Luca’s Hearing Journey

Luca’s hearing journey has been a wild one so far. It’s easy to get caught up in the day-to-day craziness, but when I have a few moments of quiet time to reflect, feelings can hit in waves.

We’ve come so far in a year.

As prepared as we were for Luca to have Down syndrome, we were completely unprepared for him to have hearing loss. I knew kids with DS typically have smaller ear canals, so ear infections can be common and tubes were a possibility. Profound bilateral sensorineural hearing loss; however, was not on my radar.

My hope in sharing our story is to let others know they’re not alone. When I found out about Luca’s hearing loss diagnosis, I scoured the internet for blogs and struggled to find someone who had a similar experience.

Check out this video documenting our journey.

May 2022 - Luca failed his newborn hearing test at the hospital. We were told a lot of babies refer and we knew kids with DS had smaller ear canals, so we weren’t too worried about it.

June 2022 - First ABR test. We learned that Luca had profound bilateral sensorineural hearing loss. We learned he was deaf. This was harder in a different way for me. Talking to him while I was pregnant. Singing. He hadn’t heard any of it. He felt our voices in a different way - through vibrations. But I was scared. I was scared that he wouldn’t be able to communicate with others and people wouldn’t be able to communicate with him.

June 2022 - Hearing aid molds were taken

July 2022 - First set of hearing aids

September 2022 - Second set of hearing aids

November 2022 - Helmet / no more hearing aids since they weren’t doing anything and we had to prioritize reshaping his head for CI placement

December 2022 - Testing began at Boys Town for CI candidacy

January 2023 - CT and MRI to check his ear anatomy. Learned he had abnormal cochlear nerves on both sides. Still a candidate for CIs.

February - April 2023 - Fought insurance for CI approval

April 2023 - CI surgery

May 2023 - Activation Day

Each one of these events could be its own blog post, and I may carve out time to share in more detail, but through a lot of therapy, intentional daily practice, and a resilient kiddo, Luca is responding to some sounds!!! This is better news than we hoped for at this stage, and we are still processing the progress he’s making. Onward and upward!