Last night, Randy took Reyana and Kelton on a little ride to the convenience store for a treat. He brought back candy bars. I gave Audrena a bite of mine, and then she walked over to Randy to try a bite of his. After the first bite, she looked up at him and said very clearly, "More." She only said it once, but it was crystal clear. I can't wait until she is saying words regularly!
This morning in speech, she turned to her name on the first try 3 out of 5 times. She is doing well with the ling sounds except "sssss." We can't tell if she's just not hearing it, or if she's not reacting to it. We'll bring this up at Thursday's USD speech session to see what our Audiologist thinks. Our new Speech-Language Pathologist, K. is absolutely wonderful with Audrena, and we're seeing more and more progress. K. has also said she plans to come to next Thursday's session at USD so she can coordinate with our professionals there. She also has worked with J., our Speech-Language Pathologist at Boys Town, in the past, and J. remembered her when I e-mailed her about the change in therapists. It's so wonderful to see such a willingness to work together! We feel like we have a fantastic team, and Audrena will just thrive with that kind of cooperation. Every day I am amazed that Boys Town is over 2 hours away from here, yet everyone here seems to know everyone there in some manner!
Edited to Add: After I wrote this blog post, Randy informed me that Audrena said "more" a couple times during speech as well. Yay! Way to go, Audrena!
September 18, 2012
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!
Fun at the zoo!
Saturday we took the kids to the zoo. It was so much fun for the big kids and a great listening experience for Audrena! We listened to the gong and practiced pointing to our ear when we heard it. We growled at the bears, rawred at the tigers, baaed at the sheep, mehed at the goats, sssssed at the snakes, and discussed what each animal was and what it was doing. Grandma and Grandpa quacked at the ducks with Audrena and showed her the turtles, which she got so excited about!
I think the best part of the trip was when we watched the two cows in the petting zoo. They were very vocal. Audrena just watched intently as they mooed, and as I mooed back at them. She studied them up close, but she wouldn't touch them. Then as we left, they continued to moo, and she mooed back at them as if to say, "bye bye." It was so cute!
I think the best part of the trip was when we watched the two cows in the petting zoo. They were very vocal. Audrena just watched intently as they mooed, and as I mooed back at them. She studied them up close, but she wouldn't touch them. Then as we left, they continued to moo, and she mooed back at them as if to say, "bye bye." It was so cute!
September 13, 2012
Speech Banana Revisited
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.
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.
Audrena is walking!
Audrena's physical therapist has been saying for awhile now that she has all the pieces of the puzzle to be walking, but she lacks the confidence to do it. Well, last night she found the confidence! She went from walking about 4-5 steps at a time to walking all the way across the room by herself!
We were told that kids with vestibular issues usually walk later, but typically by 2 years. Audrena was 18 months and 2 days old yesterday, so she's just on the outside of the normal range. I've been told by a friend who is an occupational therapist that they are not considered delayed until 18 months. Way to go, Audrena!
Notice in the video her CI fell off, and she dragged it across the room. I was not about to stop her to put it back on! Instead, I backed up and pulled Reyana with me so that Audrena would keep walking.
Reyana was so proud of Audrena, and she was so excited that Audrena wanted to walk to her! What a neat moment between sisters!
We were told that kids with vestibular issues usually walk later, but typically by 2 years. Audrena was 18 months and 2 days old yesterday, so she's just on the outside of the normal range. I've been told by a friend who is an occupational therapist that they are not considered delayed until 18 months. Way to go, Audrena!
Notice in the video her CI fell off, and she dragged it across the room. I was not about to stop her to put it back on! Instead, I backed up and pulled Reyana with me so that Audrena would keep walking.
Reyana was so proud of Audrena, and she was so excited that Audrena wanted to walk to her! What a neat moment between sisters!
September 11, 2012
Advanced Bionics wins award for Neptune
Congratulations, Advanced Bionics! The completely waterproof Neptune was a huge reason we chose Advanced Bionics, as well as their programming and customer service. We felt it was the best fit for Audrena and our family, although the other CI manufacturers give great results as well.
http://scvnews.com/?p=34633
http://scvnews.com/?p=34633
"Valencia-based Advanced Bionics, the
global leader in cochlear implant technology and a subsidiary of the
Sonova Group, announced Monday that Neptune – the world’s first and only
swimmable sound processor – has earned a prestigious product design
award from the German-based Red Dot Institute for Advanced Design
Studies. Neptune, one of 4,515 products submitted by manufacturers from
around the globe for this renowned product competition, was awarded a
coveted 'Red Dot Award: Product Design 2012' at a July gala in Essen,
Germany, after undergoing an extensive evaluation process from a
30-member jury composed of product design experts."
