Snow Tubing

Drew has really enjoyed watching the Winter X-Games on ESPN over the past couple of weeks. He is always asking what "trick" a skier or snowboarder is performing, and he's been asking to go skiing. I'm not quite sure that he is ready for that, so we decided on Snow Tubing at Mad River Mountain.

Drew and his sister loved it! They had so much fun snow tubing. They kept asking to go up the mountain again and again. To be honest, I think I may be sore for days from the experience, but they had a great time!

Here is a video from the experience:

Across the Field

Drew attended his first Ohio State football game this weekend! We made the mistake of telling Drew on Wednesday that we had tickets to this weekends game. He was instantly excited, and has been asking each morning if it was time to go to the game. Today, when we opened his bedroom door, he simply said, "Terrelle Pryor?" To which I nodded, and Drew's grin lit up the whole room.

Drew's love for all sports is infections. His love for football is awesome. Drew's Dad and I are really enjoying sharing our love of everything Ohio State with our little boy. Today, we introduced him to "Skull Session", stadium hot dogs, The Best Damn Band in the Land, Carmen Ohio, the Buckeye Bounce and an Ohio State Victory.

How Tall This Fall?

So tall this fall, with the help of his tip-toes!

Today, we spent a very beautiful, sunny fall day checking out a local farm, complete with a hay-ride, games and pumpkin picking. Or, as Drew say, "Punk-in Picking!" We all had a wonderful time, relaxing and enjoying the day. It's so nice to have our lives back to normal.

Anyone...

Heading to St. Louis?

If you are, please let us know. We are looking forward to meeting many internet friends!

All I Want for Christmas

Drew's Sister has been practicing for her first tap dance performance! She is going to dance to "All I Want for Christmas is my Two Front Teeth." Her tap class has been practicing their dance for several weeks now, and the teacher sent home the dance steps, requesting that we practice at home.

I love to dance, and have always loved to dance. So, of course this homework was right up my ally! Drew's Sister and I, for about the last week or so, have been practicing after dinner her tap dance routine. I will say the instructions, and then she will do the dance move. It goes something like, "Bam. Bam. Bam, bam together. Bam. Bam. Bam, bam together. Jump out. Jump in. Sing, If only I could whistle!" (It sounds rather silly as I write it out, but I promise, Drew's Sister understands!)

Yesterday as we were playing in the morning, Drew's Sister started doing her dance moves, and Drew said, "Bam! Bam! Together! Whistle!," and then imitated doing a whistle. It was so amazing, since we have never worked on this with him at all. He learned all of this language on his own, through incidental listening! Just amazing.

Meet Me in St. Louis?

I mailed our registration today for the Parent Summer Workshop at The Moog Center for Deaf Education. This program, Helping Your Child Learn to Talk, runs from July 15 -19, 2009 at the Moog Center in St. Louis, MO.

We are really excited to return to Moog. It will be nearly three years, when the conference rolls around, since our last visit. We were in such a different place emotionally when we were last there. Having just learned of Drew's profound hearing loss hours before, we toured the school and talked with the director, and left with the hope we needed to carry on. I will be forever grateful for the information and direction they provided us in some of the darkest days of this journey.

I'm also really excited to show off our little guy and get an "outside" evaluation, from one of the top Oral Deaf Education program's in the country. I'm hoping they see him as the CI Superstar we do.

Our First Cochlear Implant Ear Infection

It's been a long time coming, but Drew's first ear infection has popped up. Yesterday he was pointing to his ear saying "Ow, ear". He continued to say this in the morning, and so after a trip to the pediatrician, we found Drew has his first ear infection.

Our cochlear implant surgeon had told us before Drew's surgery that should he ever have an ear infection, to contact him immediately to head off any problems the infection could cause with Drew's implants.

It turns out that our surgeon wants to treat the infection more aggressively than the pediatrician would (for good reason). We got a higher-powered antibiotic and it was prescribed for twice as long.

Drew seems to be doing OK right now (playing with his hockey puck and watching Little Bear), but I'm going to keep my eye on him.

As a side note, I recall having multiple ear infections as a child. Much of those memories is focused on the pain and pressure of the ear infections, but I also remember how it sounded as if you were underwater, hardly able to hear.

With Drew, of course, his hearing is not affected at all by this ear infection. Rather, he only feels the pressure building up on his swollen eardrum. I just thought this was interesting since having an ear infection usually brings such a drastic loss of hearing ability...but not for our CI guy.

