To my dear family and friends,
This is a story about little Sienna. I am posting this story for you because I want you to catch a glimps of what October 14th will be like for Troy and the Stambaugh family...
Please visit Sienna's story here: Sienna's CI Surgery.
Showing posts with label Deafness. Show all posts
Showing posts with label Deafness. Show all posts
Thursday, July 16, 2009
Thursday, June 18, 2009
Moving forward toward IMPLANTS!
I just got off a pretty extensive phone call with the audiologist from the E.N.T. office. Now that we have confirmation that Troy has cochlea and they seem to be implantable, we can take these next few steps.
1) An evaluation with Troy's hearing aids with the audiologist at the hospital
2) A speech and language evaluation with the audiologist at the hospital (yes, I know this doesn't seem to make a lot of sense. These audiologists with be meeting with Troy once a month after his implant to work on speech, so they need a starting point).
3) Audiologists fax the ENT's office their results
4) ENT submits and gets approval from our insurance for BILATERAL implants. The audiologist said she has not had any problems getting approval for bilaterals from Priority Health (our insurance co).
~For those of you who don't know: bilateral implants are a HUGE deal. This is GREAT news and insurance companies in our area have just started to approve bilaterals in the last year! Troy will be the 2nd kid at his deaf school with bilaterals! This is a HUGE deal!~
5) If all of this can be done by late September we will have surgery OCTOBER 14, 2009!!!!
Please say your prayers that all of this goes as planned. These next few steps should go off without a problem. My biggest fear is the insurance company, but the audiologist saying that she's not had any problems reassures me.
1) An evaluation with Troy's hearing aids with the audiologist at the hospital
2) A speech and language evaluation with the audiologist at the hospital (yes, I know this doesn't seem to make a lot of sense. These audiologists with be meeting with Troy once a month after his implant to work on speech, so they need a starting point).
3) Audiologists fax the ENT's office their results
4) ENT submits and gets approval from our insurance for BILATERAL implants. The audiologist said she has not had any problems getting approval for bilaterals from Priority Health (our insurance co).
~For those of you who don't know: bilateral implants are a HUGE deal. This is GREAT news and insurance companies in our area have just started to approve bilaterals in the last year! Troy will be the 2nd kid at his deaf school with bilaterals! This is a HUGE deal!~
5) If all of this can be done by late September we will have surgery OCTOBER 14, 2009!!!!
Please say your prayers that all of this goes as planned. These next few steps should go off without a problem. My biggest fear is the insurance company, but the audiologist saying that she's not had any problems reassures me.
Friday, June 5, 2009
Questions for my friends with deaf children...
The other day I came across a boat-load (yes, a whole boat-load) of blogs of deaf children. Many of them have already had the cochlear implant process.
My question to these parents are: what type of CI (which company) did you choose for your child and why?
My question to these parents are: what type of CI (which company) did you choose for your child and why?
Monday, March 16, 2009
The Sound of Sound
As many of you know, I have made many friends in the Deaf and Hard of Hearing world already. One of my friends just went through the surgery part of a cochlear implant with her daughter, "Little M". Little M's mom found this article one day and posted it on her blog. I have copied it below because it is such an amazing article about what happens after the cochlear implant is implanted.
I hope you enjoy as much as I did...
I hope you enjoy as much as I did...
The Sound of Sound
Written By Jennifer Rosner
What it's like to be a little girl with a cochlear implant. What it's like to be her mom.
For my 4-year-old daughter Juliet, hearing is optional. She was born profoundly deaf. Juliet has a cochlear implant, which brings her access to sound, so long as she wears her external processor — a behind-the-ear device that looks like a hearing aid with a small magnetic disk that attaches to the implant in her head. Throughout each preschool day, Juliet wears her processor, and with it she hears. And she talks. She hums. She sings. Juliet's language and music are wonders to behold. But when she arrives home from school exhausted, she often wants to take her processor off.
"I don't want my sound," she says, and she piles the mound of earmold, wire, and magnet into my open palm.
Written By Jennifer Rosner
What it's like to be a little girl with a cochlear implant. What it's like to be her mom.
