• Should we make it face-to-face only or do some sessions by web conference (consider rising gas prices or folks living too far from others with similar experiences/needs)?
• Where should we meet?
• How large or small would the group be?
• What are the needs of the hearing impaired community and their friends / family?

This is a perfect example of where we will need to “Connect to Create.”

Living It Up

We’ve been so busy enjoying the benefits of the implants that I haven’t made time to update this blog. Shortly after the second implant was healed up and activated, I landed a new job, requiring us to move 4 hrs away from UNC’s CCCDP. C-Note’s speech with two implants has skyrocketed. Her language is much clearer, she is now able to read (at age 6), and she doesn’t seem as tired at the end of the day from the technology. We were able to find a certified AV speech therapist nearby that really does a fine job with our daughter and have elected to home school her.

Our church in VA bought two receivers (miniature antenae) for her cochlear implants to allow us to use an FM microphone with her implant. Using this combination, we are able to speak to our daughter from 50 feet away, through walls, or across a store. The FM system worked so well that we bought a second microphone and often use both of them simultaneously to allow our daughter to hear us talk to her from the front seats of the car or in a very noisy pizza parlor.

The largest issues we deal with now are related more to rain getting on the implants or the implants getting erased from static discharge on playground slides. We’ve been so busy enjoying the relief of our daughter’s new access to sound that I often don’t find myself having much to say on this blog other than it was totally worth it.

Yesterday, the day of surgery, we ended up getting lost on Hwy 98 west in Wake Forest, NC. I’ve driven that road a thousand times, but what used to be “drive straight all the way to Durham” turned into “hang a right just outside of Wake Forest” due to some construction. Instead of dodging work traffic, we ended up taking Falls of Neuse Rd. directly into rush hour traffic on a miserable, rainy morning. Hwy 540 was bumper-t0-bumper. I pulled over on the side of the road and called my brother to get him to pull up traffic on the internet. “Looks like there are two accidents ahead of you…” he said. Before he could finish, I hung up the phone and hit the gas to take Creedmoor Rd. back up to 98. It was truly the scenic route but at least we were rolling forward. We blazed into the UNC hospital just 15 minutes late, had prayer with our pastor, and watched the staff whisk our little 5 year old back into the outpatient area.

The surgery lasted about 2 hrs (they had scheduled it for 3) and we we discharged that afternoon with about 3 prescriptions: one for pain, one for nausea, and one for antibiotic. Once we made it home, I could tell that the stress was getting to us.

“Okay, I need to goto the pharmacy to get the prescriptions filled.” I said.

“After what happened last time we brought her home from surgery, I don’t want to be here alone with her. I’m scared.” my wife replied.

“Okay, fine. I’ll stay here and you go.” I proposed.

“No way, I’m not leaving my baby after she’s just had major surgery?!” she said.

Ultimately, I ended up hitting the pharmacy, the Chinese food place, and Sonic (great fountain drinks). I made it home just in time to see my daughter getting restless.  Within 30 minutes or so, my little girl was vomiting on her bed. I had to support her head to keep it above the vomit so her compression bandage would not get soaking wet.  Feeling the fluids run down my elbow, I knew at that moment what my next post would be for this blog. I need to write something about tips to help parents cope with this whole first 24 hrs post op thing.

“Honey,” I screamed, “she has thrown up on the bed and I need your help to keep it out of her hair.”

Finding myself holding the torch to the “Cochlear Implant Recovery Olympics” once again, I closed my eyes, put my game face on, and lip-synced to my little girl “Daddy’s here. Everything is going to be okay.”

When C-Note used hearing aids, we would use her FM system to turn her hearing aids into wireless headphones, which was SWEET. Now that she is using just the CI, the sound of the DVD playing openly in the back of the car can get a bit old (even before pulling out of our driveway).

Today, we are going to try out a special battery sleeve that allows us to run a soft wire from the DVD directly into the part of the implant that looks like a hearing aid. If it works, I will be the happiest father on the road. If not, I will personally want to dot my eyes out.

We will also attempt to swing by a REDBOX and rent a movie (or two) for $1/each to add a little variety to the trip. Wish us luck!

