Sunday, October 26, 2008

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 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...


Monday, October 20, 2008

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.

Sunday, October 12, 2008

Amanda's 6th Mapping

Life's Little Pleasures--feeding cheese to Goldy!
Amanda just posted a new entry on her blog.

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.