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.

Sneak Peek at New Processors from AB and Cochlear

Once again, CochlearImplantHELP.com has pulled through with a spy photo of new technology. Follow the link for a sneak peek of Cochlear's newest processor. I'm amazed at how tiny it seems to be, and I can't wait to see it in person. For those who are not familiar with the different cochlear implant manufacturers, Audrena has an Advanced Bionics implant, so this link is NOT a processor for her implant. It is for the new Cochlear brand implant processor. Med-El is the third manufacturer approved in the US. All three implant companies give excellent results, so it's really a matter of choice and preference for implant recipients or their parents.

CochlearImplantHELP.com Photo of New Cochlear Processor

And of course, I can't show off Cochlear's technology without also showcasing Advanced Bionics because that is what Audrena has! AB is now making the new processor available to anyone receiving an implant, even though it will be released this summer. This means that Audrena will be able to get this new technology for both ears once she has her bilateral surgery! We are beyond excited about it! She currently has two Neptune processors, and we intend to get her two of the new behind-the-ear processors. Then she will have the latest technology and the option of wearing the processor on her ear like a hearing aid, or off the ear as she does now with the body-worn Neptune. The technological capabilities of this new processor are amazing!

Advanced Bionics New Behind-The-Ear Processor 2013

Here is a link back to a blog post I wrote a few months ago when Med-El announced its new processor, the RONDO.

http://audrenasears.blogspot.com/2012/11/interesting-things-are-on-horizon.html

Howard Samuels Interviews AB Senior Executives

Check out this link for an interview by engineer Howard Samuels of CochlearImplantHELP.com with Advanced Bionics Senior Executives. I fully admit that I have not taken time to read the entire interview, but I did skip to section 5 about technology and liked what I saw.
CochlearImplantHELP.com Interview with Advanced Bionics Senior Executives

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!

Just another update

For the most part, the appointments at Boys Town went well. Dr. L. took one look at Audrena's incision and said it was not infection. As it turns out, what we thought was pus was actually her body spitting out stitches that had not dissolved properly. He also removed the packing from her ears. One of the fat grafts seemed to take, but her ear drum was retracting a bit from negative pressure. He will be keeping an eye on that, and if need be, he will place a tube in there again. The other fat graft did not take, so he will do a cartilage graft at a later date.

The ophthalmology appointment went about as we expected, except for one little hitch. As it turns out, I misunderstood something, and Boys Town does not actually do the ERG test. Omaha Children's Hospital does it. So that was delayed until we can get things scheduled. The doctor did, however, do a thorough exam. He said he didn't see anything that concerned him, but because she is deaf, he wants to ensure that sees the best she can possibly see. So he prescribed glasses to correct some farsightedness, and he hopes to also correct the strabismus with them. He will see her back in 6 months. We did order two tiny pairs of glasses last Friday, and they will be in this weekend. I thought it was important to have a spare pair because you just never know when something will get broken! She will have a blue pair and a light brown pair. Keeping them on should be quite an adventure!

Audrena took a nap before the programming appointment, so she was very cooperative this time. However, she was also congested with a cold, so her booth testing was still not good. We will repeat it at USD again soon to make sure that's all it was since she did test well at USD in between these last two Boys Town programming appointments. It seems strange that congestion would affect hearing with a cochlear implant, but many implant users and Audiologists have told us it does. Audrena continues to say and do things at home that make us think she is hearing just fine. We were excited that J. programmed one of the three slots with Clear Voice! Clear Voice filters out background noise like road noise in the car, fans, the dishwasher, and other things like that. It will help Audrena hear better in certain situations. J. also adjusted the programming so that we can be sure Audrena is hearing the "sss" (/s/) sound, which was the only ling sound she wasn't able to hear.

On Monday, Audrena was fitted for a new ear mold at USD for the hearing aid. She will have red and clear swirls this time. Hopefully it's the last ear mold we will need before the next implant surgery!

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.

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

"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."

Oh those magnets!

I already had to call on some more experienced parents for help with Audrena's CI. That didn't take long! We suspected that Audrena's headpiece magnet was too strong. It was creating a pink circle on her skin, and we were afraid of skin breakdown, which can be very bad. We were not sure if it was just her super-sensitive fair skin, or if it really was a magnet issue. I received some good suggestions, so we are giving one a try, and I think it is helping.

