School Update

Today is the 100th day of school. I can't believe how fast those 100 days went! Reyana loves her teacher and is really enjoying 2nd grade. Kelton has matured so much in Kindergarten, and his teacher is fantastic. It has been a great year for everyone, especially Audrena.

We have seen a huge growth with Audrena this year. It seems we ("we" meaning her IEP team as well) have found a good combination of services this year with full day school, her SLP-A, and her speech therapy. I know we have a long way to go to get her caught up, but I also can't believe the amount of progress she has made this year. She is asking more questions, and more importantly, she is answering questions and taking turns in conversation so much better. Her vocabulary has expanded, and she is talking so much more. The average length of utterances has also gone from 3-4 to more like 4-6, and occasionally even 7 words.

Audrena has developed quite the personality this year. She keeps us all laughing, and she is the typical bossy little sister to Reyana and Kelton. Even when we are in our van on the interstate, she hears what Reyana and Kelton are doing behind her and tattles on them every chance she gets. Kelton was taking pictures with my iPhone one day as we drove down the interstate, and she made sure to tell us when she heard the camera click! Like every other child out there right now, she loves all things Frozen, and she tries to sing along with the songs even when she doesn't know all the words.

In school, they have been working on typical preschool things like letters, numbers, shapes, and colors. She can identify almost half of the letters randomly, she writes her name, and she knows her shapes and colors. I lost track of how far she can count, but I think she gets to around 15 before she starts missing numbers.

I still worry that she will not be caught up by Kindergarten, but I can safely say that I feel much better about where we are than I did over the summer. I can finally see the pace starting to pick up. We will continue to keep the ball rolling and even speed it up.

Recently in the sound booth, Audrena tested from 5-25 dB. There was one frequency where she was at 5 dB, and one where she was at 25 dB. Overall, she was hovering consistently in the 15 dB area. We are so impressed with her programming! Audrena has started to tell us when her batteries are low, or when she needs more toupee tape on her Naida processors. She asks for her "water ears" at bath time (the Neptune processors). And she has become a good little lip reader. We use very little sign language at this point, and yet if she is in bed and doesn't have her processors on, she still often answers our questions appropriately.

The miracle of cochlear implants never ceases to amaze us! Even with its limitations, the technology has provided Audrena with so much more in life than we ever dreamed possible when we started this journey. We knew that some access to sound would be better than none at all, but the results have far exceeded our expectations!

First Day of Preschool 2014

Audrena started preschool today. Her IEP team has a big year planned for her, and hopefully it will bring great things. Audrena will attend the "regular" preschool in the morning, then speech, lunch, recess, and Early Childhood preschool in the afternoon. She has a wonderful SLP-A (Speech-Language Pathologist's Assistant) who will be with her during the school day this year. We are so excited for all of the language learning and wonderful progress that she should make this school year! We are very thankful for a good school district with dedicated professionals as well.

This morning we arrived at school, took the obligatory "first day" picture in front of the school's sign, and barged into the SLP's office. Audrena loves her, and that's the first place she wants to go when she gets to school, whether she should be going to speech or not. So the SLP walked with us to take big brother Kelton to his kindergarten classroom and then on to the preschool room. Audrena saw her Early Childhood teacher and thought she should go right into that classroom. We had to explain that she has a new classroom in the morning. Once we were in the door, she found the ramp and a toy car, gave me a dismissive wave and a quick, "Bye bye!" That was it. She wouldn't even turn toward me for a quick picture. The SLP-A offered to take a picture later and send it to me, but I had what I really needed...a happy girl on her first day of school.

Our Summer Vacation

This year we were able to attend the summer parent workshop at The Moog Center for Deaf Education. What an amazing place! We learned so much, and we totally recommend attending if you have a deaf or hard-of-hearing child! Totally. I will warn you, though, by the time the workshop is over you will want to pack your belongings and move to St. Louis. They are that good.

While we were there, they did some evaluations on Audrena. The results were not quite what we had hoped to see, but we are thankful that we were able to bring the report back and make some positive changes on Audrena's IEP that should help her make good progress. We have a good school district to work with, and we still hope to meet the goal of having Audrena caught up by kindergarten.

