“All I want for Christmas is new hearing aids.”

So said our 12-year old daughter Keisha last month as we began thinking about the holiday season here in 2009.  Keisha’s had her current hearing aids for over four years, and they are showing their age and losing their effectiveness. In addition, she’s had a growth spurt has outgrown her current earmolds.

Background

A little bit of background might be helpful here.  Keisha was born just before infants started being checked for hearing loss, so we didn’t find out that she had bilateral sensorineural hearing loss until she was about 3 years old. She currently wears Phonak BTE (behind-the-ear) aids in both ears, along with FM receivers. The FM receivers enable teachers to speak into a special microphone so that Keisha can hear over the rest of the room noise.

We’re still learning how to communicate and often have communication breakdowns associated with living with hearing loss. In addition to her aids, we use some sign language, lip reading, and handwritten notes. Keisha prefers to communicate orally, but her hearing loss has left her with the need to get speech therapy to make sounds she cannot hear.

Audiologist – Take 1

We received a referral from the insurance company to an audiologist, so that he could test Keisha’s hearing and make a recommendation for new aids and make new impressions of her ears so that new earmolds could be made.

Yesterday afternoon we met with the audiologist, and he noticed quite a buildup of wax in her ears. There was so much so that he couldn’t get a good reading when he measured the air pressure against her eardrums and didn’t get any response. He referred us to an ENT (Ear, Nose, and Throat specialist) in the same building and we made an appointment for this morning.

Otolarygologist (say that 3 times fast!)

The ENT appointment was pretty quick, because he just needed to remove the wax from Keisha’s inner ear, and more gently than with any tools the audiologist could have used.  The suction tool is very similar to what dentists use. It was kinda gross to hear and see, but it was necessary. He actually pulled out a piece of cotton that had been up near Keisha’s eardrum.

LESSON LEARNED: Do NOT use cotton swabs in the inner ear. They only push the wax further into the inner ear.

We asked the ENT how Keisha could best keep her ears dry, especially since she puts her aids in after getting out of the shower. In the past, leftover moisture, when she puts her aids on, has led to an ear infection (“Swimmer’s Ear”). The ENT recommended a small capful of isopropyl alcohol in each ear when coming out of the shower to dry off the inner ear.

Audiologist, Take 2

Back at the audiologist’s office, Keisha went in for her hearing test. I liked watching the program he used, and we could see when Keisha pushed the button to indicate she’d heard a sound. After this, he tested the air pressure in her ears and got a satisfactory response; i.e., nothing was blocking them, no fluid was built up behind them, and her eardrums were not perforated.

How Keisha Hears

After this test, we went to a room, and he put Keisha’s audiograms up on a screen. We asked him to demonstrate what Keisha’s hearing was like. First, he played a woman speaking normally to give us a baseline.  Then he played the audio through a filter to mimic Keisha’s hearing loss in her right ear. It was very muffled, and I could barely pick out some of the words.  Then he played the same audio through a filter to mimic Keisha’s hearing loss in her left ear. I could barely make out any sound at all.

I looked at Keisha and felt like crying. This was the first time in my life that I’d been able to experience what her hearing loss is like. Even now, as I type this, I’m feeling emotional.

In Color or Black and White?

Keisha has described not being able to hear effectively as experiencing the world in black and white.  When she’s able to use hearing aids effectively, she said it’s like she’s able to experience the world in every color. We can definitely tell a difference in her mood and personality. She definitely shines when she’s able to hear.

Waiting for the cost

We got a recommendation for the best hearing aids that will accomodate Keisha’s type of hearing loss. Now we’re waiting on the insurance to tell us how much all of this will cost us.  We are certainly not in a position, given my unemployment, to pay for these out of pocket.  I’m guessing that, with the cost of new ear molds and aids, it could be upwards of at least $3200 total. How much of that we’ll be expected to pay we’ll know for sure soon.

Conclusion

The most moving part of today was being able to experience, to a small extent, what life is like for our only daughter without her aids. I can understand more clearly how valuable and important having good hearing aids is to her. I’m a bit nervous about the potential cost, but I’m also hopeful that we’ll be able to raise the money somehow.

