Quick Update

I am feeling a little better tonight. I decided to take Drew to the pediatrician to see how he was doing with the fluid in his ears.

Drew's doctor found that the fluid in the right ear has completely cleared. He could not see the left ear drum, as Drew has a bit of an ear wax problem. Drew is not running a fever and is in overall good spirits so we know that he does not have an ear infection now, and with the fluid clear in at least one ear we are feeling better.

Final Meeting With the ENT

We had our final appointment with the surgeon today, just under two weeks before Drew's surgery. Dr. Kang wanted to have the meeting to answer any last minutes questions we may have and do one final evaluation on Drew.

During the evaluation Dr. Kang found fluid in Drew's ears. He has had a runny nose for the past few days which we attributed to teething (Drew has cut two teeth in the last week). But Dr. Kang thinks that Drew has a touch of a cold and that is causing fluid to fill in his ears. If the fluid does not clear before surgery it does not really add any risk to the surgery itself, but should the fluid become infected before his surgery it will be postponed.

At this point we are getting really nervous. Nervous that Drew won't be able to have surgery on June 6th because of an ear infection. We are also getting really nervous about possible complications with the surgery. Drew's Dad is really worried about complications that would cause facial paralysis and severing the taste nerve. All are extremely rare, but none the less, worrisome.

We have full confidence in Dr. Kang - he is a very experienced and talented surgeon and is the chief of the department at Children's. We trust him fully, but we are Drew's parents so we worry about every detail. We are trying to make the best decisions for Drew and ultimately surgery is a necessary evil to allow Drew to hear. We'll be a lot better once June 7th is here.

Under Two Weeks Until CI Surgery

Well, the countdown clock that Drew's Mom put to the right of the posts tells me that we are now only 13 days away from Drew's cochlear implant surgery.

I'm happy that it is almost here, but I've been getting progressively more nervous. The surgery itself is not very risky, but I suppose that even if it was a simple procedure of putting tubes in his ears I would be nervous as well. I just want to fast-forward two weeks so that I can know that he is comfortable and that everything is working correctly.

At that point we will have a lot of work ahead of us, but at least we can get started on that as opposed to waiting and waiting. He is now very active, very interested in watching us (and The Wiggles), and I can't wait to pair his obvious communication techniques with sound!

I believe that Drew is going to do great with his implants, and we're going to do whatever we can to help him. I just want to get through the next few weeks so we can begin together.

"The Ends Justify The Means?"

I have mentioned the raging debate over whether cochlear implants are destroying "Deaf culture" or not, and have been trying to learn more myself. I understand that as a hearing person ("hearie"), I cannot fully realize what it is like to be Deaf (Deaf with a capital "D" is often used to refer to deaf persons who do not have an implant, and are not aided, and deaf without a capital "D" is often used to refer to deaf persons who have some degree of hearing either through hearing aids or cochlear implants) - just as I cannot fully see what it would like to be an African-American. However, I just don't agree that cochlear implants are evil, and I don't agree that by having Drew implanted that I am "not accepting him for who he is".

I am somewhat active on All Deaf, a message board which has many different sections, or topics. I originally went there to find out more about the Deaf Culture and others views on cochlear implants, hearing aids, or whatever type of things they are talking about. I have found valuable information and some very helpful people, but a good deal of discussion on the "Hearing Aid and Cochlear Implant Page" centers around the debate over whether children should be implanted, or whether anyone should be implanted. It can get uncomfortable in there!

This thread, titled "Cochlear Implants Causes Injuries and Death By Electrocution" (take a look) was started by a man who supposedly read a study in the Journal of American Medical Association that indicated people were dying from using cochlear implants.

To save anyone from unnecessary worry, he completely made it up. If you read through the thread you'll see that I challenge him, and he admits it was faked. Later he even admits that if parents went to bed worried that their child might die from electrocution that "his work is done". He was actually proud that spreading misinformation may cause parents anguish over whether their child might be killed.

If you are interested in this debate, I suggest you read that thread. I don't want people to think that ALL people who aren't in favor of cochlear implants think that way, but I think there is value in knowing that some people out there will spread any kind of misinformation they can in order to cause fear or uncertainty about the use of cochlear implants.

It's sad, because parents are just trying to do their best for their child, and wading through lies like this make it difficult to figure out what they should do. It is also sad because people like this cast a bad light upon other, non-hearing, non-implant deaf persons and their Deaf Culture, which probably hurts their way of life more than any piece of technology ever will.

Raise Your Hand!

Everyday in the US, approximately 1 in 1,000 newborns is born profoundly deaf, with another 2-3 of 1,000 babies born with partial hearing loss. While pregnant with Drew I worried about so many things, but not once did I ever worry about him being able to hear. Little did I know that it is the most common birth defect in the United States.

My life has been forever changed as a result of congenital hearing loss, but I have taken action to not let this hearing loss impact Drew's ability to communicate in the hearing world. There are amazing technological advances that people of all ages with hearing loss can take advantage of, but only if their hearing loss is properly diagnosed and treated.