In order to make the stars align for us to be able to attend the workshop, we needed someone to care for Reyana and Kelton. Thank God for family. My sister was able to go with us to St. Louis so that we could make a vacation out of it. She cared for the big kids while we attended the workshop from 9:00-3:00 each day. They swam in the pool and relaxed in the hotel suite. In our free time, we were able to go to the St. Louis Zoo, The Magic House Children's Museum, and The Gateway Arch. It was a great family vacation, and I can't thank my sister enough for making it possible! Here are just a few photos I have readily available on my phone.

People have always told us that Audrena would be the first deaf woman president. Maybe they were right....

My sister stayed at the bottom with Audrena while we took Reyana and Kelton up inside of The Gateway Arch. Here we are waiting for the "car" to pick us up.

We were assigned to "car" 3 on the way up.

Siblings of Children with Hearing Loss

Here is a good article about how to best support the siblings of children with hearing loss. It's something we struggle with in our household. We always feel like Reyana and Kelton give up a lot for Audrena, so we make a conscious effort to do things that involve only them. It's hard. They don't always understand that the therapists are there to help Audrena learn to talk because it looks like play to them. The physical therapy time looks like a fun obstacle course, and they want to participate. Well, Reyana understands a little more because she is the oldest, so she does things like reading bedtime stories to Audrena, knowing on a 7-year-old level that she is helping her little sister. But there are plenty of times when it's just plain unfair that so much of our attention goes to Audrena. It's a balancing act.

South Dakota Senate Bill 122

We have been busy lately. Work, children, Girl Scout cookie sales, and politics have been consuming our time. Yes, politics. I've been busy mailing letters and e-mailing our legislators. Wednesday morning I got up at 4:00 am and drove the 4 hours to Pierre to testify in front of the Senate Health and Human Services Committee. Then I drove the 4 hours back home. So what was worth 8 hours on the road for such a short time? Children. Particularly children with hearing loss. You see, Senate Bill 122 is an act to require insurance companies to cover audiology services, hearing equipment, and associated therapy for children with hearing loss in South Dakota. What is more worthwhile than giving children a chance to hear and speak to the best of their ability, regardless of whether or not their parents have the financial means to purchase hearing aids and speech therapy? We are fighting. And we are not finished yet. There is more work ahead. But with the support of our fellow South Dakotans we may just succeed. I am asking all South Dakota readers to please contact their legislators (click the link to find yours) and ask for a YES vote on SB122. Pass the message on to your friends. Act quickly because the bill will be heard Monday morning again. Let's give South Dakota's deaf and hard-of-hearing children the chance to speak because our children are the future voice of South Dakota.

P.S. If you listen to the audio on the website, you might just hear me testify. Just know that I was not at my best. I was trying very hard to hold back the tears, so I needed to take deep breaths, and I cut my speech short to give the many other parents behind me a chance to speak as well. We had a great turnout of supporters!

~ Carri

Current Happenings on Audrena's Hearing Journey

We've been wading through the preschool evaluations, and we're almost finished. Currently, we are planning for Audrena to start preschool on March 11th, the day after her 3rd birthday. This whole process has been a new adjustment for us. Just when we think we're getting used to things!

Audrena had programming last week. She had been putting her hands over her ears at loud sounds, so we knew something had changed. It worried us a bit because it happened pretty suddenly and shortly after a bump to the head. As it turns out, her impedances were fine, so she just needed to have the programming tweaked a bit. However, we were surprised when one of her Naida processors gave Dr. M. issues during programming. Then we were even more surprised when the Neptune for the opposite ear caused the programming software to crash. So Advanced Bionics replaced both processors, and when they receive the others they will do some additional testing to see if they can figure out what happened, whether it was a static shock, moisture, or some other issue. It seems that we go through a lot of parts, but we are always pleased with AB's service. We also understand that we are dealing with the newest technology, and that doesn't come without some bugs.

Here is a recent photo of Audrena with her Naida processors. If anyone has any fantastic suggestions for us about how to keep them on, we would love to hear them! Her glasses cause the processors to slide off her ears if they are not secured. Plus, we don't want to take the chance of losing them. We are currently using toupe tape, which works, but her hair gets caught in it. She loses chunks of hair, and some days I think it's a miracle she has any left around her ears. Also, it makes her ears look a little funny because of how the tape sticks. I am going to order some huggies to see if that works. It seems like if there was a product that attached the processors to her glasses they would stay in place better. Maybe I should invent something!