For my 4-year-old daughter Juliet, hearing is optional. She was born profoundly deaf. Juliet has a cochlear implant, which brings her access to sound, so long as she wears her external processor — a behind-the-ear device that looks like a hearing aid with a small magnetic disk that attaches to the implant in her head. Throughout each preschool day, Juliet wears her processor, and with it she hears. And she talks. She hums. She sings. Juliet's language and music are wonders to behold. But when she arrives home from school exhausted, she often wants to take her processor off.
"I don't want my sound," she says, and she piles the mound of earmold, wire, and magnet into my open palm.
If a restaurant is too loud and Juliet is tired — yank — I have to rush to catch this several-thousand-dollar "ear" before she sets it down on a table smeared with ketchup or blue cheese dressing. Just as quickly, I race to settle Juliet into a comfortable position because, with the blessing of quiet and the shut of her eyes, she falls asleep in seconds. On weekend mornings, Juliet asks to wait before putting on her processor. She enjoys puttering around the house in silence, tuning us out, ignoring our demands. When she wants us, she just stands in place and yells (she has no idea how loudly) until we show ourselves in her visual field. Juliet signs, and we sign back, yet she often chooses not to reason with us when her sound is out. Sometimes she won't even look our way, disabling our speaking voices and our signing hands. To be sure, Juliet can be ornery with or without her sound. But without it, her face takes on so much expression that her glower can send us packing.
Juliet rips her processor off at the sight of the blender or the vacuum cleaner. She puts it back on when she spies a book I could read to her or a video she wants to watch. Like a baseball cap: off for the bath, on for the playdate, off to run through the sprinkler, then back on for the cupcakes. I wonder sometimes whether to encourage this. But why should she hear the babies crying at the pediatrician's office if she doesn't have to? Why not miss the jackhammer blast when the car is stuck in traffic? Juliet senses everything that's happening through vibrations anyway. Whether her sound is on or off, she knows when someone walks into the room, and she can read a face like a book. As she reminds me with a scowl when I repeat in sign what I've said aloud: "I know what you just said."
It's impossible for me to know what Juliet's experiences are like, with sound or without it. When I first heard a simulation of how a voice sounds through a cochlear implant, I was horrified. It sounded like Darth Vader speaking through Demi Moore as she imitated the Wicked Witch of the West. "We're going to drill into her tiny skull for this?" I asked the Boston Children's Hospital cochlear implant team. Can I never expect her to hear the timbre of my voice, or to distinguish between voices? And what will her voice sound like? I was placated, ultimately, by the sight (and sound!) of other implanted children at the playground of a nearby school for the deaf.
Juliet's cochlear implant surgery took place on her first birthday, and it lasted five hours. A few weeks after, her sound was "turned on" — the external processor was programmed and activated. It was set at a low volume, so as not to scare her, and it came with extra settings that grew gradually louder.
We were warned that most implanted babies cry when they hear sound for the first time. I wrapped my arms around Juliet as the audiologist attached the processor — glop — and the external magnet glommed onto Juliet's head like a magnet onto a refrigerator. Instructing us to be quiet, the audiologist handed Juliet a drum and a stick. Juliet whacked the drum, then jumped back like a startled animal at the sound of the boom. She searched our faces with wide questioning eyes. She beat the drum again. And then Juliet thrust back her head and laughed.
For the next hour, she used the drumstick to beat other things: the audiologist's pant leg made almost no sound, the metal file cabinet made a loud clanging boom, the tone of the wood chair was different than the thicker wood table. Juliet had become a scientist, studying and experimenting with sound.
According to the audiologist, all sounds would come in as beeps and blips at first. It would be months before the neural pathways between Juliet's auditory nerve and her brain would be forged and able to translate the input into meaningful sound. That is, it would be months before "moo" could be distinguished from "quack" and pinned on its rightful farm speaker. And months before Juliet would turn at my calling of her name. In the meantime, we would put in a lot of "moos" and "quacks." We would point out and comment on nearly every sound that could be heard in our home: the sizzling of an egg in the skillet, the full rush then drip drip of water from the faucet, the stray cock-a-doodle-doo of a neighbor's rooster, the metallic scritch of a zipper running up a coat. "I hear it," I'd say, pointing to my ear, as the phone rang, or the heat kicked in.
