Well, after 5 months of uncertainty, mostly in the realms of "there are no auditory nerves" dictating no possibility of hearing, that news delivered by the Resident Dr in May with a smile on her face, today's BAER/auditory brainstem response has proven definitively that
REUBEN CAN HEAR
His hearing is moderate-severe loss in his left ear (he responds to 55-80db) and profound in his right ear (he does not respond to 95db), which, as you can see from the attached, means he may hear a baby wailing in his left ear, but not the spoken word.
The loss of hearing in the left ear is conductive rather than sensory, as first thought. The loss of hearing in the right ear is yet to be determined but at present, there are no plans to stimulate hearing in the right ear, the loss being too profound.
Thanks everyone for your messages of support and to the believers all along. Dad was sure there'd be a way for Reuben to hear at a time when I was trying to accept there could be no hearing, not without auditory nerves to carry the sound waves to the brain. Dad would think Reuben was responding to things he was saying, yet that was in the same way that he'd optimistically say "Wait til Reuben gets to the Ocean and smells the salty air", the sad irony of that which cannot be lost on any CHARGEr parent.
But I guess we too couldn't let go of the hope that the original BAER test showing severe/profound loss contradicted the 2 MRIs done at different intervals which showed the absence of auditory nerves and thus no hearing at all. It's nagged at me for months and I've beaten myself up about it, still do, that we missed out on early intervention. I guess we've been busy as have the Drs and nurses in saving Reuben's life.
As said, I would conduct my controlled experiments in the PICU in the absence of audiologists, by putting the TV's personal speaker to Reuben's left ear whereupon he would repeatedly wake up, until I got to the point of bugging the hell out of neighbouring families and patients.
The solution is a hearing aid attached to a headband (not a cochlear implant as I first thought.. thanks Fanning for the clarification) called the Baha Softband, designed for babies where an implant is not recommended before the age of 5 due to a baby's skull being too thin and too soft to safely support one. The processor is a bone conductor which transmits sound via the bone to the inner ear.
If anyone can offer any advice on the Softband, please do! I did come across Kennedy's own experience through a Google search so thanks for that insight and for information on how the Softband might ultimately be replaced with an implant.
This is tremendous, life changing news. We continue to sing to our boy knowing that one day soon, he will be able to hear us...
Update: our medical insurance company won't cover the $2,600 cost of the hearing aid. We've been declined for CCS and Medical (apparently) doesn't cover the aid either. Another huge financial challenge to summount.
Well, after 5 months of uncertainty, mostly in the realms of "there are no auditory nerves" dictating no possibility of hearing, that news delivered by the Resident Dr in May with a smile on her face, today's BAER/auditory brainstem response has proven definitively that
His hearing is moderate-severe loss in his left ear (he responds to 55-80db) and profound in his right ear (he does not respond to 95db), which, as you can see from the attached, means he may hear a baby wailing in his left ear, but not the spoken word.
The loss of hearing in the left ear is conductive rather than sensory, as first thought. The loss of hearing in the right ear is yet to be determined but at present, there are no plans to stimulate hearing in the right ear, the loss being too profound.
Thanks everyone for your messages of support and to the believers all along. Dad was sure there'd be a way for Reuben to hear at a time when I was trying to accept there could be no hearing, not without auditory nerves to carry the sound waves to the brain. Dad would think Reuben was responding to things he was saying, yet that was in the same way that he'd optimistically say "Wait til Reuben gets to the Ocean and smells the salty air", the sad irony of that which cannot be lost on any CHARGEr parent.
But I guess we too couldn't let go of the hope that the original BAER test showing severe/profound loss contradicted the 2 MRIs done at different intervals which showed the absence of auditory nerves and thus no hearing at all. It's nagged at me for months and I've beaten myself up about it, still do, that we missed out on early intervention. I guess we've been busy as have the Drs and nurses in saving Reuben's life.
As said, I would conduct my controlled experiments in the PICU in the absence of audiologists, by putting the TV's personal speaker to Reuben's left ear whereupon he would repeatedly wake up, until I got to the point of bugging the hell out of neighbouring families and patients.
The solution is a hearing aid attached to a headband (not a cochlear implant as I first thought.. thanks Fanning for the clarification) called the Baha Softband, designed for babies where an implant is not recommended before the age of 5 due to a baby's skull being too thin and too soft to safely support one. The processor is a bone conductor which transmits sound via the bone to the inner ear.
http://www.cochlearamericas.com/products/1983.asp
If anyone can offer any advice on the Softband, please do! I did come across Kennedy's own experience through a Google search so thanks for that insight and for information on how the Softband might ultimately be replaced with an implant.
This is tremendous, life changing news. We continue to sing to our boy knowing that one day soon, he will be able to hear us...
Update: our medical insurance company won't cover the $2,600 cost of the hearing aid. We've been declined for CCS and Medical (apparently) doesn't cover the aid either. Another huge financial challenge to summount.