UPDATE!

We got word back from the insurance company. With the discount we’re getting on the aids, including audiological services and new ear molds for the aids, we anticipate the total cost to be about $4000. That’s a lot of money to come up with, for sure.

But then again, what if 400 people gave us $10? Or 200 people gave us $20? Not quite as overwhelming, necessarily. We’re going to look at other ways to get the money, but I thought I’d put this out here, since many of you have asked about how you can help.

Related articles by Daniel Johnson Jr and Zemanta

• Acoustically Emotional (journeyinsidemymind.com)
• Hard of Hearing Posts (journeyinsidemymind.com)
• How To Prevent Swimmer’s Ear (howcast.com)
• Strategies for Helping Those With Hearing Loss Enjoy Holiday Season Are Offered by HearUSA Audiologist (prweb.com)

The weekend is here and it’s setting up to be a busy one:

• Jennie works tonight.
• Saturday morning we have our weekly Weight Watchers meeting.
• After that meeting we’re going to call the pediatrician to see if she’ll see Keisha about her earache, the same one that’s been keeping her from wearing her hearing aids.
• Saturday afternoon I’m going to the New Media Cincinnati meetup.
• Sunday morning I’m singing in the choir at church, an a cappella song called “How Excellent”. It’s gonna be awesome.
• I’ll also be helping run the sound during the service. Come join us if you’d like.
• Sunday afternoon I have a 20-year reunion planning meeting with other classmates.
• Sunday evening I’ll be on The Pod 5 Live, and I hope you’ll join the party there as well.

Somewhere between we’ll be resting and eating and grocery shopping and somehow spending time together as a family. I guess I’ll be looking forward to getting back to work on Monday so that I can get some rest, .

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The Cincinnati Business Courier reports that Cincinnati Bell Wireless will launch a service that allows customers to receive voicemails as text messages.

I look forward to seeing this emerging technology in action, mainly because it shows some promise for people in the deaf and hard-of-hearing community, of which our family is a part. Most deaf and hard-of-hearing folks I know who rely on text messaging could receive voicemails from hearing people in this way.

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Keisha and I just came back from putting gas in the car and a quick trip to the public library. It had been a few weeks since we’d been there, and she found a book called “The Deaf Musicians”. We just finished reading it while eating some ice cream. I recommend you do the same. Go ahead; I can wait.

I think I’d heard about this book recently on a podcast, but I can’t remember which one. It was really good. Keisha said her favorite part was when the piano player realized he was losing his hearing because that was just like her.

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Earlier I made this post on Twitter:

*!$% hearing impairments! Ugh. So frustrating sometimes!

Then I put my daughter to bed, cooling off a little bit. I returned and decided I should post again:

Clarification on my last Twitter: I’m just frustrated at hearing impairment. Ppl who know me understand that we deal with it every day

Now the real back story. Earlier as I was trying to get her into bed, different things kept coming up to hinder that. Then as she was getting her bed ready, I was in the living room, and she called out. She needed a pillow because hers were in the dryer.

So I told her to get one from our bedroom. She apparently didn’t hear me – go figure. So I called out a bit louder for her to get one from our bedroom. Again – so I basically called out as loud as I could for her to hear.

A few minutes later I went to her room to tuck her in, and she had this hurt expression on her face. “I don’t like when you yell at me,” she said.

That’s what I meant by hating the frustration of hearing impairment. I need to remind myself constantly that I practically need to be in the same room as Keisha in order for her to hear me; especially when she has her hearing aids out at night. If I’m going to be sensitive, I need to make this kind of effort.

I have written about our experiences with deafness and hearing impairment a lot in this blog, but I’d love to know what you have to say.

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Hearing Loss News and Articles reports that a hybrid cochlear implant has been developed at the University of Iowa that may be something for us and Keisha to investigate further. Whereas hearing aids amplify sounds, cochlear implants convert sounds into electrical impulses and shooting them along the auditory nerve.

