Anna-Li prepping for surgery

Just before we rolled in, I tried really hard to braid the hair on her left side — the new implant side — as tightly as possible, hoping they wouldn’t shave the huge swath they took out last time. We chose the decadent bubble gum-scented anesthesia for her mask instead of strawberry or watermelon — who thought up scented anesthesia?

5 hours later: Anna-Li in Recovery

A complication occurred in surgery when the drill bit accidentally broke through the wall of her ear canal. The team was able to graft bone dust and fibrous tissue from the incision point to close the 3mm hole, which we’ll watch very carefully. Well, I won’t, as it’s inside her head, but THEY will be monitoring how well this heals. I don’t know how … but we’ll follow up later this week. Compared to last time around, so little swelling! No sad, tearful wake up this time: they used a local nerve block injected in her neck to stop any pain during those few hours after surgery, and she did so well!

She ate far too much frozen juice, and vomited it all up, which was so unpleasant for her, but they did a great job of managing her pain, and the discomfort of staying overnight: we had a private room this time and could watch Monsters Inc, Curious George, and Ice Age again and again and again … an all night slumber party with very little slumber until the 2am oxycodone kicked in! I might have liked a bit of that stuff to get me through my 66th viewing of Monsters Inc., but those nurses are so stingy with the drugs.

Anna-Li exploring Medicine

She’s gotten very good at checking vitals and putting bacitracin on her furry friends: both the stuffed ones and — poor sticky Grendel and Gryphon — the real live ones.

The incision

Gruesome, yet beautiful, healthy incision, although the dissolvable packing in the ear canal to manage the grafted area is resulting in a steady trickle of drainage that’s just nasty, but expected.

Less than 24 hours after surgery: Anna-Li is back at home!

A little bit of whining, managed by lots of love and hugs and Tylenol and antibiotic, but otherwise, back to normal!

Even without the good drugs, she's flying!

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?

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!

“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?

Do we schedule a second implant now and reap the near term benefits of localization and better hearing in classrooms?  Or wait 5, 7, or possibly 10 years until medical technology offers less invasive surgery, better approaches to stimulating or even regrowing the nerve?

We want Li-Li to receive every opportunity that we can make possible when it comes to her language development. She’s in ASL (American Sign Language) class at home and gets wonderful ASL immersion at school and our parent-infant program every day. She has a cochlear implant on the right side and takes auditory rehabilitation sessions four times a week both at school and with our early intervention program. And at home we reinforce both language models with a whole lot of interaction.

We are interested in proceeding with implant #2, given the truly amazing results we’ve seen with #1. There are benefits to having a second implant: among these are the ability to localize sound, better hearing in noisy environments. The drawbacks are considerable, though, and we’ve identified two big issues:

• Risks inherent in any surgery: Although we are confident that our surgical team does everything possible to mitigate those risks and has a spotless record, we are, of course, terrified of putting Li-Li through surgery yet again — it’s a gruesome thing to consider for a little one. We know that there are always risks with surgery, there’s no getting around that.
• Future Technology: There are so many new approaches to implant technology and surgical methods for implantation that are currently in research stages. Research being done at Vanderbilt University describes its minimally invasive surgical methods as the ‘LASIK of cochlear implants’. According to the Economist, researchers have developed a prototype “thin film” electrode that can stimulate the cochlea in up to 128 different places (beyond the 22 - 24 electrodes in current CIs), they are working on technology that penetrates the auditory nerve and stimulates the nerve fibers directly, and devices that secrete drugs to encourage nerve growth and even ones that stimulate nerves using an infra-red laser. Implant manufacturers are working on new electrode designs with high electrode counts, so we’ll soon see a new generation of implant technology.

I wonder if we should consider holding off on #2 to receive the next generation implant later.

With the first implant, the urgency was clear to us: as a profoundly deaf child in a hearing home (even with ASL as her primary language), to have the most effective shot at spoken language acquisition during that critical window of time between 0-3 when babies’ brains are most elastic and they develop communication, we needed to make it possible for her to hear as quickly as possible. But I’m not clear if there’s an urgency to getting a second implant.

I’m researching every study I can get my hands on to determine what we would be giving up (in terms of language development, auditory stimulation, ability to adapt to a second implant, etc.) by not getting the second implant for what may be years until the new approaches are available to the public. Current CI surgery is less certain to damage the cochlea than in years past, but I also want to know if there’s any risk that a second implant would damage parts of the cochlea that would otherwise be utilized by newer technology.

Li-Li has her 6 month evaluation coming up in a month — can medical technology keep up with us?

Sounds like a good idea

Mar 6th 2008 From The Economist print edition

Biomedical technology: As cochlear implants improve, people who use older versions of the technology could face a difficult choice

Michael Chorost

YOU could call it the upgrader’s dilemma. When it comes to buying a new mobile phone, computer or DVDplayer, should you buy the latest and greatest model now, since it offers new features that your old model lacks? Or should you wait for the next version of the technology that will be along next year and threatens to make today’s gear seem suddenly old-fashioned? Now imagine that upgrading the item in question requires you to have surgery. That, in a nutshell, is the predicament that people with cochlear implants may soon be in.

Read the full article.

Today was a big day at speech class, and sadly I missed it! But isn’t this the most wonderful email to get (from Christine, our amazing speech language pathologist at The Learning Center for the Deaf, who is working on Li-Li’s aural rehabilitation):

I had a very nice session with Li-Li today. She was very interactive and engaged with me. She imitated 5 out of 6 of the Ling sounds while playing with the toys (not “oo,” but she let me squeeze her little cheeks to help her round her lips, and she enjoyed squeezing mine while I modeled the “oo” sound). She even made a nice approximation of “s,” which sounded different from her “sh” sound!

