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



deafgirlwhohatesstupidcelebritiesactingstupid said...

That's amazing that Amanda wanted another ci!

She's making amazing progress after only being implanted a short time!

Please read my blog

its in it early stages so im tryin to figure out what to write in it and stuff


Dave said...

What a wonderful post! I am excited for Amanda and her progress.

Anonymous said...

Wow, it sounds good that Amanda's new mapping is going to improve up :)

I believe that you are so great mother. And she is very very lucky that she has got good audiologists! They are so kind to help her to solve the twitching problem.

I also hope I could hear without lipread but it never to solve as there is no good speech tutors in Hong Kong. They don;t like to teach CI users who is over 14.

Wish you would keep going to write your status or life. It is so touching!!!

Cannot wait for yr video too :)

(From Hong Kong)

Charlotte said...

This post sounds so postive.

I am so so happy that she is finally hearing some things! Keep pushing for 2nd one... (I know you will!)

Jennifer Bruno Conde said...

Hi deafgirlwhohatesstupidcelebritiesactingstupid/
deafgirllovessoaps! Whew! That's a mouthful! I've looked all over your blog and can't find your name anywhere. I'd love to know what it is.

Good luck with your childcare major in college. And knowing what to write in your've done a great job already. :-)

Yes, Amanda is doing really well in only 3 months!


Thanks, Dave. Your comments means so much to me.


Betty, Wow! Comments all the way from Hong Kong. Thank you for reading my blog and your positive words. Good luck with your CI. How long have you had it?


Hi Charlotte, Youbetcha we'll keep on it for becoming bilateral!


*Tasha* said...

Oh my.....

I have to admit I was afraid Amanda would HATE her implant and be totally overwhelmed. And it'd be understandable too.

So, this FLOORED ME. I have to say, I'm a bit emotional. I use the 120 channels and she's only using THREE and is able to distinguish and even say things like "rain sounds like shh" and hear the turn signals (annoying sound, but amazing to recognize consistently!)

YOU GO AMANDA, and you go too, Jennifer, for being such a wonderful and hardworking mom.

Wow, I look forward to more posts. So touching!! :)

I hope you have a wonderful Thanksgiving- I will be thinking of you both.

Jennifer Bruno Conde said...

Hi Tasha!

I'm certainly glad Amanda doesn't hate her CI! Smile! Yours was the first blog we ever read and hung on your every written word with respect to how your surgery and activation went.

I'm intrigued with a recent post you had about your desire to learn cued speech. I hope you find what you are looking for whenever you identify exactly what it is in your life that's not working.

Happy Thanksgiving to you, Tasha! We'll be thinking about you too!

Jennifer and Amanda :-)

Katie-Louise's Cochlear Implant Blog said...

Great to see a positive post, I can't believe how quick it has gone for amanda. I'm due for an early 9 months mapping and it's going great.

Keep us updated!

Shari said...

Oh, I am so glad to hear this. :) Sorry, I'm so behind on blogging. Too much time on FB. Hee.

That's so cool that Amanda can hear the mancala rocks (love that game, btw). I'm so happy that she is picking up sounds and recognizing them more and more. This is so inspiring and exciting.

Go, Amanda, go!!