The flop of a pancake. The shake of the milk bottle. The sound of the birds as we walked outside. The click of the car seat buckle before we drove. The clank of carts and the thunk of grapefruits as we shopped. Every sound: listened for, acknowledged, remarked upon.
Each morning, I'd put on Juliet's implant processor. I'd also stick a hearing aid into her nonimplanted ear. I was used to hearing aids. Juliet's older sister, Sophia, has a lesser hearing impairment, and hearing aids enable Sophia to hear and speak. Juliet objected to her aid, but I persisted. Set at its highest volume, it might give her access to new sounds.
Then, to keep things cheery, I'd chase her around the house. One snowy day in February, when Juliet was 1 1/2, we were running round and round. "I'm going to get you, Juliet," I yelled, offering her the lead, then trailing in the sea of squeals and laughter that floated in from the room ahead. At one point the tea kettle whistled and I broke the chase for a quick hearing lesson. I stood still in the kitchen until Juliet knocked into me, and as she caught her breath I pointed out the high-pitched whistle, thick steam shooting up at the kitchen cabinets. "I hear it," I said, pointing to my ears. Then I switched off the stove and resumed the chase.
Time out had to be called several times because Juliet's processor magnet slipped off, dragged down by the weight of her controller, which flapped in a pocket I had hastily sewn onto her T-shirt. Juliet took the time-outs like a puppy halted mid-nip to scratch an itch. Her hair came loose from her topknot. Her eyes sparkled. At one point, as I gained on her, sock-skating into the dining room, I called out, "Juliet!" and she turned her head to look at me.
I stopped in my tracks like Road Runner.
"Juliet?" I ventured again. By now she was smiling a huge smile — she had heard and recognized her name.
"Juliet," I choked, and I scooped her into my arms, "I got you, Juliet. I got you. I've gotten you."
Juliet rips her processor off at the sight of the blender or the vacuum cleaner. She puts it back on when she spies a book I could read to her or a video she wants to watch. Like a baseball cap: off for the bath, on for the playdate, off to run through the sprinkler, then back on for the cupcakes. I wonder sometimes whether to encourage this. But why should she hear the babies crying at the pediatrician's office if she doesn't have to? Why not miss the jackhammer blast when the car is stuck in traffic? Juliet senses everything that's happening through vibrations anyway. Whether her sound is on or off, she knows when someone walks into the room, and she can read a face like a book. As she reminds me with a scowl when I repeat in sign what I've said aloud: "I know what you just said."
It's impossible for me to know what Juliet's experiences are like, with sound or without it. When I first heard a simulation of how a voice sounds through a cochlear implant, I was horrified. It sounded like Darth Vader speaking through Demi Moore as she imitated the Wicked Witch of the West. "We're going to drill into her tiny skull for this?" I asked the Boston Children's Hospital cochlear implant team. Can I never expect her to hear the timbre of my voice, or to distinguish between voices? And what will her voice sound like? I was placated, ultimately, by the sight (and sound!) of other implanted children at the playground of a nearby school for the deaf.
Juliet's cochlear implant surgery took place on her first birthday, and it lasted five hours. A few weeks after, her sound was "turned on" — the external processor was programmed and activated. It was set at a low volume, so as not to scare her, and it came with extra settings that grew gradually louder.
We were warned that most implanted babies cry when they hear sound for the first time. I wrapped my arms around Juliet as the audiologist attached the processor — glop — and the external magnet glommed onto Juliet's head like a magnet onto a refrigerator. Instructing us to be quiet, the audiologist handed Juliet a drum and a stick. Juliet whacked the drum, then jumped back like a startled animal at the sound of the boom. She searched our faces with wide questioning eyes. She beat the drum again. And then Juliet thrust back her head and laughed.
For the next hour, she used the drumstick to beat other things: the audiologist's pant leg made almost no sound, the metal file cabinet made a loud clanging boom, the tone of the wood chair was different than the thicker wood table. Juliet had become a scientist, studying and experimenting with sound.
