Showing posts with label Mapping. Show all posts
Showing posts with label Mapping. Show all posts

Sunday, November 16, 2008

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


 

Friday, September 12, 2008

Mapping #5 - One month anniversary of activation!

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/

Thursday, September 11, 2008

5th Mapping Tomorrow

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?   
 

Saturday, September 6, 2008

Mapping #4 INTERESTING results

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!