We've Got Him Back!

Matthew's cochlear implant was activated today - and it works! And he's able to hear!

Early this morning, the four of us headed up to the Johns Hopkins Listening Center. Matthew says he was nervous, but also excited, as were we all. We had waited so long for this day to arrive, it was hard to believe it was finally here.

I plan to post some links that will explain cochlear implants in more detail but, in a nutshell, the external device includes three components: the speech processor, which is connected to a cable, which is connected to a headpiece. The processor is worn over the ear, like a hearing aid. The headpiece attaches by magnet to an internal receiver implanted under the scalp. The receiver is connected to a long filament of electrodes that threads into the cochlea.

Steve, our audiologist, started off by testing the implant to be sure all 16 electrodes were in good working order. Then, he placed the processor on Matthew's ear and began activating each of the electrodes, one a time, to determine the highest volume level that felt comfortable. All Matthew could hear at this point were individual scratching sounds, but he was smiling nonetheless because, as he described, "it was incredible to hear such precise, keen, sharp sounds - exactly what you lose with a hearing loss."

Then, the moment we had all been waiting for - the microphone was turned on, we held our breath, and Steve started to speak aloud. First, Matthew's face broadened into a grin and then he laughed. "You sound like a chipmunk!" he said. Later, he amended the comparison: "You all sound like giant bugs, but understandable bugs; and understandable bugs are a lot better than non-understandable people!"

It is typical for cochlear implant users to say that, at first, everyone sounds like cartoon characters. Cochlear implants do not restore accoustic hearing; they replace it with electronic hearing. In a normal ear, millions of tiny hairs respond to vibrations of the eardrum and stimulate the auditory nerve to send signals to the brain. With a cochlear implant, sounds are coded electronically by the speech processor, then sent through the cable, through the headpiece, to the receiver under the scalp, to the electrodes inside the cochlea. These electrodes fire the auditory nerve and send messages to the brain; but a limited number of electrodes cannot capture the full range of sounds that our ears are able to perceive. Thus, c.i. hearing sounds somewhat flat and synthetic - at least until the brain learns to adapt.

Matthew says it sounds as if everyone is talking through a voice changer. "It's like nothing I've ever heard before." As he knew to expect, music sounds terrible (because the current technology is not great at converting music) but this is expected to improve as Steve introduces new programming strategies and Matthew's brain adjusts to the new stimuli. And Matthew is still able to enjoy music with his non-implanted ear. Overall, in his words, "It's awesome." In Danny's words, "It's a miracle."

Matthew has had a great early response to the device. Many c.i. users take weeks or longer to be able to hear the radio or speak on a telephone. But Matthew was able to hear both right away. As Matthew gets used to the implant, he will be able to take in a expanding range of sounds. We will be returning to see Steve again in two days, and then again in a week. At each visit, he will reprogram the processor - and Matthew's hearing experience should improve.

We asked Matthew how he wanted to celebrate this major new step. "By going to school," he answered. So we dropped both boys off at their respective schools, and Jon & I went out for a celebratory lunch. Two administrators from school called this afternoon to let me know how great Matthew was doing, and when I picked him up late this afternoon, he was in a wonderful mood. Tonight we were able to have a dinner conversation for the first time in many months. We are clearly off to a very good start - and we are so grateful.

Milestone

We're at Day 365 post-transplant. I've got no words to top that.
Instead, how about some recent pix:


Clowning around at home











Impromptu guitar lesson in Captiva, FL, over winter break

Waiting to board the flight home

Amazing article by a c.i. recipient (referring to Matthew, click here)

This morning at the computer, I discovered an email posting on one of the listserves I subscribe to - Association of Adult Musicians with Hearing Loss. It referenced an article in this morning's Providence Journal about a hearing impaired adult musician, Richard Reed, who has been able to return to music, thanks to a cochlear implant.

I was especially delighted to see the article because Richard is no stranger to us. He was introduced to Matthew several months ago and has been corresponding with him on and off, helping Matthew become comfortable with the idea of receiving an implant and also helping to shape his expectations of what c.i. assisted hearing will be like.

