Drew Can Say "Go Buckeyes"!

Last year we showed you how Drew Loves the Ohio State Buckeyes.

This year he can show off his "fanhood" even more by saying "Go Bucks!", and perhaps most importantly can express his thoughts toward "that team up north". Watch Drew in action.

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*

"I Want To See God"

On Sunday evening, our family sat together eating dinner at a restaurant. It hadn't rained for 15 days, so when the sky began to turn gray we were hoping for some relief for our stressed lawn.

Drew was in his high chair exclaiming "chip!" for his tortilla chips he grasped above his head, and his three-year-old sister sat to my left next to the large picture window, overlooking the restaurant's landscaping and the dark skies above.
Our daughter took notice of these clouds, and was asking things such as "where does rain come from?" (the clouds), "can a plane fly in the clouds?" (yes, and actually can fly above them), and "can a plane fly to God"? (no).

She paused for a moment as she ate her quesadilla, contemplating these answers, and a line suddenly appeared on her brow. She had an important question.

"I want to see God", she stated. "Can I see God, daddy?", she asked, her root beer colored eyes looking up at me.

I thought for a second, caught off-guard, and replied, "No, honey, daddy and mommy have to see God first."

Her eyes rumpled with confused strain, and she took another long pause to consider this proposal. She took a breath and pleaded in almost a whisper "No! But who will watch us? I want to go with you."

A dense storm engulfed us. Not just the rain that now rushed off the edge of the walks and overflowed the gutters outside, but in our hearts. Out tears fell like the raindrops opposite the window.

The look on her face, and the tone of her voice were crushing to us. The thought of not having her (and Drew) with us is unbearable, but so is the thought of her feeling left behind.

Such is life, I suppose. We must enjoy these stormy moments (and all moments), uncomfortable as they may be, and live life in a way which will leave us with wonderful memories to carry us through any loss we face, and prepare our kids and other loved ones to move along under their own power without us.

What's the point of living if we don't have anything to lose?

Hearing Aid Tax Credit

When Drew was first diagnosed with hearing loss, we were disappointed to learn that many, if not all, health insurance providers do not provide coverage for hearing aids. We knew that Drew would in all likely hood not benefit from hearing aids enough to develop normal speech and language, but hearing aids were a critical step to stimulate his auditory nerve with his residual hearing.

Our family was fortunate in two regards: 1. Our state's Early Intervention Program provided Drew with loaner hearing aids at no charge; and 2. Drew would only need hearing aids until his cochlear implant surgery, alleviating the need to purchase.

For many families, hearing aids provide their children with appropriate amplification for life. But these families are faced with the financial burden of paying for the hearing aids themselves, some as much as $5000 per ear. And hearing aids don't last a lifetime. As technology changes, hearing aids are replaced. I recently learned of the Hearing Aid Tax Credit. Please take a moment to write your congressmen/women about this important legislation. I certainly don't think that this legislation is enough, but it is a start. We can all make a difference.

Incidental Learning

Drew's language is really exploding, as he is adding new words and new two and three word phrases each day. After returning from the beach, even my Mom, who normally sees him on a daily basis, commented on how much more he is talking! Very exciting!

Drew's Dad and I are amazed at how much Drew is learning that we aren't teaching him. One of Drew's favorite phrases right now is, "[Sister's name] take it." Anytime his sister has something he wants, or that she has stolen from him, he whines and says that phrase! The only way we can figure that he learned it is from us asking his sister, "Did you take it from Drew?" It is amazing! We certainly didn't teach him to tell us when she takes things from him. In fact, it can be quite annoying, as we hear it about a thousand times a day!

Also, Drew is learning which restaurant chain has certain types of food. When we are driving and pass a Pizza Hut his will say, "Pizza." When he sees McDonald's he says, "Chicken." Bob Evans? Pancakes. We certainly have not taught him this, he is just learning the food chain logos and associating it with the food he eats at each restaurant. (Maybe we eat out too much?)

This incidental learning is so important, and one area of language development that hearing impaired children typically struggle with. The struggles generally stem from not being able to hear well in noisy situations, or not being able to understand the language without the speaker looking at them (to help with lip reading). It is amazing just how well Drew is able to hear with his implants. And part of the reason that his everyday speech is coming along so well and is in context with different situations is because he is doing well with his incidental learning.

