Hearing Himself
After nearly 18 months of advocating, calling, scheduling, speaking up, driving to Columbus for appointments, wondering, advocating, persisting, analyzing, persuading, and asserting myself on my child’s behalf, I’m happy to say that my dear Colby, who turned six last week, FINALLY has two hearing aids in his ears.
After just a couple days, we can tell already that they are making a HUGE difference. He loves them! We are so glad.
So why, in this country, with educated, dedicated and insured parents, did it take so long? Well, in part, because it was a tricky trajectory.
First, we thought tubes would (and did) help, but they didn’t, really. Then we finally made it to Columbus, only to find Colby dismissed a month later with “near-normal hearing.” We disagreed and kept pushing. I found the name of and worked Colby into the path of “the best ear surgeon in the state.” From there, things started going right. In April, Colby underwent an auditory brainstem response test (ABR), where he was put to sleep so they could measure his brainwave response to sound.
That ended up being the ticket to where we are today, as he was diagnosed with Auditory Neuropathy Spectrum Disorder (ANSD). It is sometimes referred to the ADHD of the hearing world because of its ambiguity on all fronts (causes, diagnosis, treatment, prognosis.) But one thing we know: hearing fluctuates. Colby may hear well one day and totally struggle the next. Hearing can even fluctuate from one part of day to another or one environment to the next. As you might imagine, that makes it tough to help him.
But we finally have a plan and amazing little hearing aids that make such a difference. I’m inspired by Colby for how brave and patient he is and how willing he is to try these aids. He’s been in the soundbooth seven times. He’s played the same games over and over again and let them wiggle things in and out of his ears and sound pitches that give me a headache just thinking about them. He’s been the only kid in the car on long trips and waited in so many waiting rooms, sometimes seemingly for no progress at all.
Along with all of the medical side of it, we’ve been through hoops for an Individualized Education Plan (IEP)–first for speech and now amended for hearing impairment–for Colby to attend preschool and also through paperwork for assistance through an Ohio Department of Health program and more. I’m so thankful all of these resources exist, that Colby has benefitted from some of them already.
I suspect now that my baby boy is going to grow up even faster. He’s going to progress in ways I couldn’t have imagined at the beginning of this journey.
It’s so nice to be on this side of the mountain. Hear yourself, baby boy. You have a beautiful voice, and I’ll never stop helping you find it.
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I’m so happy for Colby Levi! What a sweet little guy. I just love him to pieces! Can’t wait to see him soon.
So happy for Colby. …and for the whole clan. Your world is going to be a new one now for everyone. Glad you ccontinued to push. Glad you kept fighting for your baby. We have been down that road. It took nearly 2 years to get a dr to run test and figure out D had a real problem. Colby is such a cutie. He can now enjoy his life even more!!!
As another mom with a boy who deals with hearing loss (not enough for aids…), this post made me sniffle. Yes, hearing does fluctuate, especially from place to place.
I’m so happy for you and yours! Congrats, Colby! (And mom!)