In the next few weeks, Audrena will be evaluated as part of the transition from Birth to 3 to the school district for services. I am interested to see what the evaluation brings. She is putting 3-4 words together. However, I feel like her vocabulary is still lagging behind a bit, and she is still leaving out the beginning and ending consonants more often than not. For example, one time she might pronounce "puppies" crystal clear, and the next time it might be "uppies." "On" and "off" both lack the endings more times than not. We are working on it, and we've seen some improvement. Our current SLP through Birth to 3 has done a great job with Audrena, and we are seeing some really nice progress.
We have been using the Naida processors nearly exclusively now. It's new technology, and there have been some bugs. We kept losing mic protectors from one of her processors almost daily, and before long we noticed that the mic just wasn't crisp and clear like the other. So we switched back to the Neptunes and sent the Naida in for replacement. The replacement had issues of its own, giving random red lights or orange lights. The orange light would ordinarily mean the battery was low, but we found that it didn't matter what battery we put in, it would still show that the battery was low. So again we had it replaced. Audrena is hard on cords, so we have had to replace those a few times as well. We went through that with the Neptune cords, too. She is just rough with them. That's why it is SO important to be very conscious of your child's cochlear implant equipment. We constantly monitor things because if she is not getting good quality sound, she can't catch up as quickly with her speech and language.
The Naida processors can use the T-mic 2. We have heard they are generally not recommended for small children because there is no good way to monitor whether they are working. However, our Audiologist wanted us to use the T-mic 2 because it delivers the sound into the opening of the ear, where it naturally would be heard. Also, studies show better outcomes with T-mic usage than without. As closely as we monitor Audrena's equipment, that concerned us because we couldn't really check the T-mic's function, yet we wanted her to have the best possible listening opportunity. Dr. M. explained that she would be programming it to use 50% T-mic and 50% processor mic. That would really function as a 100%/100% arrangement because if the T-mic were to fail, Audrena would still get the sound through the processor mic. She could monitor the T-mic via booth testing outcomes by switching off the processor mic during testing and then testing again with it on. So we agreed to try it. We also think we have figured out on our own how to test the T-mic with it being programmed this way. When we do listening checks, we simply tightly cover the processor mic with our fingertip, and we can hear the sound only through the T-mic. We know the sound is coming into the T-mic because if you get close enough and the air from your mouth hits the mic, you can hear it just like wind. I'm not sure if that's in any way reliable, but it seems to be working for us.
We feel like Audrena is getting better sound with the Naidas. It may or may not be coincidence, but she has had a speech & language explosion since we have started using them. One thing we haven't quite figured out is how to keep them on without using toupe tape. Her glasses get in the way, so they don't sit perfectly on her ear. Tape seems to be the only solution, and it works well, although we sort of hate it. Her hair seems to get stuck in it no matter how careful we are. If anyone has a solution, I would love to hear it!
November 21, 2013
Time to Give Thanks
As Thanksgiving approaches, I am always thankful for the gift of cochlear implants. This hearing journey is certainly not something we ever expected to endure, and I say "endure" because it has not been easy. However, it has been rewarding in the most awe-inspiring ways. It has taken us places we never dreamed and tested our family and even our marriage a bit at times. But we have come out stronger and happier. Audrena has come so far in the past 15 months, much farther than we expected in some ways.
We are thankful for Advanced Bionics. We are thankful for Boys Town National Research Hospital and every single person who works there. We are thankful for the University of South Dakota Scottish Rite Speech and Hearing Clinic staff, for our top notch Audiologist and Speech-Language Pathologists, and for the enthusiastic students. We are thankful for South Dakota School for the Deaf. We are thankful for a fantastic Physical Therapist. And we are thankful for the many friends we have made along the way, the families that we have connected with, and the mentors we have found.
We can't forget to be thankful for our two older kids, Reyana and Kelton. They have always been loving to their little sister and really watch out for her. They are the best language models for her, and she would not have come so far if it were not for them. I am sure of it. Our family, friends, and coworkers have also been huge supporters throughout the past couple of years.
