March for Equality-Signs of Change

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

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

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

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

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

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

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.