“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)

Happy Birthday, Mom!

Today is my Mom’s birthday, and it gives me a lot of joy to share how much I love and appreciate her.  Naturally, if it wasn’t for her, I wouldn’t be here.  Happy Birthday, Mom!

For most of my life now, we have lived hundreds of miles apart from one another, yet we remain very close. It’s nothing for me to contact her through GoogleTalk or call her on the phone.  She is a great Nana to our daughter Keisha, and Jennie, Keisha, and I really loved when she lived with us some years ago.

Domestic Violence Awareness

My mom’s experience with domestic violence and abuse is a strong motivating factor in my passion in promoting domestic violence awareness.  She has publicly shared her story on her own blog, and, in honor of her special day today, I would love if you did me a favor and read her story. She wrote it in two parts.

It’s graphic. It’s not for the faint of heart.

She would say it’s only by the grace of God that she is alive.  But, and I think she’d agree with me, by sharing her story, it might help someone else in a similar situation.

Once again, my Mom is a hero to me. She is a survivor. My respect and love for her grows every day. I am proud to be her son. Read this and you’ll understand why.

• Why doesn’t she just leave? Part 1
• Why doesn’t she just leave? Part 2

Related posts you might be interested in

• Domestic Violence Awareness: Social Media Release
• One Voice Domestic Violence Community Awareness Walk, Part 1
• One Voice Domestic Violence Community Awareness Walk, Part 2
• One Voice Domestic Violence Community Awareness Walk, Part 3
• One Voice Domestic Violence Community Awareness Walk, Part 4

Image by danieljohnsonjr via Flickr

Whew! Ever feel glad the weekend was over so you could go back to work and rest? I almost feel that way. Here’s how last weekend went for us.

FRIDAY

Friday night after work, I stopped by the church building to pick Jennie and Keisha up from a preteen meeting. When got back home, I watched The Bourne Ultimatum while Jennie and Keisha did their thing.

SATURDAY

Saturday we went to our Weight Watchers meeting and then to the Baroque Violin Shop in College Hill to pick up a viola for Keisha. We then dropped her off at a friend’s house.

After this Jennie dropped me off at home, and she went to get a pedicure. I took a nap. When she came home, we watched TV for awhile and then got ready for my 20-year high school reunion.

The reunion was something that I and several others had been working on for several months. It was great to see all the hard work from everyone come together. But it was even greater to see so many folks that I hadn’t seen in 20 years.

SUNDAY

Sunday morning we woke up and went to church. I always get there early since I help run the sound. Yesterday we began a four-week series on Worship, and there were some changes in how the sound and lighting were set up. Adaptability is key in these situations.

It was a great service and left me feeling really grateful that I don’t have to worship God the way he commanded in the Old Testament and very grateful that through Jesus Christ God has come near.

Afterward, Keisha and I went to choir rehearsal for two of the songs we’ll be doing in the next couple of weeks. That has been something we both have been enjoying together.

After church we went to Winton Woods to join up with others from our class and their families. We had lunch and got to spend more time together and have more in-depth conversations than we were able to have the night before. It has been very cool to reconnect with these folks, and thanks to social media tools, we’re able to stay connected.

We hung out at the picnic for a few hours and then returned home to get a grocery list together. I got a phone call from one of the ministers from church, who asked if I could head back to the building to lock it up. The usual person who locks up was out of town, and he was in an appointment with another couple.

Since it wasn’t too far to drive, I offered to help out. I dropped Jennie and Keisha off at the store along the way. We eventually came home, put everything away, and still had a bit of time to relax.

It was quite an unusual weekend, and I’m really glad it was memorable.  How was yours?

This post originates from http://journeyinsidemymind.com

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Greetings from my new iPod touch! Last Friday Jennie, Keisha, and I went to the Apple store in Kenwood Towne Center (map). I now understand why so many folks rave about their experiences there.

After having all our questions answered, I bought Jennie and I each a new 16 GB iPod touch.

It is truly a remarkable thing to behold. Already we are loving that our music libraries can fit on it. And I’ve really started enjoying all the applications that I’ve added.

I am typing this from the WordPress application, for example. I’m still trying to get used to typing here, and I often fat-finger a word or three, .

What applications do you recommend I check out?

