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.

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!

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."

An absolutely ingenious invention!

Since sometime around April, we (ok, I, but I share with Randy) have been corresponding with a family from Lincoln, NE, both through e-mail and Facebook. They have a daughter who just entered kindergarten way ahead of the game. She received bilateral cochlear implants from the same doctor who did Audrena's surgeries. Lily's grandmothers came up with an absolutely ingenious idea for a tank top that holds the Advanced Bionics Neptune processors very nicely! We are very thankful to Lily's mom and grandma (who sews them by hand!) for sending one to Audrena. I have since purchased some tank tops and am in the process of making some for Audrena, using the other tank top and her detailed instructions as a guide.

Here is a link to their original blog post about the tank tops. I cannot praise them enough. Before the tank top, we were constantly putting the headpiece back on Audrena's head because the little cord clips would catch just enough to pull the headpiece off when Audrena would move a certain way. We always struggled with where to clip the processor on her clothing, and we could already predict that it would become a problem during potty training. The AB harness is pretty bulky, so although it was a decent solution for certain outfits, it was not our preferred method for "wearing" the processor. This tank top solves everything. Daycare has even noticed that the headpiece doesn't fall off as often. The cord tabs (our tank has 2) in the back allow the cord to slide as needed while still keeping it in place. The processor fits nicely into the pocket, and it sits at her side, so diaper changes and the car seat are no problem. So for this wonderful invention, I send out a public THANK YOU to Lily's family for the tank top and for the instructions so that I can make more.

To everyone else, I completely recommend reading Lily's blog, which is full of great information about cochlear implants, and it's a wonderful testament to what cochlear implants can do for a person. This blog is what has lifted our spirits during tough times. We could see the possibilities for Audrena by reading about Lily's progress. She is truly an amazing child, and we pray that Audrena can have the same kind of results from her CIs, with some hard work of course. Her parents are an inspiration, and her mom has been a great mentor for us.

http://ardinger.typepad.com/

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.

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.