Tuesday, July 29, 2008

Disneyland/DCA 15 days before Amanda's activation

Here we are at Disneyland and Disney's California Adventure 15 days before Amanda's CI activation date!  FUN DAY!

Here is Amanda with her new pink iPod!

Toy Story Midway Mania at Disney's California Adventure-FUN New Ride and one that Joseph could go on!

Amanda is sitting in the first "A" in CALIFORNIA  just outside the entrance to DCA. You can see Disneyland behind her.

Here we are at the Mickey Floral just inside of Disneyland. 

Friday, July 25, 2008

Amanda gets a Birthday iPod

For Amanda's 14th Birthday, she wanted nothing more than a pink iPod.  Once her CI is activated 8/12/08 we'll know a whole lot more than we do now about what kind of music she will like since she's never heard anything.

Here are some photos of our trip today to the 
Apple Store.....and Cheesecake Factory.
     Amanda offers a drink                  By a giant pink iPod          
       of water to Joseph                                                        

Some technical  discussion?  

   Gonzálo & Joseph ready                Jennifer & Amanda        
             for dessert                         posing before digging in                              


                Outside                      Heading home to figure  out 
       Cheesecake  Factory             how to use her new iPod 

Happy 14th Birthday, Amanda!

                    Happy 14tBirthday Amanda!!!!!!!!!!!!!!  

I took these while Amanda was waiting for a doctor's appointment the day before her birthday. I thought the sillouhette effect of Amanda and her dad was captivating.  Wouldn't you agree?

And Joseph still doesn't have a braided beard like Amanda was discussing while waiting to be called for her CI surgery.  (See Tuesday, July 15, 2008  Amanda's Nervous Energy-Surgery Day.)

Tuesday, July 22, 2008

Amanda's pre-op video clip with Dr. DiTirro

Here is a 1 min. and 44 sec. video clip from Amanda's pre-op appointment July 9, 2008. 

Faithful readers may remember that this was the day we spent 3 1/2 hours finalizing everything for Amanda's CI surgery to discover that our van had been towed.  (See post dated Thursday, July 10, 2008 Amanda's Surgery is Scheduled!)

This clip was taken right before I got downright silly insisting that I was getting a cochlear implant and not Amanda so that I would get the monkey. (See post dated Sunday, July 13, 2008 A Little "Monkey" Business.)  

I post this clip to show our FABULOUS no hair cutting, dissolvable stitch using, monkey tracking downing ENT surgeon, Dr. Frederic DiTirro.  Everyone would be fortunate to have a surgeon such as Dr. DiTirro!

We appreciate Dr. DiTirro more than we can put into words.  But if we had to narrow it down to several words, they would have to include SENSITIVITY, SINCERITY and COMPASSION.   

Enjoy the video clip.

Saturday, July 19, 2008

Amanda NOT swimming

Here is what we did on Friday, Day 4 post surgery. Amanda and I took turns videotaping in the pool while she kept her ear dry.

We obviously were conserving our words because we all have a VERY limited vocabulary!  The longest sentence uttered was 7 words...and that was by Gonzálo.  

I tallied up how many times we said these high frequency words & phrases in this short video clip:

Good girl-5

There was also a lot a giggling and laughing going on!

Thursday, July 17, 2008

Amanda - Day 3 Post Op

Hi All!

Three days post surgery...


*  Has washed her hair
*  Been able to wear her glasses
*  Went on a series of outings today

Dentist (I had a cleaning appt.) 
Library (to return books and check out new ones) 
Friend's house (so her dad could help give medicine to a cat) 
Lunch (treated by friend after assisting with cat) 
Speech clinic (hour long session) 

For the first time in her life...she heard something!  Yes, no doubt tinnitus, but it's a first for hearing anything. Having never heard anything, it's obviously difficult for her to describe. Some of you have mentioned ringing, roaring elephants, rhythmic heart beat, washing machines, etc. 

Amanda has nothing to compare with and it's not like after she is activated when we will be able to say, "That was the microwave dinging," or "That was a helicopter." 

But we have no idea what she's hearing, so we can't share our infinite wisdom. 
 We've told her that whatever it is she's hearing is common and most of the time it goes away. 

Thoughts on tinnitus? 

