This past weekend was a fun one for our family. Friday night we made a spontaneous trip to the Kirby Science Discovery Center in Sioux Falls. We had forgotten that it was the "Free First Friday" night. The place was packed! And it was noisy and loud. I was disappointed that it was so loud and we had forgotten the Neptune Connect. It's the part that fits onto Audrena's processor to allow us to change her programming slot. We could not change her program to Clear Voice without it. So she would have nothing to help her filter out the noise. As it turns out, my disappointment was short-lived. As we let Audrena explore, I stood about 3-4 feet from her and said her name. She turned to me immediately! We then decided to test it out. Randy was a little farther from her, at maybe 5-6 feet. She did not respond. It seemed that as long as we were within the yardstick, she could hear us! She even repeated some of what we said to her throughout the evening!
There is a display where you can launch a hot air balloon. It travels up a cable from first floor to second floor. On the second floor, you can watch it come up. Audrena would squat down, and when someone would launch it from below, she would stand as it rose and say, "Up! Up!" There is also a train display, where she announced, "Ooo ooo! (choo choo)" She roared at the dinosaur, ran around the floor piano, and raced little cars down the track.
Reyana and Kelton thoroughly enjoyed themselves as well! They played lots of games that Audrena wasn't quite old enough for, as well as some that they included her in. They also played with displays we didn't let Audrena participate in. Several had magnets of varying strength. While they were probably just fine, we didn't take any chances. Then there was the little kids' room with the water area. We didn't have the waterproof mic or cable with us, so Audrena did not play in there, either. Next time I will remember to bring the necessary accessories!
Also over the weekend, the big kids were playing in the basement toy room. Audrena was upstairs with us. She walked to the baby gate we keep across the stairs and said to Randy, "Want down!" He didn't answer her right away, and she again repeated, "Want down," pointing at the basement. He said, "You want to go downstairs?" She replied, "Yeah!" Well, how could we deny her when she told us what she wanted? So he opened the gate, helped her down the stairs, and we moved what we were doing to the basement.
Last night, I gave Audrena her favorite stuffed monkey, Pinky, at bedtime. She hugged it, kissed it, and pointed out body parts, telling me "mouth" and "eye." She loves that monkey! Also, Randy called from the other room, "Nigh night, Audrena!" She turned to the door and shouted something back at him, as if to say, "Nigh night!" I love that she can pick up sounds from other rooms with just one implant! The technology, and her own successes, continue to amaze us.
Over the weekend, Audrena also said, "Ah maaaa" and pointed at my mom's picture. That's a new one! She has not attempted to say "grandma" before. It was really special because, for those of you who don't know, my mom passed away when Audrena was 5 months old. She knew who Grandma was! We have showed her the picture and said, "There's Grandma," but she has never tried to say it before. We honestly believe Mom is Audrena's guardian angel, but that's material for a whole different blog post.
January 7, 2013
December 31, 2012
Time Flies When You're Having Fun!
It has been awhile since my last post. Let's just attribute that to the Christmas season and all the fun we've been having! We have spent the past few weeks driving through neighborhoods decorated with Christmas lights, making ornaments, playing with the train around the tree, and learning lots of new words and sounds.
Audrena has demanded that the Christmas tree lights be turned on each morning when we wake up, to be left on all day. She would walk to the tree, point, and tell us, "Uh oh!" Then she would point at our train and say, "ooo ooo." The "ch" sound hasn't quite come yet, but the high "ooo ooo" certainly has! As we drove past Christmas lights this season, Audrena would exclaim, "OH!"
The holiday weekend was a long one this year. It was nice to be home with the kids for four days straight! One would think that the chaos and sheer noise of voices, television sets, etc that accompanies our family gatherings would be a negative listening environment for Audrena. However, she always proves us wrong. She chose the holiday weekend to have an explosion of speech and language. New words and sounds include:
Audrena's receptive language is really growing, which is really what comes before expressive language. She will respond to certain commands, like if she is in the kitchen and I say from the living room, "Audrena, come here!" She will find me. There are other things as well, but that's a good example.
Yes, I think we have come a long way in under 5 months. I can't wait to see what 2013 brings! Happy New Year to you all!
Audrena has demanded that the Christmas tree lights be turned on each morning when we wake up, to be left on all day. She would walk to the tree, point, and tell us, "Uh oh!" Then she would point at our train and say, "ooo ooo." The "ch" sound hasn't quite come yet, but the high "ooo ooo" certainly has! As we drove past Christmas lights this season, Audrena would exclaim, "OH!"