Inside of the Neptune headpiece, there is a magnet (or two in the water mic) and a foam spacer. There is a magnet in the internal implant component. The headpiece magnet attaches itself to the magnet inside of Audrena's head, so there is not actually anything showing through her skin. If she was not wearing the external components, there would be no indication that she has a cochlear implant. I'm including a picture below to show what I'm talking about. The magnet typically goes into the hole in the grey piece first (so it's closest to the skin), then the spacer, and the white cap fits over top.

Grey water mic, two magnets with foam spacer sitting between, and white cap.

The suggestion we are trying is to put the spacer in first, then the magnet. It is a little weak that way, but it will get us through the weekend. Monday we will contact our Audiologist for a weaker strength magnet, or see if she has any other tricks for us to try.

Another suggestion we received would be to loosen the screw a bit. The Neptune does not have a screw. However, I think the Cochlear brand implants do.

Some of my blogs may be pretty mundane or technical details that most people would not be interested in reading, but I hope they will help a new CI parent (such as myself) someday.

The Big Activation was a Success!

Wednesday morning found us in Omaha again. Audrena had an x-ray, and then we saw Dr. L. He showed us the x-ray and showed us the marking electrode, which he would have liked to get 1 millimeter further in, but he said it was a full insertion. We held Audrena down while he removed the stitches, which were mostly dissolved already, and she was madder than a hornet! Then he looked at he packing in her ear. (He had removed her tube and patched it with a fat graft.) He preferred to leave that in awhile, so he will likely take it out during the left ear CI surgery. We discussed the activation appointment, and we asked him to take a quick look at her medical alert bracelet to see that it contained the right information. Then we were on our way.

After lunch we returned to the Lied Center for the activation. The IT man did a few last minute things to prepare for the webcast, we chatted with the implant team manager, made a few phone calls to make sure our family had gotten into the webcast, and then it was time to start.

Our Audiologist explained a little about the process, that they would test each electrode for responses from the auditory nerve, and they would put beeps through the implant, watching carefully for cues from Audrena (i.e. blinking, or turning into my shoulder) to make sure it was not too loud. After all of that, they would turn on the mic so that she could hear sounds within the room. There was another Audiologist playing with Audrena to keep her attention and also to watch for those cues.

Here is a short clip of Audrena's first response to sound! She heard the beep and then turned to look at the Audiologist behind me. She responded that way throughout the programming. At that first head turn, we felt like we shouldn't believe it. Did we really see her turn to a sound? We couldn't believe our eyes. Then she started consistently stilling, turning her eyes back and forth to try to localize it, and then turning to look at the Audiologist. We did a pretty good job of keeping our emotions in check, but we fought the tears for sure! It was an overwhelming moment. I can't even describe the rush of emotion. From silence to sound with a series of beeps, and our daughter's life is forever changed. We knew in that moment, with every bit of our hearts, that we made the right decision.

After the programming was done for the day, the Audiologist gave us the rundown of how to care for the Advanced Bionics Neptune. She told us that there were 3 program levels that we should work through before the next morning. If any one of them seemed too loud for Audrena (i.e. if we noticed blinks or other reactions), we should back off and go back to the previous program. We took our suitcase full of equipment and went to the Listening Therapy appointment.

Our Speech-Language Pathologist went over things we should do at home, and she engaged in some play with Audrena, showing us how we can help Audrena to develop her speech and language. We did notice that Audrena seemed to hear her when she made the "aaaahhhh" noise for a toy airplane and the "ssshhhh" noise for a sleeping baby. Audrena also turned when the SLP accidentally slammed the toy cabinet door. In retrospect, we should have been participating a little more in this appointment, but by this time we were mentally exhausted and mostly just watched. I promise we soaked in the information, though!

After we were done, we went to check into our hotel. We quickly discovered that it's impossible to keep the headpiece on in the car seat. Since then, an experienced parent has suggested we get out our Hanna Andersson Aviator Cap for car rides. For the time being, we gave up on keeping the CI on in the car. My grandma was in the hospital, so we decided to take Audrena to see her. What better thing to lift the spirits than a visit from your great-grandbaby? The extra two hours in the car that day were completely worth it to see Grandma and Audrena together!

It was a long and exhausting day, but we did observe Audrena responding to sound. I went to bed emotionally and mentally drained. It was pretty taxing to observe Audrena hearing with her implant, then to see my grandma in the hospital, to replace the headpiece a million and ten times both in and out of the car, and then to have to try to remember what exactly we needed to do with the implant for the overnight. We had to unpack the "suitcase" of supplies and sort through it to find what we needed. It was a late night. Needless to say, we all slept very good!

