“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)

Mood: hilarious
Eating: chocolate chip cookies
Watching: the video you see on this post

In this video Keisha and I talk about what she did this morning at the YWCA, her upcoming birthday week (yes, I said week), and Harry Potter. Hilarity ensues. Click play to watch.

If you want to comment, you can leave it here, email it, or call it in to (206) 666-5466.

Related tags: journey+inside+my+mind journeyinsidemymind jimm daniel+johnson+jr

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.

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

A father passing by his son’s bedroom was astonished to see the bed nicely made up and everything neat and tidy. Then he saw an envelope propped up prominently on the pillow. It was addressed, “Dad”. With the worst premonition, he opened the envelope and read the letter with trembling hands:

Dear Dad,

It is with great regret and sorrow that I’m writing you. I had to elope with my new girlfriend because I wanted to avoid a scene with you and Mom.

I’ve been finding real passion with Joan and she is so nice. I knew you would not approve of her because of all her piercings, tattoos, her tight motorcycle clothes and because she is so much older than I am but it’s not only the passion, Dad, she’s pregnant.

Joan says that we are going to be very happy. She owns a trailer in the woods and has a stack of firewood, enough for the whole winter. We share a dream of having many more children.

Joan has opened my eyes to the fact that marijuana doesn’t really hurt anyone. We’ll be growing it and trading it with the other people in the commune for all the cocaine and ecstasy we want.

In the meantime, we’ll pray that science will find a cure for AIDS so Joan can get better; she sure deserves it!

Don’t worry Dad, I’m 15 years old now and I know how to take care of myself.

Someday, I’m sure we’ll be back to visit so you can get to know your grandchildren.

Your son, Chad

P.S. Dad, none of the above is true. I’m over at Tommy’s house. I just wanted to remind you that there are worse things in life than the report card that’s in my desk drawer.

got this via email from Jeff

Related tags: journey+inside+my+mind journeyinsidemymind jimm daniel+johnson+jr jokes humor funny parenting

During some recent mild weather this past week, my wife and I spent some time outside, trying to teach our daughter how to ride her brand-new bike. The experience reminded me of something about life:

I told our daughter that, as she learns to ride her bike, she will fall down. She needs to get comfortable with that fact and not be afraid of it. We got off the bike and went over to the grass. I then told her to fall down. Then I did. I got back up and told her to get back up. The ground is softer than pavement, so it was a good starting point.

Then I had Keisha run at me and knock me down. When I got back up, I told her to do it again, and this time when she pushed, I pushed back. We both fell down. I got back up, but she got upset and sat there on the ground. She was mad at me and wanted her mother, who tends to baby her more than I.

I’ve heard it said that the best way to practice martial arts for self-defense is to experience getting hit. Pulled punches don’t really prepare someone for the real thing.

I think there’s a real good lesson about life here. We will fall down and we’ll get knocked down. Circumstances will happen that knock the wind out of us. We shouldn’t be so afraid of this happening that we don’t do anything. I think I’ve been prone to that behavior in the past I have missed golden opportunities.

When we get knocked down, we get back up and try again. When we fall down, we get back up. That’s the only way to get better.

Related tags: getthatjob get+that+job job+hunt job+search career+advice networking professional+development dan+johnson life+lessons overcoming persistence determination courage

crossposted to getthatjobonline.com

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.

I must have inherited it from my Dad. I remember when I was in high school that he would set his alarm clock to wake him up with the Boston Pops‘ rendition of John Phillip Sousa’s “Stars and Stripes Forever,” much to the chagrin of my stepmother.

Over time I’ve considered various ways of waking Keisha up in the morning, whether for school or some other reason:

I’ve waken her up in the past with Baha Men’s “Who Let the Dogs Out?”. I also remember playing a march-type song called “Weenie Man” for her.

Sometime during the last month of school, she came home and just started singing something. Because she’s hard of hearing and has a related speech impairment, sometimes the actual words of songs are not what she sings. I cannot remember what it was that she was singing, but Jennie and I determined that she was singing “Let’s Get It Started” by the Black Eyed Peas.

Yesterday I was at the library, and I checked out a copy of “Now This Is Music 17″. The first song is “Let’s Get It Started.” That’s what I chose to play for her this morning. Of course the nice thing about the CD player is that you can set it up to repeat the one song over and over again.

It looks like it did the trick. I can hear that Keisha has gotten up.

Here’s the news:

• On Track To Move
• Definitely MY Daughter!
• Guitar Man

On Track To Move

On Monday I posted about our Potential Moving Derailment.

Yesterday my wife called to tell me she got the job in Cincinnati (Cincinnati Interview – Ready, Set, Go). Last night she handed in her resignation notice, in which Monday, March 21st, will be her last day.

We had hoped to receive an offer letter in the mail, but the woman from the hospital who called mentioned that the nurse in charge of doing that had been so busy that she hadn’t typed something up.

(Aside: the lady who called asked Jennie if I was in broadcasting or something like that, because of how the outgoing message on our answering machine sounds. I could be in radio, dontcha know!)

Jennie’s first day is April 4th. Night, really, since she’s working 3rd shift.

We still need to find an apartment, and yesterday Jennie made a couple of appointments this Saturday for us to look at some places.

I’ve been concerned about my job here, but my boss yesterday said that they could work things out, if need be, for me to do some development work at home and not have to drive up here every day. We’ll see.

Definitely MY Daughter!