It is so much fun to watch this language development. It is just...so...normal.

Road Trip!

When we decided to take the kids to the beach this summer, Drew's Dad and I were worried about the long drive. What would we do to keep two kids entertained for 10+ hours of windshield time? We were worried that they would get cranky and make an already rough ride worse with crazy behavior.

I'm excited to report that they could not have been better (on the drive, at the beach is a different story)! I packed plenty of snacks and activities, and we coordinated the drive well with nap time and bed time, so the kids slept a good amount of the time. We split the trip up on the way down, and Drew and his sister enjoyed their first stay in a hotel room!

Drew and His Sister enjoying a morning cartoon.

Drew's Dad and I find that the car is an excellent language environment. There are so many things to look at and talk about while driving in a car, especially when you're driving through new areas of this beautiful country.

As we drove south through Virginia, we went through several tunnels in the Blue Ridge Mountains. Drew loved the tunnels! He would say, "Wow!" the whole time we were driving through one, and as we left the tunnel he would say, "More, tunnel...More TUNNEL!!" He loved them! And now we can add the word tunnel to his vocabulary list.

We also passed a lot of pastures while driving through Virginia. Anytime Drew saw an animal he would make his animal noises. We'd be driving and hear a "moo" or "neigh" from the back seat. Drew would even sing his little song, "Where oh where...cow?" All four of us had fun singing and looking for different things: trucks, cars, cows, horses, sheep, just to name a few. It's amazing how quickly the miles pass as you are playing fun games!

As we got into North Carolina and the sun was setting, the kids were becoming bored of games, songs and movies. We turned the movies off and told Drew and his sister that it was time for bed. They were both just sitting in their seats, settling down for the night when we heard Drew say, "Go Bucks!" It was hilarious! Clearly he was sitting in his car seat, bored, thinking, "Hmmm, I'm bored. I should say something. What should I say?" So, he busted out a "Go Bucks!" and we were all back to laughing, talking and playing games.

While Drew was watching one of his movies, we heard him sing "Twinkle, Twinkle Little Star." It was so sweet to listen to his little voice sing. He was able to say several of the words clearly and was even singing somewhat in tune. It was a wonderful moment as we realize just how special it is that he can even hear music, let alone sing along with it. I don't think Drew's Dad and I have ever smiled more on such a long car ride. It was an excellent reminder of just how far Drew's language has come in this past year. We are forever grateful for this wonderful technology!

What Does A Cochlear Implant Look Like? - Captioned Version

Last week I posted a video titled "What Does a Cochlear Implant Look Like?", which I thought would be helpful for everyone who hadn't seen one up close before.

In my rush to get it posted (it had been sitting on the camera for months), I neglected to add captions using Overstream. Elizabeth at DeafVillage.com told me she thought the video was really valuable, so I made sure to add the captions to make sure everyone could see what I am describing in the video.

Here is the link to the captioned version of What Does A Cochlear Implant Look Like?

Swimming with Cochlear Implants

Drew's Dad wrote a post in February after he found a wonderful You Tube! video showing a way to swim with a cochlear implant on. I have to tell you how excited we were to have found this, as I can not imagine Drew not being able to hear at the beach or the pool. He relies solely on oral communication, so it would be very difficult to communicate with him if he was not wearing his cochlear implants. And as Drew is all boy, we need him to hear us tell him no, stop, don't throw that, etc!

On our recent beach vacation we found a couple of modifications to the video helpful:

• Sealing: We modified the food saver technique by making two seals on the bag. We would seal the food saver bag once, then move the bag about 1/2" and seal again. This made us 100% confidant that the seals were clean and that the processor would not get any water on it.


• Increase Magnet Strength: We increased the strength of the coil magnet to help hold the bag to Drew's head a lot better. Typically Drew wears a strength "1" magnet. While using the food saver method, we used a strength "2", which held the coil in place much better, making it not only easy to get the swim cap on, but also keep the magnet in the proper place as Drew ran, rolled, swam and did all sorts of other crazy thing. (Note: We used a strength "1" on Day 1 at the beach and were very frustrated with the ability to keep his ears on.)