Wednesday, July 16, 2008

Amanda's Monkey, HR talks to Amanda's Dad, Gonzálo

Here's an impromptu conversation between Amanda's monkey, HR and Amanda's dad, Gonzálo the day after Amanda's CI surgery.  My voicing was a little off as it is challenging to voice for a signing monkey whose fingers are fused together.

Tuesday, July 15, 2008

Amanda's first day after Cochlear Implant Surgery

Amanda had a great first day after her CI surgery!  Since she'll be 14 this month, usually the first thing out of her hands is, "My birthday is next week!"  However, this morning the first thing was, "It's almost August!"  Her activation is August 12th and none of us can wait!

She let us take these photos although she did not want us to take any of the removal of the pressure bandage.  She named her monkey, which she deemed a girl, HR, as these initials are on her shirt. This comes from HiResolution Bionic Ear System from Advanced Bionics.  Each child receiving an Advanced Bionics HiRes cochlear implant receives a monkey with a removable velcro cochlear implant processor, coil and magnet.  (See a video clip in A Little "Monkey" Business post dated Sunday, July 13, 2008.)

Amanda with HR  August 12th they will have matching CI's when Amanda is activated and receives her behind the ear (BTE) processor.  This will be the start of the process to see just how much benefit a motivated prelingual deaf 14 year old with a bilateral profound hearing loss will receive from a cochlear implant, and how she will incorporate sound into her life.

Amanda's incision  Her surgeon did a fabulous job with everything and really took his time to make sure everything went just right, which is why the procedure took 4 1/2 hours.  He cut NO HAIR and used dissolvable stitches on her incisions as well as on two ear tags he removed.

Goldy is enjoying the afternoon floating around on a raft.  Sadly, Amanda can't swim for 10 days, so she was watching from the sidelines but didn't complain at all.

Gonzálo and Jennifer are posing for a photo taken by Amanda.  

Her doctor wanted us to call him today to let him know how she's doing.  Together we made up a rough list of what we'd say to him:
How Amanda is doing: Surgeon's Response:

She has some pain and is taking Tylenol regularly  
Normal-will ease up
Her throat is a little sore from the breathing tube  
Normal-will ease up
Her ear is numb  
Common-may take a few months
She is a bit dizzy at times  
Normal-will ease up
Thank the doctor for removing her ear tags  
It was his pleasure
The doctor is a nice man  
Genuinely touched

We can't say enough great things about her surgeon.  He gave us his cell phone number and said we can call him any time!  We don't have anything to compare with regarding ENT surgeons, but I'm guessing this isn't common.

Here's hoping Amanda will continue to do well with the recovery process this week. She gets to wash her hair the day after tomorrow!! 

Amanda's Nervous Energy-Surgery Day

Here is a quickie video clip of some of the things Amanda did to get rid of nervous energy while we were checking her in at 6:00 AM for her CI surgery yesterday.  

Keep in mind we got up at 2:15 AM.  Where did this creativity and silliness come from at such an early hour?

Notice the button shirt and pull up shorts?  She's actually wearing my clothes so they are roomy. And the button down shirt is so she didn't have to pull anything over her bandaged head after surgery.  Worked out pretty well!

Handy tips I got from Advanced Bionics Hearing Journey Forum. http://www.hearingjourney.com

Monday, July 14, 2008

Amanda's surgery was today!

Amanda has a cochlear implant!
Amanda and Joseph arriving at the hospital

Amanda with her bionic monkey prior to surgery
  Her dad kissing her as she was leaving for the OR

The surgery is behind us and went off smoothly....overall.   Amanda did really well and is happy to be home.  In fact I just checked on her again and she is sleeping peacefully.  She has an adjustable bed and she's raised the head as we've heard that it can help reduce swelling and be more comfortable.  

That, and the fact that we left home about 3:45 AM and returned home about 4:45 PM, she was under anaesthesia for 4 1/2 hours and finally got the operation she's been wanting since she was 10...could all possibly contribute to the fact that she's exhausted! 

Amanda's only question for her surgeon before the operation was related to the location of her monkey!  Being a sweetheart and humanitarian doctor that he is, he did the only thing he could. He went searching for the whereabouts of her monkey.  Three members of her surgical team delivered it to her about 5 minutes before she left for the operating room.  She didn't have quite the outwardly joyous response they seemed to be hoping for as she'd just been poked three times by two nurses...and they had finally found a decent vein. 

