Surgery Day! Watch this Picture Montage...

Hi Everyone-

Momma was very busy over the holiday weekend putting together this video to share with you what it was like on my surgery day...

We are thrilled to report everything went off without a hitch and I recovered quickly... So quickly in fact, you would never have known by my zooming about the very next day, that I'd even had surgery!

Love to you all,

More posts to come...

A Not-So-Brief History

Hi Everyone-

Mommy wants to tell you a story of my care history, so you can understand what our family has done to get ready for this exciting new phase! Here she goes (Beware..she can talk a...l...o...t!!)

There is a wonderful Doctor who lives in Tampa, FL named Dr. Chuck Berlin. When we first got the diagnosis of Auditory Neuropathy/ Dys-Synchrony, when Audrey was one month old--we immediately found that he is the utmost expert in this rare field of hearing loss. We were told that there is about 2 cases of AN/AD diagnosed in newborns each year in the state of Washington, approximately 100 cases each year in the entire US.

Dr. Berlin is an amazing resource for parents, in fact, he was holding a parents' conference a few weeks after we received our diagnosis, and we were so blessed to be able to fly across the US to spend a weekend with his team and other parents all hoping to learn how to best help our children.

We had multiple opportunities to see growing kids with AN/AD, talk with parents about their choices for care and to attend classes covering many topics including the newest research available on the diagnosis.

Upon our return to Seattle, we started Audrey's developmental testing at Children's Hospital. When you are diagnosed this young--it turns into a bit of a waiting game, while the kiddos grow and develop. We joined an Early Intervention program focused on helping us live our best life with Audrey's challenges, started learning sign language and focused our attention on therapy skills to use in our home to maximize Audrey's ability to gain language.

Auditory Neuropathy is confusing. To put it briefly, Audrey is a deaf kiddo that can hear. Her ears work properly, but there is a problem with the signal as it leaves her ear and travels to her brain. By the time the signal gets processed, it is distorted, late and garbled. Adults describe the sounds around them as buzzing bees, a radio between two stations or like a robot speaking very mechanically. So---to add to all the confusion of the rarity of this condition and lack of available information---sometimes she'll have a "hearing moment" and get our hopes up that she's getting better...

But over time, and after hours and hours of therapy work in our home and with our professionals, we realized that there was just no progress being made with her spoken language. We have tried hearing aids on her for over a year--and we didn't see any positive effects.

We travelled back to Tampa for a second parents' conference this spring and were able to gain so much more understanding after living with the diagnosis for a full year. We came back energized, organized and ready to start making the difficult decisions about how to best care for Audrey as she entered the important language learning age.

We asked Children's Hospital to review Audrey's case and consider us for a Cochlear Implant. We weren't ready for a surgery date, but wanted to have all our testing complete and paperwork ready, if and when we got to the point that her spoken language was delayed. Despite all our therapy work and all our work in educating ourselves on the latest information on AN/AD, Children's declined to consider Audrey for a Cochlear Implant. Unfortunately, they have only had about 15 cases of AN/AD in their center and are grossly under-informed about the benefit of implanting based on Language delay.

I was told that Seattle Children's only implant kids that fail their hearing tests at the most severe levels. Audrey registers hearing on the hearing tests, but we were seeing more and more that this hearing wasn't meaningful to her--because she wasn't gaining any spoken words.

We didn't take "no" as an answer the first time, so we came back to Children's to meet with the other director of the Implant program. The two doctors make team decisions on each case. Unfortunately, this appointment was a disaster. The doctor was confusing, drifted off task- to prove that she was more knowledgeable than us and gave Audrey a hearing test that actually brought tears to my eyes. The testing was very unreliable and I could see her registering "hearing" that was definitely NOT.

She listened to us give our points on Audrey, but in the end, she was very reluctant about the Cochlear Implant. I took this refusal as the catalyst to get to work on the language side to prove what I knew in my heart--that Audrey was not going to develop spoken language--even though she was ready to communicate with us. We found our amazing therapist, Miss Leticia, and immediately got busy testing Audrey on all the standardized tests we could, to build data for me to resubmit to Children's.

In the meantime, Audrey blossomed with her sign language. In less than 2 months, she gained 60 signs that she could sign to us! ...And not one word formed. At this point I was convinced it was a signal problem.

