This is Me. More than DD.
After having two sons, Kelli Love gave birth to her first baby girl, Elliana Burns. She was thrilled to add a splash of pink to the family dynamic. The pregnancy was uneventful, and the delivery was standard, so the family seemed to be rounded out nicely, and Kelli was anxious to get home. There was one minor hiccup while she was in the hospital. Elliana, or Elli as they call her, failed her hearing screening. The specialists shrugged it off, so Kelli did too.
“If they were not concerned, then I trusted that,” she said. “I probably shouldn’t have.”
Once they arrived home and settled into a new routine, Kelli noticed that Elli wasn’t reacting to her voice. After a doctor’s visit, Elli was diagnosed with Congenital CMV, profound deafness of the left ear. The right ear is hearing but will continually be monitored until she is five or six years old. There is a possibility that she could go deaf in both ears, and all they can do is monitor and wait to see if that happens, which is stressful for mom.
Kelli was told that the diagnosis was likely caused by a virus that Kelli had experienced during pregnancy.
Luckily for Elli, her mom is more than prepared to tackle this challenge. Kelli is a home health pediatric nurse. For the last four years, she has worked with children who have multiple disabilities, including speech and language barriers. Her experience in her career has been a blessing as she enters this journey with her daughter.
“I am using my skills from my job to work with Elli at home,” Kelli said.
As soon as Elli’s diagnosis was finalized, the family got busy. Elli is a year old now and has had cochlear implant surgery on her left ear. Kelli is diligent about assuring she is wearing it. The entire family is learning sign language too. The family works a lot with practicing speech sounds and signs. Kelli said that Elli’s older brothers are very protective and supportive. “The boys are very involved with trying to learn sign language for their baby sister.”
Kelli does have some worries. “My biggest fear is that she will fall behind with her development because of her hearing loss. We are grateful to have the Marion County Board of Developmental Disabilities and Help Me Grow to help us navigate all of this.”
“She is extremely observant and uses very dramatic facial expressions which we all find so cute and funny. Everyone is always talking about the faces she makes when talking or being talked to,” Kelli said of her daughter. She added that she’s extremely loving but can be very headstrong and independent. She knows what she wants and is determined.”
All perfect traits to combat the challenges of a disability.
Current goals for Elli include close monitoring of her progress to ensure she’s where she needs to be with her speech. We also need to watch that she is wearing her implant all day while awake. So far, so good on both fronts.
“My dream is for Elli to be able to live a completely full and wonderful life no matter what obstacles arise in the future with her hearing or anything else for that matter,” mom said.
Kelli would like to create more awareness around CMV. “Most people have never heard of it, and it can greatly affect a baby,” she said of the diagnosis. “I want the community to know that children and adults with developmental disabilities are no different from anyone else and capable of many wonderful things in life.”
Well said, Kelli.
We have no doubt that Elli and her entire family will be just fine as they learn and grow through their journey.
March is Developmental Disability Awareness Month. The Marion County Board is proud to tell the stories of those served, their successes, and their challenges to better inform the community of the role MCBDD plays in Marion County.