An Amazing Experience: Meeting MLB Pitcher Jim Abbott

On a recent trip to California, Drew's Dad and I met Olympic Gold Medalist and former Major League Baseball pitcher Jim Abbott. We were fortunate enough to attend a meeting my company was holding where Jim was the keynote speaker. It was such an amazing experience to listen to him speak about his ability to become a successful baseball player, against all odds.




Born without a right hand, Jim Abbott defied all of the odds to become a major league baseball pitcher. Despite being born with a disability, he truly believes that more has given to him than was ever taken away by his birth defect. He talked to our group about the need to A.D.A.P.T. in order to overcome our circumstances and achieve our goals:

• Adjustability: Thinking of a different way to do things, given your circumstances. For Jim, he had to make adjustments just to be able to tie his shoes. For Drew, we use a food saver to water proof his cochlear implants for swimming. No matter what the circumstance, little adjustments can make just about any situation work.
• Determination: We are constantly told about the things we can not do. If we start to believe that we can not do something, it limits our abilities. We must filter out all of the negativity in order to reach our goals.
• Accountability: Never let the circumstances of life be an excuse for not meeting your goals. You are accountable for your actions. Have you made the most of your talents today?
• Perseverance: At times, your goals may not seem possible. But so much is possible if you just hang on to your goal and keep working!
• Trust: The ability to know that you are prepared and can do anything! Bring trust into every situation! You can achieve just about anything if you trust in your abilities.

During the presentation, Jim demonstrated little adaptations he had to make in order to be able not only to pitch, but field his position. He showed us how he would get his glove back on after pitching the ball, in order to field his position. In fact, I was the one that got to play catch with him during this part of the presentation! Check playing catch with a New York Yankee pitcher-that-threw-a-no-hitter off of my "to-do" list!

This presentation was designed to speak to my inner "sales representative" soul, in a time of economic strife, but instead struck special cord as a mom of a child with special needs. There were points during his presentation where I could feel myself tearing up. What did Jim's parents do to raise such a strong, secure, determined son? How had Jim handled being made fun of for being and looking different? When did Jim learn of his disability, and what did his parents tell him about it? There were so many questions that ran through my mind. I wanted to learn as much as I could from him on how I can impower Drew to be self-confidant, determined, successful and proud of being different.

Fortunately, Drew's Dad and I were able to spend a considerable amount of time one-on-one with Jim, and were able to talk about our personal situation. We asked Jim if he could give us any advice on how to empower Drew. Jim told us of his Dad, and that one of his dad's key motto's to him was "Be a leader today!" Jim's Dad talked with him each day about the choices he had to make, and that if Jim was a leader, all of his friends and classmates would follow.

Jim also spoke of how being a part of a team, as baseball provided, was a great way to help him "fit in". He strongly encouraged having Drew participate and lead in team sports, which would lead to acceptance without questioning his differences.

If you believe in yourself, nothing can stop you, and then amazing things can happen. We left with an autographed baseball: "To Drew, Anything is Possible!" Jim Abbott

***Drew's Dad here...I just wanted to add this video in case one of you hadn't heard of Jim Abbott. Enjoy!***

Cochlear Implant Mapping For Children

Nationwide Children's Hospital is holding a Hearing Team Support Series which discusses important topics for families of children with hearing loss. I attended the Individualized Education Plan session in July and this past week I attended the session on Cochlear Implant Mapping. The presentation was excellent, and I learned a lot of technical information regarding implant mapping, specifically for young children, that I did not know. Cochlear Implant Mapping is very technical, and even a year later, I still have a difficult time understanding it all. As parents, we play a crucial role in the mapping process, so it is important that we understand as much as possible about this technology.

The information I will provide was taught at the presentation and is correct, to the best of my understanding, and is specific to the Cochlear Brand of implants. There are slight differences between the three manufacturers, so the terminology used may vary slightly from one manufacturer to the next. If you feel that any information provided is inaccurate, please leave a comment so I can research further.

There are three parameters of sound that the audiologist is programming during the mapping session that allows the implant to translate external sound into the electrical signal that stimulates the auditory nerve, allowing for perception of sound. These three parameters include pitch, loudness and tempo.

