Here is a link to my original post about the audiogram and the speech banana. These are two very important things to Audrena's hearing journey. Today, I can say that Audrena cooperated beautifully in the sound booth at USD's Speech & Hearing Center, and we got a great audiogram!
Audrena tested at 20-30 decibels across the frequencies! We have been told that a cochlear implant patient will never achieve normal hearing, and typically they will be in the 30-40 decibel range. Now, I do know several who hear at 15-25 decibels with their implants, so it's entirely possible. However, we are thrilled with today's results! Thrilled! Audrena has achieved the speech banana levels! This means wonderful things for her speech and language development.
Through all the ups and downs of this journey, one thing has remained constant. The doctors, Audiologists, and other professionals at Boys Town National Research Hospital, and the doctors and clinical grad students at USD Scottish Rite Speech, Language, and Hearing Clinic have been top notch. Even if Audrena had not achieved such great results, we would still be able to say that with confidence. They have been nothing short of fabulous, and we would recommend them to anyone! But because they have changed our baby's life and opened up a world of opportunity for her, we will forever be grateful to them and to Advanced Bionics. If I sound like I'm delivering a sales pitch, well maybe I am. Just a little. Audrena is a success story in our eyes, and they have changed her life, so they deserve some public recognition.
Showing posts with label cochlear implant team. Show all posts
Showing posts with label cochlear implant team. Show all posts
September 13, 2012
August 30, 2012
Boys Town Activates its 500th Implant!
What an exciting milestone! Boys Town activated its 500th cochlear implant this week. Congratulations, BTNRH!
http://www.omaha.com/article/20120829/LIVEWELL01/120829652/0
http://www.omaha.com/article/20120829/LIVEWELL01/120829652/0
June 1, 2012
What an exciting couple of days!
And I have a feeling it's only going to get better from here!
We had all of our pre-candidacy appointments at Boys Town over the past two days. It started with the vestibular testing on Wednesday morning. I was very nervous about it because the testing would help the doctors determine which ear to implant first, and possibly whether bilateral implants would even be an option for Audrena. We already knew that Audrena is missing two out of the three semicircular canals in her vestibular system. If the system had been working better on one side than the other, it would help the doctors make those important decisions. However, the tests showed that her vestibular system is not really functioning.
After the vestibular testing, we met with Dr. K. Our doctor, Dr. L., had a funeral to attend, and Dr. K. is the other implant surgeon. The team manager had assured me we would really like Dr. K., and she was right! He explained to us that, although it sounds bad that Audrena's vestibular system is not working, it's actually very good from a surgery standpoint. However, as we already knew, Audrena will have to rely on other senses for balance and walking skills. Water will also be more dangerous for her because people with absent vestibular function can't really tell which way is up in the water. So it will be very important for her to have swimming lessons, and swimming in a lake or river will be very dangerous because of the murky water where she would not be able to see the surface. As for the rest of our discussion, Dr. K. just spent time answering our questions and discussing genetics with us. I needed that. As Randy said to him, "You just lifted a huge weight off of her shoulders." Of course, nothing is concrete until we are able to meet with the geneticists and have testing done, but I had been worrying about a certain syndrome. Dr. K. doesn't feel that there is much of a chance that Audrena has it. Also during that appointment, Dr. L.'s awesome nurse (seriously, she's been really great to us throughout this process) gave us the immunization schedule for meningitis, and Audrena is up to par for the surgery. One less thing we have to worry about!
Then came the meeting with the Speech Language Pathologist. I was a little concerned about this meeting just because I had been told that in the past Boys Town recommended Total Communication. However, when we told her that we will be using Auditory Verbal Therapy, she was very supportive. We were happy to work out some details regarding coordinating therapies with our SLP here. Overall, the visit was very informative and just a really good conversation.
From there we took a lunch break at Perkins and went back to the hospital for our Audiology meeting. They did some sound booth testing and were able to get Audrena to respond to some very loud sounds. We still don't know if she was reacting to the sound, or to the vibrations. Then they went to a different room to test out the hearing aids. By this point, Audrena was ready for a nap, and things were not looking promising. However, when Randy saw the machine, he recognized it as something that Dr. M. had done at USD the day before. They were able to call and have the information faxed.
We had a good feeling at the end of the day. Then it was back to the hotel for a nap, and then we went to dinner and checked out Bass Pro Shop. Audrena loved the waterfall, the fish, and the glass elevator!
Yesterday morning, we started with the device orientation. It included a wide range of discussion about Audrena's history, our expectations (although there was a separate meeting for this), a little education about the workings of the ear, the surgery, and the opportunity to hold the equipment from each of the three cochlear implant manufacturers: Med El, Cochlear, and Advanced Bionics. We had already done our research and knew which manufacturer we wanted to use, so after we were given a thorough introduction to each company, we signed the paperwork for Audrena to receive an Advanced Bionics implant!
Our last appointment was with the CI team leader for our expectations discussion. He asked lots of questions about what we expect as an outcome for Audrena post-implantation, how we would feel and what we would do if for some reason the implants were a fail for her, and discussed the long-term commitments for therapy sessions and finances regarding equipment replacement. It was a really great discussion.
At some point, we also learned that Boys Town has the capability for private webcasts. So our therapists here could actually watch Audrena having a therapy session there to learn what kinds of things Boys Town recommends for her. When it comes time for the implant activations, they can record the session for us as well as broadcasting the session live. It would be a secure internet connection where our family and friends could watch from home as Audrena hears her first sounds! How exciting!
Keep in mind that the team makes a decision as to whether or not to proceed with implantation for Audrena. They together determine candidacy, not one single person on the team. They meet on Wednesdays, so next week they will review this week's appointments and make their decision. However, we were told that the team discussed Audrena a bit at Wednesday's appointment even though we had not completed all of the appointments. Hopefully that is a very good sign for us! We also heard some little bits of things that we interpret to mean we'll be receiving some good news next week.
Randy and I left Omaha feeling better than we have felt in a long time. Every single person we have encountered at Boys Town, and I do mean every single person from the receptionists to the doctors, has been wonderful. We feel like we will have a truly fantastic team of professionals working on Audrena's side to help us ensure she will achieve her full potential. So right now we're just waiting for that phone call!
We had all of our pre-candidacy appointments at Boys Town over the past two days. It started with the vestibular testing on Wednesday morning. I was very nervous about it because the testing would help the doctors determine which ear to implant first, and possibly whether bilateral implants would even be an option for Audrena. We already knew that Audrena is missing two out of the three semicircular canals in her vestibular system. If the system had been working better on one side than the other, it would help the doctors make those important decisions. However, the tests showed that her vestibular system is not really functioning.
After the vestibular testing, we met with Dr. K. Our doctor, Dr. L., had a funeral to attend, and Dr. K. is the other implant surgeon. The team manager had assured me we would really like Dr. K., and she was right! He explained to us that, although it sounds bad that Audrena's vestibular system is not working, it's actually very good from a surgery standpoint. However, as we already knew, Audrena will have to rely on other senses for balance and walking skills. Water will also be more dangerous for her because people with absent vestibular function can't really tell which way is up in the water. So it will be very important for her to have swimming lessons, and swimming in a lake or river will be very dangerous because of the murky water where she would not be able to see the surface. As for the rest of our discussion, Dr. K. just spent time answering our questions and discussing genetics with us. I needed that. As Randy said to him, "You just lifted a huge weight off of her shoulders." Of course, nothing is concrete until we are able to meet with the geneticists and have testing done, but I had been worrying about a certain syndrome. Dr. K. doesn't feel that there is much of a chance that Audrena has it. Also during that appointment, Dr. L.'s awesome nurse (seriously, she's been really great to us throughout this process) gave us the immunization schedule for meningitis, and Audrena is up to par for the surgery. One less thing we have to worry about!
Then came the meeting with the Speech Language Pathologist. I was a little concerned about this meeting just because I had been told that in the past Boys Town recommended Total Communication. However, when we told her that we will be using Auditory Verbal Therapy, she was very supportive. We were happy to work out some details regarding coordinating therapies with our SLP here. Overall, the visit was very informative and just a really good conversation.
From there we took a lunch break at Perkins and went back to the hospital for our Audiology meeting. They did some sound booth testing and were able to get Audrena to respond to some very loud sounds. We still don't know if she was reacting to the sound, or to the vibrations. Then they went to a different room to test out the hearing aids. By this point, Audrena was ready for a nap, and things were not looking promising. However, when Randy saw the machine, he recognized it as something that Dr. M. had done at USD the day before. They were able to call and have the information faxed.
We had a good feeling at the end of the day. Then it was back to the hotel for a nap, and then we went to dinner and checked out Bass Pro Shop. Audrena loved the waterfall, the fish, and the glass elevator!
Yesterday morning, we started with the device orientation. It included a wide range of discussion about Audrena's history, our expectations (although there was a separate meeting for this), a little education about the workings of the ear, the surgery, and the opportunity to hold the equipment from each of the three cochlear implant manufacturers: Med El, Cochlear, and Advanced Bionics. We had already done our research and knew which manufacturer we wanted to use, so after we were given a thorough introduction to each company, we signed the paperwork for Audrena to receive an Advanced Bionics implant!
Our last appointment was with the CI team leader for our expectations discussion. He asked lots of questions about what we expect as an outcome for Audrena post-implantation, how we would feel and what we would do if for some reason the implants were a fail for her, and discussed the long-term commitments for therapy sessions and finances regarding equipment replacement. It was a really great discussion.
At some point, we also learned that Boys Town has the capability for private webcasts. So our therapists here could actually watch Audrena having a therapy session there to learn what kinds of things Boys Town recommends for her. When it comes time for the implant activations, they can record the session for us as well as broadcasting the session live. It would be a secure internet connection where our family and friends could watch from home as Audrena hears her first sounds! How exciting!
Keep in mind that the team makes a decision as to whether or not to proceed with implantation for Audrena. They together determine candidacy, not one single person on the team. They meet on Wednesdays, so next week they will review this week's appointments and make their decision. However, we were told that the team discussed Audrena a bit at Wednesday's appointment even though we had not completed all of the appointments. Hopefully that is a very good sign for us! We also heard some little bits of things that we interpret to mean we'll be receiving some good news next week.
Randy and I left Omaha feeling better than we have felt in a long time. Every single person we have encountered at Boys Town, and I do mean every single person from the receptionists to the doctors, has been wonderful. We feel like we will have a truly fantastic team of professionals working on Audrena's side to help us ensure she will achieve her full potential. So right now we're just waiting for that phone call!
May 9, 2012
Feeling Overwhelmed Today
I just talked with Dr. L. awhile ago. He was calling me back to answer some questions we had. Since he was at a conference and then trying to get caught up, it took awhile for him to get back to us.
First we discussed Audrena's risk factors for meningitis and the risk of facial nerve paralysis with the surgery. I'm relieved to hear that it is as we thought--those are not things that should keep us from going forward with the implants. The risk is still relatively small, especially because we do vaccinate on schedule. He has done at least 800 cochlear implant surgeries, and he has never had an issue with the facial nerve. Yes, these things are still risks, but even though they're low he still has to inform us.
We discussed Audrena's vestibular issues. He explained to me that a normal person has 3 semicircular canals, and she is missing 2 of them. The only one that formed is the superior semicircular canal. As a result, she'll be unsteady, and she'll have to use visual cues to be able to walk. He had explained that before, but now that I know exactly what the problem is, I'm a little more worried. I haven't had a whole lot of luck with finding information on how the absence of the other 2 canals will affect her. What I have found is that those canals control things like vertigo and posture, so I'm worried that her little world has been spinning and we don't know it. It's amazing what we take for granted. As part of the cochlear implant team's evaluations, she will undergo vestibular testing. I'm scared of what we'll find out, but I'm also looking forward to knowing more so that we know how to help her. I've said it before. Knowledge is power. In cases like this, when I don't know anything about what I'm facing, I feel weak and scared. I would just like to curl up in a ball and cry. So instead, I gather as much information as I can. I educate myself. If I know what I'm facing, if I have a game plan, then I deal much better with the situation. The problem right now is that I don't know, and I can't seem to find the information I need. So if anyone out there has experience with what happens when a person just doesn't have all 3 semicircular canals, please share it with me! Educate me.
As part of the discussion, I asked whether we would just treat any ear infections the same, using the Ciprodex drops. He explained that during the surgery, he would take Audrena's tubes out and patch the holes. That's when I essentially went, "Wait. I have big concerns with that." Audrena was very wobbly before her tube surgery. She had so much fluid built up that she was late to sit or crawl. She would steady herself with one hand while she sat. She army crawled to get around. After the tubes were put in, she stopped using her hands to steady herself, she crawled, and she began to cruise around the furniture. It was a HUGE improvement. Given that she has these vestibular abnormalities, I feel like she needs the tubes to keep the fluid at bay. He said what I already knew, that the tubes are an access point for bacteria. But he did say that he would consult with other surgeons around the country via e-mail to see what they would recommend in this situation.
He did reiterate that Audrena has other issues that will make surgery more challenging for him. She has small mastoids, which is where the implants are attached and where they drill to gain access for the electrode array. The auditory nerve canal opening is larger than normal, causing the potential for a spinal fluid leak which would have to be packed with tissue, and the auditory nerve canal narrows to a narrower-than-normal size. He did say that these are things he can deal with, but it does make things a challenge.
Now to the hearing aid trials. The cochlear implant team will meet today to review Audrena's case. They will discuss when to start the hearing aid trials and how long we will need them. That may determine whether we will be able to get them from USD, or whether we will need to get them from Boys Town.
I am just feeling a bit overwhelmed today. Some days are good. Some days I wonder how we will ever tackle all of this and get past it. Today is just an overwhelming day. But in the midst of this, I'm extremely thankful that we have a doctor (and a nurse) who is willing to take extra time to talk with us. He had patients waiting for him, yet he made sure my questions were answered. I'm SO grateful for that, and I do remember that when we are the waiting patients.
First we discussed Audrena's risk factors for meningitis and the risk of facial nerve paralysis with the surgery. I'm relieved to hear that it is as we thought--those are not things that should keep us from going forward with the implants. The risk is still relatively small, especially because we do vaccinate on schedule. He has done at least 800 cochlear implant surgeries, and he has never had an issue with the facial nerve. Yes, these things are still risks, but even though they're low he still has to inform us.
We discussed Audrena's vestibular issues. He explained to me that a normal person has 3 semicircular canals, and she is missing 2 of them. The only one that formed is the superior semicircular canal. As a result, she'll be unsteady, and she'll have to use visual cues to be able to walk. He had explained that before, but now that I know exactly what the problem is, I'm a little more worried. I haven't had a whole lot of luck with finding information on how the absence of the other 2 canals will affect her. What I have found is that those canals control things like vertigo and posture, so I'm worried that her little world has been spinning and we don't know it. It's amazing what we take for granted. As part of the cochlear implant team's evaluations, she will undergo vestibular testing. I'm scared of what we'll find out, but I'm also looking forward to knowing more so that we know how to help her. I've said it before. Knowledge is power. In cases like this, when I don't know anything about what I'm facing, I feel weak and scared. I would just like to curl up in a ball and cry. So instead, I gather as much information as I can. I educate myself. If I know what I'm facing, if I have a game plan, then I deal much better with the situation. The problem right now is that I don't know, and I can't seem to find the information I need. So if anyone out there has experience with what happens when a person just doesn't have all 3 semicircular canals, please share it with me! Educate me.
As part of the discussion, I asked whether we would just treat any ear infections the same, using the Ciprodex drops. He explained that during the surgery, he would take Audrena's tubes out and patch the holes. That's when I essentially went, "Wait. I have big concerns with that." Audrena was very wobbly before her tube surgery. She had so much fluid built up that she was late to sit or crawl. She would steady herself with one hand while she sat. She army crawled to get around. After the tubes were put in, she stopped using her hands to steady herself, she crawled, and she began to cruise around the furniture. It was a HUGE improvement. Given that she has these vestibular abnormalities, I feel like she needs the tubes to keep the fluid at bay. He said what I already knew, that the tubes are an access point for bacteria. But he did say that he would consult with other surgeons around the country via e-mail to see what they would recommend in this situation.
He did reiterate that Audrena has other issues that will make surgery more challenging for him. She has small mastoids, which is where the implants are attached and where they drill to gain access for the electrode array. The auditory nerve canal opening is larger than normal, causing the potential for a spinal fluid leak which would have to be packed with tissue, and the auditory nerve canal narrows to a narrower-than-normal size. He did say that these are things he can deal with, but it does make things a challenge.
Now to the hearing aid trials. The cochlear implant team will meet today to review Audrena's case. They will discuss when to start the hearing aid trials and how long we will need them. That may determine whether we will be able to get them from USD, or whether we will need to get them from Boys Town.
I am just feeling a bit overwhelmed today. Some days are good. Some days I wonder how we will ever tackle all of this and get past it. Today is just an overwhelming day. But in the midst of this, I'm extremely thankful that we have a doctor (and a nurse) who is willing to take extra time to talk with us. He had patients waiting for him, yet he made sure my questions were answered. I'm SO grateful for that, and I do remember that when we are the waiting patients.
May 1, 2012
One Small Sigh of Relief
Dr. L.'s nurse called me this morning. She did confirm that the auditory nerve was normal. And apparently either Dr. L. misspoke or we misunderstood. It was a radiologist that he needed to consult with about it, not a neurologist. In any case, that part is in fact normal, so we can breathe a small sigh of relief. In the meantime, we'll wait anxiously for the rest of our answers as Dr. L. is on a plane bound for the annual cochlear implant conference. His nurse was not sure if he would check in again today, so it may be a day or two before we have answers to the rest of our questions.
She did not know what exactly Dr. L. has planned for the hearing aid trials. She would check with him on that since we are able to get loaner hearing aids through USD. While we may be able to expedite the time frame, it's still important to get some stimulation to the auditory nerve until surgery, even if the actual sound benefit is not much.
I did ask what kind of professionals make up the cochlear implant team that we will meet with. She gave me a long list, and I'm not sure I even wrote all of them down. But here is the general makeup:
Audiologists
Speech Language Therapists/Pathologists
Psychologists
Researchers
The Team Manager
The Two Surgeons
The Surgeons' Nurses
She told me to rest assured that we would know every aspect of the cochlear implant process before Audrena is cleared for surgery. They will make sure we are completely ready, mentally, physically, or otherwise. I can't speak for the process at other CI centers, but I definitely feel like Boys Town is a great fit for us.
She did not know what exactly Dr. L. has planned for the hearing aid trials. She would check with him on that since we are able to get loaner hearing aids through USD. While we may be able to expedite the time frame, it's still important to get some stimulation to the auditory nerve until surgery, even if the actual sound benefit is not much.
I did ask what kind of professionals make up the cochlear implant team that we will meet with. She gave me a long list, and I'm not sure I even wrote all of them down. But here is the general makeup:
Audiologists
Speech Language Therapists/Pathologists
Psychologists
Researchers
The Team Manager
The Two Surgeons
The Surgeons' Nurses
She told me to rest assured that we would know every aspect of the cochlear implant process before Audrena is cleared for surgery. They will make sure we are completely ready, mentally, physically, or otherwise. I can't speak for the process at other CI centers, but I definitely feel like Boys Town is a great fit for us.
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