• One: For a bilateral child, only use one implant while swimming. We tried using two and it made getting the swim cap on virtually impossible. There is just too much equipment under the swim cap. It seemed like every time we would get one on with the swim cap, the other side was falling off. So, on Day 2 at the beach, we used just one processor, and had excellent results. (Also note, should you have an accident with a processor getting wet, your child will still have an ear to hear from).


• Which Ear?: For a bilateral child with varying map intensity, use the ear that has the "weaker" map. Drew's left ear requires much less "power" than his right, so we used the left ear while at the beach, just in case the coil became attached to the wrong ear. When Drew's right processor is accidentally put on his left ear it causes him great pain, so we avoided any accidental issues by "waterproofing" the left ear.


• Swim Cap Issues: We had a problem with Drew not liking the fact that the swim cap is tight on his head. We avoided having Drew pull his ear off multiple times by allowing him to wear his regular ears to the beach. We changed Drew to the "waterproofed" ear (note the singularity) before letting him out of the stroller. At this time he had so much to do that he wouldn't try to pull the swim cap off. Then we placed his regular ears in the zip lock bag and placed them in our beach bag until we were ready to leave the beach or pool.

I can honestly say that the food saver bag does waterproof the processor, as Drew pulled his swim cap and ear off while sitting in the ocean! The bag was floating in the water, without a drop of water on the processor. For our next trip to the beach I will be bringing a critter clip with us, so we can attach the food saver bag to Drew's swim trunks so that his ear doesn't float away in the ocean!

Overall, the waterproofing technique worked very well, and we were really happy with how well Drew could hear us, even with only one ear, the background noise of the ocean and a bag covering the microphones. He was clearly able to hear us well, even at a distance. At one point Drew was playing in a water puddle about 50 yards from where I was sitting (with his Dad supervising) and he heard me tell him to "jump" in the puddle.

Both Drew's Dad and I commented that we wish we would have brought one of Drew's Hanna Andersson pilot caps to try as the way to keep the coil on Drew's head. We felt very confidant with the waterproofing of the processor, and we both think that Drew would have been more comfortable with the pilot cap, as opposed to the swim cap, as he is used to wearing those at home.

As I read cochlear implant message boards, it seems as though waterproofing hearing technology is a "hot topic". Is there anything you would like to add that has worked well for your family? If so, please leave a comment.

Beach Bums

We've just returned from a week at the beach. We enjoyed seeing and hearing the ocean waves, and Drew and his sister enjoyed playing in the sand. Drew's Dad and I are very tired and hoping that the kids' meltdowns subside now that we are home and back to our regular schedule.

Drew learned a lot of new words while we were on vacation and is talking consistently in two and three word sentences. Some of our favorites are "ice cream cone" (which he asks for several times a day), "beach, dig" and "Thank You Mommy."

We will post more with some of the highlights of the trip and little things we learned that might make taking a CI child to the beach just a bit easier.

What Does A Cochlear Implant Look Like?

I recorded this video several months ago because as I was remembering our confusion and lack of information when we first heard the words "cochlear implant". What exactly was it? What in the world did this implant look like?

At first I was hoping that Drew wouldn't have to wear hearing aids simply because I feared people or children in school would make fun of him. When we discovered his lack of hearing was more serious than that, I was left wondering what the implants looked like.

I searched for cochlear implant pictures, and I found a picture of an implant that looked like it must have been used in medieval Europe. This thing was a GINORMOUS satellite dish on the side of the kids head, with what looked like cat-5 cable tv cords coming out of it, running to a box the size of a laptop tied to the kids back with barbed wire.

Ok, I exaggerate a bit - but that's what it felt like at that time. So, because I want to make sure curious parents or other members of the public can see what the implant looks like and what pieces it's made of, I give you:

What Does A Cochlear Implant Look Like?

Note: This video is showing Cochlear's Freedom processors with babyworn and snug-fit technologies. Bodyworn or BTE (behind-the-ear) setups can be used, but are just not depicted in this video. What this means is that this setup is for little kids. For bigger kids or adults, you wouldn't have that long cable, it would all sit right on your ear (imagine you "erased" the long cable and only have what's shown above it left).

Please let us know if this video is helpful.

***I've added a captioned version of this video through Overstream. Here it is!

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!