color covers for her processor and headpiece. They should arrive tomorrow from Advanced Bionics.

Amanda's CI Activation Video Part 6 of 6

2008-08-19T01:35:00.000-07:00

Here is part six of Amanda's Activation Video

August 12, 2008

Amanda's CI Activation Video Part 5 of 6

2008-08-17T19:30:00.000-07:00

Here is part five of Amanda's Activation Video-Amanda's iPod

August 12, 2008

Amanda's CI Activation Video Part 4 of 6

2008-08-17T12:06:00.000-07:00

Here is part four of Amanda's Activation video

August 12, 2008

Amanda's CI Activation Video Part 3 of 6

2008-08-15T00:18:00.000-07:00

Here is part three of Amanda's Activation video

August 12, 2008

Amanda's CI Activation Video Part 2 of 6

2008-08-13T23:40:00.000-07:00

Here is part two of Amanda's Activation video

August 12, 2008

Amanda's CI Activation Video Part 1 of 6

2008-08-13T20:40:00.000-07:00

Here is part one of Amanda's Activation video

August 12, 2008

Amanda's Activation Details

2008-08-13T10:16:00.000-07:00

It's 10:30 AM as I start this blog entry...and 14 year old Amanda is still sleeping!! That is very unusual for her. But then again, she had the most unusual day yesterday!

After never ever hearing, the cochlear implant which she received a month ago was activated yesterday afternoon. Last night I posted photos from the activation and am currently working on editing and captioning video clips from yesterday.

Meanwhile, here are some random, non-technical details of yesterday's events.

Amanda's activation was "interesting." She wasn't so sure at first what the heck she was hearing or feeling, except with the first and subsequent sounds there was definite twitching in her right eye (the CI side).

Her audiologist, Fran, set all her programs low, but any time she detected any sound at all, there would be that twitch.

Fran consulted with Amanda's surgeon, Dr. DiTirro who triple-checked to make sure no facial nerves had been affected. The doc reconfirmed there had been full insertion and everything looked good. He told us that if the twitching didn't stop over time, which can happen as the auditory nerve and brain adjust, several of the electrodes could be deactivated. So we'll see.

Also, turns out that her hair is really thick. So we may need to shave the area for the headpiece to thin it out a little.

Bottom line after one day is, she seems to like it! Actually I asked her directly and she gave me a resounding "YES! She's really liking her iPod for more than looking at pictures and playing games now. While still at the audiologist's office we hooked up the direct connect with the cables and she listened to music almost all the way home.

First thing she did when we got home was to run to see if she could hear Goldy's dog tags jingling. She couldn't, even with turning up her processor to Program 3, full volume. Maybe with the next mapping.

She had fun looking through the box of goodies that came with her AB Harmony CI and tried all the earhooks.

Next, she went into her bedroom and turned on the TV. What was unusual about that was that this time she turned UP the volume rather than just watch it with captions. That was a first! She was pleased that she could hear/feel something.

Then my sister called to find out how things went. Amanda jumped at the chance to say hi to my sister and each one of her grandchildren and was thrilled that when they YELLED into the phone she could hear/feel something. She has said hello to familiar people before but NEVER had tried to hear them before!

Then we went outside and sat on the grass to see if she could hear the cars passing by. She could...or should I say, her eye twitched when they got close. Some people passed by and Goldy did her thing and barked loudly at them in that high pitched annoying chihuahua way. Amanda was excited she could hear it.

She wound down the evening by telling Joseph to turn down the TV as it was bothering her and after that she listened to CDs on a portable CD player with her right ear pressed up against the speaker as she fiddled with the volume on her processor and the CD player.

Subsequently she asked how the dri-aid kit worked and what she was supposed to do with her processor while she slept. Since my friends on the Advanced Bionics Hearing Journey Forum have talked about it recently, I was educated and said it lived in the dri-aid kit overnight. So she plunked the whole shebang; processor, t-mic and headpiece in the dri-aid kit, put the battery in the charger and began her bedtime routine.

She had cleared a place on her dresser to put the battery charger Tuesday morning. Then when we got home she cleared a place on her shelf for the carrying case and dri-aid case. The big box still sits on the kitchen table and the items will eventually be incorporated where it makes most sense to put them.

Now that Amanda's activated and registered with Advanced Bionics, we'll be able to go to their webstore to order assorted colorful covers and caps for her processor and head piece so she can change them when she wants.

It's almost 11:00 AM and still she sleeps!

Stay tuned for activation video clips!

Update: At 11:15 she got up, put on her CI, put a TV dinner in the microwave and heard the door slam. She said she wasn't there for the ding...but probably wouldn't have heard it at this point.