 Yes, that's me in a jumpsuit!  Wonder why? 
 Me with Amanda's monkey.  I knew I'd get to hang with her monkey one way or another!
So why am I in a jumpsuit, you ask?  Interesting question!  When they realized Amanda was totally deaf and couldn't do ANY lipreading staring at surgical masks in the OR, the part of the surgical team who came to get her decided it would be a good idea if I went with her and interpreted.  

So last minute, I threw on a jumpsuit and tiny surgical booties over my size 10 flip flops, and headed over to the OR with them.  Just before we hit the OR door, someone suggested what a good picture it would make.  Since I still had my camera in my pocket, I unzipped the jumpsuit to retrieve the camera and posed for this picture.  Amanda couldn't contain herself and burst out laughing.

So I stayed for the 5 minutes it took to have her scoot from the gurney to the operating table, get her positioned, explain what they were doing and see her drift off to la la land.  No telling how much Amanda understood since:

1)   She was looking pretty nervous with 8 or 9 people fussing around her
2)  I had a mask over my face and so much of ASL is conveyed via facial expression
3)  Here was her stepmother in the OR wearing a white jumpsuit, hair net and mask trying to
      not get in the way of people getting her situated
4)  AND PROBABLY MOST IMPORTANT she was undoubtedly concerned about me
      confiscating her monkey (See Previous Blog:  A Little "Monkey" Business)

When we were called to sit with her in recovery, she opened up her eyes long enough to say, "What happened to the white clothes you were just wearing?"  Of course to her, 4 1/2 hours passed like 4 1/2 seconds so she must have thought I did a magic trick getting that jumpsuit off so quickly.

To us....the 4 1/2 hours seemed like 4 1/2 days.  Only thing that made it bearable for me was getting to spend some quality time with Amanda's bionic monkey!

Sunday, July 13, 2008

A Little "Monkey" Business-Filmed July 9, 2007

Here is a video clip  we took at Amanda's pre-op appointment.   In it,  I insist I am getting the CI instead of Amanda because I want the monkey that comes with it.  For some reason....she doesn't believe me!  I don't even think she's planning to share her monkey!

We had to keep ourselves entertained for the 3 1/2 hours of the pre-op appt.   Little did we know we would have more "excitement" at 5:30 PM when we realized our van had been towed!

Amanda's CI Surgery is tomorrow!

Thank you everyone for your kind words, your positive support and your sharing in the excitement of Amanda's implant surgery tomorrow!

We all go in waves of exhilaration, restlessness, disbelief and wonder at tomorrow's surgery and attempting to visualize it's significance and how Amanda will incorporate sound into her life.

This is how we spent our day..... relaxing and preparing to go to bed early so we can be refreshed and ready to leave the house about 4:00 AM to drive back to"glorious" LA!

Amanda with Goldy,  Joseph,  Gonzálo with Amanda,  Jennifer

Amanda July 6, 2008-Part 10 of 10 Captioned

Here is Part 10 of 10 video clips of Amanda 

Might as well call this the Goldy Video clip.  Watch this last video in the series and you'll know why!

We've had this little Flip Mino Videocamera a week now and I have learned SO MUCH!  I can now videotape, transfer to my MacBook Pro into iPhoto, edit in iMovie, upload to video.google.com, download to overstream.net for captioning and transfer to my blog at blogger.com.  I have just finished captioning all 10 video clips.

Nothing on this video series was rehearsed or planned.  That should be obvious!  I had sat down on the swing with the camera to learn how to use it and Amanda joined me for about 35 minutes and we just filmed away.

I wanted to get some footage before her cochlear implant surgery which was 8 days away....scheduled for July 14, 2008.  It is now July 13, 2008 so tomorrow is the big day!

Saturday, July 12, 2008

Amanda July 6, 2008-Part 9 of 10 Captioned

Here is Part 9 of 10 parts of Amanda's Video

Amanda discusses some of her reasons for wanting a
cochlear implant and her reaction when an ENT finally said

Amanda July 6, 2008-Part 8 of 10 Captioned

Here is Part 8 of 10 parts of Amanda's Video

Amanda discusses her ferocious watchdog, Goldy and how one time someone broke in and stole a bunch of her things during fumigation.

Amanda July 6, 2008-Part 7 of 10 Captioned

Here is Part 7 of 10 parts of Amanda's Video

Amanda discusses being born deaf,  the only deaf person in her family, her mom's illness, her brothers' Muscular Dystrophy, the day she got Goldy, Goldy's broken leg, Goldy swimming in the pool.

