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Isn't she so stinkin cute? This week has been fairly chill...
After leaving our meeting with the neurologist last week we knew a muscle biopsy was going to be on the schedule soon. After the surgeon’s office called to schedule an appointment for this past Tuesday, we couldn’t believe how fast they had gotten us on the schedule. Unfortunately, it was a false alarm. I was curious as to why anesthesia never called to give us a heads up for preop stuff on Monday. It was because all we were doing was going to meet the surgeon and learn about what the biopsy entailed. This was nice, but if the office had told us that Lindsay wouldn’t have taken the day off of work and I would have gone to class. So, now we have the biopsy scheduled for next Tuesday, April 9th. Bentley will have to be put under anesthesia again, like the MRI, and the procedure should last an hour or so. He will take a nice little snippet of her thigh muscle. Anesthesia twice in a month’s time is kind of nerve-racking, even for me. I’m excited for the test results, but not to eat the expensive breakfast sandwich this soon after the last one.
After leaving our meeting with the neurologist last week we knew a muscle biopsy was going to be on the schedule soon. After the surgeon’s office called to schedule an appointment for this past Tuesday, we couldn’t believe how fast they had gotten us on the schedule. Unfortunately, it was a false alarm. I was curious as to why anesthesia never called to give us a heads up for preop stuff on Monday. It was because all we were doing was going to meet the surgeon and learn about what the biopsy entailed. This was nice, but if the office had told us that Lindsay wouldn’t have taken the day off of work and I would have gone to class. So, now we have the biopsy scheduled for next Tuesday, April 9th. Bentley will have to be put under anesthesia again, like the MRI, and the procedure should last an hour or so. He will take a nice little snippet of her thigh muscle. Anesthesia twice in a month’s time is kind of nerve-racking, even for me. I’m excited for the test results, but not to eat the expensive breakfast sandwich this soon after the last one.
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Today was our first true speech therapy visit at the HEAR Center. It was more of an evaluation day. To see how Bentley is tolerating her hearing aids and find out how she is progressing developmentally. We also learned a lot more about this “journey” towards cochlear implants. However, the best part of the day was hooking Bentley’s hearing aids up to a machine that reduced the amount of feedback they receive!!!!! Now only the right side squeals, and not like a stuck pig, more like a pig talking in its sleep.
The speech therapist was great. She wanted to know all about Bentley’s sleeping and eating habits. She wanted to know about her activity during the day. She is also evaluating me and Lindsay. There is an “environmental” component to cochlear implant candidacy. The powers-that-be need sufficient evidence that we are committed for the long haul. Leading up to implantation, Bentley will need speech therapy at least every other week at the HEAR Center. This could become weekly, depending on how she does. We have to show that we will commit to this regimen as well as doing our homework. The therapists haven’t said this, but I think the hearing aids are more like training wheels for the implants. The hearing aids allow us to get used to taking care of this devise that is attached to our child at all times. I haven’t found an estimated retail price of the implant’s processor, but I imagine it’s expensive. Not the sort of thing you want to accidently step on, wash, or leave sitting on the bumper of your mom’s car. Good thing Jarod didn’t need a set of these when he was little. Back to the regimen….One thing that concerned me and Lindsay is Bentley’s need for a level of communication prior to implantation. Usually this would be a visual cue such as reading lips, hand signals, or simply turning her head toward what sounds she can hear, or light she can see. Well, Bentley won’t be reading my lips anytime soon, so that is out. Hand signals from a distance, NOPE. Morse Code with a strobe light, nuh uh. So we have to use touch or tactile means of communicating. But then the “what if” game starts:
What if she’s got a cognitive learning disability?
What if she has muscular dystrophy and that affects it?
What if she has the attention span of her father?
What if I leave her in the grocery store? – oops, wrong “what if” game.
Could one of these factors prevent her from getting implants? I could ask so many questions, and most aren’t even relevant yet.
What if she’s got a cognitive learning disability?
What if she has muscular dystrophy and that affects it?
What if she has the attention span of her father?
What if I leave her in the grocery store? – oops, wrong “what if” game.
Could one of these factors prevent her from getting implants? I could ask so many questions, and most aren’t even relevant yet.
Following implantation therapy can become more frequent. At that point we have to teach Bentley’s brain how to hear (if she has heard absolutely nothing at that point), and what sounds are and mean. They say that she should have some level of hearing prior to implantation, it’s just the matter of figuring out how to tap into that level of sound and training it. The YouTube videos make it look like all you have to do is flip a switch. Apparently there is a little more to it than that.
The fun part, at least to me, is that I have three brands of implants to choose from. I feel like I’m car shopping. I’ve got brochures, dvds, and websites to look at. Each one claiming their implant is the best. We’ll see. They now offer many accessories and colors. Some are even waterproof. If you can’t tell, I’m excited!!! I basically get to pick out the most expensive and awesome set of headphones for my daughter. “Your kid has Beats by Dre, my kid’s headphones will be attached to her brain! BOOM (with hand gestures)”
Well, I guess I’ll stop now. Muscle biopsy Tuesday. Oh yeah, I just learned there is going to be a cornhole tournament at Avondale Brewery on April 27th supporting The Bell Center, in case you want a fun afternoon tossing beanbags.
I’ll throw in an update soon about when the Texas and Nashville Bryants and the North Carolina Owens came to visit Bentley. It was fun.
Well, I guess I’ll stop now. Muscle biopsy Tuesday. Oh yeah, I just learned there is going to be a cornhole tournament at Avondale Brewery on April 27th supporting The Bell Center, in case you want a fun afternoon tossing beanbags.
I’ll throw in an update soon about when the Texas and Nashville Bryants and the North Carolina Owens came to visit Bentley. It was fun.
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