Here’s an interesting excerpt that talks about the cochlea:

Strangely enough, the cochlea is laid out like a coiled piano keyboard: Cells along the corridors are tuned to particular frequencies entering the ear. In the case of a low-pitched sound, cells tucked away deep inside the cochlea alert the auditory nerve; cells that respond to high notes sit close to the cochlea’s entrance. That’s fortunate — because cochlear regions where “ski-slope” patients need a boost are those most accessible to surgeons.

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More than 1700 fans pitched their idea in a contest to best express the NFL experience. The leagues called the competition, “Pitch us your idea for the best NFL Super Bowl commercial ever. Seriously.” The finalists have been chosen, and their ideas are available for everyone to vote on: One guy, Jay, is from Cincinnati. There are several really good ideas, and I’d love to see each one become a commercial in and of itself.

I’m especially partial to Vanessa’s because it describes the experience of being a fan from a deaf perspective.

Now it’s your turn to vote: http://www.nfl.com/superad/vote

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As 2006 draws to a close, we figured it was time to reflect on all that has happened this past year, as we look forward to 2007. One thing that may not be apparent is that Dan has been doing the Journey Inside My Mind podcast throughout the year. We thought it would have been repetitious to repeat what happened there each month. So here goes:

1. In January we found a different car, since our other one died on the highway. Dan saw an orthopedic surgeon for some lower back pains.
2. In February Dan and Jennie became uncle and aunt, and Keisha became cousin to James Alexander, new son of Dan’s sister Mandy.
3. In March Dan got a lumbar injection, and we three attended a conference in Columbus at the Ohio School for the Deaf, which was about being parents of deaf and hard of hearing children.
4. In April Dan completed his 36th year and tried out contact lenses for the first time since college (back in glasses at the present time, tho!). Jake got into a dogfight with another dog.
5. In May the election year phone calls started coming, and Dan caught a seriously bad sore throat and head cold, and his ears got clogged up. Our car broke down in front of our apartment, and Jennie’s uncle fixed it up for us. Keisha got a videophone from Sorensen communications. And we wished Jennie and mothers everywhere a Happy Mother’s Day.
6. In June Jennie and Dan completed their 11th year of marital bliss! Yee Ha! Also, Dan got vulnerable about things going on with Keisha during the 50th episode of his podcast. Speaking of Keisha, we noticed that she’d grown quite taller. Jennie and Keisha wished Dan a Happy Father’s Day in a special way.
7. In July we rejoiced as Keisha turned 9 years old. Dan and Jennie also got to meet up with some folks we knew back in college in the campus ministry.
8. In August we continued to endure the blistering summer heat, often with random power outages affecting the entire neighborhood. As Dan’s job status changed, we welcomed the start of the football season.
9. In September we began homeschooling Keisha, and Dan was interviewed by someone for a book about self-injury, which will be coming out in 2007. Dan realized he’d been podcasting for over a year and then started to Twitter. We all participated in the One Voice Cheryl Dawson Memorial Walk for Domestic Violence Awareness and Prevention.
10. In October it was “Allergies Gone Wild!” again in the Johnson household, we celebrated Jennie’s birthday. In our spare time we watched two kids, two dogs, and a house, which was a life-changing experience.
11. In November the elections finally came and went, Dan wrote and performed a blues song, finally opted to shave off his beard. We three decided to start the Homeschooler Podcast.
12. In December Dan provided daily video updates to the Journey Inside My Mind blog, which also won a blog award! Keisha got an email reply from Santa, and we all had a great Christmas.

What will 2007 hold in store for us? Be sure to stay in touch so that you can find out. Copy and paste the feed URL into your news aggregator. Or you can go to the “Subscribe” section on the sidebar and enter your email address to receive updates via email. Isn’t that neat?

crossposted to Journey Inside My Mind Podcast on MySpace

We had a sign language class tonight, and in this update I share about some of the ways we use sign language in our family:

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crossposted to JIMM Podcast at MySpace

We spent time doing things that didn’t involve our voices today:

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