According to the audiologist, all sounds would come in as beeps and blips at first. It would be months before the neural pathways between Juliet's auditory nerve and her brain would be forged and able to translate the input into meaningful sound. That is, it would be months before "moo" could be distinguished from "quack" and pinned on its rightful farm speaker. And months before Juliet would turn at my calling of her name. In the meantime, we would put in a lot of "moos" and "quacks." We would point out and comment on nearly every sound that could be heard in our home: the sizzling of an egg in the skillet, the full rush then drip drip of water from the faucet, the stray cock-a-doodle-doo of a neighbor's rooster, the metallic scritch of a zipper running up a coat. "I hear it," I'd say, pointing to my ear, as the phone rang, or the heat kicked in.
The flop of a pancake. The shake of the milk bottle. The sound of the birds as we walked outside. The click of the car seat buckle before we drove. The clank of carts and the thunk of grapefruits as we shopped. Every sound: listened for, acknowledged, remarked upon.
Each morning, I'd put on Juliet's implant processor. I'd also stick a hearing aid into her nonimplanted ear. I was used to hearing aids. Juliet's older sister, Sophia, has a lesser hearing impairment, and hearing aids enable Sophia to hear and speak. Juliet objected to her aid, but I persisted. Set at its highest volume, it might give her access to new sounds.
Then, to keep things cheery, I'd chase her around the house. One snowy day in February, when Juliet was 1 1/2, we were running round and round. "I'm going to get you, Juliet," I yelled, offering her the lead, then trailing in the sea of squeals and laughter that floated in from the room ahead. At one point the tea kettle whistled and I broke the chase for a quick hearing lesson. I stood still in the kitchen until Juliet knocked into me, and as she caught her breath I pointed out the high-pitched whistle, thick steam shooting up at the kitchen cabinets. "I hear it," I said, pointing to my ears. Then I switched off the stove and resumed the chase.
Time out had to be called several times because Juliet's processor magnet slipped off, dragged down by the weight of her controller, which flapped in a pocket I had hastily sewn onto her T-shirt. Juliet took the time-outs like a puppy halted mid-nip to scratch an itch. Her hair came loose from her topknot. Her eyes sparkled. At one point, as I gained on her, sock-skating into the dining room, I called out, "Juliet!" and she turned her head to look at me.
I stopped in my tracks like Road Runner.
"Juliet?" I ventured again. By now she was smiling a huge smile — she had heard and recognized her name.
"Juliet," I choked, and I scooped her into my arms, "I got you, Juliet. I got you. I've gotten you."
Monday, November 10, 2008
How do you test a baby for deafness?
I've had several people ask me how we already know that Troy is deaf. Most people, as I did before this whole ordeal, assume that you learn that a child is deaf around 2-3 years old when they are not talking. According to some research my mom and I did, only 20% of hospitals test newborns for deafness, so it's not uncommon for people to find out their child is deaf by not speaking at 2-3 years old.
In the hopsital they run a test that looks at the neural response to sounds. There are sensors put on his head and little earplugs in his ears. The earplugs then do a series of clicks and beeps. The sensors can record which sounds his brain responds to. Unfortunatly, Troy did not respond to any.
Troy had that test ran on him twice in the hospital and once a few weeks after. About 4 weeks after he was born the hospital did a diagnostic test (a similar test to above) that told us that he cannot hear up to and probably past 90 decibles. We could have tested him at 120 decibles, which is the volume of a jet engine, however we felt it was kind of unnecessary.
In the hopsital they run a test that looks at the neural response to sounds. There are sensors put on his head and little earplugs in his ears. The earplugs then do a series of clicks and beeps. The sensors can record which sounds his brain responds to. Unfortunatly, Troy did not respond to any.
Troy had that test ran on him twice in the hospital and once a few weeks after. About 4 weeks after he was born the hospital did a diagnostic test (a similar test to above) that told us that he cannot hear up to and probably past 90 decibles. We could have tested him at 120 decibles, which is the volume of a jet engine, however we felt it was kind of unnecessary.
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