Also, while putting the toys back in the box, she waited while I produced the sound for each of the toys before putting each one in the box, and she identified 5 out of 6 of them (for some reason she didn’t pick up the baby when I said “sh”??). While playing with other toys, she imitated “buh buh buh buh” for the sound of a boat, and she pointed to a picture of a boat when I made that sound. She also said “eh” in response to multiple spoken models for the word “egg.” She requested “more” by signing and saying “mo” several times during our session.

Another wonderful thing is that Li-Li was really babbling more today. She is now mixing different consonant sounds in one string of syllables (e.g., “bababa, dada, ba”). This is a great sign because it demonstrates that she is playing with her articulators and figuring out how to vary sounds within one “utterance,” which is more sophisticated than reduplicated babbling (i.e., the same syllable repeated such as “bababa”). These are typical progressions that babies go through on the way to learning to say meaningful words. Li-Li just has a head start because she is already using several meaningful words!

She said “uh-oh” several times today when objects fell on the floor. She also imitated the word “bubbles” by saing “buh buh.” Li-Li also demonstrated comprehension of some spoken utterances that were presented without sign support. For example, while looking at the strip of “ABC” pictures on the wall, she pointed to the duck when I said, “Where’s the duck? Quack quack quack.”

When it was time to leave I bombarded her with the word “sticker” before I produced the sign. I then said it many more times while signing “STICKER” when she was choosing her sticker. Finally, while walking back to daycare, I was carrying her so I couldn’t sign, and I said, “Where’s your sticker?” and she brought her hand around from behind her back to show me her sticker.

Thought you might like a little snapshot of our session (this is basically what my weekly notes consist of :) FYI). Enjoy your day, and I hope all goes well with the adoption finalization tomorrow.

Behavioral issue or job skill?  For a couple of weeks, we found that Li-Li would clam up her usually chatty self and selectively use ASL in her speech classes with Christine and Laurie. And then, with Anna, her ASL teacher, she would only use spoken words instead of her familiar signs! Anna would look at us baffled when Li-Li appeared to be non-responsive, and we’d shake our heads and sign back that Li-Li was, in fact, neighing and woofing and meowing loudly. Just not responding with her hands, as she knows well to do.

I think she clearly takes after my Oma, who would “translate” between the German-speaking and English-speaking family members by repeating to the English speaker in German what was originally said in German, but very loudly, rather than interpreting into English to the perplexed listener. And she would then turn to the German speaker and repeat in English what had been said in English, loudly and slowly. Think Garrett Morris’s role as interpreter for the hard of hearing on SNL’s Weekend Update. No matter how serious the conversation topic, we generally ended up miming what we wanted to say, and usually found ourselves on the floor, paralyzed by laughter. Phone conversations were very difficult, though.

We were language-challenged then and continue to be today. Try this with toddler-level ASL: “Li-Li, where’s the missing boiled egg? Deep inside the woofer (speaker) again or fed on the sly to the dog?”

But we do have a few new words this week (and it’s only Wednesday!) : “Milk”, “Baby,” “More.”

And I realized I’d not yet shared Li-Li’s new map. For cochlear implant recipients there’s a ‘map’ of possible programs (for Cochlear Inc.’s Nucleus Freedom model with the BTE or Behind The Ear processor, there are 4 programs): a changing “hearing fingerprint” that’s adjusted by the audiologist (thanks, in our case, to Jill!) as the brain rewires to the implant and begins to use this new sense of hearing, and as the person’s needs change. We control these programs throughout the day from the processor, someday Li-Li will be able to shift from one to another herself.

In her previous maps, Li-Li has had ever increasing levels of volume, but now she has two very cool new programs with specific functions for different environments (I’ll rip off Cochlear America’s site for the exact descriptions of what these do) :

1. SmartSound ADRO soft volume, for home, classrooms, music
   ADRO (Adaptive Dynamic Range Optimization) is designed to deliver maximum hearing comfort and clarity by making seamless adjustments as the sounds around you change. The individual channels representing quiet sounds (like a soft violin) are turned up, while loud sounds (like a car horn) are softened, so you can enjoy a comfortable listening level in any situation.
2. SmartSound ADRO loud volume
3. SmartSound Auto-sensitivity activated, for noisy environments, crowds, restaurants
   When using Auto-sensitivity, the 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. Auto-sensitivity takes effect in a matter of seconds and adjusts the microphone sensitivity automatically. This softens the background noise making it easier to participate in conversations in noisy environments.
4. SmartSound Whisper activated, for bedtime stories, hiking outside, watching TV
   Whisper boosts softer sounds, such as 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. Whisper brings the softer sound “closer” so that you can hear it better, while other louder sounds remain unchanged.

• the parent-infant program at TLC (PIP): an ASL-based play / discussion group for parents and their deaf children that meets twice weekly for 2 hours — led by the first ever Deaf director of such a program, Nancy, who is a truly lovely beacon of inspiration — and includes a wonderful group of counselors and teachers, fantastic SLPs (Christine and Claire), caring aides (like our dear Susan), our great translators, and so many deaf and hearing volunteers
• Family sign language lessons with the wonderful Anna, who also works at TLC and has introduced us to Deaf culture and welcomes us into her home: weekly 2-hour-long ASL lessons in our home on the weekend for the whole family, and anyone else who wants to join us
• our amazing day care provider: the staff child care program at TLC that opened its doors to us to provide a loving environment with dual immersion in ASL and spoken language with a mixed group of deaf, HOH, CI, hearing and CODAs (children of deaf adults); led by Mary Jane, whom we adore, and including amazing teaching staff like Jenn, Karen, Nancy, and Kelly as well as the fantastic high school kids who come over every afternoon to play and sign with the kids, and give them great deaf role models.