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!
  

14 comments:

Charlotte said...

Whoo hoo Go Amanda, Sounds like she's doing so well. Hats off to everyone who were there for Amanda.

C xx

Jennifer Bruno Conde said...

Thanks, Charlotte!

Just hope over time she gets the ability back to hear some of the things she previously heard.

Thanks for your continuing support!

I hope you are off hearing lots of animal sounds at the zoo!

Jennifer :-)

Jen and Nixon said...

HI there! I just found your blog through other places, can't remember which one since I've been through so many so far! LOL!

My name si Jen and in the future, looking at the possibility of a CI. My vision and hearing is deteriorating proessively. I fit the criteria except the speech discrimination since it is still somewhat good for now. (not surprising since I have JAWS at fast speaking speed; but speakers almost at top volume; although, sometimes I have my braille display connected).

I just wanted to say hi and I look forward to watching Amanda's progress with a CI. BTW: I am in Canada and Nixon is actually my yellow lab guide dog.

Jennifer Bruno Conde said...

Hi Jen,

Glad you stopped by! :-)

Good luck with your decision to possibly get a CI in the future.

Thank you for following Amanda's CI journey. Perhaps you'd consider starting your own blog. The people I've met in cyberspace have been a tremendous source of support!

Amanda started her own blog last week.

I see you have posted on Jennifer (Sweetpea's website, http://stereophonicbionic.blogspot.com/
Us Jennifers have to stick together. Jen has been a wonderful support with Amanda.

Another wonderful blog and person to get to know would be Shari. Her site is:
http://literallyblindsided.blogspot.com/
She has Usher Syndrome.

One more source for you would be Hearing Journey Forum: http://www.hearingjourney.com/forum/

The people there are wonderful and very helpful with answering questions or providing support.

Each of the links I gave you above are on my bloglist.

Good luck, Jen (and Nixon) and keep in touch!

Jennifer :-)

Jen and Nixon said...

I actually do blog, but I do mine via Livejournal. I already have seen Shari's sight as well.

Mine is from congenital rubella syndrome, so I get confused a lot as though I have Ushers, which isn't the case.

Thanks for the welcome!

Jen

Janet said...

Amanda's doing great! I'm sure she will get back the sounds that decided to take a break. It just takes time. I get impatient for my new CI to sound as good as the old one, even though I know better. :-)

Jennifer Bruno Conde said...

Hi Jen and Nixon,

I just left a comment on your blog. With a little sleuthing, I found it. You look beautiful in the lovely blue dress. How did your sister's wedding go?

Hi Janet,

I think it is a volume issue. She actually did hear Goldy's tags tonight with very intense listening and her ear VERY close to them. I really don't think she'll last two months at this volume.

We will be calling her audiologist Monday.

Jennifer :-)

Charlotte said...

Hi Jennifer, No i didn't hear much of the animals just rain! it was pelting down...

I *think* i heard the Peuguins sqwaking but not sure as the kids were shouting aswell!!!

We all had wonderful wet day!

Amanda will hear whatever is missing back soon. It happened to me once and got worried but I found the right program (I have 4). I am due to go back on weds or thurs to have the volume sorted out as it was on max volume.

C x

suddensilence said...

Hi Jennifer! It's so weird how the different programs sound. Do you know if this new map is a different program for Amanda -- maybe that's why she lost certain sounds.

At my most recent mapping they gave me HiRes-S and HiRes-P to switch between. HiRes-S is very, very quiet compared to HiRes-P and I have to turn the volume up much higher, plus I feel like I'm not hearing many of the things I hear with HiRes-P. I was just wondering if this might be the case with Amanda too.

Sending lots of good thoughts her way -- I hope those sounds come back for her!! But GREAT news on the audiogram...yay!

~ Wendi

Jennifer Bruno Conde said...

Charlotte,

Penguins and kids--yeah, pretty much sound the same whether we're hearing or deaf. :-)

I know you have a Cochlear Corporation CI with 4 programs. Glad you were able to find the right one to give you back what was missing. Amanda has Advanced Bionics and has 3 programs.....

which brings me to Wendi's question...

Hi Wendi,

Each of Amanda's 3 programs are exactly the same. The only difference is P1 is Aux Mic only. P2 is Internal Mic only. P3 is 50/50. Not sure exactly how her program changed, but obviously something was very different!

She maxed out really fast (that day) on volume and is barely making out when she hears something other than Ss and Sh.

We called the audiologist to ask for more volume and she's going to do a whole mapping Friday. Oh boy! LA! Land of towed vans and flat tires!

I think what we'll do before we leave Fran's office will be to have Amanda try to hear the Ling sounds, clapping and Goldy's dog tags (following Janet's suggestion on Hearing Journey to take her along) or keys if we can't sneak Goldy into the building. AND to make sure Amanda can still hear her own voice.

From the blogs and comments I've been reading, it sounds like starting out loud isn't such a bad thing...especially when the brain is adapting so quickly!

Jennifer

Shari/"Whiger" said...

You go, Amanda.

Everyone, the audie and the AB audie, too, are really working hard to help her get a good map.

For someone who has never heard sound, I'm so excited she has heard somethings. Maybe the dog tag sounds will come back. She can hear her own voice. That's really great.

Keep it up, Amanda. Smile.

Charlotte said...

Good luck with another appt... Hope you all get bottom of this. I am having another unscheduled appt tomorrow (thurs) as i am maxed out already!

My Audi tells me to go outside etc for half an hour or go to my rehab appt. When my rehab is finished and if i am still not happy with the map i could still go back in and have it done again. I am wondering if you do this, it probably save you from driving back and forwards. Just a thought.

C ;-)

Laura's medical journey said...

She sounds like shes enjoying exploring her new senses!! :) Hope it continues and doing well!

by the way ace funny pics! :D

*Tasha* said...

"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."

This is sooo good though! It means her brain is VERY QUICKLY adapting to the new input.

I'm sorry I haven't been able to keep updated! I will now! I just went back and read everything. I'm very glad Amanda is sticking to it. I was afraid it might overwhelm her and she'd stop wearing it like some implanted deaf people do.

Very wonderful! :)