They're sharing Lilly's hearing journey

Storytime at Cloquet's Public Library has been an integral part of Katie Beck's schedule ever since Stella, her 5-year-old daughter, was born. So, when children's librarian Keiko Satomi suggested Katie and her husband, Jon, share the story of their second daughter, Lilly, they agreed.

Lillian ("Lilly") was born Aug. 1, 2019. When she was given her newborn screening, the doctor determined that she was deaf.

"Lilly was our first deaf person that we ever met in our life," Katie said. "At first for me, I felt like my world stopped, but the world kept spinning. As you journey, it gets going and you connect with other people, teachers of the deaf, other families, and it gradually gets easier."

Jon said his first reaction to the news of Lilly's hearing loss was shock, but he is philosophical. "If we're going to have a child with a disability, we kind of hit the jackpot," he said. "If there was going to be a challenge, this was probably the challenge with the best possible outcome and best possible treatment."

Katie and Jon both refer to Lilly's diagnosis and treatment as a "journey," albeit one with many more hills and valleys than they expected. The first intervention the team tried was hearing aids, but they didn't help enough.

Next, the family connected with a deaf mentor to start learning American Sign Language. "We are still learning," Katie said. Sign language was the only way to communicate with Lilly that first year.

The doctor then recommended that Lilly be fitted with cochlear implants in both ears. According to the Mayo Clinic website, a cochlear implant consists of internal and external components. Surgery is required to place electrodes in the inner ear and to implant a receiver under the skin behind the ear. The external processor sits behind the ear and picks up sounds and sends them to the receiver, which moves them to the electrodes. The signals move along to the auditory nerve and reach the brain as sounds. The brain interprets these sounds and, with education and training, a deaf person can hear.

Surgery was scheduled for May 26, 2020, at the University of Minnesota Masonic Children's Hospital in Minneapolis.

"It was a long night for all involved, but the operation was successful, and Lillian was a trooper through the entire process," Katie said.

Highs and lows

The implant processors were activated on June 23. Katie and Jon knew this was the moment when they would discover whether Lilly could hear, and she did. From that point on, the family's schedule included numerous appointments and trips to the Twin Cities area. "Lilly has probably had 200-plus appointments related to hearing loss," Katie said.

At the end of 2020, Lilly's treatment was transferred to Essentia Health in Duluth, allowing for closer networking with teachers and therapists in the region and fewer trips to Minneapolis.

As with many journeys, there are roadblocks and detours. Lilly had been progressing rapidly with her speech and sign language skills, but in November her right implant failed. Surgery to replace the defective component was completed in February.

"After surgery the activation process starts over and Lilly's processor was turned on in March," Katie said. "We're still tuning the settings with

audiology, but are close to a final program."

Covid-19 also impacted Lilly's journey.

Interactions with family and friends were limited, programs were shut down, and there were lost opportunities for family and friends to learn ASL and share with Lilly.

"It was a very stressful time during Covid. We weren't getting speech in the home. We couldn't get surgery because hospitals were closing down elective surgery," Katie said.

Lilly is not at any greater risk if she catches Covid. "The only thing that we need to watch out for with her is ear infections, because it can kind of move in toward her implants if it's not caught right away," Jon said. "So, if she starts pulling at her ear, we have to go in right away."

Lilly recently had a double ear infection and completed a course of antibiotics. "She will always need antibiotics if she has an ear infection," her dad said.

Forward

Lilly's implants are quite sturdy, but Jon notes that she will always need a good helmet for high-impact activities like snowboarding or biking. "I am friends with moms that have kiddos (with implants) that play football or lacrosse or soccer just like any other kid," Katie said.

So far on her journey, Lilly has continued to impress the professionals with her hearing and language ability. Her assessments show that she is at her age level of development in spite of not hearing for her first year of life and the malfunctioning of one implant for nearly six months.

Jon and Katie have a wealth of information to share about Lilly, sign language, and hearing loss during their upcoming program at the Cloquet Public Library.

"The goal is to educate people when they see Lilly or other kids in the area with cochlear implants, so people kind of understand it and know what it is and people don't look at them differently," Jon said.

"Journey with Lilly" will be presented at 4 p.m. May 11, at the Cloquet Public Library.

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If you go

Lilly was born deaf and received cochlear implants almost two years ago, which help her to hear and communicate. Learn more about cochlear implants and take a "Journey with Lilly" at

4 p.m. Wednesday, May 11, at the Cloquet Public Library. Kids and adults are invited to attend.