11 Years Old
Originally uploaded by danieljohnsonjr

Eleven years later and I can still remember it like it was yesterday. Here are some links to a 2003 series I wrote about her birth:

• Out She Comes! Part 1
• Out She Comes! Part 2
• Out She Comes! Part 3
• Out She Comes! Part 4
• Out She Comes! Part 5

Happy Birthday, Keisha! You make me proud every day. I’m so grateful that God chose me to be your Daddy.

—–
Check out my other blogs:
Daniel Johnson, Jr.
Get That Job!
Journey Inside My Mind
QuotesBlog
Twitter.com/danieljohnsonjr
Connect on LinkedIn
Interesting Things I’ve Read

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Summary

Listener feedback, New Media Cincinnati updates, and celebrating mothers!

Listening Options

• Direct link to file (mp3, 45:55, 42.0 MB)
• JIMM Podcast on MySpace
• Subscribe to the feed
• Add to your iTunes subscription
• From ANY phone: +1 (650) 523-6856 (via Podlinez.net)

Music from the Podsafe Music Network (PMN)

Happy Mother’s Day to mothers everywhere!

Listener Feedback

• Ed Ovett from http://edsmixedbag.com commented on Keisha’s guest host appearance on JIMM 105
• Kevin Reeves from http://kevinreeves.net contacted me because he saw me give out my number on Twitter

New Media Cincinnati Update

• http://twitter.com/newmediacincy is one of the best places to get updates on the group
• http://newmediacincinnati.com redirects to the Facebook group
• Audio from the May meetup posted to http://journeyinsidemymind.com and http://danieljohnsonjr.com
• Working on getting meetup setup for June 2008

Podcamp Ohio is June 28, 2008!

• More info at http://podcampohio.com
• Are you going? Contact me so that we can get together! +1-206-666-5466

Celebrating Mothers

• Keisha shares about her Mommy, Nana, Grandma, and Grandma Linda
• Jennie shares about her Mom and about being a mother to Keisha
• I share about my Mom (aka the Official Mom of Journey Inside My Mind) and about Jennie being Keisha’s Mommy

Music Played

Special thanks to all the independent artists who’ve let their music be played on this episode! (via http://music.podshow.com)

• Rory, “Up and Go” (JIMM Theme)
• Kevin Reeves, “Mother”
• Adam Zampino, “Mystical Vista”
• Beth Hirsch, “All Together”
• Alexander Blu, “Childhood”
• The Alice Project, “I’m Having a Great Day”
• Martin Herzberg, “Walk for Change”
• Rebecca Haviland, “Sleep”

Other Link-Love

• Twitter in Plain English (video)
• Daniel Johnson, Jr.
• Journey Inside My Mind Podcast on MySpace
• Get That Job!
• QuotesBlog
• Follow me on Twitter
• New Media Cincinnati on Facebook
• New Media Cincinnati updates on Twitter
• Sunday Sundown

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Summary

Keisha brings some music she picked out and shares some interviews with Mommy and Daddy.

Listening Options

• JIMM Podcast on MySpace
• Subscribe to the feed
• 1-click iTunes subscription
• From ANY phone: +1 (650) 523-6856 (via Podlinez.net)

Music from the Podsafe Music Network (PMN) and other places.

1. Taxi Doll, “Be With You (Josh Harris Remix)”
2. Girl Stuff, “Big Deal”
3. Girl Stuff, “Secrets”
4. Beatrice Ericsson, “Put A Little Love”

Other Link-Love

Daniel Johnson, Jr.
Journey Inside My Mind Podcast on MySpace
Podcamp Ohio
e-Mail Our Military

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I’ve been listening to the Dave Ramsey Show via podcast on my commute up to Dayton every day. Our family is going to buy his book The Total Money Makeover: A Proven Plan for Financial Fitness. We think this is a good deal. Not sure if we want to wait for it to be delivered or simply go buy it now at the brick and mortar store.

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Weight: 221.6
Pants size: 40

You may be aware that since the second week of January, all three of us have been attending Weight Watchers meetings. I started out at 231 lbs and size 42 waist.

I’m thinking of blogging my continued efforts. I’d have to say that, in addition to the normal things like tracking what I’m eating better and exercising more, attending regular meetings and having our entire family involved has been really helpful.

There’s a whole fatblogging movement going on already here, so I think blogging about my efforts here will help.

Feel free to join the conversation!