I will leave you with some big news. It's big in our eyes anyway. We are going to attend The Moog Center's Parent Education Workshop in June! We are SO excited! After much debating about whether I could get away from work, whether Randy could get away from work, and what to do with our other children, we decided to just book the trip! My sister plans to go with us, and we'll take the big kids along. Since we will have evenings open to do other things, it will be a family vacation! If one or the other of us is unable to go, we'll adjust our plans and one of us will still attend. We feel like this is going to be a great learning experience, and Audrena will get some fantastic one-on-one time with The Moog Center's personnel!

Derrick Coleman Surprises HOH Girls

Below is a link to a great piece by ABC News about Derrick Coleman, a deaf Seattle Seahawks player, who surprised two hard-of-hearing (HOH) fans and their family with tickets to the Superbowl. I'm not big on football, but I just have one thing to say. Pretty cool, Derrick. Pretty cool.

http://abcnews.go.com/blogs/headlines/2014/01/seahawks-derrick-coleman-surprises-hearing-impaired-girls/

A Little Update

In the next few weeks, Audrena will be evaluated as part of the transition from Birth to 3 to the school district for services. I am interested to see what the evaluation brings. She is putting 3-4 words together. However, I feel like her vocabulary is still lagging behind a bit, and she is still leaving out the beginning and ending consonants more often than not. For example, one time she might pronounce "puppies" crystal clear, and the next time it might be "uppies." "On" and "off" both lack the endings more times than not. We are working on it, and we've seen some improvement. Our current SLP through Birth to 3 has done a great job with Audrena, and we are seeing some really nice progress.

We have been using the Naida processors nearly exclusively now. It's new technology, and there have been some bugs. We kept losing mic protectors from one of her processors almost daily, and before long we noticed that the mic just wasn't crisp and clear like the other. So we switched back to the Neptunes and sent the Naida in for replacement. The replacement had issues of its own, giving random red lights or orange lights. The orange light would ordinarily mean the battery was low, but we found that it didn't matter what battery we put in, it would still show that the battery was low. So again we had it replaced. Audrena is hard on cords, so we have had to replace those a few times as well. We went through that with the Neptune cords, too. She is just rough with them. That's why it is SO important to be very conscious of your child's cochlear implant equipment. We constantly monitor things because if she is not getting good quality sound, she can't catch up as quickly with her speech and language.

The Naida processors can use the T-mic 2. We have heard they are generally not recommended for small children because there is no good way to monitor whether they are working. However, our Audiologist wanted us to use the T-mic 2 because it delivers the sound into the opening of the ear, where it naturally would be heard. Also, studies show better outcomes with T-mic usage than without. As closely as we monitor Audrena's equipment, that concerned us because we couldn't really check the T-mic's function, yet we wanted her to have the best possible listening opportunity. Dr. M. explained that she would be programming it to use 50% T-mic and 50% processor mic. That would really function as a 100%/100% arrangement because if the T-mic were to fail, Audrena would still get the sound through the processor mic. She could monitor the T-mic via booth testing outcomes by switching off the processor mic during testing and then testing again with it on. So we agreed to try it. We also think we have figured out on our own how to test the T-mic with it being programmed this way. When we do listening checks, we simply tightly cover the processor mic with our fingertip, and we can hear the sound only through the T-mic. We know the sound is coming into the T-mic because if you get close enough and the air from your mouth hits the mic, you can hear it just like wind. I'm not sure if that's in any way reliable, but it seems to be working for us.

We feel like Audrena is getting better sound with the Naidas. It may or may not be coincidence, but she has had a speech & language explosion since we have started using them. One thing we haven't quite figured out is how to keep them on without using toupe tape. Her glasses get in the way, so they don't sit perfectly on her ear. Tape seems to be the only solution, and it works well, although we sort of hate it. Her hair seems to get stuck in it no matter how careful we are. If anyone has a solution, I would love to hear it!

Time to Give Thanks

As Thanksgiving approaches, I am always thankful for the gift of cochlear implants. This hearing journey is certainly not something we ever expected to endure, and I say "endure" because it has not been easy. However, it has been rewarding in the most awe-inspiring ways. It has taken us places we never dreamed and tested our family and even our marriage a bit at times. But we have come out stronger and happier. Audrena has come so far in the past 15 months, much farther than we expected in some ways.

