Off and A Little Conversation

There are many times during a day when one (if not both) of Drew's coils fall off through play. Either from falling down, rolling around or running, it is inevitable that coils will fall off, thus leaving Drew with only one ear to hear from or in silence. In the past, we have relied on the little flashing lights on his ear level piece to tell us that Drew is not hearing. I find myself constantly looking at his ears to make sure that everything is working correctly. Now, we have a new way of knowing: Drew!

Drew now tells us when his ear(s) is off. He can even tell which ear is off, as he will bring his hand up to the ear that is off while saying, "off, off." While driving in the car yesterday Drew said, "Mommy." I turned to look at him while saying, "Yes, Drew." He then pointed to his ear and said, "Off." Drew actually knew to get my attention and then tell me that his ear was not working correctly. I found that rather amazing.

At dinner this evening, Drew kept pointing to his left ear while saying, "Off." I kept telling him, "Drew, you ear isn't off," because I could plainly see that the coil was attached to his head. Upon further investigation, the flashing light was off. I found that his processor had indeed turned off and that Drew was not able to hear. I need to learn to listen to him and investigate more thoroughly!

On another note, Drew is having fantastic conversations with us! I feel like he is really understanding what we are saying and he is conversing with us appropriately:

Me: "Drew, please stop pushing your sister."
Drew: Continues pushing her.
Me: "Drew, look at me." [Drew turns his head and looks at me] "Will you please stop pushing your sister?"
Drew: "No."
Me: "Drew, you need to go to timeout."
Drew: While walking toward the timeout chair, "Okay."

And a conversation with his sister:

Drew: [Calling sister's name while running after her]
Drew's Sister: "Drew, do you want the vacuum?"
Drew: Shaking his head, "Esss."
Drew's Sister: [Hands him the vacuum] "There you go, Drew."
Drew: "Thank you."
Drew's Sister: "You're welcome."

The expression of "normal" is often over used and mis-understood. And seriously, what is normal? But I can't help feeling that whatever "normal" is, we're there. Sure, I have to talk to Drew all. the. time. And do "therapy." But I love to talk, so I would talk to him all the time even if he wasn't deaf. It feels natural, not forced and has become part of who I am and who we are as a family.

We're having a lot of fun. Drew is becoming a toddler, exploring the world around him and becoming more and more independent. Drew can have conversations with his sister, his Daddy, his aunts and uncles. Can it get any better? Knowing Drew, I'm sure it will!

Preakness Jockey Kent Desormeaux Races Against Time For Deaf Son With Cochlear Implants and Usher Syndrome

Two weeks ago we discovered that Kentucky Derby winning jockey Kent Desormeaux has a deaf son with cochlear implants, named Jake. Everyone in my family was so excited to see Jake on the television since you rarely see anyone with cochlear implants anywhere, and I searched the internet to find footage of the pre-race story about him (it is linked in my post immediately above). It was a shock to find out that Jake has Usher Syndrome (sometimes called "Usher's Syndrome"), a genetic condition which is causing Jake to lose his sight at an increasing pace.

This USA Today article describes how Jake has had 17 major surgeries during his life, including 11 on his ears, which is an incredible number. The family is trying to have Jake experience as much as possible visually, while he can still see - which must be heartbreaking each and every day. His prescription eyeglasses are outdated almost every couple of months.

Tomorrow, Jake's dad will race Big Brown in the 133rd Preakness Stakes, looking to complete the second piece of a possible Triple Crown. I wish Mr. Desormeaux the best of luck, so we can let young Jake see (and hear) his dad win another huge horse race.

New Friends

I've been emailing with a Mom from the east coast of the United States for several months now. Her son Ben was born in January with profound hearing loss. They are just beginning their cochlear implant candidacy. Through the wonderful world of the Internet, she was able to find Drew's blog, and we have talked at length about our path to hearing for Drew. She has decided to start a blog for Ben, and one of her first posts reminded me of one of the reasons why we wanted to start a blog for Drew as soon as we learned of his hearing loss. So to Ben's Big Family, we are so happy to have "met" you and so glad that we can help. You're at the beginning of an amazing road for your little boy!

Also, when Always Gone Dad left a comment on one of my recent posts, I was able to find Amelia's Journey. Amelia was just activated last week, and her dad just posted her activation video. Very exciting!

