AMANDA HAS HER OWN BLOG!

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

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

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!

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

Here is part six of Amanda's Activation Video

August 12, 2008

Amanda's CI Activation Video Part 5 of 6

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

August 12, 2008 

Amanda's CI Activation Video Part 4 of 6

Here is part four of Amanda's Activation video

August 12, 2008 

Amanda's CI Activation Video Part 3 of 6

Here is part three of Amanda's Activation video

August 12, 2008

Amanda's CI Activation Video Part 2 of 6

Here is part two of Amanda's Activation video

August 12, 2008

Amanda's CI Activation Video Part 1 of 6

Here is part one of Amanda's Activation video               

August 12, 2008

Amanda's Activation Details

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!

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

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

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

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!

      

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!