Sunday, November 23, 2008

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!

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  

Dr. DiTirro and Amanda


Sunday, November 9, 2008

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.  Sweetpea had toured the AB plant in June of 2008 and posted some great pictures and described them in detail.

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!