Dr. Berlin from Tampa helped me regroup and refocus my energy on finding a different center that would see the benefit in giving Audrey access to consistent sound through the CI. And that's just what we did!

If you are interested in learning more about Auditory Neuropathy, and seeing the amazing work that Dr. Berlin has compiled, visit:
www.auditoryneuropathy.com

Here is a simulation of what it sounds like to hear when your anatomy is affected with Auditory Neuropathy/Dys-Synchrony:

http://www.ucihs.uci.edu/hesp/Simulations/simulationsmain.htm

The Call We've Been Dreaming Of Receiving

"So many of my prayers came true today, I need to get a whole new set of prayers!" Mommy



Thursday, May 15th, 2008



Today we had aural habilitation therapy...which is a fancy way to say that I go to Miss Leticia's office to play with toys and she teaches me how to make the hearing I have meaningful. Miss Leticia is so kind to me, and I like to play these games with her. She and Mommy talk alot today, and Mommy is keeping her phone right by her side. She tells Miss Leticia that we might get a call any minute letting us know about my Cochlear Implant surgery.

Enough yammering Mom....let's play with the Rockin' Elmo and the Mr. Potato Head. I also get to go into the big pen of plastic balls and swing in an indoor swing. Super-fun!



Next, we go home, I take a nap, and then Miss Patti comes to our house for a visit. She helps me and Mommy once a week, giving us therapy ideas, teaching us new signs, and checking my ears and hearing aids. She is a good friend to Mommy and offers caring support and advice to help Mommy do even better in her care of me.



Thursdays are a busy day for me. I'm usually exhausted after all this visiting with these wonderful ladies who care for me and my family.



But....today was a very special Thursday. Momma received a call from Miss Stacey that made her so happy, she was jumping for joy! Miss Stacey let us know that the medical team did review our case, and that Dr. Backous wanted to offer Cochlear Implant surgery for me on WEDNESDAY, MAY 21st. That is only 6 days from today!!! Mommy enthusiastically agreed to the date and started a flurry of phone calls to family and friends to share the good news.



Mommy and Daddy think that we should share some information on Cochlear Implants, so you will all have a better idea of what they look like and how they work:


A cochlear implant is a safe, reliable, and effective treatment for severe-to-profound hearing loss in adults and children. Designed to allow implant users to hear sounds as they occur, a cochlear implant can enhance communication abilities with better hearing and speaking potential for implant recipients. The device consists of an internal implant and an externally worn speech processor. The external speech processor comes in a body-worn style or an ear level style (pictured below).




1. Sound is picked-up by a microphone.
2. Sound is sent from the microphone to a speech processor.
3. The speech processor analyzes and digitizes the sound into coded signals.
4. Coded signals are sent to the transmitter coil via radio frequency.
5. The transmitter coil sends the code across the skin to the internal implant.
6. The internal implant converts the code to electrical signals.
7. The signals are sent to the electrodes to stimulate the remaining nerve fibers.
8. The signals are recognized as sounds by the brain, producing a hearing sensation.
Each speech processor is programmed to meet the users individual hearing needs. Different speech coding strategies emphasize different pitch, loudness, and timing cues. The brain receives the information within microseconds of the microphone picking up sound, so sound is heard as it occurs.

Virginia Mason Seattle, Meeting Dr.Backous

"The Blessings Continue!"-- Mommy


Tuesday, May 13th 10:30am





Next, Mommy, Daddy and I go into a new room, with fancy machinery and a special chair right in the middle.





Someone I have never seen before, Dr.Backous, comes in and I make sure to give him my best not-so-sure-about-you-stranger look. That always gets me a laugh from the grown ups. But, pretty soon, I am sure that he is okay, so I go back to my normal busy-bee activities and smiling and giggling like I've known him forever.





Here's a picture of Dr.Backous:
He's very nice. He, Daddy and Mommy looked at a disc on the computer that had pictures of my brain and ears from a test called an MR/CT scan.
Dr.B thinks that everything looks good in there and that physically I am good to go for the Cochlear Implant. Cool.

