Journey Inside My Mind ™

“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, .

—–
Check out my other blogs:
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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.

Related tags: journey+inside+my+mind journeyinsidemymind jimm daniel+johnson+jr deaf music hard+of+hearing reading

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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Mood: Fine
Listening to: Weekly Radio Address for 10/21/2006 and Radio Adventures of Dr. Floyd
Eating: breakfast bar, chocolate milk, cranberry juice, and coffee
Watching: multi-colored leaves falling from trees outside the window

I was hardly on the computer at all this past weekend, maybe just to check email. We were just so busy with other stuff, which I’ll share after the jump:

Friday night we went with some friend from our family group at church to Parky’s Farm at Winton Woods. They have “Halloween Nights” right now, with a hay maze, puppet show, magic show, hay rides, rock climbing, and more. It got cold and it had rained the day before, so the ground was a little muddy.

Saturday morning we woke up and watched “Last Holiday” with Queen Latifah. Great movie.

Saturday afternoon, Keisha and I went to a Halloween gathering for some kids in the local schools who are deaf and hard of hearing. We made caramel apples, iced cupcakes, and made ghost lollipops.

Saturday evening we went to the home of a woman from church. She has two adopted kids from China, and she’s getting ready to go on a mission trip back to China to help kids who have been born with cleft palates. We went to their home because we’re going to be taking care of the kids while she’s on her 10-day mission trip.

Sunday morning we went to church, and after that, Keisha and I went to the Cincinnati Playhouse in the Park production of “ACE”. It was the first time for both of us, and we had a great time.

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Tonight we talked with the Official Mom of Journey Inside My Mind via SkypeOut. We have the laptop speakers connected to the stereo system so that everyone could hear my Mom. Keisha, Jennie, and I talked for close to an hour, and I took some pictures, which will be on this post momentarily.

What’s great is that Keisha, who is hard of hearing, could hear her Nana very well and talk with her as though she was here. Technology is amazing that way.

Last night I wound up tucking Keisha into bed around 10:30 PM. It’s summertime, and we’ve often let her stay up late. We spent the hour before her bedtime reading another chapter of Harry Potter and the Order of the Phoenix (Book 5). We kissed Jennie bye as she left for work around 10 PM.

She got ready for me to tuck her in by brushing her teeth and taking her hearing aids out, as she normally does. As I tucked her in, she said she wanted to have some music playing while she fell asleep.

I turned the CD/karaoke machine on, and she said she could just barely hear it. It sounded quite loud to me. She wanted it turned up louder. I told her it was already too loud for this time of night.

Then she said something that broke my heart: She said she wished she could hear like Jennie and me, that she wasn’t hard of hearing. I told her I wished she wasn’t hard of hearing, too.

I asked her if she remembered what we’d studied in the Bible on Sunday. Then I reminded her that we’d read Jeremiah 29:10-13:

10 This is what the LORD says: “When seventy years are completed for Babylon, I will come to you and fulfill my gracious promise to bring you back to this place. 11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart.

I told Keisha that God has plans for her, with her hearing loss. We don’t really know exactly what those plans are right now, but God DOES have some great plans in store for her.

Then we prayed together. She asked God to help her be grateful for where she is. I prayed for God to help us both to be encouraged and wait for him to reveal his plans for her life.

Then I told Keisha that I wished her to have “sweet dreams”, full of princesses, princes, unicorns – “Ponies?” she asked – yes, ponies, and all that other good stuff.

Mood: charged
Listening to: Salient – “Immortalize Me”

Jennie, Keisha, and I have a great opportunity to take some sign language classes this summer starting tomorrow night. This conflicts with some meetings we have with folks from church, unfortunately.

Here’s an excerpt from an e-mail I just sent to fellow members of our family group:

Hey there, brothers and sisters! I hope you’re doing well.

I apologize in advance for the length and personal nature of this e-mail, but I hope you’ll understand by the time you’ve finished reading it.

As you may know, our daughter Keisha is hard of hearing, something we’ve known for over 6 years. Communication breakdowns are so common, and Keisha, even though she has an interpreter at school, isn’t able to understand what’s being said because her sign language knowledge is so limited.