With normal, acoustic hearing pitch is heard from 20 - 20,000 hertz (Hz). Cochlear Implant maps provide pitch across 120 - 7200 Hz, which are the primary speech frequencies. The hertz distribution is coded among the available electrodes providing electrical stimulus for the cochlear implant recipients. Individuals with cochlear implants do not hear the entire distribution of sound like a person with normal hearing. For example, the Middle C of a piano is at a pitch of 250 Hz. As you move down the piano, the hertz get lower and lower, so an individual with electrical hearing can not tell the difference in the pitch of the sound outside of the parameters of their map. Programming the pitch across the electrodes is critical for hearing all of the nuances of speech. Consider the "eeee" sound, for example. "Eeee" is not just one sound, but a collection of sound across different frequencies. In order to develop speech equivalent to hearing peers, pitch programming is essential.

The loudness, or intensity of the sound affects the voltage required to run the map. With acoustical hearing there is a loudness range of about 120 decibels (db). With electrical hearing, there is a range of roughly 40 db's. This is called the dynamic range and it is the difference between the threshold level, T-level and Comfort level, C-level. The T-level is lowest level of stimulation needed to hear. The C-level is the maximum stimulation of sound that can be comfortably tolerated. The difference in the dynamic range is no more than 40 db's for a person with a cochlear implant. For our children, patient participation is not practical, so the audiologist must find a different way to establish the T and C levels. Neural Response Telemetry is software provided by Cochlear that provides the audiologist with with the levels need for an individual to hear. There can be some minimal variability in what the computer suggests as T and C levels for the patient, so the audiologist with also use their past experience, updated information from parents, teachers and therapists and hearing tests (in the sound booth, with conditioned response when age appropriate) in order to program the processor.

I found this area of the presentation to be the most interesting. When looking at the dynamic range, this means that the map actually takes really soft sounds and increases them to the T-level, and it takes very loud sounds and decreases them to the C-level. This finally explains why Drew is so loud sometimes! He has no idea how loud his screams actually sound to me, with my natural acoustic hearing. We can roughly estimate, knowing that the goal for cochlear implant recipients is to hear at 20 db, that Drew is hearing his loud screams at what we would know 60 db's to sound like. With a dynamic range of only 40 db's (versus my range of 120 db's), Drew has no idea how loud he sounds! (I don't know why I didn't understand this prior to this course, but finally his behavior is making sense to me! As a side note, if any parents with older cochlear implant children have any suggestions on how to help Drew understand that he is actually louder than what he hears, please leave a comment.)

The final area of the programming revolves around tempo. This is referring to how fast the speech is coded. With the newest cochlear implant technology, speech can be coded between 250 - 1800 Hz. In layman's (my kind of) terms, this means how many times per second sound is coded through the electrodes in order to stimulate the auditory nerve fibers. This provides the recipient with detailed information on the timing of sound. The default is 900 Hz, which means that the processor codes sound 900 times per second. This can be tweaked for each individual, but apparently faster is not better, because if the sound is coded too fast, the recipient can have a difficult time interpreting sound. For children have little participation in the mapping process, most audiologists use the default settings.

During the time of activation, and shortly thereafter, mapping sessions are quite frequent. As a map is established, there are several ways that a parent can identify the need for a mapping session:

• Decrease in child's auditory reaction or alertness to sound
• Decrease in vocalizations and/or vocal play
• "Slushy" production of previously mastered speech sounds
• Any sign of physical discomfort, such as eye or facial twitches
• After one month of use, the child should tolerate their everyday program all day. If they require a quieter map to start the day, consult with the audiologist.
• Difficulty operating external equipment
• Irritation to the skin under the transmitting coil/magnet
• Refusal to wear sound processor all day
• Child complains of difficulty of hearing

I have found the following on-line resources to be helpful when trying to learn more, and understand, cochlear implant mapping for children:

Audiology On-line

American Speech-Language-Hearing Association

Speech Pathology

Hearing Pocket

Save the Date

The Ohio Chapter of The Alexander Graham Bell Association Presents:

Keynote Speaker:

Carol Flexer Ph.D.

http://www.carolflexer.com/

The 2008

Ohio Chapter

Annual Conference

Open to Members & Nonmembers

Saturday, November 1, 2008
10 am – 4 pm

Nationwide Hospital
Columbus, OH

Hampton Inn: Downtown Columbus
Room Block for Conference Attendees for Oct. 31, 2008
Single Occupancy $103.00 or Double Occupancy $113.00
www.hamptoninn.com/hi/columbus-downtown
(614) 559-2000 or 1-800-HAMPTON
Group Code: AG1

*Visit http://www.agbell.org/oh for more info*

CI Picnic

We attended our second Cochlear Implant Picnic this weekend. It is an annual event hosted by Nationwide Children's Hospital, and is an opportunity for families with children with cochlear implants to meet and talk about their experiences. We had an enjoyable day, although we wish the weather wasn't so hot.

