Another bit of good news.

Today the occupational therapist came to evaluate Audrena. There were concerns that she would need regular occupational therapy, especially in the areas of visual/perceptual things in order to help her compensate for her lack of vestibular function. We were very surprised to hear that she is doing just fine in those areas. As of now, the occupational therapist was impressed with Audrena and feels that a once-a-month evaluation is appropriate, rather than weekly therapy visits. She just wants to monitor Audrena to make sure she doesn't eventually fall behind, but right now our little small and mighty girl is doing just fine.

We have a surgery date.

It's not what we were hoping for, but we'll take it. Apparently something was not quite as we thought, and the doctor will be out the first couple of weeks in July. He also wants to see Audrena in the clinic before surgery. So, even after asking if there was any possibility of going earlier, we are scheduled for July 31.

It's disappointing to wait that much longer, but in the meantime we will pray for a cancellation. Even a week earlier would be wonderful. We know that God has a plan, and everything will work out as it's meant to be. At least we have insurance approval and a surgery date. That's more than we had 24 hours ago, and it's progress!

A video from Boys Town.

This video is from Boys Town about what to expect on your child's surgery day. I'm mainly posting it here so that our family and friends from other areas of the country can see what Boys Town looks like. It's kind of like putting a face to a name.

The first building shown in the video is the Downtown Campus, where we had our pre-op appointments and vestibular testing. The skywalk shown in the foreground connects to the Lied Center, where we also had some appointments, and (from what I understand) where Audrena's activations will take place.

The second building is the West Campus, where we went for our consultation and Audrena's sedated ABR, MRI, and CT scan.

The hospital room shown at 22 seconds is just like the one we had when Audrena had her MRI and CT scan, except ours had a crib instead of a bed. Audrena played in the toy room shown at 2:06.

And the people? Yes, they really are that happy and smiley. Every single person we have encountered thus far has been nothing short of wonderful.

http://www.youtube.com/watch?v=Ohw3GCU63Aw&feature=plcp

A little about hearing and balance...

I'm trying to include research and educational materials in our blog as I find them. This video explains how we hear. At about 36 seconds, it talks about the hair cells. Those hair cells are what do not work in Audrena's ears, and it's called sensorineural hearing loss. Cochlear implants bypass those damaged hair cells by threading electrodes through that snail-shell shaped cochlea, delivering signals to the auditory nerve.

http://www.youtube.com/watch?v=vTiGskc1o48&feature=related

This video shows the ear structure, including the cochlea and the vestibular system. Audrena is missing the Posterior and the Lateral Semicircular Canals. She only has the Anterior Semicircular Canal, the one that sticks up on the top. This is the reason for her lack of balance and why she is late to walk.

http://www.youtube.com/watch?NR=1&feature=endscreen&v=WDfynsIk0PI&noredirect=1

Thank you to the posters of these Youtube videos!

She is approved!

We got word, although not officially in writing, that insurance has approved Audrena for bilateral CIs!!!!!!!!!! It was over the phone, but we're confident that this is really happening. I will say that up until an hour before the phone call, things were a little uncertain, although I don't feel like I can get into details on the internet. So to say that we feel a huge relief is an understatement.

Randy was on his lunch break, at a local restaurant, and he fought back tears as he called me to tell me. I was at another local restaurant, having lunch with another CI mom. I had to fight back the tears, too. My stomach has been in knots for the past week, and the relief is an awesome feeling.

Today has been a wonderful day. I had such a nice conversation with this other mom. Her son has bilateral CIs, and it was great to talk, in person, with someone who has been through it all. Plus, she lives here, so she is familiar with the school system and the people we are working with here. We both left the restaurant saying that we'll have to do this again.

Now we will just wait for a surgery date. I'm confident it will happen very soon.

UPDATE: We did receive a call from our surgeon's nurse this evening, so things are really official! She has sent our file to surgery scheduling, and we should get a phone call from them tomorrow! It sort of sounds as if the surgery might happen either the second or third week in July, and it's always on a Monday or Tuesday. So that narrows it down a bit.

Today has just been full of awesome! As we were getting home this evening, just after hearing from the nurse, my phone rang. It was a CI mom from a nearby town. Our family doctor had asked Randy if she could give our phone number to this family. I was so excited to hear from her, and we look forward to meeting their family soon! They have a wealth of experience to share, as their son received his CIs somewhere around 7 years ago. He was younger than Audrena when he was activated. He has quickly surpassed the need for an IEP, and he will start the next school year without one! They also know the mom I went to lunch with today, whose son is doing great with his CIs as well. It's so nice to be developing a network, so to speak, since we are in a relatively rural area.