"This design seal of approval from Red Dot represents the third award garnered by Neptune so far this year–a considerable achievement given the waterproof sound processor was introduced a few short months ago in the first part of 2012. Earlier this year, the Industrial Designers Society of America Northwest honored Neptune with a Silver Shaggie award in recognition of excellence in product design. Neptune was also recognized as a Finalist at the 2012 Medical Design Excellence Awards competition held in Philadelphia in late May."
"This design seal of approval from Red Dot represents the third award garnered by Neptune so far this year–a considerable achievement given the waterproof sound processor was introduced a few short months ago in the first part of 2012. Earlier this year, the Industrial Designers Society of America Northwest honored Neptune with a Silver Shaggie award in recognition of excellence in product design. Neptune was also recognized as a Finalist at the 2012 Medical Design Excellence Awards competition held in Philadelphia in late May."
September 10, 2012
Just when we started to doubt...
We have been worried about Audrena's progress since the last sound booth testing. At home we have seen progress, but we so badly wanted a good audiogram to see where she is, and what we got was not ideal. So this week, we will take Audrena to USD for some booth testing in the morning, which will hopefully be a better result for us since our last booth work took place during nap time.
But yesterday, just for the day, we were able to put our worries aside. We spent the afternoon and part of the evening at Grandma & Grandpa's house with family. Audrena, Randy, and I played her new favorite game, turning the light switch on and off. Each time, we would say, "The light is on," or, "The light is off." We were impressed when Audrena would say, "fff," after we said, "The light is off." We are certain she was trying to say "off." She did that several times. Later, we played with this toy, which is one of her favorites. There is a light switch on the side that turns on/off a light in the window. I said, "Audrena, turn the light on." She had her back to me when I said it, and she turned the light on!
Later on, Daddy took the kids for a slow ride on the John Deere Gator. He held Audrena on his lap, and as they went over bumps or down an incline, he would say, "Woo hoo!" Audrena repeated "woo hoo" a few times. Then, after he brought the kids back into the house, Grandma said to her, "Where's Papa?" Audrena turned to point at Grandpa. We followed it up with, "Where's Daddy?" She turned to point at Randy. She also did this more than once when asked.
So while we are still a little concerned about last week's sound booth testing not being at the levels we had hoped for, we are optimistic that we just have one stubborn little girl. Hopefully she will do a wonderful job this week at USD so that they can get a good audiogram, and we can put our worries to rest for good.
But yesterday, just for the day, we were able to put our worries aside. We spent the afternoon and part of the evening at Grandma & Grandpa's house with family. Audrena, Randy, and I played her new favorite game, turning the light switch on and off. Each time, we would say, "The light is on," or, "The light is off." We were impressed when Audrena would say, "fff," after we said, "The light is off." We are certain she was trying to say "off." She did that several times. Later, we played with this toy, which is one of her favorites. There is a light switch on the side that turns on/off a light in the window. I said, "Audrena, turn the light on." She had her back to me when I said it, and she turned the light on!
Later on, Daddy took the kids for a slow ride on the John Deere Gator. He held Audrena on his lap, and as they went over bumps or down an incline, he would say, "Woo hoo!" Audrena repeated "woo hoo" a few times. Then, after he brought the kids back into the house, Grandma said to her, "Where's Papa?" Audrena turned to point at Grandpa. We followed it up with, "Where's Daddy?" She turned to point at Randy. She also did this more than once when asked.
So while we are still a little concerned about last week's sound booth testing not being at the levels we had hoped for, we are optimistic that we just have one stubborn little girl. Hopefully she will do a wonderful job this week at USD so that they can get a good audiogram, and we can put our worries to rest for good.
An absolutely ingenious invention!
