Wednesday, August 13, 2008

Amanda's Activation Details

It's 10:30 AM as I start this blog entry...and 14 year old Amanda is still sleeping!! That is very unusual for her.  But then again, she had the most unusual day yesterday!

After never ever hearing, the cochlear implant which she received a month ago was activated yesterday afternoon.  Last night I posted photos from the activation and am currently working on editing and captioning video clips from yesterday.  

Meanwhile, here are some random, non-technical details of yesterday's events.

Amanda's activation was "interesting."   She wasn't so sure at first what the heck she was hearing or feeling, except with the first and subsequent sounds there was definite twitching in her right eye (the CI side).  

Her audiologist, Fran, set all her programs low,  but any time she detected any sound at all, there would be that twitch.

Fran consulted with Amanda's surgeon, Dr. DiTirro who triple-checked to make sure no facial nerves had been affected. The doc reconfirmed there had been full insertion and everything looked good. He told us that if the twitching didn't stop over time, which can happen as the auditory nerve and brain adjust, several of the electrodes could be deactivated. So we'll see. 

Also, turns out that her hair is really thick. So we may need to shave the area for the headpiece to thin it out a little.

Bottom line after one day is, she seems to like it!  Actually I asked her directly and she gave me a resounding "YES! She's really liking her iPod for more than looking at pictures and playing games now. While still at the audiologist's office we hooked up the direct connect with the cables and she listened to music almost all the way home.

First thing she did when we got home was to run to see if she could hear Goldy's dog tags jingling. She couldn't, even with turning up her processor to Program 3, full volume. Maybe with the next mapping. 

She had fun looking through the box of goodies that came with her AB Harmony CI and tried all the earhooks. 

Next, she went into her bedroom and turned on the TV. What was unusual about that was that this time she turned UP the volume rather than just watch it with captions.  That was a first!  She was pleased that she could hear/feel something. 

Then my sister called to find out how things went. Amanda jumped at the chance to say hi to my sister and each one of her grandchildren and was thrilled that when they YELLED into the phone she could hear/feel something. She has said hello to familiar people before but NEVER had tried to hear them before! 

Then we went outside and sat on the grass to see if she could hear the cars passing by. She could...or should I say, her eye twitched when they got close. Some people passed by and Goldy did her thing and barked loudly at them in that high pitched annoying chihuahua way. Amanda was excited she could hear it. 

She wound down the evening by telling Joseph to turn down the TV as it was bothering her and after that she listened to CDs on a portable CD player with her right ear pressed up against the speaker as she fiddled with the volume on her processor and the CD player. 

Subsequently she asked how the dri-aid kit worked and what she was supposed to do with her processor while she slept. Since my friends on the Advanced Bionics Hearing Journey Forum have talked about it recently, I was educated and said it lived in the dri-aid kit overnight.  So she plunked the whole shebang; processor, t-mic and headpiece in the dri-aid kit, put the battery in the charger and began her bedtime routine. 

She had cleared a place on her dresser to put the battery charger Tuesday morning. Then when we got home she cleared a place on her shelf for the carrying case and dri-aid case.  The big box still sits on the kitchen table and the items will eventually be incorporated where it makes most sense to put them.

Now that Amanda's activated and registered with Advanced Bionics, we'll be able to go to their webstore to order assorted colorful covers and caps for her processor and head piece so she can change them when she wants.

It's almost 11:00 AM and still she sleeps!

Stay tuned for activation video clips!

Update:  At 11:15 she got up, put on her CI, put a TV dinner in the microwave and heard the door slam.  She said she wasn't there for the ding...but probably wouldn't have heard it at this point.

5 comments:

Amy said...

my audiologist told me something about if its causing eye to twitch the audiologist can change the pulse width i think thats the word im not sure, until it stop twitching. but thats with cochlear freedom though.
at first 3-5 weeks i dont remember the first 3 electrodes I couldnt hear sounds only felt the sound vibrations so the audiologist turned those off and after while she turned on i finally can hear beep so she slowly increasing those up until I'm used to it and feel comfortable.

Shari/"Whiger" said...

So glad she's doing well.

I think Abbie had something with the facial twitching, too. She did something to the program to "fix" it. Can't remember what it was.

Glad it's working. I imagine it's hard to identify and know what all the new sounds that she's never heard before.

I'm excited for her.

elizabeth said...

Oh my goodness I am just THRILLED for you all! What an exciting day... and this is just the first of MANY new sounds and experiences for Amanda. It sounds like she is doing so well. I am really impressed by her bravery and willingness to try new sounds and new hearing challenges right away! What a great attitude -- this will serve her well as she works to get the best results with her CI. The most important thing is to try it all, take it all in, and not be afraid for things to take time or even to "fail" occasionally. Nothing ventured, nothing gained.

Also, for the fashion-conscious... color caps are GREAT! Val (www.deafkidscanhear.blogspot.com) has a 4yo daughter with bilateral CIs and has some great posts about how to decorate processors -- very cute! With a little work, CIs can be the ultimate fashion accesory!

WAY TO GO, AMANDA!

Nancye said...

Wow! You have an awesome blog here. I was surprised to see a link to mine. Thanks! Amanda will do great! It takes time and the twitching, I'm told is common. My Audi is surprised I didn't have that being the power hog that I am. I've come a long ways in the 3 years that I've had my implants. I didn't document enough. I wanted to live, play and enjoy life... no time to write about each awesome moment as I re-entered the world of hearing. For some reason cell phones tend to work better with CI's than landlines. I'm sure it's the T ratings. I expected to hear a tad better than I did with hearing aids but, never expected to talk on a telephone. My TV is ancient and does not have good sound quality so, I don't do as well with it but, I do hear some of it. I'm sure that will change when I upgrade to a new high definition brand. I wish you and Amanda the best and thank you for the wonderful documentations of Amanda's journey. It gets better from here!

Much love,
Nancye

Jennifer Bruno Conde said...

Thanks, Amy...hopefully with Friday's mapping things will calm down. Thanks for sharing your experiences. It always helps to "hear" from those who've been there.

Shari, Yeah, Abbie and Sam both had twitching that seems to be under control. Can't wait to get there, too! So hard to know "what" and even "if" she's hearing anything. Time will tell.

Elizabeth, Thanks so much for your continued support through this whole process! Thanks for Val's website. I had actually been there before. Did you catch the video clip in May where her son, Gage called 911...twice and thought the police were going to take him to jail?! Priceless!

Nancy, how could I not have a link to your when you have such an AWESOME name for it!

We have had an interesting ride so far...and are definitely looking forward to it getting better from here!