May is Better Speech and Hearing Month and I recently learned of an awareness effort called "Raise Your Hand". If you have ever taken a hearing test yourself, you know that when you hear the tones in the headphones you raise your hand. If you or someone you know is dealing with the far reaching effects of a hearing loss, "Raise Your Hand" for better hearing and help do something about it!

Activation Scheduled

Drew's activation of his bilateral cochlear implants has been scheduled for June 28! I think I might need another countdown clock...the day he will start with his hearing journey.

Drew and his Gam-ma now have a special day to share with each other. We will always celebrate Gam-ma's birthday and Drew's hearing anniversay on the same day. Can't wait for Gam-ma's (oh, maybe I shouldn't share the age?) birthday this year! What a wonderful day June 28th will be when Drew hears his Dad and I tell him we love him for the first time.

Looking forward to June 28th. Happy Hearing, Drew!

Please

Read this. Then you will understand why I feel the need to comment here.

. . .

Drew's Dad stumbled upon this blog post today about "Turn On My Ears" and he made the mistake tonight of letting me read it. I can not ignore this blog post, and feel the need to comment here.

I can imagine how "startled" I would feel if I simply read a few posts of someones blog and then proceeded to make assumptions and assertions from simply a few pieces of information.

First, if you would like to know where we came up with the name "Turn On My Ears," you can read this post. I personally like the name, as we are going to have the opportunity to take our perfect little boy and turn on his hearing, a moment that we will be able to witness (and video tape) for the first time!

Secondly, we started this blog when Drew was a little over six weeks old in November, 2006. He is, as I write this post, a little over seven months old, awaiting his simultaneous cochlear implant surgery. He will be eight months at the time of surgery and nine months when he is "turned on" for the first time. He will be eleven months old on August 24, 2007.

If you would like to know how a cochlear implant works (note it is cochlear implant, not cochlea implant), then you can read this.

Furthermore, we have taken all of the advice and education we have received from the specialists that are working with Drew. As we have learned from our teacher of the deaf through the Regional Infant Hearing Program, our therapists through Auditory Oral Children's Center and Columbus Children's Hospital, there is a lot of research that shows sign language is a great bridge to oral communication if established at birth. If you are interested in the communication, a.k.a. sign language, we have established to date with Drew, then read this.

Also, we have been quite clear and have understood from the very beginning that the cochlear implants alone will not allow Drew to communicate orally. It will take years of hard work and therapy to ensure that Drew will communicate orally and mainstream with his hearing peers. You can read posts on this subject here, here and here.

More than anything, Drew's Dad and I have made the decision to have Drew join the hearing world. We are his parents and we have to make decisions for both of our children that will give them the best opportunity to be all they can in this lifetime. We want him to hear us say "I love you". We want him to hear his big sister call him "Dew". We want our dog Eddie to wake him up with a bark. But more than anything we just want him to have all the abilities he needs to do what he wishes in this life. And "Turning On His Ears" will do that.

Auditory Verbal Therapy

With Drew's surgery now scheduled and a much easier than anticipated insurance approval process behind us, I have now begun to seek out therapists that will help our hearing Drew learn to identify and listen to sound and eventually speak!

Right after his surgery was scheduled I began to get really nervous about the surgery itself. I think that focusing on the therapy has really helped me to keep the butterflies about the surgery itself buried, at least for now. In my efforts to get to the point of implantation I knew surgery was inevitable, but that doesn't make it any easier. I want my son to hear; to do so requires surgery. Do I wish we didn't have to go through this? Certainly, but I know on the other side of June 6th there is a world full of opportunity that will open for Drew with his cochlear implants.

We are taking a strictly oral approach for Drew's therapy and intervention. This leaves us with two choices of therapy: Auditory Oral and Auditory Verbal Therapy. We have decided to utilize the principles of the Auditory Verbal Therapy (AVT). The main reasons we have decided on this therapy are:

• AVT focuses on having children grow up in typical listening and learning environments, enabling them to become independent, participating, and contributing members of the mainstream.
• AVT is a family entered approach where parents are active participants in the therapy.
• AVT relies on building auditory skills without the ability to lipread, stressing the normal patterns of language development. These children gain spoken language skills equal to their hearing peers, have normal voice inflection and tone and learn the rules that guide spoken language.

While we will certainly incorporate pieces of the Auditory Oral approach, primarily the natural gesturing and lipreading all hearing people do in everyday setting. However, during Drew's therapy session there will be a focus on gaining information auditorally, instead of through auditory access and visual cues.

In addition to two hours of therapy a week, there is a toddler program at a new Oral Deaf Education School in Dublin. We will enroll Drew in the Parent-Toddler program one half day a week in January at the Auditory Oral Children's Center. This school utilizes the principles of AVT in their therapy sessions, but allows natural gestures in the classroom setting. This is a new program, showing the commitment within the cochlear implant team in Columbus to develop better resources for children with hearing loss.