Hello everyone- I just discovered this group and have read a few of the discussions already. Thank you for sharing your experiences with hearing loss. I can’t imagine the frustrations that many of you have lived with, but I am grateful for your vulnerability and willingness to share.
My daughter was born with good hearing but lost it shortly after her 2nd birthday. We didn’t identify it for 15 months though. She was able to still “converse” with us- we noticed she would watch our mouths when we spoke but we didn’t think anything of it at the time. We thought her odd behaviors were just part of her age- she would frequently ignore us or just really focus on toys she was playing with (and seemed to tune out everything around her- so we thought). I knew something was off, but everyone around me told me that she was a perfectly healthy 2/3 year old, and was probably just having a hard time adjusting to her new baby sibling. It was an extremely challenging 15 months to say the least. I questioned my parenting on a daily basis. What was I missing? What was I doing wrong? Why was she so difficult? “Maybe she’s sensitive to sugar…” “Maybe she has ADHD..” “Maybe she’s autistic…” “There’s nothing wrong with her, she’s perfectly normal…” These are all things that I would hear from the people closest to me. You can imagine the frustrations that arose in both me and in her when there was a daily breakdown of communication and we weren’t even aware of how or why. When she was finally diagnosed with sensorineural hearing loss (moderate – severe) in March of 2019 at the age of 3, it was honestly a big relief to me. Yes, we grieved her hearing loss (because it IS a loss that is worth grieving).. but we finally had answers.
Later that month we attempted hearing aids. Her response to them was so severe and awful that they didn’t send us home with the aids, and instead ordered a sedated ABR for April. The ABR revealed her hearing wasn’t as bad as we initially thought from the booth testing, so we went back in May to try the newly programmed aids. They were uncomfortable for her at first, but slowly and surely, she grew more comfortable with them.
She started preschool in the fall and her teachers attempted a Roger System. Her response to this was equally awful to her first attempt with the HA’s- severe crying, screaming and even threw the aids across the room. Her audiologists have tried a few different things but believe there’s probably a recruitment issue. We decided to put the Roger System on the back-burner and try again at a later time. For now, our goal is to get her to love school and enjoy attending. COVID has thrown a wrench in school attendance, however she does look forward to going back in the fall.
Fast forward to two weeks ago- she was playing with a soft ball and it hit her left ear. She said it broke her hearing aid. We checked the battery and cleaned it but didn’t find anything wrong. That whole evening she was asking if it was on and said that it needed a new battery. I should add that her left ear is her good ear: her right hearing aid hasn’t helped her at all (speech recognition of 10%), and we’re actually awaiting to get her right ear implanted sometime this month. When her left hearing aid all of a sudden stopped helping her, we started to get concerned. That was her only way of hearing us. The next day we drove the hour to the University Hospital to have her hearing aids checked and discovered they were working fine. They mentioned something called EVA- which can cause someone’s hearing to fluctuate with any impact to the head (hard or soft). The following week (last week) we learned from a booth test that her left ear’s speech recognition dropped from 72% in March to currently 30%.. a pretty drastic drop over the course of 2 months. So basically: her hearing didn’t decline, but her brain’s ability to process speech did. They were able to make minor adjustments to her hearing aids so she’s thankfully wearing them again. She didn’t wear them for a full week (from when the ball hit her ear to last week’s hearing test), and during that time we dove head first into learning sign language. It can only help us moving forward if there’s ever another incident with her left ear.
She will be getting a cochlear implant in her right ear this month (just waiting on insurance approval before scheduling a date). Does anyone have any experience with a 4 year old getting a C.I… specifically, one who is already sensitive to sound? The surgery itself doesn’t make me nervous, but the activation of the CI does.
Also, does anyone have any experience with EVA? I only recently learned about this 2 weeks ago so don’t know much about it aside from a few internet searches.
I apologize for the long novel but wanted to share about our family’s experiences with people who can relate. Thank you in advance for any feedback/advice you can provide.