She was rapt throughout a 1.5 hour  long play, sitting at the very back of the large theater, with a live orchestra in the pit in front of us.  And yet she attended to the dialogue, looking around for new voices as they piped up, clapping as each song finished, and standing in her seat to join in when the dancing got wild.  My favorite moments were when Li-Li felt the need to join in the chorus of kids who had come out into the audience and were very near our seats (conveniently close to the back exits for easy getaway in case of toddler or mama meltdown), she was standing up on the seat and chanting key lyrics. At one point, they were singing “Sold, Sold” while Li-Li was calling out “Dog, Dog.” Hey, it sounded like “Dog” to me too, at first.

Li-Li then joined the director onstage after the show for a chat:

She looks innocent, but last week, while safely in her carseat, she bit her ear mold off the processor, chewed and swallowed. John nearly swerved off the road to stop the horror, but too late. She smugly pointed down her throat when his search proved fruitless (or ear mold-less).

After much discussion about what an ear mold is, her doctor’s office said that this is small potatoes in the world of swallowed objects and all systems are go, although I’ve not verified categorically that the ear mold has moved on. I take that on faith.

I’ve failed a critical mom test, haven’t I?

Update: on The Daily Show, Kristen Schaal says that the media treats Hillary Clinton like a Hooter’s waitress, so she strips to the Indigo Girls to end the sexism. Take that!

Anna, Li-Li, and Shui Li fall off the hammock — as planned!

John, Anna, Li-Li, and Shui Li (and Grendel) on the bridal path outside our back gate

Li-Li’s playhouse is in disrepair: next weekend!

Li-Li has never seen anyone hold a hen quite the way Shui does it

Anna and Shui at Li-Li’s playhouse

See all photos from Anna and Shui Li’s visit.

We had a full schedule and still there was no nap to be had!

• Li-Li and I met with Dr. Terrell Clark to discuss going bilateral
• We met our wonderful new audiologist, Jennifer Harris (We’ll miss Jill, but Jennifer is GREAT and came from working at Li-Li’s school some years ago: TLC! And I can’t believe I forgot to take photos)
• Jennifer conducted booth testing without processor and then with hearing aid in left (unimplanted) ear
• Jennifer checked our equipment and found which of our 3 cords is the horrible faulty babyworn cable that trashed two lovely processors in a month and contacted Cochlear Americas for replacement of the cable and a lost magnet
• Li-Li received a brand new mapping:
  1. Everyday listening program with ADRO: for home, classrooms, music
     makes seamless adjustments as the sounds around her change. The individual channels representing quiet sounds (like a soft violin) are turned up, while loud sounds (like a car horn) are softened, so Li-Li can enjoy a comfortable listening level in any situation.
  2. Noise program (with AutoSensitivity): for noisy environments, crowds, restaurants
     Microphone sensitivity is automatically adjusted based on the “noise floor” of the surrounding environment. The noise floor is the level to which sound decreases during breaks in speech. This softens the background noise making it easier to participate in conversations in noisy environments.
  3. Everyday listening program with ADRO (same program as #1, just easy to cycle to)
  4. Quiet listening program with ADRO + Whisper: for bedtime stories, hiking outside, watching TV
     Whisper boosts softer sounds, such as crickets chirping or someone speaking in the distance that would otherwise be too quiet to distinguish—like a pair of binoculars zooming in on a small object, making it larger and easier to see. It brings the softer sound “closer” so that Li-Li can hear it better, while other louder sounds remain moderated as with her everyday listening program.

Some really interesting results (although I have to ask for the results and the new audiogram for specifics): her implanted right ear has retained much of its residual hearing and remained close to her levels tested last August — a huge surprise to us as we’d heard she would likely lose this as a result of the surgery itself or the body’s defensive reaction (ossifying bone) shortly after! And even more surprising: hearing in her unimplanted left ear has deteriorated significantly in a year, so she likely no longer hears jet engines without a hearing aid.

More on our very complicated and difficult bilateral discussion/decision later, but I think we’re OK to go according to the CI team and planning for surgery this summer!

May 16th, 2008: Dad and Schatzi hanging out in Aiken, South Carolina
Dad is feeling almost recreational 1 week after his 3rd round of chemotherapy, but seems intent on sticking to powerful yet less organic drugs than those I’ve suggested (5 more courses of chemo to go, every 3 weeks)

At the very start of the clip you can almost see Billy in tie and coat and his band with flipped up collars (and hair) in the distance over the top of what looks like my unusually large head, which is pretty much centered in the frame when I swing my many layers around to speak to the person to my right (this was pre-mullet, and yet so close…).

I don’t think the song itself was a rocking hit with our barely-teen aged crowd — we weren’t yet cynical or luxuriating in hormonally-driven depression.

www.youtube.com/watch?v=ZSrtaOYLYQM

“More” is her very favorite word: it means more eggs, more book, more music, more dancing with daddy, more throwing rocks in the pond, more feeding the chickens from her hand, more of mama’s crazy driving, more of her grandparents spoiling her, more time with wonderful friends, and so on. And that’s what we want for Li-Li, too: we want her to have more access, to have more opportunities, and to always reach for more.

When I hear her little voice, clear as a bell, call out: “more cheese please” or “more tiger, rooaaar” when looking delightedly at a passerby in an orange and black striped shirt, or when Li-Li excitedly signs ‘man drive stroller’ upon seeing someone mowing a lawn with an unfamiliar piece of equipment, I silently run through a whole looong list of so many people I need to thank for these moments. In addition to all of the wonderful family and friends who give so much joy and support in many forms, there’s a whole list of amazing professionals we’ve come to know, who have devoted long hours to giving Li-Li more. People like Drs. Clark and Roberson, audiologists and CI team members like Jill, Stacey, and Sarah at Children’s Hospital, teachers, caregivers, and other professionals at TLC, both deaf and hearing, like Nancy V, Susan, Carol, Maureen, Mary Jane, Nancy, Jennifer, Karen, Kelly, and Anna, SLPs like Christine at TLC and Laurie at Enable (EI), our deaf advocate Rosalee at the Mass Commission for the Deaf & HOH, and oh gosh, so many more.

But a common element in this list is that these people are able to work with Li-Li because of our amazing healthcare insurance and social services. So, today, while ‘blogging against disablism’ (shouldn’t that actually be ‘blogging against ablism’ or ‘blogging for disablism’?), I want to point out an amazing article posted just last week by Michael Bérubé, Disability and Democracy, and mention how critical our political choices are to the lives of our children, to what opportunities they have: Li-Li would not be speaking nor signing as beautifully as she does today without healthcare, social services, disability services.

I struggle with terminology all the time: Li-Li is profoundly deaf, her cochlear implant provides some hearing ability when on (although only when it’s working, Cochlear Americas: please fix that processor!). To paraphrase I. Jordan King, we know she can do everything a hearing person can do but hear. And we’re working on that ‘but hear’ part. So, does Li-Li have a ‘disability’ or a ‘difference’? My dear friend Brooke says it’s something very special: a ‘diffability.’ I like that! But on a practical level, what are the right words and terms that conjure up the health care, the surgical care, the bionic equipment, the education, the audiologists, the early intervention services, the speech language pathologists, the sign language instructors, the CART services, the interpreters… . I know I’m being greedy, but we want much more for Li-Li than we can provide: more expertise, more technology, more services, more education, more language, more opportunities, more ability. So, which term gives Li-Li more? And which politician provides more for children with disabilities or differences?