The holiday weekend was a long one this year. It was nice to be home with the kids for four days straight! One would think that the chaos and sheer noise of voices, television sets, etc that accompanies our family gatherings would be a negative listening environment for Audrena. However, she always proves us wrong. She chose the holiday weekend to have an explosion of speech and language. New words and sounds include:
- A defined me-ow for cat, rather than missing the e sound as she had been.
- Quack
- Eye (and pointing to it as she says it)
- Mouth (and pointing to it as she says it)
- Butt (Yep, and pointing to that as well! I inadvertently taught her that one, and she wasted no time showing Aunt Darci where her butt is.)
- Around
- In
- Out
- Back
- "Oh no!"
- Ball
- I love you (This one is not clear, but it's clear to us that it's what she is trying to say because she uses it in appropriate situations.)
- She pointed at a chair and told Randy, "Dada here!"
- She also yelled down the hall one morning, "DADDY!"
- Yeah
- Go (She has not said this at home but has been saying it in speech therapy.)
- Neigh for horse.
- Barn
- Hi
- Bye with a wave more consistently lately.
- On Christmas Day, Audrena was holding an ornament from the tree, and she put it in her mouth. Our nephew's girlfriend, Jessica, told her something like, "Oh, let's put that back on the tree!" Audrena pointed at her and exclaimed, "NO!"
- Amen after our bedtime prayer. I truly love listening to her exclaim "ahhhhh muh." (After all, God has given us many miracles this year.)
Audrena's receptive language is really growing, which is really what comes before expressive language. She will respond to certain commands, like if she is in the kitchen and I say from the living room, "Audrena, come here!" She will find me. There are other things as well, but that's a good example.
Yes, I think we have come a long way in under 5 months. I can't wait to see what 2013 brings! Happy New Year to you all!
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!
November 27, 2012
Programming Changes
I'm excited to say that we are transitioning into doing Audrena's programming here at USD's clinic, rather than driving more than 2 hours each way to Boys Town. While we love Boys Town, it's just more convenient to do things here. We already have a standing appointment every week for Aural Rehabilitation, so Audrena gets speech therapy and audiology services as needed. I have said it many times before, and I'll say it again. USD is very fortunate to have Dr. M (whom we just call by her first name, J.). She is an asset to this entire area because we just don't have a wealth of people who know cochlear implants, and the icing on the cake is that she is just great.
Last week we met with J. to get Audrena's new ear mold for her hearing aid, and we had hoped to do some work in the sound booth. Audrena is not getting the /s/ ("sssss"--think "snake"), so we knew she needed some adjustments to her programming in the high frequencies. As it turned out, Audrena was ready for a nap and in no mood to be in the booth. J. did some other nerve measurements, called NRIs, and because Audrena wouldn't cooperate for any other testing, she made adjustments based on those. When Boys Town had done their threshold testing in the operating room, they told us that electrodes 15 & 16 may or may not be useable. So because those electrodes handle the high frequencies like the /s/, and because they still were not testing good for J., she changed the programming to turn them off. As she explained, that would shift those high frequencies down to electrode 14. This would hopefully give Audrena access to those sounds that she was not previously hearing. She also made some changes to Audrena's M levels, which doesn't mean much to those who don't understand implants.
Over the weekend, we watched to see if Audrena seemed to be hearing better, specifically the /s/. I got responses from her just a couple times, and only in really quiet situations. So we probably will need to keep working on things. J. wants to see Audrena when she is sleeping to perform some testing on a reflex in her inner ear. It's hard for me to explain because, while I understand the basics, it's still a bit above my head. Basically, there is a reflex that happens in the ear in response to sound, and that reflex is pretty golden for programming CIs for a small child. It corresponds almost exactly to where the levels need to be set. I'm not sure when we'll attempt that, but I do know Audrena will have to be really tired. We would have to rock her to sleep and hope she stayed asleep when they stick the piece in her ear. It was a challenge for the first ABR, and she's older now, so it will be interesting. We'll see what J. thinks on Thursday and go from there.
In the meantime, "uh oh" and "more" are regular parts of Audrena's vocabulary now. She also gets really excited to see dogs and barks in response. Her "woof woof" is not very pronounced yet, but she's trying. She has begun to vary loudness and pitch as well, which is great. K. is starting to use the speech hoop now for discrimination in therapy sessions since Audrena was doing so well without it.
I also just got word from surgery scheduling that the CT scan is scheduled for March 7, 2013. Let's hope for an all-clear! We can't wait till Audrena can have two "ears."
