Wednesday, May 22, 2019

New Hearing Aids and Altered Ear Canals

Julia stopped using FM in sixth grade.

Of course, I never thought I'd have one of those kids. My kid would always use all available technology. My kid would follow the rules

The rules surrounding FM* in middle school were complex. Julia had to take the transmitter to each teacher and follow a schedule of channel changes to be sure her transmitter wasn't interfering with the others in the building. All this for a benefit that she didn't especially appreciate. The system became burdensome and annoying. We decided that she could go without the FM if she maintained her grades.

We didn't even notice a blip in academic performance and so by the time her Phonak Sky hearing aids were due to be replaced in the summer of 2018, compatibility with the school's Roger transmitter wasn't an issue. We were free to explore other options, other brands, and even a different style of hearing aid.

Since being diagnosed at age three, Julia always wore Phonak behind the ear (BTE) hearing aids. BTE hearing aids are robust enough for the demands of somersaulting kids. They're also heavy compared to the other minuscule devices now on the market. Since Phonak wasn't offering iPhone connectivity, Julia chose Oticon OPN receiver in canal hearing aids.

And another adventure began.

The Oticon aids were magnificent at first. Julia streamed music from her iPhone during just about all of her waking hours. The batteries (now size 312 rather than the bigger ones we'd been used to) lasted about three days. She was happy though and really enjoying a typical teenagery phase of ignoring the world in favor of whatever the kids are listening to these days.

A couple of months into the Oticon experience, she started having ear and jaw pain. It got so bad that Julia couldn't wear her hearing aids for the whole day. She'd have to take one or the other out to relieve the pain. We consulted with the audiologist, gave the orthodontist a thorough talking to, and settled on new ear mold impressions. 

The new impressions were significantly different and pain-free. Since most kids don't have close monitoring on the shape of their ear canal, no one knew that orthodontic bite adjustment could cause such changes. 

Christmas 2018 was pain-free, but the right Oticon hearing aid was not working. We replaced the receiver because we were told that the thin wire and somewhat moisture sensitive part in the ear canal can go bad. We sent the right hearing aid in for service and received a brand new replacement. We sent both hearing aids in for service and received brand new replacements. The problem was only ever with the right hearing aid which would periodically get very quiet or sometimes mute completely. Eventually, we found that changing the tiny wax guard on the end of the receiver would fix the problem. Julia was having to change the wax guard on the right hearing aid every day.

Frustration peaked about the time we sent both the left and right hearing aids in for service. The thought was at that time that the two aids weren't communicating with each other. Perhaps the left one was muting the right one? We were pretty much at wit's end. Julia doesn't like having to mess with her hearing aids. She puts them in, they work, she lives life. This constant futzing was not at all acceptable. She was having to wear her Phonak hearing aids while the Oticon ones were being repaired and was ready just to go back to the old aids even if they were pretty worn. At least she just put them in and they still worked. Reliability is more important than music streaming.

It was an anxious time in which my husband and I considered the possibility that receiver in canal hearing aids just didn't work for her and we'd really screwed up. We were outside of the trial period and wouldn't be able to get new hearing aids for three to five years. Stress levels were high.

Eventually, I took the two hearing aids and compared them to each other. There must be some reason this only ever happened to the right side. It was then that I noticed a difference in the position of the receiver in the custom ear mold. On the left side, the receiver sat back in, but on the right, the receiver was right at the edge. Perhaps the receiver was getting jammed into Julia's ear canal and somehow squishing the wax guard in a way that made the hearing aid sound quiet or mute completely.

A side by side comparison showing both the change in ear canal shape and the
problematic position of the receiver in the middle ear mold. It's not good to have it
hanging out of the end like that!

I got them in reverse order in the picture, but the most curved canal on the
minty colored mold is from an impression taken in August 2018. The blue
one is just a few months after and the clear mold is from March 2019. The
orthodontist is straightening her teeth and her ear canals.

We returned to the audiologist and by March had comfortable ear molds with a recessed cavity for the receiver that didn't cause it to mute the whole hearing aid. Just like that, the Oticon OPN hearing aids were wonderful again. Music streams. Volume adjusts with an iPhone app. Wax guards only need to be changed every six weeks or so. All is well.

We must have stumbled onto a bunch of circumstances that were previously unknown or just don't impact that many kids. It complicates diagnosing issues that Oticon just sends new hearing aids with no diagnostic report. Apparently, they're too small to really do any actual repairs and so they don't tell you if there's a software problem or user error or moisture damage. The lack of useful communication wouldn't have been an issue if the Oticon service had fixed the problem, but since we were still in the same place after multiple "repairs," it was an added frustration.