Amanda's CI Was Activated Today!

2008-08-12T23:37:00.000-07:00

Waiting the last torturous moments

in the waiting room:

What do you mean we don't look tortured?

I guess we hide it well!

Joseph Gonzálo & Jennifer

(Brother) (Dad) (Stepmom)

Amanda and Jane

(our friend who just happens

to be the audiologist

at Amanda's school

and has known her

since age 5.)

Amanda getting ready for her first sounds ever!

You heard that?!!

Ooh! Not so sure about all this!

There's a whole lot of twitching goin' on!

Listening to my iPod is really cool!

At home checking out the Advanced Bionics Goodies!

Trying out a Hawaiian Music CD

after a very long day!

The night before Amanda's hook-up

2008-08-11T22:23:00.000-07:00

Here are some photos from today...the day before

Amanda's activation. It's actually here. Her hook-up will really happen tomorrow.

What a journey it's been! It has taken us so much to get this far.

And here it is. Here we are.

Amanda has been asking for this moment since she was 10 1/2. She has just turned 14. All this time. She didn't waver. She didn't give up. This is what she's wanted for 3 1/2 years and

it is now here. The night before.

Amanda has never heard anything. Never ever. Not once. We wonder how she will respond to her very first sound.

We imagine amazement...then enjoyment...and hopefully with lots of input and practice, understandment. Yes, I know it's not a word, but it should be!

We hope her activation will bring positive results and that she'll be able to incorporate sound into her life in ways that are enjoyable and productive.

The time is almost here. The first step is only 16 hours and 34 minutes away.

Amanda at DCA-Last video clip before activation

2008-08-10T02:56:00.000-07:00

Here is a video clip of Amanda and me at Disney's California Adventure (DCA) in Anaheim, CA. It was taken July 27, 2008, two days after Amanda's 14th birthday. We were there smack dab between her cochlear implant surgery and her initial stimulation (also known as hook up or activation.) We are in line waiting to ride the new ride, Toy Story Mania, for the first time.

She has been going to DCA ever since it opened February 8, 2001 when she was 6. She has always enjoyed going to Disneyland and DCA even though she cannot hear anything. There's certainly an abundance of things to experience through the other senses! When she was 10 she began asking for a CI partly so she could hear the music and the shows at the parks.

She wanted to go for her birthday (See post dated Tuesday, July 29, 2008 for photos) so we decided to videotape some of it to document her last quiet visit to Disneyland and DCA. I purposely fiddled with the sound alternating between the natural resonance and the soundlessness Amanda has experienced for 14 years.

A Little Silliness-Three Days Before Activation

2008-08-09T02:10:00.000-07:00

So, we're waiting VERY IMPATIENTLY for Amanda's CI activation in three days, and a little silliness came over us. Here is Amanda wearing her Advanced Bionics Monkey's CI processor. The headpiece is attached with velcro to her hair.

To add to the silliness, Amanda's miniature monkey, Harmony's magnet is attached to her internal magnet. THREE DAYS. THREE DAYS and Amanda will have her own behind the ear speech processor after waiting THREE YEARS!

Exactly one week until CI ACTIVATION!

2008-08-05T00:41:00.000-07:00

Click on photo to bigify

ONE WEEK until my stepdaughter, Amanda's CI activation and we are BURSTING with anticipation! There have been so many recent activations going on all over causing a tidal wave of excitement! We can barely contain ourselves.

This photo was taken when Amanda was a student in my preschool class when she was three. She is the little pink fluff ball in tights in the center of my ten students. They are all 14 now and entering 8th grade.

Gotta go now so we can hurry up and wait for August 12, 2008!

Disneyland/DCA 15 days before Amanda's activation

2008-07-29T01:56:00.000-07:00

Here we are at Disneyland and Disney's California Adventure 15 days before Amanda's CI activation date! FUN DAY!

Here is Amanda with her new pink iPod!

Toy Story Midway Mania at Disney's California Adventure-FUN New Ride and one that Joseph could go on!

Amanda is sitting in the first "A" in CALIFORNIA just outside the entrance to DCA. You can see Disneyland behind her.

Here we are at the Mickey Floral just inside of Disneyland.

Amanda gets a Birthday iPod

2008-07-25T22:04:00.000-07:00

For Amanda's 14th Birthday, she wanted nothing more than a pink iPod. Once her CI is activated 8/12/08 we'll know a whole lot more than we do now about what kind of music she will like since she's never heard anything.

Here are some photos of our trip today to the

Apple Store.....and Cheesecake Factory.

