Padawan Drew

We've been busy celebrating Drew's 5th Birthday! It's hard to believe that our little boy is now five years old. We celebrated with a family trip to Disney World - even the Grandparents flew to Florida to celebrate the big event.

One of the highlights of our trip was the Jedi Training Academy at Hollywood Studios:



Seriously, how cool is that? Drew's Dad and I both felt such a sense of happiness watching the little guy on stage. Five years ago, as he was diagnosed with profound hearing loss, we had no idea what these five years would bring for him. A few days ago, Drew was standing on a stage, listening to instructions from from his Jedi Master, just like all of his little Padawan friends, without any help. It's truly amazing.

Drew is now obsessed with Star Wars. He woke this morning asking to go to Target and buy a Storm Trooper helmet. Drew used birthday money this weekend to buy two Star Wars Lego sets. It's actually a bit out of control. But watching him become a boy, who's really into Star Wars, is also totally awesome.

Happy 5th Birthday Drew. We hope it's not one that you'll soon forget!

Road Trip!

Oh. My. Word. We just returned from a weeks vacation at the beach, and my ears need a break! We took a little road trip to the lovely island of Hilton Head, South Carolina, to celebrate the last un-official week of summer. While road tripping, Drew decided that he likes to talk. A lot. And he talked the entire 10 hour drive. Non-stop. He was relentless. Never tired. Talking the entire ride. It went something like this:

[Drew]: Mom. Mom. Mom! I need to talk to you because I like to talk. Mom. Mom. Mom! I have something to tell you. Mom. Mom. Mom! Buzz and Wuzz rhyme. Did you know that? Mom? Mom! Did you know that Woody and Moody rhyme? Seriously, it rhymes! I'm serious. Jessie and messy rhyme. I'm serious.

[Me]: Drew, it's time to settle down and rest. You need to take a nap. Let's stop talking.

[Drew]: But Mom! I need to talk. Mom, I need to talk. I need to tell you something. Zurg and furg rhyme. Did you know that?

[Me]: Drew, it's nap time, now STOP TALKING!

[Drew]: But Mom, I can't sleep. It's too light out. I can't sleep. I need to talk.

[Me]: If it is too light, put your blankie over your eyes and take a little rest.

So this is what he did:

And he continued to talk, at a whisper, under the blanket for the next hour. Once he pulled the blanket off, you can pretty much re-read the above conversation. And that was our trip. For ten hours.

Actually, my ears are ringing just writing this post.

Water Babe

Drew is a water maniac. On our recent vacation Drew and his sister invented the "tuck in".

Cedar Point with CI's

We recently made our annual trip to Cedar Point with Drew and his sister. The kids both love amusement rides and junk fair-type foods, and were extremely excited to spend the day running around the park.

This is a picture of Drew and his sister taking off on the Jr. Gemini for the first time. It's a mini version of the real Gemini roller coaster, just for kids. Drew and his sister were big enough to ride by themselves, so off they went together. As their car pulled out of the station, a sense of panic came over me. Drew was wearing only the BTE portion of his cochlear implants. He had never ridden a ride this intense without a parent by his side to protect his CI's, nor had he ever ridden a ride without his babyworn system. I turned to Drew's Dad and mentioned my fear. We both worried the entire time they were flying around the track. I resolved myself to an afternoon of combing the grounds beneath the roller coaster searching for missing parts, but luckily that did not happen. Drew returned, two CI's still in place. A sense of relief came over us, until the coaster took off again. Another minute of painfully waiting for Drew to return with both ears.

All was well. He didn't have an ear come off all day. And I think he rode the Jr. Gemini about twenty times. Although it ended well, we have an oto-clip (scroll down to the bottom of page) on order.

Airport Travel with a Cochlear Implant

We recently return from our first family vacation that involved air travel! We went to Disney World to celebrate Drew's Sisters' 5th Birthday, and this meant that the kids flew on an airplane for the first time.

I did a little bit of research prior to the flight, mostly revolving around the security process as it related to Drew's cochlear implants. I was worried that Drew would beep going through security, and I was a little worried about taking all of Drew's spare equipment with me on the airplane (would TSA search my bags with such unfamiliar equipment stashed throughout my bags?). I found that many cochlear implant recipients walk right through the metal detectors, reporting a bit of a buzzing sound in their ears, but no other complications. I also learned that most travel with their back up accessories in their carry on luggage. And I certainly carried Drew's medical cards with me, which we were given at the time of his surgery.

As we approached the security check point on our outbound flight, TSA ushered Drew and I to a separate screening area. After I walked through the metal detector, as I have hundreds of times before, Drew and I were moved to a secure area where he was "patted down". He never walked through the metal detectors. I thought it was very cautionary on TSA's part, and I was very impressed by their professionalism. The screener said that he didn't want any damage to Drew's equipment, so they hand screen all cochlear implant travelers.

The exactly same thing happened on our flight home. Again, I was screened through the metal detector, and then Drew was brought to a secure location with me where he was again "patted down". The TSA agent was very professional again, explaining to Drew exactly what he was going to do. We loved our "special" screening in Orlando, as we were moved to a separate line and spared from a very long security line!

Overall, our security clearing process was a piece of cake, and just one additional little thing that is so normal in this little boys life.

Blogging Fun in St. Louis

We've returned from our annual family vacation, which this year included a trip to The Moog Center for Deaf Education. I'll share information from the wonderful courses and seminars we attended throughout the four day conference in future posts. I would strongly encourage those readers with young children with hearing loss to attend the Summer Parent Workshop. It is an excellent educational opportunity as well as a wonderful way to meet other parents. (And as a bonus, your child will receive four hours of therapy throughout the seminar! For $150, it's worth it just for that!)

Our first night in St. Louis we were able to meet Elizabeth from Deaf Village and co-author of Cochlear Implant Online. Elizabeth is currently working on her graduate studies in oral deaf education and certainly has a world of possibility in front of her. The way she interacted with Drew was amazing, and Drew's Dad and I quickly began the recruitment process, trying to lure her to our area of the country.

Elizabeth, it was wonderful meeting you!

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!

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.