It's an overwhelming sort of day.

After some discussion, we've decided that Audrena should really have physical therapy twice a week. Our physical therapist is excited and willing to learn about vestibular rehabilitation, and we know that if Audrena is going to walk independently any time soon it's going to be important to work with her as much as possible.

In addition, our physical therapist has suggested that we have the occupational therapist get involved. He said she just knows more about the visual/perceptual things that Audrena will need to help her compensate for her lack of balance.

Our "idea" as of right now is that after Audrena has her first CI activation, we would bump speech/AV therapy up to 3 times a week. We have also discussed doing 3 sessions per month at USD and one session per month at Boys Town. That would be basically 4 speech therapy sessions per week.

So with all things considered, we could be looking at 7 therapy sessions a week plus the activities we will do at home. I'm exhausted just thinking about it, but Randy and our daycare will be the ones to deal with most of it because he typically has some weekdays off. The rest of the weekdays are spent at daycare. (Thank goodness for a good daycare!) Plus we will also need to make sure that Reyana and Kelton get enough individual attention in the process.

I know these next few years will pass quickly, and in the grand scheme of things it's a small sacrifice. But it's still overwhelming. It feels like we're at the bottom of a mountain, contemplating how hard the climb will be. One thing is for certain, though, no matter how difficult this journey might be, we wouldn't trade Audrena for the world.

Interesting Interview About ClearVoice

We are so excited about this programming and what it will someday do for Audrena! Here is an interview that was posted on Audiology Online about ClearVoice with Tracey Kruger, VP of Marketing at Advanced Bionics.

http://www.audiologyonline.com/interview/interview_detail.asp?interview_id=634

I have read many great firsthand experiences from CI users with ClearVoice, so the benefits are really there. It's not just a marketing scheme.

It's the small things...

My family is at the playground, and I stopped home for a few things. I just got a blog-worthy phone call from Randy. He had put Audrena in her pack-n-play for a moment (yes, we do bring it along occasionally to keep her contained during moments where we might be outnumbered by our munchkins), and when he turned back to look at her, she was standing in the middle of the pack-n-play, holding her ball. Did you hear that? She was standing!!!! That might not be a blog-worthy milestone at 15 months, except that for parents of a girl with no vestibular function it is something to be excited about! We're getting there, guys. We're getting there. It's the small things in life that we get excited about. Happy Weekend, everyone!

Audrena is officially a candidate!

The CI team met yesterday, and I was trying so hard to be patient. My curiosity got the best of me, so I just called Boys Town. Audrena is officially approved as a candidate for cochlear implants! From here, Boys Town will need to get approval from our health insurance company. Once they receive that, they will schedule surgery.

She said the team leader might have some things to discuss with us, but it sounds to me like it would be routine items for their long-distance patients. We are just so excited!!!!!!

What an exciting couple of days!

And I have a feeling it's only going to get better from here!

We had all of our pre-candidacy appointments at Boys Town over the past two days. It started with the vestibular testing on Wednesday morning. I was very nervous about it because the testing would help the doctors determine which ear to implant first, and possibly whether bilateral implants would even be an option for Audrena. We already knew that Audrena is missing two out of the three semicircular canals in her vestibular system. If the system had been working better on one side than the other, it would help the doctors make those important decisions. However, the tests showed that her vestibular system is not really functioning.

After the vestibular testing, we met with Dr. K. Our doctor, Dr. L., had a funeral to attend, and Dr. K. is the other implant surgeon. The team manager had assured me we would really like Dr. K., and she was right! He explained to us that, although it sounds bad that Audrena's vestibular system is not working, it's actually very good from a surgery standpoint. However, as we already knew, Audrena will have to rely on other senses for balance and walking skills. Water will also be more dangerous for her because people with absent vestibular function can't really tell which way is up in the water. So it will be very important for her to have swimming lessons, and swimming in a lake or river will be very dangerous because of the murky water where she would not be able to see the surface. As for the rest of our discussion, Dr. K. just spent time answering our questions and discussing genetics with us. I needed that. As Randy said to him, "You just lifted a huge weight off of her shoulders." Of course, nothing is concrete until we are able to meet with the geneticists and have testing done, but I had been worrying about a certain syndrome. Dr. K. doesn't feel that there is much of a chance that Audrena has it. Also during that appointment, Dr. L.'s awesome nurse (seriously, she's been really great to us throughout this process) gave us the immunization schedule for meningitis, and Audrena is up to par for the surgery. One less thing we have to worry about!