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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:
Daniel Johnson, Jr.
Get That Job!
Journey Inside My Mind Podcast
QuotesBlog
Twitter.com/danieljohnsonjr
Are we LinkedIn?

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SUMMARY

+ Running the gamut of emotions in this episode. Well, a little sadness at the beginning, and mostly joy after that.
+ Uncle Walt, Christmas Play, Keisha when she was 3 years old, and, it’s Christmastime
+ Press play.

LISTENING OPTIONS

• Get the show via e-mail!
• Add to your iTunes
• JIMM Podcast on MySpace
• Subscribe to the feed
• From ANY phone: +1 (650) 523-6856 (via Podlinez.net)

MUSIC

Music from the Podsafe Music Network (PMN) and other places.

The Journey Inside My Mind theme is “Up and Go” by Rory

Other Links

• Ed’s Mixed Bag
• KarmynKast
• Audio Gumshoe
• Association of Music Podcasting
• AMPed New Music Weekly
• Follow Daniel Johnson, Jr. on Twitter
• Daniel Johnson, Jr.
• danieljohnsonjr on Utterz
• Journey Inside My Mind Podcast on MySpace

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Take two grown kids, put them in separate cars, have them drive halfway across the country for the first time. In severe weather. The result? This story (17:31).

We have a busy weekend here at JIMM HQ, aka, the Johnson family. Today Keisha and I are heading to church for a 6-hour dress rehearsal for the Christmas play, which is a week from tomorrow. After that, there’s a cast party.

Mom is on her way into town. My cousin Laura is picking her up from the airport, and she’ll be staying with them tonight. Jennie works tonight, so on her way home tomorrow morning, she’ll pick up Mom from Aunt Pat’s.

Mom will come with us to church, where I’m setting up some A/V stuff, play rehearsal, and sax rehearsal. I’m on tap to play a solo during communion.

After that, we’re heading over to Julie’s house to hang out for some food and family time; also getting memorial stuff together for the funeral on Monday.

The Pod 5 will be recording live Sunday night, and I may or may not show up, for obvious reasons. Jennie works Sunday night, too.

(Picture of Loraine Mitchell, her son Walt Mitchell, and her grandson Ken Mitchell, circa 1970)

The viewing is on Monday from 10-Noon. After that the funeral procession will make its way up, stopping by Walt’s house for one last visit at home. He so much wanted to go home so Ken and Julie felt he would appreciate this. Immediately following the graveside, we’ll head back to Julie’s house.

Early Tuesday morning, I’ll take Mom back to the airport.

Thanks again for all your thoughts and prayers. I know we all really appreciate it.

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This audio is all I want to say here at this time. More to come later.

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Mom just called and left us a tearful message on our answering machine:

Hey kids, Kenny just called, and they had to pull the life support today. It’s in the process of being over. Pray that he has a peaceful passing. When I know anything else, I’ll give you a call.

It’s always been in God’s hands.

Last night the doctors were talking about doing a tracheotomy on him, and Ken and Julie discussed it with each other. They were concerned about it leading to another thing, and then another thing after that. They were concerned that his overall quality of life would be nil.

I guess we’ll find out what happens as it happens.

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Just got this from my Mom. Janet was Uncle Walt’s wife, who passed away about 4 years ago.

Ken just called with terrible news.
Walt is in full septic shock. his white blood count is extremely high and he has a high fever. They are giving him megadoses of every possible antibiotic they can. They also have him on full blown diaysis.They are willing to risk his kidneys to save his life.

We are being told to prepare for the worst.

I still believe in miracles and he will have one if that is God’s will.

If not I pray for a peaceful passing to the other side where I know Janet, Mom and Dad will be waiting for him.

I still believe anything’s possible, and God definitely has a plan. Please pray also for my cousins Ken and Julie, and their families. They’ve been going through this with their Dad.

Related tags: journey+inside+my+mind journeyinsidemymind jimm hypertrophic+cardiomyopathy heart+transplant daniel+johnson+jr

Yesterday I updated Journey Inside My Mind with some urgent news about my Uncle Walt Mitchell, who has been having complications related to his recent heart transplant. I mentioned I’d update again once I’ve heard anything else.

Here’s an update my Mom emailed last night at 9 PM Eastern to friends and family:

Ken just called and said they opened Walt up, and his chest cavity was filled with blood. They presently have his chest cavity packed and have basically left his chest wall open and covered with a dressing.