Next, I get to meet the nicest nurse I have ever met. Her name is Miss Kim and she is wonderful. She sat me in her lap and I got to read magazines with her. She even let me rip the pages. Which I REALLY love to do. Mommy never lets me rip pages. She talked to me and kept me busy while Mommy and Daddy talked to the doctor some more.

Dr.Backous asked why we were here and Mommy shot off the longest statement ever about my language delay, my at age-level aptitude everywhere else and about Auditory Neuropathy being too much to over come with hearing aids. I wasn't sure she was ever going to stop--she's been fighting with my other doctors for a while, who refuse to help me, so you should hear her go on. She ended her statement with "She's ready. We're ready." Dr. Backous then said, then, "We're ready, too." He said, "I don't want her to go another day without hearing." letting us know that he would make time on his schedule as early as possible, because he wants to help me so much! Wow. That brought more tears to Mommy's eyes--because that is what she has been praying for this whole time. Help for me so that I will be able to hear clearly and learn to speak.

Daddy asked what timeframe he'd be looking at, thinking that June would just be so amazingly soon...when Dr. Backous says, "how about next week?"

The room got very still while Mommy and Daddy took this all in. Well--still everywhere except for me, who never stops wiggling.

Doctor filled out tons of paperwork and said that we'd have to check my immunizations---yeah-I don't think so. I hate shots. But that he'd start the insurance authorization so we'd be set for next week. I've never seen Mommy so quiet around a Doctor. She usually talks and talks and talks and talks. Must have been really good news today! She's all talked out!

We left the office with the promise that a call would come Thursday after the team meeting where they will discuss my case and finalize the schedule, offering us a date for surgery.

Virginia Mason Seattle, Audiology Appointment

"God is Great! When He answers a prayer....he does it with gusto!!"-- Mommy

Tuesday, May 13th, 2008 8am

Mommy and Daddy, and I all went to Virginia Mason in Seattle to meet with a new Audiologist, Miss Stacey and a new Surgeon, Dr. Backous. I've never been to this place before, but everyone smiles at me and makes me feel happy to be here. I get to ride in a big elevator waaaaaaay up 10 floors!




Miss Stacey is sooo kind to me and lets me play with all her toys. She has an ENTIRE box full of stickers and I get to take as many as I want and dump them all over the floor!



Here's a picture of Miss Stacey Watson:



Mommy and Daddy are filled with smiles, so I know Miss Stacey is telling them really good things. Miss Stacey goes through all the pages in the book that Mommy keeps all my medical records in, and they talk and talk and talk and talk about how I am doing. B..o..r..i..n..g. Where's the snacks????



They take me into the sound booth and I do one more of those tests where they make a bunch of beeps and I turn my head when I notice it. Miss Stacey is magic. She can even make a tweety bird dance when I look the right direction. They have fun toys and I notice the beeps sometimes which leads to an Elephant dancing or the monkey beating on his drums. My favorite is definitely the Tweety Bird though. I keep signing "bird", so Miss Stacey will know that I want her to use her magic on that toy most!!



We finish with those toys and then go back to Miss Stacey's room. More sticker-dumping. YEAH!!! That's fun. Next, Miss Stacey gets a big briefcase and takes out these weird metal things and hands them to Mommy and Daddy. Mommy starts crying. Grown ups are so silly. It's just that Cochlear Implant stuff. We've seen it all before. One piece goes inside and one piece goes outside. They stick together with a magnet and they help me hear. Hmm--who knew that in one visit, after reviewing my records and giving me that one test, Miss Stacey would tell Mommy and Daddy that her team will definitely help me receive my Cochlear Implant. All the grown-ups look at, touch, assemble and take apart these weird things for a while so Mommy and Daddy can think---For the very FIRST time about the reality of me getting one of these implants. More tears from Mommy when Miss Stacey thinks they can help us when their schedule clears up, in early June.



We leave Miss Stacey's office and I keep Daddy busy running after me all over the place. I make sure and smile at all the other people in the area, but Mommy keeps making me put my dress down. I like to lift it up and show my tummy off. My family makes such a big deal about my tummy--shouldn't everyone get to see it? This place is fun.

Mommy calls it the Learning for Life Center at Virginia Mason. We clicked on these letters and we got to read all about them:
https://www.virginiamason.org/home/dept.cfm?id=406