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.

Dr. Jacques Herzog - Cochlear Implant Surgeon

Back what seems like years ago, when we were totally in the dark as to the different ways we may be able to help Drew, we were fortunate enough to meet Dr. Jacques Herzog who is a cochlear implant surgeon in St. Louis.

We called upon many of our friends and family members to help us find information resources, and it just so happened that my uncle lived in St. Louis and knew Dr. Herzog. Because we were having a nightmare of a time getting a diagnostic ABR test scheduled for Drew in Columbus, we ended up driving all the way to St. Louis and got that test completed over a month before we would have been able to do it at home.

That morning we were saddened to discover that Drew was indeed profoundly deaf in both ears, but were grateful to work with an extraordinarily kind technician who comforted us. She then directed us to Dr. Herzog's office where he met with us and answered many "stupid" questions that we had. While his answers did not speak of a magical cure for deafness, we did feel comfortable knowing a bit more about the cochlear implant option.

Here is Dr. Herzog explaining Cochlear Implants:


Should you happen to live near St. Louis and you are considering a cochlear implant, I highly recommend visiting Dr. Herzog and also perhaps The Moog Center for Deaf Education. We did not get to visit the Central Institute for the Deaf (CID) but I have talked on the phone with an attorney in a very large law firm who attended CID as a child. He is completely oral, and told me he doesn't even remember being unable to talk. I actually had to ask him "what is your hearing loss?" His answer? "I don't know."

Amazing.

Bloggin' Fun

Drew's Dad suggested that we start a blog after finding out about Drew's hearing loss. I wasn't one for using the Internet for much more than email or on-line shopping, so I really did not think that I had the technical skills to be able to keep up my own blog.

I agreed to try, and with Drew's Dad's help we started Turn On My Ears!, mainly because I felt a blog would be a great way to keep all of our family and friends up-to-date with Drew's progress. I also thought that a blog could be an excellent resource for other parents on the same journey with us, so Drew's Dad and I have provided a lot of medical research and information pertaining to insurance coverage that we have found helpful and hope that others in our shoes have found helpful too.

I did not know when we began the blog how many friends we would make. The list is too long to mention all of them in one post, but these children and their families have been a great source of inspiration for Drew's Dad and I. I am so thankful of their willingness to share their children with us, and I hope that others find Drew as inspirational as we find their children.

Certainly, not even in my wildest dreams, would I have ever thought that our blog would receive recognition. Check out #74 on the Top 100 Mommy Blog's of 2007.

He's On the Move!

Drew has captured his balance enough to start walking! He took a couple of steps on New Year's Day, and since then has taken some each day. We caught this tonight:



Usually Drew will just decide to walk instead of crawl, completely unprompted. In order to get him on video I had to give him a little incentive - he was trying to reach his new tool bench.

Last night I was sitting in our playroom with Drew's Sister watching Aladdin while Drew played. I happened to look over to where Drew was playing, just as he decided to walk out of the play house across the room to the play stroller. He took about ten steps. Again today, he was doing much of the same while playing with Daddy. He's making tremendous progress very quickly. And the most exciting thing is that he is choosing to do it on his own.

Make no mistake, crawling is still his prefered method of transportation, but at least he's giving his two feet a try!

Do You Hear Me Now?

Drew had his six month mapping appointment this week. He was such a good boy for the booth testing and his mapping. All I need is a box of Cheerios and Drew is one happy little boy!

Drew's audiologists had not seen him since November, so they were both thrilled to see how vocal Drew has become. He has all sorts of little words he babbles, in a repetitive, sing-song manner, all the time. I always enjoy seeing people that haven't seen Drew in a while because they help remind me of just how far Drew has come. When you are involved in day to day life it is hard to see just how much progress is made over several months time.

Drew's primary audiologist suggested that we begin his mapping session with a booth hearing test. She wanted to see exactly what Drew was able to hear at the very low and very high frequencies. We know that Drew has been hearing in the 15-20 db range across the mid-range frequencies, however, she felt as though she didn't know how well he was hearing at the very low and very high frequencies. Usually we do the booth testing at the end of the mapping session, when Drew is worn out and not giving us reliable results. It is very important that Drew hear in the 15-20 db range at the highest frequencies so that he is able to hear the /sh/ and /s/ sounds, as those are high frequency speech sounds.

I was very happy today that two audiologists did his booth hearing test. One audiologist administered the sounds and the other looked for responses. This is the best (and should be the only) way to have a booth test for such a young child. The audiologist began with the low frequency sounds at 30 db. Drew alerted and localized immediately. (And he actually enjoyed the dancing Goofy, a different response than before). She then moved down to 20 db, and again he alerted and localized. We were all pleased.

I was sitting in the booth, holding Drew on my lap, thinking about how happy I was that he was not only hearing but localizing the sounds. All sorts of emotions were running through my mind as I sat in that booth. I was trying very hard to be as quite as possible, trying not to talk about all of the exciting thoughts running through my head. Suddenly, the audiologist in the booth with us said, "Good Drew, you hear that." Drew turned and looked at the dancing Goofy. The other audiologist spoke into the booth, "That was at 10 db."

I sat in that booth stunned. Not only was he hearing at 10 db, but my deaf son had just heard a sound that I had not heard! I looked at the audiologist in disbelief. I said, "I didn't hear that." They played the sound again. Again, Drew responded and I never hear it! I really could not believe it. I've had a bit of a cold, so we all figured that I must have a little fluid in my ears that is preventing me from hearing this low frequency at 10 db. But can you believe that Drew heard it? Amazing. I've said it before, but cochlear implants are truly that, amazing!

The audiologists then tested the higher frequency sounds. As they suspected, Drew was not hearing the high frequency sounds nearly as well, only showing a noticeable response at 30 db. Drew's mapping audiologist took those results and turned up the high frequency electrodes enough for him to be in the 15-20 db range. I am confidant that we have a very appropriate map at this point, and Drew's audiologist is as well. This appointment was by far the best mapping session Drew has had.

With the change in his map, we will be working a lot more on making sure that Drew is responding to the /s/ and /sh/ sounds. He does so in therapy, but those are isolated, quite settings. We will be working with these sounds in typical environments. I am confidant that with his new program Drew will be able to start producing these two sounds.