Then came the meeting with the Speech Language Pathologist. I was a little concerned about this meeting just because I had been told that in the past Boys Town recommended Total Communication. However, when we told her that we will be using Auditory Verbal Therapy, she was very supportive. We were happy to work out some details regarding coordinating therapies with our SLP here. Overall, the visit was very informative and just a really good conversation.

From there we took a lunch break at Perkins and went back to the hospital for our Audiology meeting. They did some sound booth testing and were able to get Audrena to respond to some very loud sounds. We still don't know if she was reacting to the sound, or to the vibrations. Then they went to a different room to test out the hearing aids. By this point, Audrena was ready for a nap, and things were not looking promising. However, when Randy saw the machine, he recognized it as something that Dr. M. had done at USD the day before. They were able to call and have the information faxed.

We had a good feeling at the end of the day. Then it was back to the hotel for a nap, and then we went to dinner and checked out Bass Pro Shop. Audrena loved the waterfall, the fish, and the glass elevator!

Yesterday morning, we started with the device orientation. It included a wide range of discussion about Audrena's history, our expectations (although there was a separate meeting for this), a little education about the workings of the ear, the surgery, and the opportunity to hold the equipment from each of the three cochlear implant manufacturers: Med El, Cochlear, and Advanced Bionics. We had already done our research and knew which manufacturer we wanted to use, so after we were given a thorough introduction to each company, we signed the paperwork for Audrena to receive an Advanced Bionics implant!

Our last appointment was with the CI team leader for our expectations discussion. He asked lots of questions about what we expect as an outcome for Audrena post-implantation, how we would feel and what we would do if for some reason the implants were a fail for her, and discussed the long-term commitments for therapy sessions and finances regarding equipment replacement. It was a really great discussion.

At some point, we also learned that Boys Town has the capability for private webcasts. So our therapists here could actually watch Audrena having a therapy session there to learn what kinds of things Boys Town recommends for her. When it comes time for the implant activations, they can record the session for us as well as broadcasting the session live. It would be a secure internet connection where our family and friends could watch from home as Audrena hears her first sounds! How exciting!

Keep in mind that the team makes a decision as to whether or not to proceed with implantation for Audrena. They together determine candidacy, not one single person on the team. They meet on Wednesdays, so next week they will review this week's appointments and make their decision. However, we were told that the team discussed Audrena a bit at Wednesday's appointment even though we had not completed all of the appointments. Hopefully that is a very good sign for us! We also heard some little bits of things that we interpret to mean we'll be receiving some good news next week.

Randy and I left Omaha feeling better than we have felt in a long time. Every single person we have encountered at Boys Town, and I do mean every single person from the receptionists to the doctors, has been wonderful. We feel like we will have a truly fantastic team of professionals working on Audrena's side to help us ensure she will achieve her full potential. So right now we're just waiting for that phone call!

Pink and Orange and Zebra Print, Oh My!

Audrena got her hearing aids on Tuesday! She had an appointment at USD with our much-loved Dr. M. We are excited to say that she does not touch the hearing aids at all, and we have been able to determine that she is getting some benefit from them! Now, keep in mind that with a profound hearing loss, she is not getting any useable sound from them. As Dr. M. explained, it's like giving her 3 or 4 pieces of a 100 piece puzzle. The bits and pieces she is getting are of no real benefit to her aside from providing stimulation to her auditory nerve. It's important to get sound to that nerve because it's kind of like a muscle, in that if it's not stimulated it will atrophy over time. So although Audrena still does not hear us talk, we have seen her dance to small bits and pieces of loud music (at Texas Roadhouse over dinner), and she does not like the feedback that the hearing aids create when she tries to lay her head on our shoulders. We have determined that it is in fact the noise, and not the feeling of the hearing aid on her ear, because if we turn the hearing aid off she will lay her head down and rest there.

Doesn't Audrena look adorable with them? (I apologize for the poor quality cell phone photos.)

She got to have lunch at McDonald's to celebrate. Audrena picked pink for one ear mold.

Daddy picked orange for the other ear mold because he knew Reyana would like it! Dr. M. picked out the zebra print hearing aids. This is Audrena waiting for her lunch at Perkins after a full morning of appointments, which I'll talk about in the next post.