They know they have to go back in but are hoping they can hold off until sometime Friday to give his body some chance to recover. Today he has received 20 litres of blood.

He has spiked a 102 F fever now too.

He did come to at one point and was able to shake his head and mouthed “I love you” to the kids.

They are keeping him heavily sedated, of course.

The docs told the kids with all the technology, all the medications, and all the skill, it has pretty much come down to a crap shoot.

Ken said it’s pretty much coming down to a miracle, and I told him my God is in the miracle-making business.

Keep praying. Prayer has brought him this far, and it can bring him through this.

I love all of you and want to wish you a Happy Thanksgiving. Maybe we will get better news tommorow.

I continue to be amazed at how much something like this brings people together. Our family is so encouraged and inspired to know that you are praying. Please keep it up.

I’ll be sure to post back when I get any news.

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Mom sent an email last night with the following update on my Uncle Walt:

Ken just called. The new heart is in, but Walt is bleeding profusely. And he is filled with infection. They just now are taking him back in to surgery again to try to stop the bleeding and figure out what to do about the infection. The doctors are not optimistic but as we have learned The Great Physician can do anything.

Please keep praying.

I was just chatting with her, and she added:

The doctors have taken him back to the OR to try to stop the bleeding. This was in the past hour. If ever Walt needed prayer this is it. I haven’t slept all night. People all over are praying.

Ken said he’d call tonight (around 7 PM Eastern) with an update unless something worse has happened. So let’s hope I don’t hear from him until after 7.

Thank you all so much for having remembered my Uncle Walt in prayer; please keep praying. I’ll be sure to post an update here when I get news.

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My Uncle Walt Mitchell has been in a Cleveland Hospital for complications related to hypertrophic cardiomyopathy. His Mom died from this when she was about his age. His brother and son also have this condition. More background info can be found at Update on My Uncle Walt – Prayer request. He was recently placed on a mechanical heart.

I got this update from my Mom, his sister, a couple days ago:

Ken just called. Walt had to have another surgery today. Apparently he had a lot of fluid building up in his chest again.

When they opened him up they discovered he has some kind of fungus growing. This is supposed to be the worst side effect of the artificial heart. They aren’t sure they are going to be able treat the fungus effectively. One doc has hopes and others don’t.

As long as he has the fungus, he won’t be put back on the list for a donor heart. If he can’t get rid of the fungus, he will be doomed to live out what is left of his life attached to the artificial heart, and eventually the other organs will be compromised by the fungus.

Ken is going to ask him tomorrow in a discreet way if that is the case what would his Dad want.

From the sibling viewpoint after we went through what we did with Mom, I told him we would not want him to suffer or just waste away or be in pain.

Ken put what life has been like for Walt the last few months in perspective. He said, “For the last 3 1/2 months my Dad hasn’t peed in a toilet, taken a shower, washed his own hair, ate a meal at a table, smelled fresh air, or felt the sunshine. When he went into the hospital it was summer; now it’s fall.”

Anyone who sent him a card – Ken wanted those to know they meant a lot to Walt and did cheer him up.

I told Ken when he is out of ICU and back in a regular room, to let me know his new room #, and we can continue to send cards.

Please keep up the prayers. If Walt ever needed them he needs them now.

I don’t want to think that God brought him this far, and he won’t leave the hospital with a new heart; yet I know it’s all in His hands.

Thank you for your continued prayers.

Related tags: journey+inside+my+mind journeyinsidemymind jimm daniel+johnson+jr hypertrophic+cardiomyopathy mechanical+heart artificial+heart

October is National Domestic Violence Awareness Month. I saw this video from YouTube and had to share it with you. It comes from 20/20, and I am very grateful that ABC has let it be up there.

It’s over 20 minutes long, and it contains graphic content. Domestic violence is real. It’s disturbing, and it’s outraging.

[youtube=http://www.youtube.com/watch?v=iJfIZZqOnMM]

If you or someone you know is in a domestic violence situation, there is help.

National Domestic Violence Hotline: 1-800-799-SAFE (7933)

Please head over to the Journey Inside My Mind Podcast throughout October, because I’m posting content from the recent One Voice Domestic Violence Community Awareness Walk. Or, if you have iTunes, add the show with a single click. That way you’ll get new content as it gets released.

Help stop domestic violence!

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