Tuesday, September 23, 2008

Jennifer's son, Joel visits!

My son, Joel, who is in the Navy and stationed in Hawaii, came for a very brief visit.   Here he is with me, and then with Amanda and getting a kiss from Goldy.

The BIRDS and the bees-Captioned Video Clip

Our visit to the Aquarium of the Pacific in Long Beach, California was unusual and eventful when we entered the Lorakeet Forest to feed nectar to these active and colorful birds.

Monday, September 22, 2008

Amanda's First Musical Keyboarding Experience-Captioned Video Clip

Okay everyone!  This is it!  A profoundly deaf 14 year old who just 38 days ago (prior to her cochlear implant activation) couldn't hear ANYTHING, and never had, is calling some of the sounds coming from her new electronic keyboard, "weird."

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 
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!


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!