In the middle of winter, it’s always fun to look ahead to the summer. Summer time also means it’s time for Ear Community’s Microtia and Atresia Summer Family Picnics. The picnics provide an incredible opportunity for Microtia and Atresia families to come together, share experiences and make new friends. Medical professionals also join in the fun and are available to answer questions and help to educate families on options for hearing loss. Families will even be able to test out the newest state-of-the-art hearing products.
Robb Boss believed he was doing “just fine” coping with his conductive hearing loss. A successful oncology sales representative with a leading pharmaceutical company, Robb’s personable and intelligent communication with colleagues and clients has led to much success and satisfaction for the 41-year-old. But, a brief conversation with a co-worker helped Robb see the downside of his untreated unilateral conductive hearing loss and take action.
After “pretending” to hear nearly his whole life, Robb decided that improving his hearing would improve relationships at work and with the people who matter the most– his family. “I was living my life pretending I could hear, Robb says. “It started hindering communication within the family and professionally. We have five girls and they all have tones of voices that I just couldn’t hear at all.”
In honor of the amazing connections that happen at Ear Community’s Microtia and Atresia Summer Picnics, we’ve asked attendees to share their experiences with you here on our blog. This week, you’ll hear from Shannon Katuszonek, a mom who is forever grateful for finding her strength through Ear Community.
Here’s Shannon to tell her story.
We had no idea my daughter, Ava, had a condition. When she was born it was quite the shock. As if learning to understand what her little ear meant wasn’t enough, she was our first child, so we had little frame of reference for newborns in general.
So, we took in whatever information the doctors gave us. We knew she failed the newborn hearing screening test. Then, our Microtia Pediatrician started telling us about the other things that could be wrong with her. “She could have Goldenhar Syndrome, a heart condition and more. But, we’ll just wait and see how she develops.”
There we were…
You’re looking at this beautiful little baby that you’ve been waiting for, and now you’re so overwhelmed. You can’t enjoy the moment, because you’re so worried about all of the things that mighthappen.
My 14 month old daughter Olivia was born with Microtia and Atresia of her left ear. I came across Ear Community shortly after she was born. The hospital knew absolutely nothing about her condition. No references or literature. It was a very emotional and confusing time.
As we’ve mentioned many times, one of our favorite things about summer is that it’s time for Ear Community’s Microtia and Atresia Summer Picnics. This year, in honor of the amazing connections that happen at these picnics, we’ll be sharing the experiences of attendees. We’ll start with an overview from the Founder of Ear Community, Melissa Tumblin.
“We had 220 people RSVP for our California picnic that took place in Pleasanton, California on June 21, 2014. We had Cochlear, Oticon Medical, and Stryker CMF as sponsors who attended to help families learn about their options. We had an anaplastologist there helping families not just learn about prosthetic ears, but to also physically see and touch them. Many people tune out the option for a prosthetic ear until they see how real they look and how well they can be matched to skin. Many times, in a line up, people can not pick out who is wearing a prosthetic ear because they look that real and blended,” Melissa explained. “We also had Dr. Joseph Roberson who joined us from the California Ear Institute as one of the world’s leading Otologists/Neurotologists for atresia repair and also Dr. Grant Fairbanks who helped families learn more about the rib graft option for external ear reconstruction.”
Each summer the Ear Community hosts picnics around the world that help bring Microtia and Atresia families together. The picnics offer a platform for the community to come together and share experiences. Medical professionals– Microtia and Atresia repair surgeons, ENTs, audiologists and therapists– also join to share information on the options for living with hearing loss. Families are even able to test the latest hearing products at the event.
As a sponsor and active participant in the picnics, we can’t think of a better way to spend a summer day.
Here’s when and where this summer’s picnics will take place: