UPDATE: I felt the need to come back and update this post as we have
learned that Audrena's Usher Syndrome diagnosis was a mistake. Here is the post where we learned she does not have Usher Syndrome.
Monday was our annual IFSP review meeting. The team wrote new outcomes, and I mostly watched. I was a little under the weather with a bad case of laryngitis, and Randy wasn't able to get away from work. Plus, I have said before that the goals are not my strong point. Thankfully, we have some very experienced professionals! Some of the things we will be working on with Audrena in the next year are ling-6 discrimination and using 3 or more words to express her wants and needs. Those things seem pretty simple on the surface, but there are plenty of things to work on behind the scenes that contribute to Audrena's overall success.
We also discussed Usher Syndrome a bit. Audrena has Type 2C, but I think she must be an unusual case. For those who might not be regular readers, Audrena is missing two out of the three semicircular canals in her vestibular system. They just didn't form. So she has poor balance, much like people with Usher Syndrome Type 1. Our Audiologist explained that balance is made up of three components: the vestibular system, vision, and proprioception. Basically, her proprioceptive sense will be all that is left when her vision starts to narrow. Things like gymnastics are actually very good for her because it will help her learn to compensate. Audrena's physical therapist already does a phenomenal job working on balance-related activities with her. He sets up obstacle courses with stairs, uneven surfaces, balance foam, etc. The new physical therapy goals included things like working on walking stairs without a handrail and jumping.
One of Audrena's SLPs asked how Usher Syndrome will affect literacy for Audrena. My answer was that hopefully she shouldn't have to worry about that in the immediate future. The Usher expert that we met with a few weeks ago said that most patients still retain enough central vision to read even at 50 years old. It was a valid topic of discussion, though!
We also discussed the upcoming CI surgery and whether we should expect the new "ear" to fully catch up with the first. Hopefully it will happen, but there are certain milestones (18 months, 24 months, 3 years), and we've already sort of missed two of them with the second CI. With surgery approaching in less than two weeks, we are just praying for a successful implantation and will worry about catching up once that second implant is activated.
Also, we did check out the preschool classroom that Audrena will be in next year. Our Audiologist and SD School for the Deaf Outreach Consultant looked at things like class size, carpeting, wall coverings, curtains, and the presence of a soundfield system. I will fully admit that the idea of transitioning out of Birth to 3 Connections and into the school district scares me. It's unfamiliar territory, and I don't do well with that. So I guess it's a good thing that I have a year to educate myself! And thankfully Audrena has a fantastic team working hard to ensure that she has the best possible learning environment! We are incredibly grateful for every single person on Audrena's team.
Showing posts with label therapy. Show all posts
Showing posts with label therapy. Show all posts
May 2, 2013
April 8, 2013
A New Team Member
Last Monday also marked the start of our new Speech-Language Pathologist. She has good experience, and we really like her! Audrena will see her twice weekly, at least until she turns three and transitions to the school district. We feel like she is a great addition to Audrena's team!
We have an IFSP review meeting coming up in a few weeks. I'll be interested to see what kinds of goals Audrena will have in the next 6 months. She had asked me if there were any specific goals that we think Audrena should have. I will be honest and say that it's not our strong point in developing her goals. So we'll work with the professionals and see what we come up with. Audrena really has a great team, and we are comfortable and confident with their knowledge.
We have an IFSP review meeting coming up in a few weeks. I'll be interested to see what kinds of goals Audrena will have in the next 6 months. She had asked me if there were any specific goals that we think Audrena should have. I will be honest and say that it's not our strong point in developing her goals. So we'll work with the professionals and see what we come up with. Audrena really has a great team, and we are comfortable and confident with their knowledge.
December 5, 2012
We have an /s/!
Apparently Audrena just needed to get used to hearing the /s/ because she is now responding to it, even with the speech hoop! She is now hearing all 6 ling sounds, which represent the range for hearing speech.
Last week was our last session at USD until the winter break is over in January. It went really well. Audrena was very engaged during the session. I love that she can be in one room with the clinical grad students, and I can be in the observation room with K. (SLP) & J. (Audiologist), watching through the one-way glass because we can be having our own conversation without interrupting Audrena. We were discussing how things were going. I am, by nature, always hard on myself. I always think I should be doing better, no matter what the situation. So K. & J. took a moment to stop me in my tracks. They reminded me that Audrena has basically made a year of progress in just under 4 months. That really put things into perspective for me. I had been thinking she should be saying more words by now, but K. also reminded me that this is kind of like a volcano. There will be all sorts of things bubbling under the surface before we see an eruption of language. I think I needed those reminders! Logically, I know those things, but I always want something more, especially for Audrena because I want so much to see her excel, for her own benefit in life. And as if to tell me I was worrying for nothing, before we left Audrena reached out to me and said, "Up!" Up is something she has said randomly for awhile, but within the last week we have seen more of it and with a definite purpose.
We have also received Audrena's T-comm (photo at about the middle of the linked web page)! It's a new accessory for her Neptune which will fit over hear ear to bring the sound in at a natural placement, at the opening of the ear. Currently, the mic on the headpiece is where the sound is "located" for her, so it is more towards the back of her head. She will likely not use the T-comm for awhile, but it is new, so it is being offered at a discounted price for a limited time. We just knew we wanted her to have it because eventually it will make things like talking on the phone much easier!
Last week was our last session at USD until the winter break is over in January. It went really well. Audrena was very engaged during the session. I love that she can be in one room with the clinical grad students, and I can be in the observation room with K. (SLP) & J. (Audiologist), watching through the one-way glass because we can be having our own conversation without interrupting Audrena. We were discussing how things were going. I am, by nature, always hard on myself. I always think I should be doing better, no matter what the situation. So K. & J. took a moment to stop me in my tracks. They reminded me that Audrena has basically made a year of progress in just under 4 months. That really put things into perspective for me. I had been thinking she should be saying more words by now, but K. also reminded me that this is kind of like a volcano. There will be all sorts of things bubbling under the surface before we see an eruption of language. I think I needed those reminders! Logically, I know those things, but I always want something more, especially for Audrena because I want so much to see her excel, for her own benefit in life. And as if to tell me I was worrying for nothing, before we left Audrena reached out to me and said, "Up!" Up is something she has said randomly for awhile, but within the last week we have seen more of it and with a definite purpose.
We have also received Audrena's T-comm (photo at about the middle of the linked web page)! It's a new accessory for her Neptune which will fit over hear ear to bring the sound in at a natural placement, at the opening of the ear. Currently, the mic on the headpiece is where the sound is "located" for her, so it is more towards the back of her head. She will likely not use the T-comm for awhile, but it is new, so it is being offered at a discounted price for a limited time. We just knew we wanted her to have it because eventually it will make things like talking on the phone much easier!
October 11, 2012
A Little Reflection
I have spent some time today reflecting on the past 7 months. Maybe it's because today was our IFSP review meeting. Maybe it's because I heard about another family starting this journey. Maybe it's because my mind has been on another family whose baby boy will have bilateral cochlear implant surgery next week. No matter what the reason, I realize we have a lot to be thankful for.
We have been on a wild ride this year. March 21st brought the first diagnosis of profound hearing loss. In April, we received a second opinion diagnosis that Audrena is profoundly deaf. In May, we underwent cochlear implant evaluations, and Audrena became a candidate for surgery. In June, we waited for insurance approval. In July, Audrena received her right side cochlear implant. In August, Audrena's life was drastically changed as she received the gift of sound when her implant was activated. She also underwent what should have been her second implant surgery, but the removal of a choleasteatoma delayed those plans. During the past 2 months, we have watched Audrena blossom in ways she never could have without the cochlear implants. And the fun has just begun! I am thankful for modern technology, a top notch surgeon, and talented Audiologists.
When we started this blog, we vowed that we would be honest and real. This is as real as it gets. These past months were the hardest times of my life, and they came just after I lost my mom, my rock. I doubted doctors. I hated my genes and myself, convinced that I was to blame for Audrena's disabilities (and it may still be genetics, but I will revisit that when the time comes). We cried. We prayed. We begged God to make things different for Audrena. We wanted a miracle. Then I doubted God. And then we went to church. It was ultimately through church that we were introduced to another family traveling the same path. Their little boy is the one who will have surgery next week. I am praying for strength for them next week. And today I am thankful for God, who does have plan for us, even if it's not the plan we had in mind. I am also convinced that my mom has been Audrena's guardian angel throughout this journey, and for that I am also thankful.
We recently heard about yet another family who may be traveling on a hearing journey of their own. To them, I would say that it will be hard, but it will be ok. You will get through it, but don't be afraid to ask for help from family and friends. They may not always understand, but they will be there for you. And seek out a mentor family because they will understand, and they will be able to show you proof that things will be ok. That brings me to my next reflection. I am firmly convinced that we could not have made it to where we are today without the support of such wonderful family and friends. Some of those friends have come through Facebook, or blogs, or e-mail, and they have been wonderful mentors to us. They have shared their stories, and they gave us hope when we needed it most. We have seen their children succeed with their implants. Audrena would have been just fine with sign language and no implants, but we wanted her to have the chance to hear us say, "I love you." We wanted certain things for her, and we needed to see that it was possible because at the time we couldn't see far enough into the future to today, when she can hear us say, "I love you," and just about everything else we say to her. I could not have made it to the good place I am in today if it were not for these people, whom we are happy to call our friends. So today I am thankful for Lori, Susan, Karissa, Deb, Anne, Keith, their families, and anyone I have inadvertently omitted. We hope to someday have the opportunity to provide that kind of support to another family because it's a rocky path to travel, and it helps to have someone there to remind you that there will be a pot of gold at the end. It will all be worthwhile, and everything will be ok.
This morning, we met with our team to review Audrena's IFSP. At our first IFSP meeting, we had no idea what to expect, so we were just kind of along for the ride. This morning, we were still along for the ride, but we felt experienced enough to give some input as needed. It was very reassuring and exciting to look around the room and see the wealth of knowledge, to see so many talented professionals who genuinely want to help Audrena succeed. A few months ago, to say that we felt overwhelmed by the number of therapy sessions, and by the number of people involved, would be an understatement. Now that we are in the thick of it, we realize that it's hard work, but we're seeing rewards. We're seeing wonderful progress. We have a team of people who are working together better than we had imagined. And we have confidence. I looked around that room this morning and felt like the pieces have all just fallen into place. Audrena will achieve the successes we had hoped for because she has the right team helping her along the way. I am thankful for every single person in that room today.
When I was a little girl, I always said I wanted three children someday. I never imagined that any of those three children would be anything other than "normal," happy, active individuals. God has a different definition of "normal." He gave us a challenge. But he also gave us a blessing, many of them in fact. Seven months ago, I didn't want a deaf child. I wanted a "normal" child. I didn't want cochlear implants. I wanted Audrena to have normal hearing. Today, we have a new "normal." We have three normal, happy, active children. I have everything I have ever wanted, and more. Today, I am thankful for a loving, wonderful husband, Randy, and our three beautiful, perfect children, Reyana, Kelton, and Audrena.
Because I am the "writer" in our family, I do most of the blogging. Randy often tells me that I write a lot about what I am feeling, and not so much about him. Well, that's because I am blogging from my point of view. I do try to include him the "we" phrases because he does feel the things I am feeling much of the time. I think I can safely say that in this post, he feels what I feel. He thinks what I think. And he is thankful for what I am thankful for. I love him, and I love that we are a team.
We have been on a wild ride this year. March 21st brought the first diagnosis of profound hearing loss. In April, we received a second opinion diagnosis that Audrena is profoundly deaf. In May, we underwent cochlear implant evaluations, and Audrena became a candidate for surgery. In June, we waited for insurance approval. In July, Audrena received her right side cochlear implant. In August, Audrena's life was drastically changed as she received the gift of sound when her implant was activated. She also underwent what should have been her second implant surgery, but the removal of a choleasteatoma delayed those plans. During the past 2 months, we have watched Audrena blossom in ways she never could have without the cochlear implants. And the fun has just begun! I am thankful for modern technology, a top notch surgeon, and talented Audiologists.
When we started this blog, we vowed that we would be honest and real. This is as real as it gets. These past months were the hardest times of my life, and they came just after I lost my mom, my rock. I doubted doctors. I hated my genes and myself, convinced that I was to blame for Audrena's disabilities (and it may still be genetics, but I will revisit that when the time comes). We cried. We prayed. We begged God to make things different for Audrena. We wanted a miracle. Then I doubted God. And then we went to church. It was ultimately through church that we were introduced to another family traveling the same path. Their little boy is the one who will have surgery next week. I am praying for strength for them next week. And today I am thankful for God, who does have plan for us, even if it's not the plan we had in mind. I am also convinced that my mom has been Audrena's guardian angel throughout this journey, and for that I am also thankful.
We recently heard about yet another family who may be traveling on a hearing journey of their own. To them, I would say that it will be hard, but it will be ok. You will get through it, but don't be afraid to ask for help from family and friends. They may not always understand, but they will be there for you. And seek out a mentor family because they will understand, and they will be able to show you proof that things will be ok. That brings me to my next reflection. I am firmly convinced that we could not have made it to where we are today without the support of such wonderful family and friends. Some of those friends have come through Facebook, or blogs, or e-mail, and they have been wonderful mentors to us. They have shared their stories, and they gave us hope when we needed it most. We have seen their children succeed with their implants. Audrena would have been just fine with sign language and no implants, but we wanted her to have the chance to hear us say, "I love you." We wanted certain things for her, and we needed to see that it was possible because at the time we couldn't see far enough into the future to today, when she can hear us say, "I love you," and just about everything else we say to her. I could not have made it to the good place I am in today if it were not for these people, whom we are happy to call our friends. So today I am thankful for Lori, Susan, Karissa, Deb, Anne, Keith, their families, and anyone I have inadvertently omitted. We hope to someday have the opportunity to provide that kind of support to another family because it's a rocky path to travel, and it helps to have someone there to remind you that there will be a pot of gold at the end. It will all be worthwhile, and everything will be ok.
This morning, we met with our team to review Audrena's IFSP. At our first IFSP meeting, we had no idea what to expect, so we were just kind of along for the ride. This morning, we were still along for the ride, but we felt experienced enough to give some input as needed. It was very reassuring and exciting to look around the room and see the wealth of knowledge, to see so many talented professionals who genuinely want to help Audrena succeed. A few months ago, to say that we felt overwhelmed by the number of therapy sessions, and by the number of people involved, would be an understatement. Now that we are in the thick of it, we realize that it's hard work, but we're seeing rewards. We're seeing wonderful progress. We have a team of people who are working together better than we had imagined. And we have confidence. I looked around that room this morning and felt like the pieces have all just fallen into place. Audrena will achieve the successes we had hoped for because she has the right team helping her along the way. I am thankful for every single person in that room today.
When I was a little girl, I always said I wanted three children someday. I never imagined that any of those three children would be anything other than "normal," happy, active individuals. God has a different definition of "normal." He gave us a challenge. But he also gave us a blessing, many of them in fact. Seven months ago, I didn't want a deaf child. I wanted a "normal" child. I didn't want cochlear implants. I wanted Audrena to have normal hearing. Today, we have a new "normal." We have three normal, happy, active children. I have everything I have ever wanted, and more. Today, I am thankful for a loving, wonderful husband, Randy, and our three beautiful, perfect children, Reyana, Kelton, and Audrena.
Because I am the "writer" in our family, I do most of the blogging. Randy often tells me that I write a lot about what I am feeling, and not so much about him. Well, that's because I am blogging from my point of view. I do try to include him the "we" phrases because he does feel the things I am feeling much of the time. I think I can safely say that in this post, he feels what I feel. He thinks what I think. And he is thankful for what I am thankful for. I love him, and I love that we are a team.
September 17, 2012
Switching therapy up a bit.
Awhile ago, I mentioned that we were going to be changing Speech-Language Pathologists through Birth to 3. It's difficult in a rural area to find experience with cochlear implants, but the SD School for the Deaf outreach team was able to suggest someone who would travel twice a week to see Audrena. Our previous SLP is probably very good, but she just didn't have the experience for us to draw from. It was apparent at the first session that the new one does, and she came highly recommended for her previous work with cochlear implant children. Audrena warmed right up to her, and we are seeing good things in the sessions. Plus, we are getting new ideas for "games" to play at home that will help Audrena learn to listen and develop her speech and language.
Our SD School for the Deaf consultant came down to see us last week as well. Audrena was a bit of a show-off! We played with a tiger toy for a bit, and suddenly Audrena exclaimed, "Rawr!" That was another first for her. She also walked and said "aahhh" immediately when I got out the airplane. Probably the funniest part was when K. was talking to her, and Audrena just rolled her eyes. We do have a sassy girl! K. was able to give us some information packets as well. We're always excited for new ideas!
Audrena met her physical therapy goals last week. We've also asked our SLP and our SDSD consultant to review the speech goals. We think it's time for an IFSP meeting to revise some things!
Our SD School for the Deaf consultant came down to see us last week as well. Audrena was a bit of a show-off! We played with a tiger toy for a bit, and suddenly Audrena exclaimed, "Rawr!" That was another first for her. She also walked and said "aahhh" immediately when I got out the airplane. Probably the funniest part was when K. was talking to her, and Audrena just rolled her eyes. We do have a sassy girl! K. was able to give us some information packets as well. We're always excited for new ideas!
Audrena met her physical therapy goals last week. We've also asked our SLP and our SDSD consultant to review the speech goals. We think it's time for an IFSP meeting to revise some things!
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 23, 2012
IFSP Meeting
We had our IFSP meeting yesterday.
Audrena showed off a little for her team. She walked between me and Daddy, holding our fingers, many times. The physical therapist was happy to see that! We decided that Audrena should have physical therapy once a week for 30 minutes. Her 6 month goal is to play while standing and to walk 10 steps independently. I know the point of the goal is to be realistic, but it seemed a tad silly to me. I feel like she'll reach them much sooner than 6 months. But I do know that her balance will cause challenges. In the meantime, we can adjust the schedule as needed, so if we feel like she needs more sessions we can work that in. I had not met our physical therapist at the initial evaluation, so I didn't know what to expect. I'm happy to report that I think he'll be good to work with.
The early childhood education teacher recommended evaluating Audrena once a month using the HELP method and set some goals for her as well. We feel confident with those things as well.
The speech therapist from the hospital was able to be there as well. We felt like speech therapy once a week until she has her first implant activated was a good approach to take. Then from there we can increase to twice a week. I'm thinking more like 3 times a week would be good, but we'll cross that bridge after we speak with the professionals at Boys Town next week. Our team was open to us consulting with Boys Town and switching things up as necessary. We were glad to hear that, although we don't have a certified Auditory Verbal therapist in our area, our speech therapist is educated in it. That was one thing I was not sure about since I admittedly don't know a whole lot about speech therapists' educational training.
We did tell the team that, although it may be a bit out of the norm, we want AV therapy and possibly down the road when Audrena's language is caught up to her peers we would work in sign language. I'm not sure that really fits any therapy model we've seen yet. I think that usually a family would pick just one method, which is essentially what we're doing with AV therapy, but I'm not sure that other families work in sign language at a completely different point in time. The fact is, we don't know if we will even need sign language. With bilateral implants, the chances of both implants failing at the same time are probably pretty slim, and there are waterproof implants now, so she can wear them while swimming. We do know absolutely, however, that our main focus over the next few years will be developing Audrena's ability to speak normally and to really learn to listen with her implants.
Yesterday was also the first time we met our SD School for the Deaf outreach person. I had talked to her on the phone a few weeks ago, and I had a good impression then. She stayed after the meeting for quite awhile, just talking with us about the implants and different things. She doesn't get many clients who use Boys Town. A lot of them go to the Mayo Clinic (which was one of our options, too) or just use one of the two surgeons in Sioux Falls. We shared our experiences with her, and we can truly say that we do not have one bad thing to say about Boys Town up to this point. Every single person there has been nothing short of amazing. When she finally did leave our house, we had a great feeling about her. We think she will be really good to work with!
So overall, we feel like we're on the right track. While we're at Boys Town, we hope to be able to go over things with them a bit to determine if there is anything we need to change. Next week is truly the beginning of an intensive journey for us. We began this journey several months ago, but it's about to get more crazy with many, many therapy appointments, pre-op appointments, the surgeries themselves, activations, mapping appointments, etc. The next 3-4 years will be hard, but this is one time shot. We cannot afford to screw up. These coming years will be a sacrifice in some ways for us, but they will affect Audrena's entire life. Yes, this is the beginning of building the foundation for her whole life. We are dedicated to giving her the best foundation that we possibly can.
Audrena showed off a little for her team. She walked between me and Daddy, holding our fingers, many times. The physical therapist was happy to see that! We decided that Audrena should have physical therapy once a week for 30 minutes. Her 6 month goal is to play while standing and to walk 10 steps independently. I know the point of the goal is to be realistic, but it seemed a tad silly to me. I feel like she'll reach them much sooner than 6 months. But I do know that her balance will cause challenges. In the meantime, we can adjust the schedule as needed, so if we feel like she needs more sessions we can work that in. I had not met our physical therapist at the initial evaluation, so I didn't know what to expect. I'm happy to report that I think he'll be good to work with.
The early childhood education teacher recommended evaluating Audrena once a month using the HELP method and set some goals for her as well. We feel confident with those things as well.
The speech therapist from the hospital was able to be there as well. We felt like speech therapy once a week until she has her first implant activated was a good approach to take. Then from there we can increase to twice a week. I'm thinking more like 3 times a week would be good, but we'll cross that bridge after we speak with the professionals at Boys Town next week. Our team was open to us consulting with Boys Town and switching things up as necessary. We were glad to hear that, although we don't have a certified Auditory Verbal therapist in our area, our speech therapist is educated in it. That was one thing I was not sure about since I admittedly don't know a whole lot about speech therapists' educational training.
We did tell the team that, although it may be a bit out of the norm, we want AV therapy and possibly down the road when Audrena's language is caught up to her peers we would work in sign language. I'm not sure that really fits any therapy model we've seen yet. I think that usually a family would pick just one method, which is essentially what we're doing with AV therapy, but I'm not sure that other families work in sign language at a completely different point in time. The fact is, we don't know if we will even need sign language. With bilateral implants, the chances of both implants failing at the same time are probably pretty slim, and there are waterproof implants now, so she can wear them while swimming. We do know absolutely, however, that our main focus over the next few years will be developing Audrena's ability to speak normally and to really learn to listen with her implants.
Yesterday was also the first time we met our SD School for the Deaf outreach person. I had talked to her on the phone a few weeks ago, and I had a good impression then. She stayed after the meeting for quite awhile, just talking with us about the implants and different things. She doesn't get many clients who use Boys Town. A lot of them go to the Mayo Clinic (which was one of our options, too) or just use one of the two surgeons in Sioux Falls. We shared our experiences with her, and we can truly say that we do not have one bad thing to say about Boys Town up to this point. Every single person there has been nothing short of amazing. When she finally did leave our house, we had a great feeling about her. We think she will be really good to work with!
So overall, we feel like we're on the right track. While we're at Boys Town, we hope to be able to go over things with them a bit to determine if there is anything we need to change. Next week is truly the beginning of an intensive journey for us. We began this journey several months ago, but it's about to get more crazy with many, many therapy appointments, pre-op appointments, the surgeries themselves, activations, mapping appointments, etc. The next 3-4 years will be hard, but this is one time shot. We cannot afford to screw up. These coming years will be a sacrifice in some ways for us, but they will affect Audrena's entire life. Yes, this is the beginning of building the foundation for her whole life. We are dedicated to giving her the best foundation that we possibly can.
May 3, 2012
Auditory-Verbal Therapy Explained
Here is a link that explains in detail what Auditory-Verbal Therapy is all about. This is the approach that we would like to take for Audrena once she has her implants activated. I'm not sure at this point that we have any "certified" AV therapists in our area, but I'm confident that if not, the people we will be working with can easily model her sessions with these principles in mind. We'll do whatever it takes to maximize Audrena's potential with her implants.
http://www.listeningforlife.com/AVTprogram.html
http://www.listeningforlife.com/AVTprogram.html
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