My wife and I have been discussing the need for a Hearing Impairment group here in the Roanoke/Lynchburg/Danville, Virginia area. My wife has an elementary school teaching background and currently teaches homeschool. I’m a project manager with an engineering background.
- 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.
Since the recovery from the first CI, my family has been so busy enjoying it that I haven’t had (made) time to write. My how time flies. After about 8 months, we elected to have the second ear, which is currently deaf, implanted. One of the main reasons was so that our daughter would have a backup. Furthermore, the other bilateral families say that two implants makes a HUGE difference in their child(rens)’s ability to enjoy and respond to sound.
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.”
One of the best devices ever invented is the portable DVD player. Not only does it entertain your child for hours, but it makes the miles just melt away. However, as a parent, sometimes you just don’t want to hear Barney songs for the next 200 miles. At times like these, some kind of headphone attachment is in order.
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!
From day 1 of activation, we’ve been wrestling with different ways to keep the implant on C-Note’s ear. I think it should be illegal for any audi to allow a child to exit the office without providing some way of affixing the implant to some area of a child’s person or clothing.
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
C-Note’s hearing fluctuated a great deal during her time using bilateral hearing aids. Whenver her hearing was down, I told C that her ear was asleep, never broken. One of the main motivators for us to pursue cochlear implant technology was to give our daughter access to consistent sounds. Ironically, the day that we activated C’s implant was the day that sound in her good ear dropped to the point where she was was no longer benefitting from her hearing aid.
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.
For over 2 years, my wife and I have been advocating for AV Therapy for our daughter from the point that we learned that her hearing loss was progressive. Click HERE to read more about the AV approach.
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?
It’s easy to get caught up in ambitions to try to squeeze language into your child every waking moment. Yesterday morning, something happened that “Hit me like a ton of bricks…” and helped my family keep things in check.
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
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
Until C-Note’s cochlear implant gets activated, we are relying heavily on her unaffected ear, the one with the hearing aid. We are currently using a the Phonak Exelia and having numerous problems with it. We sent one of the two HA’s to Phonak for repair about 3 weeks ago for issues related to the FM turning on-and-off. Once it came back, it made this weird synthetic noise that sounded kind of like water. Listen to this recording of the defective hearing aid chirping away in a silent room. Has anyone else encountered this problem?
"Hi. I'm Carina. What's your name?"
That's usually the first thing you hear when C-Note sees you. Her favorite past times are meeting new friends, hosting real and imaginary parties, and drawing pictures of everyone and everything, yourself included.
As C-Note's father, I stand in complete amazement of this young lady, who God has chosen to complete our family. As an adopted child with a hearing impairment, she experiences levels of joy that surpasses many who do not face similar challenges. A spunky kind of girl, she has also been affectionately nicknamed Wiggly, Jumping Jelly Bean, Wii Girl, and of course, our precious C-Note.