Drew and his surgeon, Dr. Richard Kang

It was such a hot day that we left shortly after eating lunch. Drew was very hot and cranky, so we didn't have a lot of opportunity to talk with others, like last year. We're hopeful that next years picnic falls on an August day where a cold front is moving through the area!

How Do You Spell Disaster?

M-O-V-I-E!


Drew's Dad and I (well, me, actually) had the brilliant idea to take Drew and his Sister to their first movie this weekend. We thought that Wall-E would be an excellent movie to see with them. They enjoy animated shows, Pixar has an excellent reputation for animation and the movie is only an hour and a half long. It had been raining all day, so why not?


Sure, it started off well. Drew and his Sister really enjoyed sitting in their chairs, snacking on some popcorn and sipping their juice boxes.

They even enjoyed watching the opening previews. The highlight was when Drew started saying "cheese", "squeak, squeak" and "oh, no" over and over at the preview of The Tale of Despereaux Mouse. He was enjoying every minute of the trailer. (Maybe we should take him to see that movie instead?)

From there, it pretty much went down hill. The kids didn't want to sit in their seats, insisting on standing in the aisle. Then, they were hanging on the backs of the chairs in front of us, disturbing others. They started fighting over the bag of popcorn. Drew wanted to walk down the aisle of the movie theater, running into other movie watchers. He protested with one of his loud screams when I kept him in our seating area. Drew's Sister decided that she needed "to go potty." By the time Wall-E actually took the screen, we had about had it, and when Drew screamed at the top of his lungs, "Ma Ma, Hi," I had had enough and escorted him from the theater.

Drew's Dad and Sister stayed and enjoyed much of the movie, although she became restless at the end, wondering where I had gone. They left with ten minutes to go and did not see the end of the movie.

Drew and I spent the time wondering around the lobby of the movie theater. It turns out that you can actually use the lobby of a movie theater for learning to listen exercises:

• "Drew," while pointing to the movie poster for HSM2, "where are the girls shoes? Where are her eyes? What is this?," while pointing to a characters' hair. We spent a good five minutes identifying body parts on this poster.
• Drew met "The Hulk." There was a large statue of him in the lobby. Drew was a little nervous of it at first, but warmed up after a few minutes. Now, he can give the Hulk high five, and can point to his toes.
• Drew also knows Batman, although he calls him, "Bad Man." It is quite funny.

While in the lobby I saw a woman walk up to the customer service desk and ask for an assistive device. Thinking that she was hearing impaired I waived my hand at her and said, "Is that a listening device?" I explained to her that I was curious as to how it works, since my son is deaf. She explained that it was actually a device for the blind that describes the action in the movie, which helps her since she is legally blind. As we spoke I learned that she and her husband work for a not-for-profit organization that advocates for the deaf and blind. They worked with the theater to bring these devices to Columbus.

So, I guess the evening wasn't a total wash, but considering that I only saw about two seconds of the movie, I wouldn't call it a fun, relaxing evening. We will attempt to take the kids to the movies again, but it might be a good year from now! Oh, and I have to acknowledge AMC. The receptionist saw me walking around with Drew for so long that she gave me two passes to see a movie at a later date (which Drew's Dad and I will attend sans the kids). How nice is that?

HLAA Walk4Hearing 2008

The Walk4Hearing is a nationally coordinated effort sponsored by the Hearing Loss Association of America. The HLAA is the nation’s foremost consumer organization representing people with hearing loss. HLAA impacts accessibility, public policy, research, public awareness, and service delivery related to hearing loss on a national and global level. The HLAA mission is to open the world of communication to people with hearing loss through information, education, advocacy, and support. The Walk4Hearing is the HLAA's primary way of generating funds and raising awareness about hearing loss and related issues.

We learned of the Walk4Hearing through the Ohio Chapter of AG Bell. Our chapter is helping to sponsor the walk and will be volunteering on walk day. In addition, many members of the Ohio Chapter of AG Bell will be participating in the walk, including Drew! There is a kick-off luncheon at Dave and Busters on Saturday April 12 at 11:30 am. There will be a brief speech made at the luncheon about AG Bell by...ME! I'm honored that I was asked to represent the Ohio Chapter of AG Bell at this event and am excited to help kick off a wonderful event!