Since sometime around April, we (ok, I, but I share with Randy) have been corresponding with a family from Lincoln, NE, both through e-mail and Facebook. They have a daughter who just entered kindergarten way ahead of the game. She received bilateral cochlear implants from the same doctor who did Audrena's surgeries. Lily's grandmothers came up with an absolutely ingenious idea for a tank top that holds the Advanced Bionics Neptune processors very nicely! We are very thankful to Lily's mom and grandma (who sews them by hand!) for sending one to Audrena. I have since purchased some tank tops and am in the process of making some for Audrena, using the other tank top and her detailed instructions as a guide.
Here is a link to their original blog post about the tank tops. I cannot praise them enough. Before the tank top, we were constantly putting the headpiece back on Audrena's head because the little cord clips would catch just enough to pull the headpiece off when Audrena would move a certain way. We always struggled with where to clip the processor on her clothing, and we could already predict that it would become a problem during potty training. The AB harness is pretty bulky, so although it was a decent solution for certain outfits, it was not our preferred method for "wearing" the processor. This tank top solves everything. Daycare has even noticed that the headpiece doesn't fall off as often. The cord tabs (our tank has 2) in the back allow the cord to slide as needed while still keeping it in place. The processor fits nicely into the pocket, and it sits at her side, so diaper changes and the car seat are no problem. So for this wonderful invention, I send out a public THANK YOU to Lily's family for the tank top and for the instructions so that I can make more.
To everyone else, I completely recommend reading Lily's blog, which is full of great information about cochlear implants, and it's a wonderful testament to what cochlear implants can do for a person. This blog is what has lifted our spirits during tough times. We could see the possibilities for Audrena by reading about Lily's progress. She is truly an amazing child, and we pray that Audrena can have the same kind of results from her CIs, with some hard work of course. Her parents are an inspiration, and her mom has been a great mentor for us.
http://ardinger.typepad.com/
Here is a link to their original blog post about the tank tops. I cannot praise them enough. Before the tank top, we were constantly putting the headpiece back on Audrena's head because the little cord clips would catch just enough to pull the headpiece off when Audrena would move a certain way. We always struggled with where to clip the processor on her clothing, and we could already predict that it would become a problem during potty training. The AB harness is pretty bulky, so although it was a decent solution for certain outfits, it was not our preferred method for "wearing" the processor. This tank top solves everything. Daycare has even noticed that the headpiece doesn't fall off as often. The cord tabs (our tank has 2) in the back allow the cord to slide as needed while still keeping it in place. The processor fits nicely into the pocket, and it sits at her side, so diaper changes and the car seat are no problem. So for this wonderful invention, I send out a public THANK YOU to Lily's family for the tank top and for the instructions so that I can make more.
To everyone else, I completely recommend reading Lily's blog, which is full of great information about cochlear implants, and it's a wonderful testament to what cochlear implants can do for a person. This blog is what has lifted our spirits during tough times. We could see the possibilities for Audrena by reading about Lily's progress. She is truly an amazing child, and we pray that Audrena can have the same kind of results from her CIs, with some hard work of course. Her parents are an inspiration, and her mom has been a great mentor for us.
http://ardinger.typepad.com/
September 8, 2012
It must be because she's a redhead.
We went to get Audrena's steri strips off Wednesday morning. Dr. L. also removed some of the packing material from her left ear so that we can have an earmold made for the hearing aid that we'll use until she can have the implant. He wanted to leave as much as possible so that the fat grafts he used to patch the tube holes can heal. We will go back in a month to have the packing completely removed from both ears. Let's just say that Audrena was not happy with Dr. L. by the time the appointment was over. In fact, as we held her down for him to remove the packing, she turned all sorts of blue and purple! He commented that her feisty attitude comes from her red hair, and looked pointedly at me (for those who have not seen pictures, I have red hair). His nurse had said the same thing to me earlier, pointing out that those redheaded qualities would serve Audrena well in life.
Then we went to a programming appointment with J. It was Audrena's nap time, and she was pretty much uncooperative for most of the appointment. J. didn't tell me exactly at what levels Audrena is hearing, but she did say the responses they got in the booth were at louder levels than they had hoped for. However, based on what we have told her about the sounds Audrena is making at home, she did not adjust the program. At some point during the appointment, we heard that Audrena's stubbornness must come from her red hair. I see a theme!
