Dry & Store & Fiona Apple

Brandt found out on Thursday that his iCom was back from its repairs (I think this is the 5th or 6th repair, but I've honestly lost count), so he had to rush back to the audiology clinic yesterday.  And after waiting over 2 months for the Dry & Store hearing aid dryer, it has finally come in as well (it’s cheaper and readily available on Amazon.com, but his health insurance will only help pay for it if it’s purchased through a doctor’s office).  It was supposed to come in a few weeks ago, but there was some “electrical glitch” in the batch sent out by the company, and they all had to be returned.

He tried out his iPhone and FM system with the new iCom (which was completely rebuilt, again—this time with a stronger neck-loop and updated software) and they worked fine, but music was a different story.  Now, Brandt doesn’t actually like music, but it’s a great way to test his hearing technology because it uses Stereo sound, whereas the other devices use Mono.  His iPhone randomly selected “Across the Universe” from the Pleasantville soundtrack, and his description of what the song sounded like was:

“Finona Apple singing underwater, holding a record player, driving down my parents’ gravel road.”  

I responded, “Wow, that is really specific.”  “It skips,” he explained, “and the sound quality is all messed up.”  The audiologist couldn’t fix it, and Phonak told her that ‘iPhones are the one type of cell phone that don’t handle Stereo sound correctly’ (or something to that effect).  There’s ALWAYS a catch with this technology! 

The reason Brandt got the Dry & Store is because both of his hearing aids have had to be sent back to Phonak and completely replaced in the last few months—and he just got them last July.  His audiologist guessed that maybe they were getting too much moisture in them, and it was shorting out the electrical circuits.  She gave Brandt a ‘passive’ hearing aid dryer last fall, which is simply a little plastic container with a desiccant (drying substance) inside it.  He stored his hearing aids in the container at night, and the desiccant was supposed to dry out the moisture inside the hearing aids.  Then when the white desiccant turned blue, it meant that it was full of moisture and he popped it in the microwave for a few seconds to ‘recharge’ it.  It was easy—and better yet, FREE—but unfortunately it didn’t do enough good.

Brandt’s audiologist follows the “no-pressure salesman” model, which we generally appreciate.  She made sure from the start that Brandt didn’t feel pressured into buying a particular (more expensive) model of hearing aid or other hearing assistive devices, and stressed that she doesn’t make a profit off anything he orders through the clinic.  When our state Vocational Rehabilitation Office offered to pay for Brandt’s FM system, iCom, and the mid-grade model of BTE hearing aids, he wanted to upgrade to the high-end model of hearing aids and pay the difference of $2,000.  His audiologist was very against this and tried to talk him out of it, saying repeatedly that none of her patients had ever been able to tell a difference between the two and that he would just be wasting his money.  He was insistent on the upgrade, and finally she compromised by letting him wear the mid-grade model for a month and then let him try the high-end model for two weeks afterwards.  He ended up preferring the high-end model by leaps and bounds and paid the extra $2,000 to keep them, much to the audiologist’s surprise.

But even with this background knowledge that she didn’t like to ‘pressure’ patients into paying for extra things, we still find it strange that she didn’t recommend Brandt get the Dry & Store much earlier (and even when she recommended it, she still phrased it as more of a suggestion, and apologized profusely that he would have to pay $150 for the machine).  When Brandt opened the box and read all the features, he said, “I should have gotten this when I first got the hearing aids!”  It’s a powerful dryer that pulls the moisture out of the hearing aids, and uses a ‘desiccant brick’ to trap the moisture; they last about 2 months each.  It also has a “UV germicidal lamp” that sanitizes the hearing aids.  The other claims on the box are:

• Removes destructive moisture.
• Hearing aids sound better, last longer.
• Dries ear wax that can interfere with hearing aid function.
• Reduces or eliminates itching and irritated ears.
• Hearing aids operate more efficiently so batteries can last longer.

I’m relieved that the Dry & Store arrived when it did, because the humidity around here is so intense, I was getting worried that Brandt’s hearing aids would short out again from all the moisture.  We can’t say with real certainty that it’s working, but when he took the hearing aids out this morning, all the moisture in the tubes was gone.  So that’s a good sign, at least! 

  

But He’s My Sister!

Tonight in my ASL class, we practiced how to ask permission and request to borrow things.  Our teacher, Mary, cut out slips of paper with scenarios to act out, and we each had to choose one.  Mine said, “Your washing machine has broken down.  Ask your sister, who lives nearby, if you can borrow hers.” 

