One thing I came across while researching hearing loss is that everyone remembers and keeps track of their "hearing birthday." When you have profound hearing loss and finally gain some access to sound, you are starting anew. Your age doesn't reflect your abilities in hearing and speech. And so, keeping track of this very important day is a way to measure progress for your adjusted hearing age.
The photo above is from Ezra's actual birthday.
His birthday wish must have been to hear, because he started responding to sound....on his birthday....one week before his scheduled cochlear implant surgery.
We could not believe it.
After Ezra was born, he failed his newborn hearing test. Three times.
This was followed by a sleep Auditory Brainstem Response (ABR). I kept Ezra awake so he was utterly exhausted at the time of his scheduled appointment, so he would fall asleep. The problem is, under natural sleep, you can't test kiddos as loudly, or you might wake them up or cause them to twitch or startle which screws up the brain readings. He registered in the severe to profound hearing loss range.
This test was followed by a sedated ABR. His hearing loss was confirmed profound in both ears. He had zero response at the maximum testing volume (90 decibels) of every frequency.
On his birthday, he startled and turned his head when he heard Jesse close the front door. We thought it was a fluke because he's very sensitive to vibrations and visual cues. But it was not a fluke. Ezra continued to be startled by very loud noises. We reported our observations to the different audiologists....how could this be happening?
I will never forget that, over Memorial Day weekend, I had doctors and audiologists taking time out of their holiday to respond to this news---I think it was just as unexpected and exciting for them as it was for us.
It's possible that Ezra's brain started making new connections. It's likely that he suffered a 20 decibel loss just from congestion in his ears....and that fluid was drained when he got an ear tube placed in March. But these things are educated guesses. Ezra is super unique which makes it nearly impossible to compare his path to what would be typical.
On Wednesday we completed another sedated ABR.
Right ear: profound hearing loss (no response)
Left ear: severe hearing loss (responses between 65 and 75 decibels....depending on the frequency)
The great news is that Ezra's hearing aid is now useful. We had it reprogrammed and he's been wearing it without any issues. The audiologist is hopeful that the hearing aid is giving him access to sound as soft as 30-40 decibels. Here's a chart from a hearing aid company, EarQ, to help understand what those numbers mean.
For now, the cochlear implant surgery is postponed. We hope to see Ezra make progress over the next few months as he starts realizing that sound exists. Babies start hearing in the womb as early as 18 weeks, so when most children start talking at around one year of age they have been listening and hearing for over 18 months. It is amazing how much we take for granted.
I wonder if Ezra's peaceful disposition and ability to sleep through anything will start to evolve with this change. I will miss this sweet baby, but can't wait to see what will happen.
In a year that has been filled with lots of difficult news, this feels like a victory.
Happy Hearing Birthday Ezra!
Thanks for making this day so easy to remember.
I wonder if Ezra's peaceful disposition and ability to sleep through anything will start to evolve with this change. I will miss this sweet baby, but can't wait to see what will happen.
In a year that has been filled with lots of difficult news, this feels like a victory.
Happy Hearing Birthday Ezra!
Thanks for making this day so easy to remember.
