Another Family's Story

Lilyhear is a blog by the family of a beautiful two-year-old in Talahassee, Florida named Lily (picture to the right). When she was two years old it was discovered that she had profound hearing loss in one ear, and a moderate-severe loss in the other.

This family is facing many of the same issues as we are, and I'm going to put a link to thier blog on ours because there is already a wealth of information there.I hope to contact that family so we can collaborate on issues that they have already encountered.

Please visit Lilyhear to read of thier story.

Scammers Abusing Phone Aid for Deaf - Video

This MSNBC video illustrates the lengths that scam artists will go to these days. As if targeting senior citizens or the general public was not disgusting enough, now those in the deaf community are being subjected to these criminals via a service known as IP Relay.

The lastest hotbed for robbery seems to be Nigeria. Undoubtedly you have recieved some of the Nigerian Email Scam emails sent from a wealthy foreigner who just needs your help to move the money out of thier war-torn country. As this video shows, they are now moving beyond the impersonal contact of email to personally contacting would-be victims using a service developed especially for the deaf or non-speaking individuals who are not hearing impaired.

Another article entitled Internet Scammers Target Deaf Community describes more of the same. Their website also includes a similar video.

If this issue concerns you, please contact your local Congressperson and urge them to look into how this needed service can be improved.

No Hearing Aids Today

We were supposed to get Drew's hearing aids today, but his ear molds were not ready. It has been over two weeks since they were fit; at this rate his ear will be too big to use them, and they will have to be redone.

Hearing loss in infants requires a lot of patience, something that does not come easy to me. Everywhere we go, we are told that we will have to wait. We have to wait for his hearing aids. We have to wait to get the implants done. We even have to wait to get his cat scan done to make sure he is a candidate for the implant surgery.

I have been anxiously awaiting his hearing aids, hoping to see some sign that Drew hears even the loudest of noises. But I guess we will have to wait and see.

Now I Know What's Possible

It has been a little over a month since we were told that Drew was born with profound hearing loss. I have learned so much and come to terms with his deafness, but only because I have sought out information and individuals to help me understand my sons condition and the possibilities for him. If I would not have taken the initiative on my own, I don't know where we would be with this - I can't even imagine.

Why couldn't this have been easier? Why wasn't I told, "Congratulations, your child has profound hearing loss, here are the next 10 steps for you to take to ensure your child will hear." No matter how hard I searched, it took a lot of initiative to understand hearing loss and what medical interventions there are for my son.

It has been such a struggle to understand deafness. I had no idea that a child born deaf could talk. Why couldn't someone just tell me that in the first place? Why did I have to go to a school for the deaf over 400 miles from my home to get the hope I needed to carry on? I have gone through such an emotional struggle through all of this, when in reality there is so much hope that a child born with profound hearing loss will hear.

Baby Is Deaf No More - Video

This is a link to a CNN.com video segment that shows a young boy who has just had his cochlear implant "turned on" - and he is now hearing for the first time in his life.

As I watched this with my wife we both shed tears hoping that Drew can one day be like the boy in this video. We want him to hear us say "I love you". We want him to hear his big sister call him "Duu". We want our dog Eddie to wake him up with a bark. We just want him to have all the abilities he needs to do what he wishes in this life.

This video is uplifting for us - and hopefully for anyone else facing the same issues we are.

Interviewing a Cochlear Implant Surgeon

The decision to turn on Drew's hearing was easy. Deciding on a doctor to perform the surgery might be the most difficult. There are so many things to consider when selecting a doctor, including his experience, standard practice of implant surgery and the audiologist/therapist team he works with.

We interviewed our first doctor less than one month after we received the diagnosis. Dr. Daniel Choo of Cincinnati Children's was highly recommended by the audiologist that did the newborn screening at birth and by a friend of mine that worked with him during her doctorate studies at The University of Cincinnati.

We learned that Dr. Choo does believe bilateral implantation provides a child with some benefit, but not enough where he is doing the bilateral implantation at the same time as standard practice. He said that it doubles the length of the surgery and that getting insurance approval is difficult. This does not mean that he is opposed to doing them at the same time, just that it is not his standard choice.

He said that a child, provided that hearing loss is his only disability, will be able to learn to listen and speak with just one implant. The second implant, which he usually does a year later, will help with incidental learning and make his hearing more like his hearing peers. However, you will not see the same listening and speech benefit from the second implant.

The Surgery Alone Is Not Enough

I have learned a lot about hearing loss over these first weeks. The most surprsing to me is that no one piece of the doctor, audiologist, therapist combination is going to secure my childs ability to communicate orally. It will be the combination of all three that will determine his success with his cochlear implant.

An otolaryngologist (specializing in pediatircs) will perform the implant surgery. The CI (cochlear implant) audiologist will assist in the surgery. Once the implant is in, the doctor has completed his piece of the puzzle. It will be the audiologist, who "maps" the implant, and the therapists that determine the success that Drew will have with his implant.

My next challenge will be to select the best team possilble. I know that I will directly impact the success that my son has with his implant through this decision.

Visiting a School for the Deaf

The doctors and audiologists have told us that our son has a profound hearing loss. They have given us an idea of medical things Drew will be going through over the next several months: immediate fittings for bilateral hearing aids, multiple hearing screenings, surgery for cochlear implant(s), aural therapy, speech therapy, year round schooling, to name a few. All of these things are done with the goal of Drew mainstreaming into the school system by kindergarten.

But can all of these things really develop my son's oral communication? I need to have a realistic expectation of what all of this hard work can do. Visiting an oral deaf education school would give me just that.

I visited The Moog School for the Deaf in St. Louis. It gave me hope. Hope, something that I didn't think was possible just a few days earlier. It was so inspiring to see deaf children communicate with each other, their teachers, even me through speech. I saw them count. I saw them read. I saw them listening to my words. They responded to my questions. They were doing things that all of their hearing peers do - laughing, yelling down hallways, screaming in delight, arguing about "who goes first", talking while the teacher was talking. They were normal!
For any parent that has a child with a profound hearing loss, a visit to an oral deaf school will give you the hope you need to carry on. It did for me.

Intitial Research

Ever since Drew's diagnois, my ear has been glued to the phone. So many people to call, so many recommendations about how to tackle this challenge. So many different opinions. I think that the one thing I have learned is that everyone in this field has their own belief on what we should do for Drew and how we should educate him. My husband and I do, too.

I want my son to communicate and live in the hearing world. Why wouldn't I? That is the world that I live in. It is the world that his Dad, sister, grandparents, aunt, and uncle's all live in. Why do I feel like so many people in this field are pushing us toward total communication? If I hear, "any communication is good communication" one more time I might get sick.

I have seen first hand that children with profound hearing loss, with the right intervention through an oral deaf education program, can live in the hearing world. That is my goal. My only goal. His family's only goal. And until someone tells us that there is a medical reason to think otherwise, it is the only thing we are going to focus on.

Introduction

My six week old son, Drew, was born with profound hearing loss. This blog is dedicated to the journey our family takes to "turn on" his hearing.