When I consider that the technology on my daughter’s head is worth more than my two cars combined, I look at the world a little differently. Toilets, rain showers, and even open beverages become threats. One quick twist of the head can result in the implant being thrown from C-Note’s ear like a cowboy from an over sized bull. The end result can be a missing (or worse, wet) implant. I’ll never forget the shock of telling my girl to wash her hands after potty, only to look back at her and see her bent over the toilet, face forward, trying to listen to the sound of the pee-pee flushing away. The processor was just dangling haphazardly over the toilet bowl, swinging helplessly by the thin wire from the magnetic coil on her head and a makeshift shoestring attachment we placed on the battery pack.

What seems to work best is placing some double sided wig tape between the processor and the ear cartilage. Apparently, wig tape is not the same as toupee tape, which can hold onto the ear much stronger and take a little more effort to remove. What we do next is attach one end of a shoestring looking cord to the battery pack and clip the other end to our daughter’s collar.

Med-el offers a rubber loop, called a Huggie, that is supposed to hold the implant to the ear. The company sent us one to try out for free, but it doesn’t work very well for girls without big ear lobes.

Last week, we took our girl to ballet class for the first time in months and was very impressed with how the tape/shoestring combination worked. C-Note tumbled on a mat and ran around the dance floor a lot, and the implant stayed in place like a champ. The only downsides to this approach are that the clip tends to pic the dancewear and the sticky tape can also stick to long hair instantly and be kind of tricky to remove if you are not careful.

While placing the hearing aid on my daughter’s head to test C’s hearing, my wife found a good amount of dried blood on the earmold. She took C-Note to the doctor at once. The pediatrician was unable to confirm whether or not the eardrum had been compromised; however, he did give us some eardrops to prevent infection. How in the world did she damage the inside of her ear?

Apparently, C was trying to wake up her ear sleeping ear with a Q-tip. She ended up brusing and scratching the inside of her ear pretty badly. The blood on the earmold of her hearing aid was just old blood from where she had placed the Q-tip. Lately she has been fascinated by opening locked doors with the end of a Q-tip, so we suspect that she broke the Q-tip in half and jammed the half with the stick in her ear.

Even though we started the AV approach with hearing aids, it seems that all the hard work is paying off.

Just one week after C’s CI Activation, her Speech-Language Pathologist e-mailed the following message to us and C-Note’s teachers:

…Here’s what Carina did today:

She identified knocking on the wall, and imitated all Ling 6 sounds at close range, and all except /s/ from 6ft.

She identified the following songs (open set): Happy Birthday, Twinkle Twinkle, Itsy Bitsy Spider, Where is Thumbkin, 5 Little Monkeys.  She was unable to identify Open Shut Them or Mr. Sun.

She identified the following Learning to Listen sounds from a closed set of 15:  dog, airplane, ghost, rabbit, slide, cow, car

She responded appropriately to “Gimme 5”, “Can I have a hug”, “What happened” , “What are you making” through audition alone ( I think there were some other phrases too, but I couldn’t write them all down as we went)

She’s doing great!…

From the tone of the note, it sounded pretty positive.

The lady who programmed C’s CI wants us to try to get from program 1 to program 4 within two weeks of activation. I think each program is progressively louder. So far, we’ve found that on the days when C’s volume is increased to the next level, she wakes up dizzy for about an hour the following day. Is this normal?

Before leaving for work, C-Note started pulling on the back of my shirt and wouldn’t let me out the door. Having just sprang out of bed, she wasn’t wearing her hearing aid or CI at the time, but she had something very important to say and was determined to make sure I got the memo. She pulled me to the foot of her bed and turned my knees so that they were facing out the windor. Next, she parted the curtains and raised the blinds and looked me dead in the eye. “Daddy, will you watch the leaves fall with me, please?” Then she climbed into my lap and pulled both of my arms about her and set her head on my shoulder. I closed my eyes and pulled her close to me and we watched the leaves falls across the yard like snow.

In that brief time I wasn’t worried about making it to work on time. I was enjoying my priviledge of being a father, C-Note’s father, and hoping I never forgot this moment. “No implant, Daddy, just leaves.” she said. I nodded okay and squeezed her even tighter, while resting my chin lightly against her pretty, black hair. A little later, we said our good-bye’s and I found myself back in go mode. I’ve driven the country roads between home and Creedmoor, NC more times than I ever thought I would, but seeing the leaves falling like snow, made me think about something in a whole new light.

In my haste to make sure that my daughter can hear me, am I making equal effort to make sure that I’m hearing her? “No implant, Daddy, just leaves.”