Amanda offers a drink By a giant pink iPod

of water to Joseph

Some technical discussion?

Gonzálo & Joseph ready Jennifer & Amanda

for dessert posing before digging in

Outside Heading home to figure out

Cheesecake Factory how to use her new iPod

Happy 14th Birthday, Amanda!

2008-07-25T02:35:00.000-07:00

Happy 14th Birthday Amanda!!!!!!!!!!!!!!

I took these while Amanda was waiting for a doctor's appointment the day before her birthday. I thought the sillouhette effect of Amanda and her dad was captivating. Wouldn't you agree?

And Joseph still doesn't have a braided beard like Amanda was discussing while waiting to be called for her CI surgery. (See Tuesday, July 15, 2008 Amanda's Nervous Energy-Surgery Day.)

Amanda's pre-op video clip with Dr. DiTirro

2008-07-22T22:55:00.000-07:00

Here is a 1 min. and 44 sec. video clip from Amanda's pre-op appointment July 9, 2008.

Faithful readers may remember that this was the day we spent 3 1/2 hours finalizing everything for Amanda's CI surgery to discover that our van had been towed. (See post dated Thursday, July 10, 2008 Amanda's Surgery is Scheduled!)

This clip was taken right before I got downright silly insisting that I was getting a cochlear implant and not Amanda so that I would get the monkey. (See post dated Sunday, July 13, 2008 A Little "Monkey" Business.)

I post this clip to show our FABULOUS no hair cutting, dissolvable stitch using, monkey tracking downing ENT surgeon, Dr. Frederic DiTirro. Everyone would be fortunate to have a surgeon such as Dr. DiTirro!

We appreciate Dr. DiTirro more than we can put into words. But if we had to narrow it down to several words, they would have to include SENSITIVITY, SINCERITY and COMPASSION.

Enjoy the video clip.

Amanda NOT swimming

2008-07-19T00:03:00.000-07:00

Here is what we did on Friday, Day 4 post surgery. Amanda and I took turns videotaping in the pool while she kept her ear dry.

We obviously were conserving our words because we all have a VERY limited vocabulary! The longest sentence uttered was 7 words...and that was by Gonzálo.

I tallied up how many times we said these high frequency words & phrases in this short video clip:

Goldy-5

Good girl-5

Baby-3

Hi-3

There was also a lot a giggling and laughing going on!

Amanda - Day 3 Post Op

2008-07-17T22:49:00.000-07:00

Hi All!

Three days post surgery...

Amanda:

* Has washed her hair

* Been able to wear her glasses

* Went on a series of outings today

Dentist (I had a cleaning appt.)
Library (to return books and check out new ones)
Friend's house (so her dad could help give medicine to a cat)
Lunch (treated by friend after assisting with cat)
Speech clinic (hour long session)

For the first time in her life...she heard something! Yes, no doubt tinnitus, but it's a first for hearing anything. Having never heard anything, it's obviously difficult for her to describe. Some of you have mentioned ringing, roaring elephants, rhythmic heart beat, washing machines, etc.

Amanda has nothing to compare with and it's not like after she is activated when we will be able to say, "That was the microwave dinging," or "That was a helicopter."

But we have no idea what she's hearing, so we can't share our infinite wisdom. We've told her that whatever it is she's hearing is common and most of the time it goes away.

Thoughts on tinnitus?

Amanda's Monkey, HR talks to Amanda's Dad, Gonzálo

2008-07-16T17:45:00.000-07:00

Here's an impromptu conversation between Amanda's monkey, HR and Amanda's dad, Gonzálo the day after Amanda's CI surgery. My voicing was a little off as it is challenging to voice for a signing monkey whose fingers are fused together.

Amanda's first day after Cochlear Implant Surgery

2008-07-15T20:53:00.000-07:00

Amanda had a great first day after her CI surgery! Since she'll be 14 this month, usually the first thing out of her hands is, "My birthday is next week!" However, this morning the first thing was, "It's almost August!" Her activation is August 12th and none of us can wait!

She let us take these photos although she did not want us to take any of the removal of the pressure bandage. She named her monkey, which she deemed a girl, HR, as these initials are on her shirt. This comes from HiResolution Bionic Ear System from Advanced Bionics. Each child receiving an Advanced Bionics HiRes cochlear implant receives a monkey with a removable velcro cochlear implant processor, coil and magnet. (See a video clip in A Little "Monkey" Business post dated Sunday, July 13, 2008.)

Amanda with HR August 12th they will have matching CI's when Amanda is activated and receives her behind the ear (BTE) processor. This will be the start of the process to see just how much benefit a motivated prelingual deaf 14 year old with a bilateral profound hearing loss will receive from a cochlear implant, and how she will incorporate sound into her life.