Ear mold drama aside, she loves the size and sound quality of the new hearing aids. She put the Phonak hearing aids in for a little while recently and said that the world sounded "sad." It seems like the Oticon aids have a better strategy for reducing background noise, but that's just something I've pieced together from Julia's occasional reports. Now they just work, and for that, we're very grateful.

*FM is now an outdated term because technology has changed and it's no longer accurate. The microphone a teacher wears to transmit sound directly to a student's hearing aid is now called a HAT (hearing assistive technology). This serves a dual purpose of being technically accurate and making me feel old.

Tuesday, February 12, 2019

Watching It Burn - An Adventure in Theater Accommodations

At the beginning of November, I happened upon a news story about the traveling Broadway production of Hamilton making its way to nearby Pittsburgh. 

Huh, I thought. I’d really like to see that. 

Even after research revealed staggering ticket prices, I still felt like I wanted to go to there. That’s really saying something. 

We embarked on a three-month journey that began with an online waiting room with a randomly assigned number in a vast queue (at one point it said there were hundreds of thousands of hopeful theatergoers, our number was 837) and ended with our minds blown at the January 27th matinee. 

The show was at Pittsburgh’s Benedum Theater and in the days leading up to the ticket release, I researched their captioned performances. Each run concludes with one closed captioned and ASL interpreted performance during the matinee on the last day of the show. I sort of knew this because our cued speech instructor was gearing up to interpret Mary Poppins while she was giving us lessons. She told us how she was trying to decide whether to fingerspell supercalifragelisticksexpialidocious or just print it on a sign to hold up at the appropriate time. I never did find out what she did. 

The Benedum is a beautiful venue. We arrived WAY early for our show,
but the theater is so interesting we were quite entertained by staring at the ceiling.

At any rate, confirmed that the very last show would have captions and interpreters. A positivity campaign to shift our feelings from angst about waiting so long to see Hamilton to healthy anticipation that made the winter pass pleasantly was quite successful. We secured our tickets and started listening to the official original Broadway cast soundtrack. 

Note: in the days before the show, I went back to the website to figure out where to get the captioning device. They’d added two additional captioned/interpreted shows! We really didn’t have to wait until the end of January although I don’t know how I’d have figure out which extra shows had accommodations. But I do know that the devices are picked up from guest services and you have to leave a photo ID to check one out. 

The Hamilton soundtrack is addictive. Within a few weeks, we were memorizing lyrics. I finished the Ron Chernow biography just after Christmas. We watched every YouTube Hamildrop and even several episodes of Drunk History. By showtime, I could *almost* sing/rap Angelica’s part in Satisfied. We were three people prepped and ready for historical hip hop. 

Our morning went according to plan and by 12:30 we were in our seats, captioning device in hand. Benedum guest services advised leaving the unit powered off until Hamilton started since it wouldn’t start displaying until showtime. At about 12:58, Julia turned the device on. It displayed two rows of rectangles, each a full-color advertisement for an upcoming show. All-caps captions appeared a sentence or two into King George’s introduction to the show. And then I was swept away to “a forgotten spot in the Caribbean” and was only peripherally aware of the problems that ensued. 

That home screen flashed on a few times and then there was a smell, but I didn’t connect the plasticky odor of impending electrical fire to the captioning device. In fact, I thought the burning smell was some sort of stage effect though I couldn’t figure out which one. (This was well before Eliza burned everything and I didn’t smell that fire anyway.) I scoped out the emergency exits just in case. 

Julia was relieved to make it to the intermission. “This is really hot,” she said. She meant the device, but the show was pretty hot too. 

Not wanting to bother us, Julia tried powering the captioning device off and back on when it stopped working. It was going in and out of service. She turned it off for good when it started to heat up. I sniffed the plastic case and confirmed the source of that smell. Julia elected to go through the second act without a captioning device. 

The Benedum guest service lady was very apologetic and set the device aside for service or perhaps the garbage. We learned that these handheld devices are on their way out anyway. Broadway (the "real" one in NYC) is using the GalaPro app which allows theatergoers to use their own phone to access captions. As this technology makes its way across the country, there will be no need for special captioned shows because the app will work at every performance. GalaPro will silence phones and allow adjustments to brightness to keep the screen from emitting its distracting light. As an added bonus, one's own phone is unlikely to spontaneously combust. I hope.

In summary, we now have a plan in place for instances when one person needs to quietly notify the rest of the family that some hunk of junk is about to explode. And we know that preparation for live theater is key. With enough at home singalongs, the technology is optional but we do look forward to giving the new app-based captions a go.