In the past 15 months, Audrena went from hearing nothing to hearing whispers, hearing at 20 decibels with her implants. She went from saying only mamamamama to putting 3-4 word sentences together. Thanks to her physical therapist, she now walks good, runs, navigates uneven surfaces, and is even beginning to go down steps without constantly holding on to the railing. She did 4 steps the other night while holding a sippy cup and a treat, and with me hovering over her like a Nervous Nelly. Hey, in my defense there was concrete at the bottom!
I was a very shy child, and it has taken me a long time to come out of my shell. I'm not a very outgoing person, and neither is Randy. But this journey has put us in places we never thought we would be. We are finding ourselves filling the role of advocate as Audrena gets ready to transition out of Birth to 3 and into the school system. We have been mentors of sorts for other families, while in turn being mentored by other families further along this journey. Most recently we were asked to be involved in a PSA (which I think will just involve Audrena's picture being part of the announcement) and to be parent advocates for hearing screening legislation that is currently being drafted.
This hearing journey is certainly not something we would have chosen. Given the choice of Audrena with normal hearing, or Audrena with cochlear implants, I think I can safely say we would choose Audrena with normal hearing simply because normal hearing would be just easier for her. However, we love Audrena as she is, and if this is the path God has chosen for her, then maybe her purpose is to make a difference in the world of hearing loss. I have no doubt that she will go far in life. Who knows, maybe she will be a cochlear implant surgeon. Or maybe she will be the first deaf woman president. The moon and the stars are the limit. We are just thankful for great people and great technology to help her along the way.
We are thankful for Advanced Bionics. We are thankful for Boys Town National Research Hospital and every single person who works there. We are thankful for the University of South Dakota Scottish Rite Speech and Hearing Clinic staff, for our top notch Audiologist and Speech-Language Pathologists, and for the enthusiastic students. We are thankful for South Dakota School for the Deaf. We are thankful for a fantastic Physical Therapist. And we are thankful for the many friends we have made along the way, the families that we have connected with, and the mentors we have found.
We can't forget to be thankful for our two older kids, Reyana and Kelton. They have always been loving to their little sister and really watch out for her. They are the best language models for her, and she would not have come so far if it were not for them. I am sure of it. Our family, friends, and coworkers have also been huge supporters throughout the past couple of years.
In the past 15 months, Audrena went from hearing nothing to hearing whispers, hearing at 20 decibels with her implants. She went from saying only mamamamama to putting 3-4 word sentences together. Thanks to her physical therapist, she now walks good, runs, navigates uneven surfaces, and is even beginning to go down steps without constantly holding on to the railing. She did 4 steps the other night while holding a sippy cup and a treat, and with me hovering over her like a Nervous Nelly. Hey, in my defense there was concrete at the bottom!
I was a very shy child, and it has taken me a long time to come out of my shell. I'm not a very outgoing person, and neither is Randy. But this journey has put us in places we never thought we would be. We are finding ourselves filling the role of advocate as Audrena gets ready to transition out of Birth to 3 and into the school system. We have been mentors of sorts for other families, while in turn being mentored by other families further along this journey. Most recently we were asked to be involved in a PSA (which I think will just involve Audrena's picture being part of the announcement) and to be parent advocates for hearing screening legislation that is currently being drafted.
This hearing journey is certainly not something we would have chosen. Given the choice of Audrena with normal hearing, or Audrena with cochlear implants, I think I can safely say we would choose Audrena with normal hearing simply because normal hearing would be just easier for her. However, we love Audrena as she is, and if this is the path God has chosen for her, then maybe her purpose is to make a difference in the world of hearing loss. I have no doubt that she will go far in life. Who knows, maybe she will be a cochlear implant surgeon. Or maybe she will be the first deaf woman president. The moon and the stars are the limit. We are just thankful for great people and great technology to help her along the way.
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