The next morning, we were back with our Audiologists for more programming. They finished testing the electrodes and developed two additional programs for us to try. Audrena did pretty well for about an hour, and then she was just done. They did say that usually they see a big blossom from the children at either one or three months. We will be back in two weeks for another session. When we got to the car, Audrena fell asleep immediately! She was exhausted.

Since we have been home, we have seen Audrena protest heartily when her CI is removed, point at her ear when she hears a sound, and concentrate when she hears something. We didn't expect all of these things so soon after activation. After all, we are in the early stages of programming right now.

I would also like to take the opportunity to address something because other new CI parents are likely to run into the same situation at some point. We knew going into this that cochlear implants are very controversial. The Deaf community/culture (not sure I'm using the correct terms here) can be very anti-implant for various reasons. I understand that. I respect that completely. I experienced both support for, and resistance to, Audrena's implant today. I didn't expect it so soon, but I knew it would happen someday. Without getting into identities on a public blog, I will just say that I received some good words from a deaf person who does not have a CI, and I also had a deaf person tell me that we should have waited until Audrena is old enough to decide for herself. She also told me that if Audrena were in an accident, she could not be resuscitated with paddles because it would "blow her brains out." I know that is untrue and is an old wives' tale, so to speak, about cochlear implants. My husband and I both have just enough medical background to know what is or is not possible. People quickly came to my defense, and I appreciate that. Randy and I did not take this decision lightly. We weighed the risks. We asked the medical questions. We explored our options wholeheartedly. We even considered moving to Minnesota or St. Louis to be near an excellent school for the deaf. We considered what Audrena might or might not want later in life. We know that deaf people absolutely thrive with sign language, and they can do great things. In fact, we do plan to have Audrena learn sign language as she gets older because there is always the possibility that she will need it. Not being able to hear would not make or break Audrena, but we are confident that it will help her throughout life. If Audrena decides she does not want the implant later in life, then she can choose not to wear it, or she can choose to have it removed. In the meantime, we are committed to our decision, and we're happy with the results we have seen thus far in these early days.

We'll continue to keep you all updated as the next surgery date approaches!

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.

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!

A musical improvement is coming for CI users!

I am nowhere near musically inclined. Actually, I couldn't carry a tune if my life depended on it, but I do enjoy music and was sad when I first read that cochlear implant users don't have the ability to hear music like we do. Since then I've read stories from so many CI users that DO enjoy music, both those who lost their hearing at some point and those who were born deaf. But I read something today that made me so happy! There is a new program currently in testing stages that will change the musical world for CI users. Granted, it takes awhile for things to be approved by the FDA, especially for pediatric use. Someone correct me if I'm wrong, but I don't think that HiRes 120 is even approved yet for pediatrics. Someday, though, there will be potential for Audrena to hear music the way we hear it. Randy and I are constantly amazed at the technology that is packed into such a little device!

Check out this link for the story. http://cochlearimplanthelp.com/2012/05/16/a-musical-odyssey/

For now we will just continue to pray that everything goes well at our pre-op appointments and during the surgeries. I cannot wait for our baby girl to hear Daddy tell her, "I love you."

Some Real Life Size Perspective

Randy met with Dr. M. this morning at USD. He had questions and just wanted to pick her brain a bit. She's an absolute wealth of knowledge and a really great person. Randy took Reyana with him, and this is what they got to see and touch.

This is an Advanced Bionics Neptune in Reyana's hand. It looks big, but remember that this is her little five-year-old hand. In reality, the processor (on the right) is similar in size to a tube of lipstick. The round piece is the part that attaches to the internal component. It's simply held onto the skin with a magnet that clings through skin/tissue to the internal component.

Here is the internal, implanted component sitting next to the Neptune processor. You can see the electrode array coiled up at the bottom left. That is the part that is inserted into the cochlea. In the upper left corner is a BTE (behind-the-ear) processor. The "skinnier" part fits up over the ear, and the thicker part would sit behind it. Audrena is far too tiny yet for a BTE, so she would have a BWP (body-worn processor) like the Neptune. They make little arm bands or waist harnesses to hold the processors.

How a Cochlear Implant Works

For those of you wondering what a cochlear implant does and how it works, here is a link to Advanced Bionics' website. There is a section called "How Hearing with a Cochlear Implant System Works." It explains things pretty well but in easy-to-understand terms. There are actually 3 cochlear implant manufacturers. We will discuss the options for equipment with the implant team at Boys Town, but with the research we've done so far, we're considering the Advanced Bionics Neptune for Audrena. It's waterproof, so she would be able to wear it during swimming lessons.

I do plan to continue to post informational links and resources on this blog as we go. Hopefully they will help another family just starting out on the hearing journey.