AG Bell Ohio - Annual Meeting

The Ohio Chapter of the Alexander Graham Bell Association for the Deaf and Hard of Hearing will hold its annual meeting in Columbus, Ohio on Saturday, October 27th. The keynote speaker is Donald M. Goldberg, Ph.D., a very well known and published Cert. AVT and Co-director of the Hearing Implant Program at the Cleveland Clinic. You will not want to miss this event!

In addition to Dr. Goldberg's presentation, the afternoon will offer two panels. A panel of professionals will answer questions you have always wanted to have answered! In attendance will be an otolaryngologist (CI surgeon), audiologist, teacher from an oral school, and a developmental/behavioral doctor. In addition, there will be a student panel discussing what life is like in the mainstream with a hearing loss.

I love the AG Bell Association! Their mission is to promote spoken language for the deaf and hard of hearing and advocate for listening, learning, talking and living independently with hearing loss. I don't think that this organization could have defined my vision for Drew any more clearly! Their current "Hear from the start. Talk for a lifetime," campaign is designed to help children with hearing loss with early identification, intervention and appropriate amplification. It is a truly wonderful organization.

I have become actively involved in the Ohio Chapter and am helping to plan the annual meeting. I have really enjoyed working with other AG Bell members throughout the state planning this meeting. So, I expect to see many of my friends, in life and on line, at the annual meeting in October! If you have any questions about the annual meeting or would like to know how to register to attend, please leave a comment and I will contact you with registration information.

Booth Test

Oh, how I am getting used to "the booth". Four grey, padded walls where all sound in the world is blocked out and you can hear every little noise or breath you take. I think in some ways Drew is getting used to "the booth" too. A little too used to it, to the point he just ignores everything that happens in it!

Drew immediately alerted to his name at 35 dB. Then the audiologist attempted some tone sounds. Drew did not like them at all and refused (and I mean refused) to alert to them. He kept his eyes intently focused on his toys and looked like he was straining not to show any reaction to the sound. The face he was making was so funny!

The audiologist decided that maybe Drew needed a little incentive for responding to sound, so she decided to say his name again. When Drew immediately alerted, she rewarded him by setting off a dancing elephant that lights up and spins round and round. Drew hated it! Seriously HATED it. He started crying his "Mom, I am super scared cry," turned around and climbed up me as fast as he could, hanging on for dear life. It took me several minutes to calm him down and at that point he had no interest in the remaining testing.

The audiologist felt like Drew was definitley hearing at 40 dB's across all frequencies, but with him being so uncooperative we really don't know exactly what he is hearing with his current program from a technical standpoint. Drew's Dad and I, however, feel very confidant that Drew is hearing very well. He responds so well to environmental and speech sounds on a daily basis. Just tonight Drew consistently responded to the sound of a door about 15 feet away being opened and closed. I don't think seeing Drew respond to sounds will ever become "habit". I think these moments will remain a special reminder of just how blessed we are that we were able to turn on Drew's ears.

CI Cookout

We attended the annual Cochlear Implant Cookout held by Children's Hospital yesterday. It was a great opportunity to meet other children with cochlear implants and their families. Drew and his sister had a great time despite the very hot weather. Drew's Dad and I had fun talking with parents, both ones we knew prior to the cookout and new ones we met yesterday. We also had an opportunity to see Drew's ENT, the first time since his activation.

Drew with his cochlear implant surgeon Dr. (a.k.a. chef) Richard Kang at the cookout.

I met a mother of a baby recently diagnosed with profound hearing loss. Her story sounds very similar to ours and I look forward to having lunch with her in the coming weeks. I have developed such wonderful relationships with so many other mothers of children with hearing loss. We all have an immediate connection that is very difficult to explain, but these parents understand what it is like to have a child with hearing loss (much like the connection I have with my Internet friends, too!).

I met the mother of a teenager who received her cochlear implant when she was three years old. At the time her child was born there was a mandate by the FDA that the child try hearing aids for two years before a cochlear implant be considered! I can not imagine having Drew wear hearing aids for two years. He was getting no benefit from them and I was frustrated that he had to wear them for eight months. The great news is that the teen is doing amazing with her implant. She participated in the conversation we were having openly and her speech was very good. She is a true CI success story and an inspiration for parents like me just beginning this journey.

It was a very nice day and I am glad that we were able to attend. It will be nice to see these families yearly and see how well the kids are doing with their cochlear implants.

How Lucky is Drew?

He's pretty lucky. It's true: Drew is blessed with the best big sister a little boy could ask for! She talks to him constantly (actually, she talks constantly to anyone that will listen, or if no one is listening, she'll talk to herself!). She loves to "help" put his "C.I." on each morning and after his naps. She will practice the ling sounds with him. "Ahhh." "Eeee." "Oooo." It is just precious. As this journey continues on, Drew's Sister is going to be a large part of each of Drew's successes.

She is only 2 years old, but her language is amazing! Just tonight she put 10 words in a sentence, "Me dance to mucus (a.k.a. music) while Daddy get me tiny water." The other night she said, "Me no like peas very much Daddy!" She has some grammatical issues, but hey, she's only two!

Here is Drew's Sister singing her "A. B. C.'s":



Here is Drew's Sister counting to 10:

Responding to His Name

Drew is continuing to amaze us everyday. This journey to hearing is so exciting. We have turned Drew up to P2 which is an ADRO program. Drew's audiologist plans on using this ADRO setting for all future maps, as it really helps children by equalizing both loud and soft sounds to a comfortable listening level.

Drew continues to have multiple therapies weekly (a big thanks to Gamma who chauffeur's him around Columbus to all of his appointments while Mom and Dad are off at work!). During therapy it has been noted that Drew is responding nearly 100% of the time to environmental sounds of all decibels. He's even responding about 90% of the time to speech sounds. Truly amazing.

Here is some recent video. Note the loud environment - clearly not the best listening environment, but he's doing well. Also, note the ignoring he does after he responds the first time. Looks like he is learning from his sister.

Drew's Therapy Status

If you've been following along with us during the last several months, you know that even though Drew now has his bilateral cochlear implants, we all have much work to do. Right now, his work includes several therapy sessions per month with professionals, and many with the "I'm not an AVT, but I play one on TV" Drew's Mom and Dad.

Earlier this week I took Drew to his therapy session and arrived almost 30 minutes late due to idiotic reliance on Mapquest Driving Directions. Usually they're perfect, but every once in a while you end up in the middle of nowhere.

We could not do as much practice as we would have liked, but Drew did respond to all the "Ling" sounds at close range and was localizing where the sounds were coming from (i.e. turning to the right or left depending on where the therapist was speaking from).

One interesting thing that I learned was that hearing develops spatially from side to side before above and below. For example, when the therapist rang bells from below a table where Drew could not see them, he made an expression which seemed to say "I hear something, but I have no earthly idea where it is!". When the bells were rung above his head he indicated the same confusion. Meanwhile, ringing them to his left or right resulted in an immediate swivel of the head toward the sound.

I feel he is doing very well at this point. I don't really know how to judge whether the map is finely tuned or not, but there is definite indication that he does get a great deal of hearing benefit from the implants, and we look forward to more leaps and bounds in the coming weeks.