Last week we met with J. to get Audrena's new ear mold for her hearing aid, and we had hoped to do some work in the sound booth. Audrena is not getting the /s/ ("sssss"--think "snake"), so we knew she needed some adjustments to her programming in the high frequencies. As it turned out, Audrena was ready for a nap and in no mood to be in the booth. J. did some other nerve measurements, called NRIs, and because Audrena wouldn't cooperate for any other testing, she made adjustments based on those. When Boys Town had done their threshold testing in the operating room, they told us that electrodes 15 & 16 may or may not be useable. So because those electrodes handle the high frequencies like the /s/, and because they still were not testing good for J., she changed the programming to turn them off. As she explained, that would shift those high frequencies down to electrode 14. This would hopefully give Audrena access to those sounds that she was not previously hearing. She also made some changes to Audrena's M levels, which doesn't mean much to those who don't understand implants.
Over the weekend, we watched to see if Audrena seemed to be hearing better, specifically the /s/. I got responses from her just a couple times, and only in really quiet situations. So we probably will need to keep working on things. J. wants to see Audrena when she is sleeping to perform some testing on a reflex in her inner ear. It's hard for me to explain because, while I understand the basics, it's still a bit above my head. Basically, there is a reflex that happens in the ear in response to sound, and that reflex is pretty golden for programming CIs for a small child. It corresponds almost exactly to where the levels need to be set. I'm not sure when we'll attempt that, but I do know Audrena will have to be really tired. We would have to rock her to sleep and hope she stayed asleep when they stick the piece in her ear. It was a challenge for the first ABR, and she's older now, so it will be interesting. We'll see what J. thinks on Thursday and go from there.
In the meantime, "uh oh" and "more" are regular parts of Audrena's vocabulary now. She also gets really excited to see dogs and barks in response. Her "woof woof" is not very pronounced yet, but she's trying. She has begun to vary loudness and pitch as well, which is great. K. is starting to use the speech hoop now for discrimination in therapy sessions since Audrena was doing so well without it.
I also just got word from surgery scheduling that the CT scan is scheduled for March 7, 2013. Let's hope for an all-clear! We can't wait till Audrena can have two "ears."
November 15, 2012
"No no no no, Mama!"
Here is a video clip of Audrena with her new favorite thing to say. She loves to shake her finger at us and say, "No no no no!" You'll see in the video that at this point it still comes out as "Mo mo mo mo." This isn't the most clear video in terms of how things sounded, but the other clips I have are a poorer cell phone quality, so I'm using this one for the blog. Her "Mama" at the end doesn't sound that much different from the "mo mo" in this particular clip, but others are better. We were so excited to get some video of Audrena talking because normally when the camera comes out, she stops performing! I love her little giggle before she says it.
Audrena has also been using "more" very regularly now, and also "uh oh" fairly regularly. What a joy to hear her little voice forming words!
Audrena has also been using "more" very regularly now, and also "uh oh" fairly regularly. What a joy to hear her little voice forming words!
Way to go, Toys R Us!
I was browsing The Great Big Toys R Us Book and noticed something neat. On page 31, they feature a boy with a cochlear implant next to the Crayola easels. Way to go! Now if we could just see more companies featuring CI kids, Down Syndrome kids, kids in wheelchairs, you name it. I would love to see it!
Interesting things are on the horizon!
Med-El has come out with a unit called the RONDO that combines the processor with the mic and headpiece. It eliminates the need for cords or anything worn on the ear. I have my questions. The first one being wouldn't a person need a stronger magnet, thus risking skin breakdown? I think it wouldn't be great for a toddler or child, as there is a greater risk of losing the entire processor. However, with that being said, I think great things are on the horizon for implant users. I could see this being a fantastic option for an adult. It's almost a complete "freedom." I foresee the other companies eventually following suit to develop a similar product, as they are always competing to give their patients the best technology. Here is a link from the Cochlear Implant HELP website to the information on the RONDO.
http://cochlearimplanthelp.com/2012/11/08/med-el-announces-the-rondo-single-unit-processor/
http://cochlearimplanthelp.com/2012/11/08/med-el-announces-the-rondo-single-unit-processor/
November 8, 2012
She has a sucker stuck in her hair.
I can't believe I forgot to share this story when it happened! Last month, my sister came to spend the day with the kids. She took Kelton and Audrena out to lunch, and after they picked Reyana up from school they went to a carnival in the park. Then, since she had my van, they picked me up from work.
On our way home, we stopped at the grocery store for some supper items. Reyana, Kelton, and Audrena were all squished into the race car shopping cart. As I was paying for our groceries, Audrena was squirming around in her seat. Her implanted side was facing away from the cashier, a high school-aged boy. As she turned very briefly, he caught a glimpse and said to me, "Ummmm, she has a sucker stuck in her hair."
I explained, "Oh, that's not a sucker. It's a cochlear implant. She is deaf, and it allows her to hear." He had this mortified look on his face, and by that time Kelton had climbed out of the cart and bolted for the door. I took off to catch him, and Darci stayed with the girls as she paid for her groceries. I could see her showing him the different components of the implant and explaining how it works.
She and the girls caught up to us, and as we all got into the van we were laughing so hard that the tears were just pouring out of our eyes! We couldn't wait to get home and tell Randy the story. That poor cashier was so embarrassed, but we had the opportunity to educate him a bit about what a cochlear implant does. There are three other people in town (that we know about anyway) that have them. Now he will know what it is when he sees one.
A sucker. It does kind of look like that at a glance. Audrena was wearing her "tropical sea" colored headpiece, and the cord is white. So I have hung onto that sucker story because some days if I don't laugh I will cry. It's better to laugh, and that cashier gave me a good reason to. Thankfully the bad days are getting fewer and farther between, and the laughter is taking over. And what can I say? I love my little red-headed, four-eyed child with a hearing aid and a sucker stuck in her hair!
On our way home, we stopped at the grocery store for some supper items. Reyana, Kelton, and Audrena were all squished into the race car shopping cart. As I was paying for our groceries, Audrena was squirming around in her seat. Her implanted side was facing away from the cashier, a high school-aged boy. As she turned very briefly, he caught a glimpse and said to me, "Ummmm, she has a sucker stuck in her hair."
I explained, "Oh, that's not a sucker. It's a cochlear implant. She is deaf, and it allows her to hear." He had this mortified look on his face, and by that time Kelton had climbed out of the cart and bolted for the door. I took off to catch him, and Darci stayed with the girls as she paid for her groceries. I could see her showing him the different components of the implant and explaining how it works.
She and the girls caught up to us, and as we all got into the van we were laughing so hard that the tears were just pouring out of our eyes! We couldn't wait to get home and tell Randy the story. That poor cashier was so embarrassed, but we had the opportunity to educate him a bit about what a cochlear implant does. There are three other people in town (that we know about anyway) that have them. Now he will know what it is when he sees one.
A sucker. It does kind of look like that at a glance. Audrena was wearing her "tropical sea" colored headpiece, and the cord is white. So I have hung onto that sucker story because some days if I don't laugh I will cry. It's better to laugh, and that cashier gave me a good reason to. Thankfully the bad days are getting fewer and farther between, and the laughter is taking over. And what can I say? I love my little red-headed, four-eyed child with a hearing aid and a sucker stuck in her hair!
30 Years of Cochlear Implants!
A friend pointed this article out to me, and of course I had to pass it on.
http://www.foxnews.com/health/2012/11/05/cochlear-implant-celebrates-30th-anniversary/
The part of the article that surprised me was this. "Weber said about 52,000 Americans have been implanted, but the number of Americans who can actually benefit from an implant is around 1 million."
Had Audrena's left side implant not been delayed, she would have been somewhere between Boys Town's 495-499th implant. But there are 1 million other Americans who could benefit from a cochlear implant. Now, that's not to say that all of those 1 million people should be implanted. We all know that, for various cultural and lifestyle reasons, they're not for everyone. The statistic amazed me, though. 52,000 is such a small number in comparison to 1 million, and it's a small number over a 30 year time frame!
http://www.foxnews.com/health/2012/11/05/cochlear-implant-celebrates-30th-anniversary/
The part of the article that surprised me was this. "Weber said about 52,000 Americans have been implanted, but the number of Americans who can actually benefit from an implant is around 1 million."
Had Audrena's left side implant not been delayed, she would have been somewhere between Boys Town's 495-499th implant. But there are 1 million other Americans who could benefit from a cochlear implant. Now, that's not to say that all of those 1 million people should be implanted. We all know that, for various cultural and lifestyle reasons, they're not for everyone. The statistic amazed me, though. 52,000 is such a small number in comparison to 1 million, and it's a small number over a 30 year time frame!
October 31, 2012
The progress continues!
Audrena is now babbling like crazy. She is combining sounds in random patterns, such as "mawadadadamamwa." This is part of the natural process as babies learn to speak, and we are excited to see it happening! She also said "ball" a few nights ago while reaching for her ball. Monday, I was walking with her and saying, "Walk, walk, walk!" She repeated "walk." I'm not sure if I mentioned it before, but last week at USD's speech session, she was also saying "on" and "off." Audrena also does more of the animal sounds now and loves "Brown Bear, Brown Bear, What Do You See?" She is also using "more" frequently now when she wants more of something. She also says "mwa" for kiss. Last night, she pulled out the toy house that I've talked about before. It has the light switch, and we use it to practice "turn the light on/off." She has now discovered the doorbell and continuously rings it, smiling like she is doing something really cool. I love all of this progress!
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