The Billboard Baby's Journey

It has been a super long time since I have written anything here. Today I felt the need. A few years ago, I was so passionate about getting Senate Bill 122 passed through South Dakota's legislature. It would have mandated insurance coverage for pediatric hearing aids. It was hoghoused into something different before it was passed. However, some of the same passionate people have come together this legislative session to get House Bill 1155 passed into law. It's not done yet, but it has promise. This bill would be invaluable to parents and IFSP/IEP teams. In a nutshell, it would create a specific committee who could help with guidelines for language and literacy skills in children with hearing loss to help prepare a child to enter kindergarten at age 5. Oh, how useful that would have been to us!

We have done everything in our abilities to have Audrena ready for kindergarten. In the fall of 2016, she passed kindergarten roundup but was just not ready, largely due to the remaining language gap. Thankfully, our school district offers junior kindergarten, and we were able to give her that extra year. This year (2017/2018), she is doing great in kindergarten with the help of her IEP, although she entered kindergarten at 6 1/2, not 5 1/2. Audrena receives services for speech/language/articulation, reading, writing (we just added this to keep her from falling behind because her teacher identified it as an area of need), and math. We could have greatly benefited from the provisions of HB1155 in the years leading up to kindergarten!

Today, a friend posted on Facebook about her experience testifying for HB1155 and what it meant to her. We all used to have pretty "normal" lives. What is normal, anyway? When I was a young adult, my "normal" meant I was quiet and reserved. High school speech class made me sweat. With our first two kids, we were introduced to story time at the library, soccer, etc, but life was still pretty "normal." Then along came Audrena. When she was born, our doctor declared that she was "tiny but mighty." At 7 pounds, 8 ounces, she really was not tiny, but she looked it. The nurses joked that she was our "billboard baby" because she was chosen to appear on the hospital's billboards around the city. Little did we know how well those two things would stick: "tiny but mighty" and "billboard baby."

Audrena has made a place for herself in the world. People fall in love with her spunky, redheaded attitude and dimpled smile. She is very outgoing and happy. She has been featured in hearing loss public service announcements and in the newspaper. Audrena's story has been shared in many places as a testament to the importance of newborn hearing screening, to the importance of following up on "refer" results, and as encouragement to parents to listen to that nagging voice when it says something is not right. Audrena has been a mystery to her geneticists. She has provided Audiology and Speech-Language Pathology graduate students opportunities to put their learned skills to work at the USD Scottish Rite Speech & Hearing Clinic. As for me, that reserved, quiet, sweaty high school speech class student? Well, I faced my fears and shared Audrena's photo and her story with the South Dakota legislature. Randy and I learned to speak up, to advocate for our daughter. We have mentored other families, just as more experienced families have mentored us along our hearing journey. Randy and I have also participated in panel discussions at large and small university courses for Audiology and Deaf Education students. All of this is just the beginning of "The Billboard Baby's Journey."

As I replied to my friend's Facebook post today, it occurred to me that our children are on the path to really great things, and I told her as much. I took a moment to reflect on whether, given the chance I would give Audrena natural hearing, or whether I would not change a thing. Natural hearing would eliminate many of the challenges she has faced, and will face, throughout life. However, her hearing loss has put her on a unique, beautiful, wonderful path in so many ways. I have no doubt that she will go places and do big things. Recently, I was given the opportunity again to participate in a panel for a university class taught by our much-loved Dr. M. The last thing Dr. M. asked was what I hope for as Audrena approaches the age where she will go off to college. I said, "I just want her to be the first woman President." Everyone laughed, including me, but I was only halfway joking. All three of my children have the potential to do great things in life. I believe they will. Because of that, I also believe that our billboard baby's journey is far from complete. Her hearing loss is not all bad. It's going to challenge her, but challenges drive us to succeed. It will also take her on a different journey. The road less traveled is sometimes the best route to take.

Our Home Away From Home

We have a special place in our hearts for the University of South Dakota Scottish Rite Speech & Hearing Clinic. Audrena and Kelton both utilize the clinic, and the professionals and student clinicians there are always fantastic. This week, Audrena had the opportunity to give back to the clinic in the form of helping with some marketing. You see, the clinic is a little-known gem here in town. We lived here for about 8 years before we ever heard of the clinic, and we found it by accident. You'll just have to take my word for it when I say this clinic and the professionals in it are top notch. It's a shame they don't have a beautiful, new building to reflect the quality of services they provide, but that's a topic for another day (*hint hint* to those who plan major building projects for USD).

I feel like I should provide a disclaimer of some sort after all that praise. We get nothing from USD but the same quality service they provide to every other client. This is simply our family sharing our appreciation for great service. We would be driving over 2 hours to receive programming services at Boys Town if it were not for this awesome clinic and our even more awesome Audiologist, pictured below.

"I'm five, going on six."

It's hard to believe it has been a whole year since I updated this blog! Sorry. I have been slacking. Actually, it has been a very busy year in our lives. Audrena spent the last year growing by miles rather than inches, it seems.

Last year Audrena spent her summer going to Disney World and Universal Studios, swimming in the ocean (SO thankful for Advanced Bionics Neptune processors), collecting seashells, going to speech camp, camping with the family, and playing with her neighbor friends. She still often asks to fly in the airplane to see Mickey Mouse and swim in the ocean again!

"I'm five, going on six." Those were the words we heard a lot on her birthday this year. Let's not get ahead of ourselves, Audrena! You're growing up too fast as it is!

Audrena played soccer last fall, and she will play again this spring. Her coach was great and was not at all intimidated by the Phonak Roger Inspiro that we asked her to use on the soccer field. We're always amazed by how much the Roger system improves Audrena's ability to hear us in situations like that!

