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 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.
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.
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.
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
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!!
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
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!
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!
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!
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 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!
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 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!
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:
I am stepmother to 15 year-old Amanda. We met when I was her teacher when she 3. She was my student in a class of deaf preschoolers using ASL.
She had been wanting a cochlear implant since she was 10. She finally received a CI, July 14, 2008 at the age of 13 and was activated August 12, 2008 at the age of 14. She is currently hoping to become bilateral and we are working on that process.
Follow Amanda's CI Journey by reading, looking at photos and watching captioned video clips.
Thanks for stopping by!