Helpful hint:  None of this is scripted.  I was voicing for Amanda when she went into this whole ASL story about certain parts of her life.  We had bought the video camera earlier that day, so I was trying to learn how to use it, record her, look at her through the lens and voice for her.  I didn't even think about what I was going to do with the video at that point....or captioning.

When I went to caption it and watched each frame MULTIPLE times....I realized I had misspoken for her more than once.  I had to ask her to come watch the video clip in one part so I could caption it appropriately.  I realized it would be best to mute the sound and just read the captions during the middle segment where her hands are flying a mile a minute and you'll get a more accurate translation.

For clarification purposes:  When Goldy broke her leg, I did not pick her up and carry her to the pool!  When Amanda and I conferred, she was referring to after Goldy came home from the vet, which we took her to promptly, and had her back leg in a cast. Sometime during the time she was in a cast I did indeed pick her up and carry her to the pool so she could be near us since she was just a puppy at the time.

Amanda mentioned her brother, Chris who died at age 14 two years ago.  Amanda's mom died when Amanda was 2 months old and still in the hospital.  She was 1 lb 10 oz when she was born and stayed in the NICU 4 months.

Amanda July 6, 2008-Part 6 of 10 Captioned

Here is Part 6 of 10 parts of Amanda's Video

Amanda's Earrings

Friday, July 11, 2008

Amanda July 6, 2008-Part 5 of 10 Captioned

Here is Part 5 of 10 Parts of Amanda's Video (Captioned)

Amanda interviews Jennifer

Amanda July 6, 2008-Part 4 of 10 Captioned

Here is Part 4 of 10 Parts of  Amanda's Video-Captioned
(Days of the week)

"Saturday" will never be the same!  But she got it....
even if she had to end with, 
  "Happy now?!"

                               And I was.

Amanda July 6, 2008-Part 3 of 10 Captioned

Here is Part 3 of Amanda's Video-Captioned
Amanda recites the alphabet.  Notice the hesitation when she gets to "W" (double you),but it comes out the best she's said it without any visual cues.  I didn't mouth it or use Visual Phonics.  Overall she has really improved over the last month saying the letter names!

Thursday, July 10, 2008

Amanda July 6, 2008-Part 2 of 10 Captioned

Here is Part 2 of 10 of Amanda's Video

Family, Friends and Videophones

This video clip was taped 8 days before her CI surgery.  In it, while her dog, Goldy continually licks her face, Amanda verbally counts to 10 and pronounces names of  family and friends.  She also goes into an ASL account of  how she taught her friend, Chris sign language and how they both got VPs.

For those who may not know, a VP is a Videophone provided to deaf and hard of hearing people who primarily use sign language. Ours is from Sorenson Video Relay Service (VRS) and we are very happy with it.  

Amanda can communicate directly via American Sign Language (ASL) with her deaf friends by calling from her VP to their direct VP phone number.  She can also communicate with her hearing relatives through use of the VRS.  She can call their number from her VRS and a relay operator automatically comes on and conveys by voice the message Amanda is signing to the hearing relative.  The hearing relative speaks the response and the VRS operator signs to Amanda.

If the hearing relative wishes to call Amanda, there is is separate phone number they call that is Amanda's direct number.  It automatically connects to a VRS operator who speaks to the hearing relative and Amanda's VP lights up as the VRS operator makes the connection.

Amanda's Surgery time is Scheduled/Trouble on Sunset Blvd.)

Amanda had her pre-op today, July 9th, 2008.  We have a surgery time for July 14, 2008-four days from now!  We are to arrive at 5:45 AM and surgery is scheduled to start at 7:30.  It was QUITE a day!  But not for reasons you might expect.

Actually, the pre-op stuff was a breeze....long but relatively uneventful.  It was the after part that got "interesting."  

Amanda's appt. was at 1:45 PM in Los Angeles, CA, which is just over an hour from home, without traffic.  We met with her surgeon, Amanda received a pneumococcal polysaccharide vaccine (PPV), we conferred with an anesthesiologist, met with a health educator and then the last step was that Amanda was the final patient to complete her pre-admitting process.   We left the bldg at 5:30 PM, walked out to our van, which had been parked on the street.... and.....it.....was....gone!

