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
"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.