Amanda's incision Her surgeon did a fabulous job with everything and really took his time to make sure everything went just right, which is why the procedure took 4 1/2 hours. He cut NO HAIR and used dissolvable stitches on her incisions as well as on two ear tags he removed.

Goldy is enjoying the afternoon floating around on a raft. Sadly, Amanda can't swim for 10 days, so she was watching from the sidelines but didn't complain at all.

Gonzálo and Jennifer are posing for a photo taken by Amanda.

Her doctor wanted us to call him today to let him know how she's doing. Together we made up a rough list of what we'd say to him:

How Amanda is doing: Surgeon's Response:

She has some pain and is taking Tylenol regularly

Normal-will ease up

Her throat is a little sore from the breathing tube

Normal-will ease up

Her ear is numb

Common-may take a few months

She is a bit dizzy at times

Normal-will ease up

Thank the doctor for removing her ear tags

It was his pleasure

The doctor is a nice man

Genuinely touched

We can't say enough great things about her surgeon. He gave us his cell phone number and said we can call him any time! We don't have anything to compare with regarding ENT surgeons, but I'm guessing this isn't common.

Here's hoping Amanda will continue to do well with the recovery process this week. She gets to wash her hair the day after tomorrow!!

Amanda's Nervous Energy-Surgery Day

2008-07-15T00:30:00.000-07:00

Here is a quickie video clip of some of the things Amanda did to get rid of nervous energy while we were checking her in at 6:00 AM for her CI surgery yesterday.

Keep in mind we got up at 2:15 AM. Where did this creativity and silliness come from at such an early hour?

Notice the button shirt and pull up shorts? She's actually wearing my clothes so they are roomy. And the button down shirt is so she didn't have to pull anything over her bandaged head after surgery. Worked out pretty well!

Handy tips I got from Advanced Bionics Hearing Journey Forum. http://www.hearingjourney.com

Amanda's surgery was today!

2008-07-14T19:26:00.000-07:00

Amanda has a cochlear implant!

Amanda and Joseph arriving at the hospital

Amanda with her bionic monkey prior to surgery

Her dad kissing her as she was leaving for the OR

The surgery is behind us and went off smoothly....overall. Amanda did really well and is happy to be home. In fact I just checked on her again and she is sleeping peacefully. She has an adjustable bed and she's raised the head as we've heard that it can help reduce swelling and be more comfortable.

That, and the fact that we left home about 3:45 AM and returned home about 4:45 PM, she was under anaesthesia for 4 1/2 hours and finally got the operation she's been wanting since she was 10...could all possibly contribute to the fact that she's exhausted!

Amanda's only question for her surgeon before the operation was related to the location of her monkey! Being a sweetheart and humanitarian doctor that he is, he did the only thing he could. He went searching for the whereabouts of her monkey. Three members of her surgical team delivered it to her about 5 minutes before she left for the operating room. She didn't have quite the outwardly joyous response they seemed to be hoping for as she'd just been poked three times by two nurses...and they had finally found a decent vein.

Yes, that's me in a jumpsuit! Wonder why?

Me with Amanda's monkey. I knew I'd get to hang with her monkey one way or another!

So why am I in a jumpsuit, you ask? Interesting question! When they realized Amanda was totally deaf and couldn't do ANY lipreading staring at surgical masks in the OR, the part of the surgical team who came to get her decided it would be a good idea if I went with her and interpreted.

So last minute, I threw on a jumpsuit and tiny surgical booties over my size 10 flip flops, and headed over to the OR with them. Just before we hit the OR door, someone suggested what a good picture it would make. Since I still had my camera in my pocket, I unzipped the jumpsuit to retrieve the camera and posed for this picture. Amanda couldn't contain herself and burst out laughing.

So I stayed for the 5 minutes it took to have her scoot from the gurney to the operating table, get her positioned, explain what they were doing and see her drift off to la la land. No telling how much Amanda understood since:

1) She was looking pretty nervous with 8 or 9 people fussing around her

2) I had a mask over my face and so much of ASL is conveyed via facial expression

3) Here was her stepmother in the OR wearing a white jumpsuit, hair net and mask trying to

not get in the way of people getting her situated

4) AND PROBABLY MOST IMPORTANT she was undoubtedly concerned about me

confiscating her monkey (See Previous Blog: A Little "Monkey" Business)

When we were called to sit with her in recovery, she opened up her eyes long enough to say, "What happened to the white clothes you were just wearing?" Of course to her, 4 1/2 hours passed like 4 1/2 seconds so she must have thought I did a magic trick getting that jumpsuit off so quickly.