Although I knew a little about Richard before, reading his complete story in the ProJo was fascinating. I kept thinking, 'Wait until Matthew reads this.' Then, three quarters of the way through, I realized that Richard was alluding to Matthew in the article as his 15-year old guitar playing correspondent. How cool is that!

Check out the article (by clicking on the title above). It will give you both a good sense of what it's been like for Matthew to live with profound hearing loss over the past year and also what challenges he will face as a c.i. user going forward.

The Second Longest January Ever

We’re not superstitious, but January makes us a little jumpy. Three years ago on Superbowl Sunday, our house caught on fire during halftime. Two years ago January, Matthew began complaining of a headache that led to his diagnosis ten days later. Last year, Matthew spent all of January in the hospital, completing one stem cell transplant and starting a second one. In that same month, Jon’s dad Larry passed away.

This January, we’re in a more hopeful place – we currently stand at Day 356 post transplant, inching ever closer to the mystical one-year mark – but the days can’t pass quickly enough. We have 20 days to go before Matthew’s implant gets “activated.”

Matthew is doing ok, but it’s very rough for him to get by with practically no hearing whatsoever. He still has a small amount of hearing in the unimplanted ear; however, his implanted ear is now 100% deaf. Although we knew this would be a difficult period, it was still a shock for him to put on ear buds and hear no sound whatsoever and for us to see our child become even more impaired.

The first few days after surgery were especially difficult. Matthew was exhausted physically and emotionally. For the first 48 hours, he had to wear a funny Styrofoam contraption (like a lopsided version of an early model football helmet) and was supposed to keep his head in an elevated position. These two factors made it difficult for him to sleep comfortably. But I know his exhaustion was also due to the increased energy now required for hearing. So, the weekend was a bit tough. Here we were, worn out from the hospital experience, tending to Matthew’s physical needs (removing the bandage, dressing the incision, sticking to a medication schedule), having to expend more energy just to talk with him, trying to manage our frustration and emotional distress, trying to muster some enthusiasm for the weekend (after all, it was New Year’s Eve) and some perspective (things are going to get better, look where we were last year at this time). You get the picture…

Somehow Matthew has gathered the energy to go back to school. I don’t quite know how he’s getting by. It’s hard to imagine the strength and courage it must take at 15 to go to school every day bald, tired, and unable to hear most of what’s going on around him, yet facing his friends, his teachers, and a demanding workload.

On the home front, much of my energy is still tied up in managing Matthew’s needs – helping him organize his schoolwork (memory and organization are even bigger challenges than they were before), driving him to tutors, keeping in touch with the school, interfacing with doctors, following up with the insurance company.

And we’re facing a lot of difficult questions as parents. On one hand, we know this is the age for Matthew to start taking more responsibility for himself. On the other hand, we recognize that he is dealing with some major challenges and disabilities and has basically lost a year and a half. So how much should we intervene?

Do we tell our 15-year old when to go to bed – or allow him to stay up until midnight doing homework night after night when, in our case, there’s more at stake than his falling asleep in class the next day. There are real concerns about his immune system.

And if Matthew accidentally leaves his FM system (the lavaliere microphone his teachers wear, which transmits their voice wirelessly from the front of the classroom directly to his hearing aids) at home, do we run it over to the school because ,without it, he won’t be able to hear anything in class that day? Or do we allow him to go without it to realize the natural consequences of his actions?

On the social front, do we allow him to go on a weekend trip with a friend – or say “no” because being on the slopes is too great a risk until his hearing improves? Must we permit some risk in order for him to learn to live with his disability? To what extent should we act to protect him?

Taking a step back, it occurs to us that last January these concerns could not have been farther from our minds. So aren’t we fortunate even to be considering these questions?

This weekend, we will see a performance of “Stomp” at the National Theater. It’s a show involving percussion, movement and visual comedy, where the performers make “music” out of all kinds of common objects – brooms, trashcans, pipes, etc. No words are spoken. Should be the perfect theater outing for our hearing-challenged crew.