We are thankful for Advanced Bionics. We are thankful for Boys Town National Research Hospital and every single person who works there. We are thankful for the University of South Dakota Scottish Rite Speech and Hearing Clinic staff, for our top notch Audiologist and Speech-Language Pathologists, and for the enthusiastic students. We are thankful for South Dakota School for the Deaf. We are thankful for a fantastic Physical Therapist. And we are thankful for the many friends we have made along the way, the families that we have connected with, and the mentors we have found.

We can't forget to be thankful for our two older kids, Reyana and Kelton. They have always been loving to their little sister and really watch out for her. They are the best language models for her, and she would not have come so far if it were not for them. I am sure of it. Our family, friends, and coworkers have also been huge supporters throughout the past couple of years.

In the past 15 months, Audrena went from hearing nothing to hearing whispers, hearing at 20 decibels with her implants. She went from saying only mamamamama to putting 3-4 word sentences together. Thanks to her physical therapist, she now walks good, runs, navigates uneven surfaces, and is even beginning to go down steps without constantly holding on to the railing. She did 4 steps the other night while holding a sippy cup and a treat, and with me hovering over her like a Nervous Nelly. Hey, in my defense there was concrete at the bottom!

I was a very shy child, and it has taken me a long time to come out of my shell. I'm not a very outgoing person, and neither is Randy. But this journey has put us in places we never thought we would be. We are finding ourselves filling the role of advocate as Audrena gets ready to transition out of Birth to 3 and into the school system. We have been mentors of sorts for other families, while in turn being mentored by other families further along this journey. Most recently we were asked to be involved in a PSA (which I think will just involve Audrena's picture being part of the announcement) and to be parent advocates for hearing screening legislation that is currently being drafted.

This hearing journey is certainly not something we would have chosen. Given the choice of Audrena with normal hearing, or Audrena with cochlear implants, I think I can safely say we would choose Audrena with normal hearing simply because normal hearing would be just easier for her. However, we love Audrena as she is, and if this is the path God has chosen for her, then maybe her purpose is to make a difference in the world of hearing loss. I have no doubt that she will go far in life. Who knows, maybe she will be a cochlear implant surgeon. Or maybe she will be the first deaf woman president. The moon and the stars are the limit. We are just thankful for great people and great technology to help her along the way.

Our Naida review.

We have been waiting for the FDA to approve the new Advanced Bionics Naida processor since Audrena had her second CI surgery in May. Approval came a few weeks ago, and Audrena had her processors programmed about a week ago.

What we love:

• The smaller size. We felt like the Harmony was just too big for a kid. Audrena is 2 1/2, and the Naida fits her ear nicely with the 110 battery. We also got the 170 battery, and it hangs just slightly below her ear, so it's a reasonable size as well.
• The shorter cord. We really love the Neptunes, and they have served Audrena well, but the shorter cord is so much easier for her when the headpiece gets knocked off. She can reach it better to put the headpiece back on.
• The program button is easily accessible. We never kept the Neptune Connect on her Neptunes. Instead, we used the cap so that the settings wouldn't be accidentally bumped. The program button on the Naida is easily accessible, but it doesn't really seem to be easily bumped, either. It makes changing the program to Clearvoice so easy when we need it!

What we don't love:

• The Naida, like the Harmony, does not have an external audible beep when the battery is low, or when the headpiece gets knocked off. This is a must for small kids! It was so helpful to us when Audrena was smaller and her Neptune headpieces would fall off because we knew immediately. (She couldn't put them back on by herself when she was younger. Fortunately for us, now Audrena is getting pretty good at putting the headpiece back on when it falls off.) I realize that mostly adults and older, more self-sufficient children will use the Naida. But they did make it smaller, and it fits younger children better now, so why not build it with the capability of having that alarm?
• The indicator light is hidden by Audrena's hair. Going back to my rant about the lack of an audible alarm, if they didn't give the Naida an external beep, then it would be nice to have the indicator light in the front like *gasp* Cochlear so that it's more visible to parents. I know, I know...it's more discreet this way.
• We're back to using toupee tape to hold her processor in place like we did with her hearing aids.

Overall, we are very pleased with the Naida! Audrena wears it without complaint. It frees her up from wearing the special pocket cami under her shirt every day. We are excited to have the behind-the-ear option for her. The t-mic technology (which places sound input in the most natural place, in the ear opening) should improve her speech understanding in noise. The Naida was definitely worth the wait!

This was taken just after her programming appointment. She does not have the t-mic on the processor in this photo.