To us....the 4 1/2 hours seemed like 4 1/2 days. Only thing that made it bearable for me was getting to spend some quality time with Amanda's bionic monkey!

A Little "Monkey" Business-Filmed July 9, 2007

2008-07-13T22:07:00.000-07:00

Here is a video clip we took at Amanda's pre-op appointment. In it, I insist I am getting the CI instead of Amanda because I want the monkey that comes with it. For some reason....she doesn't believe me! I don't even think she's planning to share her monkey!

We had to keep ourselves entertained for the 3 1/2 hours of the pre-op appt. Little did we know we would have more "excitement" at 5:30 PM when we realized our van had been towed!

Amanda's CI Surgery is tomorrow!

2008-07-13T14:16:00.000-07:00

Thank you everyone for your kind words, your positive support and your sharing in the excitement of Amanda's implant surgery tomorrow!

We all go in waves of exhilaration, restlessness, disbelief and wonder at tomorrow's surgery and attempting to visualize it's significance and how Amanda will incorporate sound into her life.

This is how we spent our day..... relaxing and preparing to go to bed early so we can be refreshed and ready to leave the house about 4:00 AM to drive back to"glorious" LA!

Amanda with Goldy, Joseph, Gonzálo with Amanda, Jennifer

Amanda July 6, 2008-Part 10 of 10 Captioned

2008-07-13T00:10:00.000-07:00

Here is Part 10 of 10 video clips of Amanda

(Captioned)

Might as well call this the Goldy Video clip. Watch this last video in the series and you'll know why!

We've had this little Flip Mino Videocamera a week now and I have learned SO MUCH! I can now videotape, transfer to my MacBook Pro into iPhoto, edit in iMovie, upload to video.google.com, download to overstream.net for captioning and transfer to my blog at blogger.com. I have just finished captioning all 10 video clips.

Nothing on this video series was rehearsed or planned. That should be obvious! I had sat down on the swing with the camera to learn how to use it and Amanda joined me for about 35 minutes and we just filmed away.

I wanted to get some footage before her cochlear implant surgery which was 8 days away....scheduled for July 14, 2008. It is now July 13, 2008 so tomorrow is the big day!

Amanda July 6, 2008-Part 9 of 10 Captioned

2008-07-12T20:33:00.000-07:00

Here is Part 9 of 10 parts of Amanda's Video

(Captioned)

Amanda discusses some of her reasons for wanting a

cochlear implant and her reaction when an ENT finally said

YES!!

Amanda July 6, 2008-Part 8 of 10 Captioned

2008-07-12T18:11:00.000-07:00

Here is Part 8 of 10 parts of Amanda's Video

(Captioned)

Amanda discusses her ferocious watchdog, Goldy and how one time someone broke in and stole a bunch of her things during fumigation.

Amanda July 6, 2008-Part 7 of 10 Captioned

2008-07-12T16:11:00.000-07:00

Here is Part 7 of 10 parts of Amanda's Video

(Captioned)

Amanda discusses being born deaf, the only deaf person in her family, her mom's illness, her brothers' Muscular Dystrophy, the day she got Goldy, Goldy's broken leg, Goldy swimming in the pool.

Helpful hint: None of this is scripted. I was voicing for Amanda when she went into this whole ASL story about certain parts of her life. We had bought the video camera earlier that day, so I was trying to learn how to use it, record her, look at her through the lens and voice for her. I didn't even think about what I was going to do with the video at that point....or captioning.

When I went to caption it and watched each frame MULTIPLE times....I realized I had misspoken for her more than once. I had to ask her to come watch the video clip in one part so I could caption it appropriately. I realized it would be best to mute the sound and just read the captions during the middle segment where her hands are flying a mile a minute and you'll get a more accurate translation.

For clarification purposes: When Goldy broke her leg, I did not pick her up and carry her to the pool! When Amanda and I conferred, she was referring to after Goldy came home from the vet, which we took her to promptly, and had her back leg in a cast. Sometime during the time she was in a cast I did indeed pick her up and carry her to the pool so she could be near us since she was just a puppy at the time.

Amanda mentioned her brother, Chris who died at age 14 two years ago. Amanda's mom died when Amanda was 2 months old and still in the hospital. She was 1 lb 10 oz when she was born and stayed in the NICU 4 months.

Amanda July 6, 2008-Part 6 of 10 Captioned

2008-07-12T10:32:00.000-07:00

Here is Part 6 of 10 parts of Amanda's Video

(Captioned)

Amanda's Earrings