From there, we went to a speech session. Audrena did a good job during that session, making sounds like "mmm," "oooo," and "aaahhhh." I have not put anything on the blog about our speech sessions here at home until now. For some time, we debated about asking for a new Speech Language Pathologist because, while the one we had was good, she has not worked much with cochlear implants. We wanted someone with lots of experience, and we think our SD School for the Deaf outreach consultant has found us one. Our Boys Town SLP agreed with our decision and was happy to see that we were seeking out experience. So to the new cochlear implant parents out there, I encourage you to do everything in your power to find experienced people to work with your child. It's so important because they will know exactly what your child needs, and they will be able to give you lots of ideas for things to do at home. That's what we need at this point in our journey.
So, here is a quick recap of the progress we have seen and the sounds Audrena makes.
"aaahhh" for airplane
"ooooo" for fire truck
"mmm" when she eats
"moo" for cow
"baa" for sheep (once at this point)
"boo" when playing peek-a-boo
"uh oh" when she dropped an item (once at this point)
attempted to say "bubbles" while we blew bubbles, although it was not clear
Responds to "turn the light on," or "turn the light off" when told. The light switches are a fun cause/effect game that Audrena loves to play.
Understands "bye bye" without being waved at.
And now, I have to give a "way to go" to Advanced Bionics customer service! We had noticed that Audrena's headpiece periodically did not sound right during our daily checks. After several attempts at trying to figure out if it was the headpiece, the cord, or the earbuds we use to listen to it, we called AB. They immediately said they would send us a new headpiece and cord. (For now we are using the backups.) Granted, they are under warranty, but I had heard in the past that AB has fantastic customer service and overnight shipping of replacement parts. This was our first experience, and we're impressed. As for the headpiece, I'm sure it's because Audrena is always putting it in her mouth, but at this point I'm not sure what to do about that. She puts everything in her mouth just like Kelton did at this age. I guess we'll just continue to be vigilant about watching her and about putting it in the dryer every night.
Then we went to a programming appointment with J. It was Audrena's nap time, and she was pretty much uncooperative for most of the appointment. J. didn't tell me exactly at what levels Audrena is hearing, but she did say the responses they got in the booth were at louder levels than they had hoped for. However, based on what we have told her about the sounds Audrena is making at home, she did not adjust the program. At some point during the appointment, we heard that Audrena's stubbornness must come from her red hair. I see a theme!
From there, we went to a speech session. Audrena did a good job during that session, making sounds like "mmm," "oooo," and "aaahhhh." I have not put anything on the blog about our speech sessions here at home until now. For some time, we debated about asking for a new Speech Language Pathologist because, while the one we had was good, she has not worked much with cochlear implants. We wanted someone with lots of experience, and we think our SD School for the Deaf outreach consultant has found us one. Our Boys Town SLP agreed with our decision and was happy to see that we were seeking out experience. So to the new cochlear implant parents out there, I encourage you to do everything in your power to find experienced people to work with your child. It's so important because they will know exactly what your child needs, and they will be able to give you lots of ideas for things to do at home. That's what we need at this point in our journey.
So, here is a quick recap of the progress we have seen and the sounds Audrena makes.
"aaahhh" for airplane
"ooooo" for fire truck
"mmm" when she eats
"moo" for cow
"baa" for sheep (once at this point)
"boo" when playing peek-a-boo
"uh oh" when she dropped an item (once at this point)
attempted to say "bubbles" while we blew bubbles, although it was not clear
Responds to "turn the light on," or "turn the light off" when told. The light switches are a fun cause/effect game that Audrena loves to play.
Understands "bye bye" without being waved at.
And now, I have to give a "way to go" to Advanced Bionics customer service! We had noticed that Audrena's headpiece periodically did not sound right during our daily checks. After several attempts at trying to figure out if it was the headpiece, the cord, or the earbuds we use to listen to it, we called AB. They immediately said they would send us a new headpiece and cord. (For now we are using the backups.) Granted, they are under warranty, but I had heard in the past that AB has fantastic customer service and overnight shipping of replacement parts. This was our first experience, and we're impressed. As for the headpiece, I'm sure it's because Audrena is always putting it in her mouth, but at this point I'm not sure what to do about that. She puts everything in her mouth just like Kelton did at this age. I guess we'll just continue to be vigilant about watching her and about putting it in the dryer every night.
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