And, you'll want to check out six year old Brianna's story! She is waiting her activation in under one week! We've been reading his blog for awhile now, but Christian is scheduled for activation on May 27th!

I'm so glad that the Internet has been able to bring us all together. I know that Drew's Dad and I were really inspired by several little ones, as we went through the candidacy process for Drew's cochlear implants. I'm glad that we are now able to help others in the same way that those who have gone before us were able to help Drew and our family.

Amazing

Our bedtime routine around here is rather strict, as we try to bathe, dress, read to, sing with and put two toddlers to bed at the same time. While Drew's Dad gives the bath, I assemble the "jammies" and diapers, lay out the outfits for the coming day, pick up the kids rooms, etc. As the bath ends, Drew's Dad takes care of getting Drew ready for bed, while I attend to Drew's Sister.

Every night, for as long as I can remember now, Drew's Sister will run into Drew's room after getting her jammies on to give Drew a good night kiss. Recently, Drew's Sister has been rather slow at putting on her jammies, in an attempt to extend her bedtime. Well, apparently Drew really enjoys his nightly kiss from his sister, as he started calling her, by NAME! He said her name nearly perfectly, calling her to his room. After saying her name each time he would make a kissing sound.

Drew's Sister responded by running as fast as she could to Drew's room. She looked at Drew and said, "Drew!!! You said my name. That's amazing! That's sooooo amazing."

Drew now calls for his sister on a regular basis. If he wakes from his nap before her, he starts calling her name and walking around the house looking for her. If she's not in the same room with him, he begins calling her name and looking for her. As soon as he sees her, he starts saying her name over and over. Hearing him say his sisters name is priceless and something that, at one point, I thought might not be possible.

This is my most favorite thing he can say. At least at this point!

Kentucky Derby Winner Big Brown and Cochlear Implants

They call the Kentucky Derby the "most exciting two minutes in sports". While it turned out to be an exciting race, with winner Big Brown dominating the field, the excitement peaked when I noticed winning jockey Kent Desormeaux's son Jake after his father had just crossed the finish line.Jake is deaf, and wears bilateral cochlear implants.

At first I was unsure of what I had just seen. I thought I saw a child with cochlear implants on my TV screen, but because you don't see that too often (or ever), it took me a second look to be sure. It was so great to see another child like Drew out there in the world!

The announcer for the broadcast said something like "and there is son Jake, with those implants that allow him to hear the roar of the crowd". I thought it was a touching comment, and I think that will help the public become more aware of what cochlear implants are.

This article, from April of 2001, describes Jake's diagnosis and initial CI surgery. Another, earlier article describes his family's first thoughts and concerns about Jake's future.

As much as anything about the Kentucky Derby, Kent Desormeaux says, he enjoys the sounds. The weighty rattle of the starting gate as the doors slam shut behind the last horse to line up. The gathering roar of the crowd in the moment before the race begins.

The frenzied roar of the crowd as he rides a winner down the long Churchill Downs stretch, something he has done twice now, sounds pretty sweet, too.

Desormeaux and his wife, Sonia, got some bad news a couple of weeks ago. Their younger son, 14-month-old Jake, may never experience the delight of those sounds or any others.

Tests confirmed that Jake was born deaf. It's an affliction to which the jockey can relate, having lost the hearing in his right ear in a December 1992 racing accident at Hollywood Park.

``It's depressing to think your child is going to grow up without being able to hear music,'' Desormeaux said. Like ``My Old Kentucky Home''?

His family's tragedy put Desormeaux, 30, in a different mood as he approached Saturday's Derby, in which he rode the favored Fusaichi Pegasus to a convincing victory.

Thankfully, Jake's surgeries went well, and he was able to hear "My Old Kentucky Home" and the roar of the crowd as his father crossed the finish line on 2008 Kentucky Derby Champion Big Brown.

If Jake is the first person you've seen with a cochlear implant, and you came here to learn more, please leave a comment!

***Note: After searching for the NBC pre-race coverage (video here) we understand that young Jake was recently diagnosed with Usher's Syndrome(Usher Syndrome). Unfortunately, this means that Jake may experience vision impairment and possible difficulty with balance in a progressive fashion. Let us all pray that Jake be affected by this as little as possible.***

*** Here is the NBC Broadcast showing Jake at 2:48:***