I love making Keisha laugh, and I can tell that she’s picked up my sense of humor. Last night we went to the library for a little while to return some items. After that, we drove to the gas station so that I could pay through the nose to fill the tank up halfway.

Whenever we are in the car – just the two of us – we’re always kidding around with each other. For example, Keisha started making scary faces at me, and I would glance over at her and scream out as though I was scared. That would make her laugh, and, of course, egg her on.

After I’d finished paying through the nose at the pump, I climbed back in with my back to Keisha. I’d put on a silly face to surprise Keisha, but, when I turned toward her, she had a silly face of her own to show me!! We both laughed at each other.

Another thing I love to do to make Keisha laugh is some slapstick – a la Buster Keaton or Johnny Depp’s character Sam in Benny and Joon.

As we started toward the steps of our apartment building, I pretended that one of my legs kept wanting me to turn around and go the other direction. I had Keisha laughing so hard she nearly wet herself!

Guitar Man

I’ve been going through the songbook we use at church to learn to play the chords on my guitar. I’ve especially wanted to learn the songs we sing in Kid’s Kingdom. Thankfully, most western music is based on a three-chord progression, and this has been the case for most children’s music.

Sometimes I get lucky and there are only two chords used; the root and the dominant fifth. In rare occasions, I only need one chord.

It’s been fun, though, to play these songs at home. Last night Keisha and I sang a few before she went to bed.

FunBrain.com – Kids Center has loads of cool games for Kids of all ages. I need to make sure my daughter knows about it.

These little snippets come forwarded by Mom via email from Karen (Thanks!)

• NUDITY
• HONESTY
• OPINIONS
• KETCHUP
• MORE NUDITY
• POLICE #1
• POLICE #2
• ELDERLY
• DRESS-UP
• DEATH
• SCHOOL
• BIBLE

NUDITY

I was driving with my three young children one warm summer evening when a woman in the convertible ahead of us stood up and waved. She was stark naked! As I was reeling from the shock, I heard my 5-year-old shout from the back seat, “Mom! That lady isn’t wearing a seat belt!”

HONESTY

My son Zachary, 4, came screaming out of the bathroom to tell me he’d dropped his toothbrush in the toilet. So I fished it out and threw it in the garbage. Zachary stood there thinking for a moment, then ran to my bathroom and came out with my toothbrush. He held it up and said with a charming little smile, “We better throw this one out too then, ’cause it fell in the toilet a few days ago.

OPINIONS

On the first day of school, a first-grader handed his teacher a note from his mother. The note read, “The opinions expressed by this child are not necessarily those of his parents.”

KETCHUP

A woman was trying hard to get the ketchup to come out of the jar. During her struggle the phone rang so she asked her 4-year-old daughter to answer the phone. “It’s the minister, Mommy,” the child said to her mother. Then she added, “Mommy can’t come to the phone to talk to you right now. She’s hitting the bottle.”

MORE NUDITY

A little boy got lost at the YMCA and found himself in the women’s locker room. When he was spotted, the room burst into shrieks, with ladies grabbing towels and running for cover. The little boy watched in amazement and then asked, “What’s the matter haven’t you ever seen a little boy before?”

POLICE # 1

While taking a routine vandalism report at an elementary school, I was interrupted by a little girl about 6 years old. Looking up and down at my uniform, she asked, “Are you a cop?” “Yes,” I answered and continued writing the report. “My mother said if I ever needed help I should ask the police. Is that right?” “Yes, that’s right,” I told her. “Well, then,” she said as she extended her foot toward me, “would you please tie my shoe?”

POLICE # 2

It was the end of the day when I parked my police van in front of the station. As I gathered my equipment, my K-9 partner, Jake, was barking, and I saw a little boy staring in at me. “Is that a dog you got back there?” he asked. “It sure is,” I replied. Puzzled, the boy looked at me and then the back of the van. Finally he said, “What’d he do?”

ELDERLY

While working for an organization that delivers lunches to elderly shut-ins, I used to take my 4-year-old daughter on my afternoon rounds. She was unfailingly intrigued by the various appliances of old age, particularly the canes, walkers and wheelchairs. One day I found her staring at a pair of false teeth soaking in a glass. As I braced myself for the inevitable barrage of questions, she merely turned and whispered, “The tooth fairy will never believe this!”

DRESS-UP

A little girl was watching her parents dress for a party. When she saw her dad donning his tuxedo, she warned, “Daddy, you shouldn’t wear that suit.” “And why not, darling?” “You know that it always gives you a headache the next morning.”

DEATH

While walking along the sidewalk in front of his church, our minister heard the intoning of a prayer that nearly made his collar wilt. Apparently, his 5-year-old son and his playmates had found a dead robin. Feeling that proper burial should be performed, they had secured a small box and cotton batting, then dug a hole and made ready for the disposal of the deceased. The minister’s son was chosen to say the appropriate prayers and with sonorous dignity intoned his version of what he thought his father always said:

“Glory be unto the Faaaather, and unto the Sonnn ….. and into the hole he gooooes.”

SCHOOL

A little girl had just finished her first week of school. “I’m just wasting my time,” she said to her mother. “I can’t read, I can’t write and they won’t let me talk!”

BIBLE

A little boy opened the big family bible. He was fascinated as he fingered through the old pages. Suddenly, something fell out of the Bible. He picked up the object and looked at it. What he saw was an old leaf that had been pressed in between the pages.

“Mama, look what I found”, the boy called out.

“What have you got there, dear?” With astonishment in the young boy’s voice, he answered, “I think it’s Adam’s underwear.