I picked up my Blackberry and called my wife immediately, “Hon, I think C is trying to tell us something and I want to run it by you to see what you think. She’s been wearing her implant continuously since activation, but this morning, she didn’t want to wear it while we were watching the leaves. Do you think there might be times when she would enjoy going unplugged? I don’t think it would be a rejection of the technology as much as it would be a desire to just be C. What do you think?”

It didn’t take long before we agreed to try to be more in touch with times when C wanted (needed?) to tune out. When I came home from work, it was different. My girl didn’t hear me opening the door and didn’t come running as she does every afternoon. I rounded the corner of the house and found her coloring contently at the kitchen table while my wife was heating up some homemade soup.C smiled when I kissed her on the head and then got back to business drawing stick figure princesses at a party. I sat at the table and chatted with my wife about Facebook updates and world news (in that order) and watched C-Note color for a bit. It was nice.

Though less than 24 hrs. ago, I honestly don’t know (or care) about how much time C spent wearing her implant yesterday. The most important thing is that we came to a new understanding of what we can do to listen to each other and actually did something about it to help us truly “Be Here Now.”

Red was Non-Negotiable

What does Mommy sound like? “A duck,” she said, “Quack, quack, quack!”

What does Daddy sound like? “A wobot,” she said, straightening her forearms and moving them up-and-down mechanically.

There was no doubt in anyone’s mind that today was C-Note’s big day. She told everyone at preschool that she would be getting her implant today. The thought of being able to hear electronically never really crossed her mind as anything of importance. All that really mattered was that her new ear would be red, just like the cardboard cutouts she picked during her recovery from surgery. The same cardboard cutouts that had become part of her new dress code for every stuffed animal in her possession. The same cardboard cutouts that would come to represent a certain kind of hope that perhaps only parents of a hearing impaired child could understand.

The activation of the Med-El CI itself only lasted 50 minutes, tops. Having been practically raised in a sound booth, C was no stranger to auditory testing. In this case, no soundbooth was necessary in that all of the sound would be occuring within the little cochlea of a little 4 year old girl. A small cord, dangling from my daughter’s implant, connected her to a computer. Beeps were sent from the PC, down the wire, and into C’s head one at a time, at different loudnesses, to help hone in on C’s upper and lower thresholds of comfort.

The remaining time was spent learning all the do’s and don’ts of the equipment. I’m really glad I leafed through the owner’s manual last week so that everything would not be brand new for me. Prior to the activation, my wife and I treated ourselves to some appetizers at the CheeseCake Factory while our daughter was in pre-school. It’s amazing what some cheese sticks, quesadillas, and chocolate cheesecake can do to take your mind off growing piles of medical bills. Considering that the only time we really get to go on a date is during IEPs and CI surgery, we thought we’d mix it up a bit and try something new.

While I was learning how to assemble/dissassemble the device, my wife was rapidly completing forms related to insurance, warranty, and marketing questions. As for C, she was eating a cupcake that her teacher brought her and playing with a toy fan that happened to be in the office from a competitor CI company.

The drive home was pretty uneventful. We’ve often heard that new CI wearers HATE the sound of road noise, but our daughter didn’t seem to mind. The Med-El welcome kit included a stuffed animal named Med-Elephant, a case for every subcomponent, a 3 ring binder, a red bag, a black mini-portfolio for ear stuff, and a toy organ that played animal noises whenever you pressed a key. It was kind of entertaining to hear chirping and baa-ing from a box in the cargo area with every turn of the SUV.

After C’s bath time, we spent the remainder of the evening learning about the cochlear implant by just seeing what it could and could not do. C-Note learned that the head magnet (aka coil) won’t stick to Mommy or Daddy’s head. Similarly, Mommy and Daddy learned that clapping hands (like restaurants do when singing a birthday song) doesn’t sound like hands clapping but more like “bing, bing, bing!”

All-in-all, this was a really good day for us. The hardest part was seeing C miss simple hearing questions that she used to nail with hearing aids. We know that’s part of the adjustment to the CI world but it was really tough to watch. The best part was hearing my wife say “I love you, Carina,” with her mouth covered by her hand and watching in utter amazement as my little girl smiled back and effortlessly said, “I love you too, Mommy.”

Although she wasn’t wearing her hearing aid at all at that moment, the smile on Carina’s face as she looked so beautifully back down at her play table will forever be emblazoned in my heart as something that I so needed to see before going to bed for the evening. It’s funny, my wife just commented that little C looks like she is smiling in her sleep. (C-Note always used to be extra happy at times when her hearing was doing well.) For lack of a better expression, I think we got one right tonight. Yes, I think we got one right.