She is still going to school for a full day, and it has worked out very well. In fact, Audrena participated in kindergarten round-up this week with flying colors! The areas they marked for us to work on before next fall were in the areas of gross motor skills relating to balance, and we knew those things would be a struggle for her due to her vestibular system. Rhyming words were marked as well, and that's something that we are currently working on. The preschool teachers, Audrena's EA, and the school's SLP have done a great job of preparing her for "big-kid" school! SD School for the Deaf (SDSD) recently completed evaluations, and we will all have an IEP meeting soon to determine whether we will send Audrena to kindergarten, or whether she will spend a year in junior kindergarten.

We know Audrena is behind in some areas, but we are still amazed at the progress she has made in the past year. Because she still has room to grow, so to speak, I sometimes have trouble seeing the future, where Audrena will speak as well as Reyana and Kelton, but I know we will get there with more time and hard work. Her articulation has improved over the past year, and she does a much better job answering questions and re-telling stories now. She still leaves out the in-between words in sentences, and now they are starting to work on auditory memory skills with her because the professionals at SDSD think that may be part of the issue.

We still take Audrena to the University of South Dakota Scottish Rite Speech & Hearing Clinic for Audiology and Speech-Language Pathology services. It has become like a second home to us, and we are so thankful to have the clinic so close to home. In fact, Audrena will be attending summer speech camp there for the third year in a row. Here is a photo that their photographer took yesterday and e-mailed to us. Our much-loved Dr. M. is with Audrena, and the student clinician is doing the programming.

 

That's all I have time to update with right now, but I will certainly try to be better about updating the blog! Life just gets so busy.

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.

Time for an update.

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.

It has been awhile, so I thought it would be a good time to update! We have just been so busy! Audrena is really taking to being bilateral. She knows when the headpiece falls off, and she either puts it back on by herself, or she comes to us and pats her ear to let us know. We do have the alert beep as well, so we usually know before she reaches us. However, we are trying to teach her to be independent with her implants.

We did have some question as to whether she was getting much from the new implant yet since we're still on the first set of programs. Daddy took Audrena to her programming appointment yesterday, and she repeated "bird" to him after he had said it. That was with just the new implant turned on. So it's good to know things are at least starting to sound ok to her. Sometimes it does take awhile for the brain to adapt to the new implant.

They took her into the sound booth, and of course she was just not into it. Audrena rarely cooperates in the booth. She would rather be exploring. Even with that, she did cooperate just enough for them to determine that she is at least at 35-40 decibels with just the new implant on her first sort of generic MAPP, 30-40 with the first implant, and 30-40 with both. Dr. M. from USD has always said (and others have told us as well) that 30-40 decibels is sort of the best expectation for cochlear implant recipients. We do know it's possible to do better. We know plenty of implant patients who hear at 15-25 decibels, and that is our goal for Audrena once she gets old enough to give the Audiologist some verbal information about how she is hearing during programming. Also, we have gotten booth tests with her first implant that showed 20-30. That, combined with what we see at home, are enough for us to believe that she is hearing better than yesterday's test suggests. Both of our Audiologists (Boys Town and USD) have said she could very well be hearing those softer sounds, but she is just not paying enough attention to them to be motivated to turn away from her toy when she hears them.

Also, I forgot to include in some of my previous posts that Audrena heard birds (this was before the second implant)! She heard them before she saw them! We were at the police department's Bike Rodeo at the high school, and there were finches in the rafters of the lunch room. We were eating, and suddenly Audrena looked up (way up) at the birds, pointed, and said, "Tweet tweet!" She had to have heard them because she had not been looking up at all. She was eating. When we first found out that Audrena was deaf, I would take her for a walk, listen to the birds, and wallow in self-pity that my baby girl would never hear those beautiful outdoor sounds like birds chirping. Birds are generally about 15 decibels on the audiogram (although the chart below shows them even softer), so I never expected that she would hear them with implants either. That moment in the high school lunch room was a really defining moment for me, one of those WOW moments that just takes my breath away whenever I think back on it.

Here is an audiogram chart so you can see what I am talking about. The yellow area is the speech banana, or the range that speech sounds fall into.

From firstyears.org

Another little hiccup to report...we may be headed back to the operating room. Yesterday, Dr. M. couldn't find the tube in Audrena's left ear. That's the one Dr. L. inserted in March. Granted, her tools may not magnify quite as much as an ENT's tools, and those tubes are tiny. But she is good, so I trust that if it was there she would have found it. We have an ENT appointment tomorrow morning to check it out. If it's not there, then Dr. L. will need to insert another one. It's such a minor procedure, but it would be the 6th ear surgery and the 7th time under anesthesia for Audrena. And there is always the possibility that she will need a tube in her right ear in the future. So if you are the praying type, say a little prayer that the tube is in place tomorrow, although I don't have much hope that it is. Next week is also our appointment at University of Iowa with the Pediatric Ophthalmologist who will monitor her Usher Syndrome and the doctor with the genetics laboratory that conducted the genetic testing. So please keep Audrena in your prayers that everything turns out well there, too!

On a more positive note, Audrena is really on a role with her speech and language, and she is making progress with her balance! She is saying new words all the time and starting to put them together. She is beginning to understand that there are different words for the same thing, and starting to use them interchangeably. For example, "woof woof," "puppy," and "dog." She also says, "Look at that," or "Look at those." Here are a few of her favorite words/phrases lately.

Look at that/those!
What's that?
Where go? (Where Daddy go?)
Get down!
Good job!/Very good!
NO!
Stop!
Mine!
And when you call her name, she answers with, "What?"
She has also learned "Kelton, "Ana" (for Reyana), and "Zach" (my nephew).

Although we always question whether we could be doing more for her, or whether there is something we are missing, we are so pleased with Audrena's progress!