The 5K walk in Columbus, Ohio will take place on Saturday, June 7th at 10:00 am. It will be held at Beekman Park on the Ohio State University campus. We have created a team for the walk called Turn On My Ears! Please join our team! You can make a financial contribution, if you would like, or you can walk with us as part of team Turn On My Ears! It is a great way to raise awareness about hearing loss. Drew hopes to see you there!

Snowed In!

Drew's Dad and I woke up a little bummed this morning. We were looking forward to attending the Deaf Initiatives' Navigating Your Child's Future seminar today - complete with childcare! But as a result of Blizzard 2008, we've decided to stay home. The roads look awful, it is still snowing, and the last time I looked at the calendar it said March.

I don't know if they will reschedule this presentation for a later date or not. One presenter drove all the way from Pennsylvania!

Here's to spring being right around the corner.

Upcoming Events

Drew's Dad posted information on the Bilateral Implants: Updates and Controversies Conference that will take place in May in Columbus, Ohio.

In addition, there are several other upcoming events.

Deaf Initiatives is holding one of their "Navigating Your Childs Future" workshops at the Alexander Graham Bell School in Columbus, Ohio on Saturday, March 8th. This class will teach innovative techniques to help parents work with their child who is deaf or hard of hearing to develop the literacy skills necessary for their academic and personal success. Participants will learn appropriate activities that can be utilized to support the development of critical reading skills such as phonemic awareness and phonics. Registration is open and only $10. The best thing of all is that child care is provided free of charge!

The 62nd Annual Ohio Speech Language Hearing Association is holding its annual convention from March 6-8 in Columbus, Ohio. Topics include Childhood Apraxia of Speech: Assessment and Treatment, Language and Literacy, Teaching Listening and Spoken Language and Trends in Pediatric Cochlear Implants, just to name a few. If you would like to attend, you can register the day of the convention.

The Alexander Graham Bell Association for the Deaf and Hard of Hearing will be holding its annual convention in Milwaukee, Wisconsin from June 27th - 30th. Registration is now open. This convention has so much to offer including short courses, exhibitors and product demonstrations.

Bilateral Cochlear Implants: Updates and Controversies Conference

Meet Drew's friend Jonah.

Jonah is quite famous in the cochlear implant world in Columbus, Ohio. He's been featured on the local news and in ad campaigns for Nationwide Children's Hospital. That's partly because he has been so successful being implanted with simultaneous, bilateral cochlear implants at a young age, but it's also got to be because he's so cute too (don't you agree?).

Drew and his sister got to go to Jonah's home for his birthday party, and we all had a great time. Drew got him a book featuring dinosaurs that he can practice speaking with. We hope he likes it!

This postcard was sent promoting the "Bilateral Cochlear Implants: Updates and Controversies Conference" which will be held May 22, 2008 in Columbus. The featured speaker is Blake Papsin, MD, who is the program director of the Cochlear Implant Program in Toronto, Canada. Sounds interesting.

Mama Had a Baby and His Ears Popped Off!

The list of things that I thought I would never say just got longer.

I took the kids to The Center of Science and Industry for the first time today. We had a great time playing in the Bob the Builder and Water exhibits, eating lunch and taking in an electric light show. I think we will be frequenting COSI a lot over the coming years.

We happened to be walking by an exhibit hall just as a show was beginning. It was a show all about holiday lights, which I new my daughter would enjoy. We went in, took our seats in the front row and the show immediately began.

"Ladies and Gentlemen, Boys and Girls, Welcome to the Holiday Lights Extravaganza. This is the biggest and loudest show COSI has to offer!"

Oh no. The loudest show COSI has to offer? I knew a loud show would not be good for Drew. What would I do if the loud noises scared him?

The scientist went on to explain that she would tell us to cover our ears before she made any of the loud, exploding noises. I decided that I would just pop off Drew's coils when she indicated to the audience to cover their ears. I then made sure my daughter knew how to cover her ears, so she would not be scared while I was tending to Drew.

The show was very fun, and neither child was scared of the loud sounds, mainly because Drew never heard them. Problem avoided. We watched Rudy the Reindeer ride a bike to power Christmas Lights, saw Snowmen light up with the help of liquid nitrogen and learned why Ralphie's tounge stuck to the pole in A Christmas Story. It was fun.

On the way out, the scientist commented how well my two little ones did with the loud noises. Without thinking, I looked at her and said, "Oh, it was easy. She's good at covering her ears, and I just popped his ears off so he wouldn't hear the noises."

As I walked away, I laughed. "Popped his ears off." Too funny. I wonder what she was thinking.