I had the easiest scenario, by far, and I got to go last, so I had time to learn from my classmates’ mistakes.  The first lady needed coins for a parking meter, but only had a $20 bill and needed to borrow $1 in quarters.  Another lady was in a restaurant and kept bumping elbows with the left-handed person next to her, and needed to switch places.  The only man in our class, Steve, was at the library and needed to borrow an umbrella because it was raining.  But he couldn’t remember the sign for LIBRARY, so he tried signing “BOOK-BORROW-HOUSE.”  Mary demonstrated how everyone could have asked their requests better, and made them re-sign it.  I was pretty nervous when it was finally my turn.

I signed to Steve, even though I was supposed to be asking “my sister.”  I remembered to give details about what my problem was and why I needed to make a request to this specific person.  I said, “MY WASHING-MACHINE BREAK.  YOU LIVE CLOSE, DON’T-MIND I USE YOUR WASHING-MACHINE.”  Mary told me that the only thing I did wrong was not adding a QUESTION-MARK at the end to show that it was a question, and she didn’t make me re-sign it.  She jokingly told Steve, “You should say, ‘SURE, BUT YOU HAVE-TO PAY TO USE MY WASHING-MACHINE,’” which he repeated.

I looked hurt and signed back,

“BUT, YOU[’RE] MY SISTER!”

Steve laughed and said, “Not until after the operation!”

Every week, I love this class more and more.  And when I got home, about 15 minutes early, my Hearing Cat, Cupcake, was standing on the arm of the couch waiting for me.  Brandt was sitting in his recliner, so he knew I was home thanks to Cupcake’s ‘alert’:

Our ‘Hearing Cat’

You are no doubt familiar with Seeing-Eye Dogs, which are guide dogs used by blind people to help them get around more easily.  You might have even heard of Seeing-Eye Ponies (or “Guide Horses”) and Helper Monkeys, too.  But did you know that there are Hearing Dogs used by Deaf people?

I didn’t know that Hearing Dogs existed until the Hearing Loss Association of America convention last summer.  There, Brandt and I saw over a dozen Hearing Dogs, wearing their orange vests, ranging from a tiny Pomeranian to a large Golden Retriever.  I then learned a lot more about Hearing Dogs in my Hearing Loss Support Specialist certification class.

  

Hearing Dogs are trained to alert their Deaf or Hard-of-Hearing owner to a number of sounds including smoke alarms, doorbells, ringing telephones, alarm clocks, sirens, and someone calling the owner’s name.  It costs about $25,000 to select, care for, train, and follow-up with a Hearing Dog, but the owner only has to pay a $50 application fee.  Since the HLAA convention, I have met several people who have gained confidence in venturing out in the world since losing their hearing, thanks to their furry Hearing companion.

Brandt and I aren’t really dog people, so he’s not planning on getting a Hearing Dog.  Unfortunately cats aren’t trainable to alert their owners to specific sounds, but our kitty, Cupcake, does alert Brandt to one thing—she lets him know when I get home. 

Our living room is off to the right when you walk in the house from the garage, and the couch is on the inside wall of the garage.  When I get home from ASL class, the grocery store, etc., Cupcake will jump up on the arm of the couch and start meowing at the door to the garage.  Even with his hearing aids in, Brandt can’t hear the garage door going up, but Cupcake sure can.  This is a relatively new trick that she has developed, but she has been very consistent with it since she started doing it last year.  It’s not as helpful as alerting him to the smoke alarm or having his name called, but, it keeps him from jumping out of his skin when I burst through the door unexpectedly. 

I don’t have a picture yet of Cupcake in her “Mommy’s home!!” position, but here’s one of her sitting on the other arm of the couch, next to Brandt’s recliner.  She was mad that my cereal bowl was in her way, so she put her tummy in the bowl and laid down anyway:

Dr. Awesome’s Big News

Brandt had his annual appointment with Dr. Awesome on Monday, and not even a kidney infection could keep me from the 2-hour drive back to my hometown for this!  Last year, at his first appointment with Dr. Awesome, Brandt found out that his hearing—and especially his Speech Discrimination—was deteriorating much faster than he’d realized and would need to get Cochlear Implants (CI) in 5 or 6 years.  He was “in the gray area” of Cochlear Implant candidacy, so Dr. Awesome suggested waiting a few more years before getting evaluated for CI.