After a series of frantic phone calls we tracked it down and were relieved to find it had ONLY been towed--and not stolen.  Apparently instead of being parking spots, as they are MOST of the time, between the hours of 4-7 PM Sunset Blvd gains an extra lane....and we were blocking it.  Hence the tow.  No blame placing...but someone who parked the car hadn't checked the signs.

Relieved as we were to only have been towed, it posed a major dilema!  Joseph, Amanda's brother has Duchenne Muscular Dystrophy and can't just hop in a taxi to get to the tow place. We explained the situation to tow guy on the phone and he suggested one of us coming, getting the van and going back for the others.  Since tow guy said it was about two miles we started walking.  We had about and hour and a half to get there because they closed at 7:00 PM.  Turned out tow guy grossly miscalculated.  It turned out WAY too far to walk.   

We realized it would be impossible when we attempted to cross the street at a major intersection and there was no curb cut out for Joseph to cross so we went way out of our way to cross.  We saw some UPS people and asked which way was such-and-such a street.  They couldn't contain themselves when they realized we were attempting to go on foot/wheels about 6 miles from where we were. 

Since we didn't have much choice, we continued on.  Oh, and by the way we had been traveling in the wrong direction.  One of multiple people we encountered and asked for directions offered to take one of us to get the van.  She was a real lifesaver!  Kam.  Great gal!

Kam didn't feel comfortable with my husband, Gonzálo being the chosen one, so I went.  In the confusion and haste, I didn't consider taking Gonzálo's keys with me. MINE were locked safely in the van, in my purse, under the front seat, at the tow place.

Kam and I navigated our way through trecherous LA in rush hour and made it there just before closing time at 7:00.  I thanked her profusely and she went on her way. After tow guy slim jimmed the door so I could get my purse and registration, he realized the van wasn't registered in my name, but Joseph's.  Didn't matter that the insurance card bore my name and that we had the same address.

Tow guy wanted to know why Joseph didn't show up to reclaim his van.  Must have been a different tow guy than the one I spoke with on the phone.  "Joseph is stranded in a parking lot because you guys towed his van," I explained.  "Plus he can't drive anyway because he's in a wheel chair and has no muscle strength."

"Well, we can't release it to you.  Joseph has to sign for it."

It went from bad to ridiculous.  "Is he near a fax machine?" tow guy asked.  "Actually he's not," I responded with as much restraint as I could.  "If he could fax his ID, that would help," tow guy offered.

We ended up having Gonzálo take a picture of Joseph holding his ID and another close up of his ID and send it from his Sidekick to mine so I could show it to tow guy.

So, a $152 tow place fee, plus a City of Los Angeles parking violation fine (which we haven't deciphered as there were two amounts on it and we aren't sure if we get to pick the one we like best or have to add them together) and two extra hours of vehicle retrieving...has made for quite a day!

Now if we can just keep Amanda healthy for four more days we get to go back to lovely Los Angeles for surgery!

Amanda July 6, 2008-Part 1 of 10 Captioned

Here is Part 1 of 10 video clips of 13 year old Amanda, who is about to receive a cochlear implant 8 days from this interview. 

Tuesday, July 8, 2008

Amanda Illustrating Her List/Jennifer's Poem

The day before Amanda had yet another appointment to plead her case as to why she'd be a  worthy candidate for a cochlear implant, (which incidentally, at that appointment, she was turned down...again) she made up a list of what she wanted to hear.   

She made a separate list of who she'd like to be able to talk with, even if just to be able to chat briefly with doctors, clerks at Best Buy and to tell people at Disneyland there are 4 in our group.

Here is a photo of her illustrating each item on the list.  
While she was formulating her list,  typing it up and illustrating it,  I wrote this poem:

Amanda wants an implant.
She's wanted one for years.
She has a real good reason....
....Because NOTHING'S what she hears.

She'd love to hear her dog bark,
Or scratching at the door.
Her dog tags jingle-jangling...
All of this and MORE!

This teenager's amazing!
The words she can produce!
Even some in Spanish...
Like loca, sí and luz.

Imagine how much clearer
Her communication skills would be,
If she received an implant.
I'm sure you would agree!

Of course there are no guarantees
But we can't know 'til we try.
Can't wait for activation.
There won't be a dry eye.

Jennifer Bruno Conde, Amanda's Stepmother
April 6, 2008