We met with a deaf therapist last Saturday and talked about the frustration we’ve all felt from the communication hardships we’ve experienced. She said that the single-most important thing we could do to relieve this frustration is for all three of us to get some sign language training as soon as possible.

We are fortunate to have been contacted by the Cincinnati arm of Deaf Initiatives, and they are having free sign language classes throughout the summer. Unfortunately, the classes coincide with our midweek meetings on Wednesdays at 7 PM. The first class is tomorrow night, 6/14/06.

At this time Jennie and I both feel that the communication needs of our family outweigh our attendance at Wednesday family group meetings. I struggle writing this, because we all thoroughly enjoyed being with you guys. We want to participate in the family group, but we’re going to have to do so, at least for the next few months, outside of the Wednesday meetings.

To that end, we would love to receive via e-mail the lesson notes and any other correspondence – especially via phone and in person.

Please feel free to contact me if you have any questions or comments. And please pray for God to use this time to enable us to superbless others, too.

Within 7 minutes, I got this reply from J., one of the family group members:

I believe that you are absolutely doing the right thing. Who knows who might meet and inspire as well? We will pray that this is a great time for you all as a family as well. I have been fortunate to be able to schedule most of Anna’s appts away from Wed, but things do come up from time to time.

I’ll share more here or in another post later on.

Mood: really good
Listening to: JIMM 49 – Kill My Pain
Eating: LaRosa’s Pizza
Weather: Clear, 66 degrees F

We got a videophone for Keisha Friday. This is a useful substitute for a TTY machine. We can call other deaf and hard-of-hearing people and sign back and forth to them. In addition, we can use the Video Relay System (VRS) to call hearing people. With the relay system, we sign to an interpreter, who relays what’s being said between the two parties.

One challenge for us is that our sign language is at best rudimentary, while these interpreters are really good. Keisha and I made a practice call to Jennie’s cell phone, but it was weird because we weren’t sure if the interpreter was talking to us or if it was Jennie. Then we realized that the interpreter was just doing her job, relaying what’s being signed and said.

Our hope is for Keisha to be able to call other deaf and hard of hearing children she meets over the summer. It also serves as an alternative to talking on the phone, or Keisha trying to understand what’s being said on the phone.

Speaking of the regular phone, we got an amplified receiver, and we’ve used it a little so far with some success. Well, if you count a 25-30 minute conversation Keisha had with her Nana – I guess it was very successful.

Living with hearing loss is something our daughter does every day; she was born that way. Yet I know I and many others are doing things that may eventually lead to hearing loss in the future, if we don’t change certain things about how we live and listen.

This article from Wired News shares some suggestions and advice on how to listen to music, whether in your home, in the car, or on your iPod or other portable listening device.

Wired News:

Mood: hot, teary
Listening to: audio from a Deaf/Hard of Hearing conference we attended last weekend
Eating: Hot wings from Buffalo Wild Wings

Jennie brought home some Buffalo Wild Wings for lunch. OMG! The flavors she brought home were

• mango habanera
• asian zing
• spicy garlic
• blazin’

When Jennie called to ask how hot I wanted the wings, I told her I was willing to go as hot as we could go, even to burning another hole. What I meant by that was that, if it’s hot going in, chances are it’s going to be hot coming back out.

I’m reminded of when we lived in Dayton. We lived really close to this restaurant called B.C. Rooster’s. One of the flavors they had was called “donkey”. It was really spicy – in fact, it was about the hottest we could handle.

It wasn’t until we sat down to eat the blazin’ ones that I understood what was potentially meant by the term “donkey” (think of synonyms).

So, we opted for a bit of – dare I say – “fun” self-punishment.

Update: It’s been several hours, and I’ve been “punished” again, if you know what I mean.

Here’s something about which Jennie and I should be more diligent:

Bionic Ear Blog: Fire Safety for the Deaf

Since our 8-year old daughter is hard of hearing, I’m interested in stuff like this:

Bionic Ear Blog: Statistics on Hearing Problems

I found this article especially good for two main reasons:

1. I have a daughter who is hard of hearing
2. I spend a lot of time listening to audio content on a portable mp3 player

Hearing Loss News and Articles: Finding the right headphones