Over the past year, I could tell that Brandt’s hearing was getting much worse.  He’s been sleeping through his alarm (he really needs to get a vibrating alarm clock!) and keeps waking up in a panic thinking there’s a plane flying over the house (it’s actually his tinnitus).  So when Dr. Awesome looked over his audiogram from 3 months ago and said, “Well, your hearing hasn’t really declined since last year, that’s good,” I jumped in and explained that it actually has.  He agreed that “hearing on paper isn’t always the same as it is in practice.”

Dr. Awesome thought for a second and said,

“I think I just might send you over for a Cochlear Implant evaluation.  You’re borderline, especially since your hearing loss isn’t all that bad, but your Speech Discrimination is so low, I honestly think you’d do much better with an implant.” 

I started dancing in my chair.  I could barely concentrate as Dr. Awesome told Brandt about the new research on the benefits of “bimodal stimulation”—using a Cochlear Implant in the worse ear and hearing aid in the better ear.  If he passes the evaluation and there aren’t any problems with his CAT scan (and the health insurance approves the surgery!), he could be implanted in 6 to 8 weeks.  Weeks.  The room was spinning.  My lower lip kept trembling and I was holding back tears.

I was almost-crying for 3 reasons.  First, was the excitement and relief at the thought of Brandt hearing better.  To be able to participate in group conversations, understand dialogue in a movie, possibly even listen to music without hating it.  To continue teaching without as much worry about understanding his students.  To rejoin The Hearing World (I have doubts he was ever fully in it before).

Another reason:  my immediate thought was, “I can’t wait to tell Aunt Louise!  She’ll be SO EXCITED!!”  And then I remembered that I can’t tell her.  I always thought she’d be sitting next to me in the waiting room while Brandt is in surgery.  That she’d give me advice when he’s having a “Bad CI Day,” and give him tips on how to adjust to everything sounding different.  It’s hard for me to imagine going through this process without her, especially since we wouldn’t be here at all if it hadn’t been for her constant insisting that Brandt’s life could change for the better if he’d go see Dr. Awesome.

And third, was sheer terror.  The CI surgery itself has some risks, and Brandt has never undergone any kind of surgery before (he doesn’t even have wisdom teeth!).  There’s an 80% chance his tinnitus will be erased, but in a few people, the surgery makes it worse.  And with as many problems as Brandt has had this past year with his new hearing aids, iCom, and FM system (the iCom broke again on Monday in the clinic—his FOURTH iCom in 8 months, and his hearing aid had to be sent off to the company to be repaired AGAIN—it was just sent off 3 months ago), it’s scary to think about what would happen if his Cochlear Implant processor had a bunch of technical glitches. 

The implant surgery wipes out ALL residual hearing, which is why someone’s hearing loss needs to be quite significant in order to be a candidate.  For someone who isn’t completely deaf—and not even severe-to-profoundly deaf yet—it’s a lot to give up.  Brandt’s hearing loss in his left, “worse” ear is only 70 decibels, which is usually at least 10 to 15 decibels less than what he’d need to be a CI candidate.  So going from a 70 dB loss to a COMPLETE loss (over 120 dB)—that’s huge.  He’s going to go deaf anyway, at some point, probably in less than a decade.  But the natural decline is much much slower than a sudden removal of ALL incoming sound.

Although I have been desperately wanting Brandt to get a Cochlear Implant for the past 3 years, by the time we arrived back home, I was having second thoughts.  When I went to sleep, I’d almost completely changed my mind.  I wanted to take it all back.  I wasn’t ready, it was too big a step, too much to think about.  Without Aunt Louise, my mentor and guru of All Things CI, how could I handle this?

Now, three days later, I’m not as freaked out, but still not ready either.  I know that it will have to happen eventually.  It’s an inevitable necessity.  But I’m worried that it’s still much too soon, that my initial enthusiasm was premature.

We know that it will be at least a year before Brandt could logistically get the surgery.  He will graduate with his doctorate next May (we hope!), which would not be possible if he got implanted this year.  He will have to arrange his schedule so that he doesn’t teach next summer—trying to teach several classes this Fall while adjusting to a CI would be impossible as well.  And it could very well take all of the next year to convince his health insurance company to cover it.  The ideal time for surgery would be late May to early June of next year.  So there’s time for us to fully prepare, if he does end up getting approved this year.

But I’m still scared.