Drew Can Hear!

We're seeing new signs each day that Drew really is able to hear. We turned Drew up to P3 (his third program, meaning the loudest yet) and he responded to Daddy's voice! It was truly amazing, and had we not been worried that it startled Drew, we may have cried ourselves!

We are testing Drew to see what he can hear all the time! He was looking away from Daddy during breakfast this morning and turned toward the knocking sound Daddy made on the kitchen table. Amazing! Only a few days ago he would not have responded. And to think that we take our hearing for granted.

Here are a few pictures of Drew:

Activation Day...Waiting for his appointment.

Our little bionic boy. This picture also shows the pockets that have been sewn on Drew's clothing to hold his Body Worn Processors. (I hope you can see it). I love the little pockets. It is so easy to access his processors to make sure they are working correctly, plus they are quite stylish. Just wait until you see his Spiderman pockets! Drew is a cool little boy.

Watch Drew Hear!

Here are a few videos of Drew hearing his very first sounds after "Turning On His Ears". We hope you enjoy them!

1. Here Drew is turned on for the first time. He looks a bit surprised, but he didn't seem scared.

2. In this clip, Drew hears his dad's voice for the first time and freezes for a moment. He gets frightened by the audiologist's loud voice, and Drew's mom finally gets to tell him "I love you."

3. This is the best video so far, because you can see Drew startle at the drum. He then starts breathing very hard because he is hearing sounds that he has never heard before! A special thanks to Drew's sister who asks him "hear that Drew?" while pointing at her ear.

Activation Day

Drew's hearing was turned on today! It was a rather anti-climatic moment, as we we hoping for a glorious, "Hi, Mommy, I can hear" moment. Obviously that didn't happen, but we did get a clear indication that he can hear. (Video coming soon!)

Mapping is a very complicated and difficult process to understand. They tested his equipment at surgery and had a basic map from that. Then today they updated three electrodes on each ear to current power levels today. I think this means that three electrodes are mapped for Drew's ear today, where as the remaining 19 are mapped off of the results from surgery? Anyone with more information and understanding, please leave a comment!

After turning on all of the equipment, the audiologist tested him in the sound booth, just to make sure that he would not have any ill response to sound (facial twitching, crying, etc.). He did very well at 70 db.

We left the appointment with four different maps. We start with P1 today and will progress through P4 in the next few days. Each program is just a little bit louder than the last. Right now he is hearing around 65-70 db, not in the speech banana, but he is picking up environmental sounds. As we continue to turn him up he should be in the speech banana after his next mapping, July 10th.

Mapping A Cochlear Implant

For nine months now Drew's Mom and I have been researching hearing loss, sign language and cochlear implants. We've learned a great deal, but we have had difficulty finding information on one particular part of Drew's adventure.

How do they set, adjust, or "map" the cochlear implant once it is functioning to let someone hear?

I found this article entitled "Mapping a Cochlear Implant" and found it helpful to understand how exactly they get it to work. It is also timely, as we will be meeting Cyndi Warner on Thursday to have Drew's bilateral cochlear implants activated for the very first time!

Sicko

I am not a big fan of Michael Moore, but I did learn from a fellow parent on CI Circle today that his new film, Sicko, revolving around the problems with the American Health Insurance system, contains a rather large story about a four year old boy denied coverage for his bilateral implant. The good news is that after Moore became involved, the child did get approval for his second implant.

I previously had no intentions of seeing this movie, but I think it's worth a look now. You can view the trailer, although there is no preview of the cochlear implant story.

Don't Forget

We want to remind you of the 25% budget cut to the Regional Infant Hearing Program. The RIHP's are among many services of The Ohio Department of Health and Help Me Grow. The ODH has lost federal grant money as well as funding from the State, causing financial cuts to all of its programs and resources, including early intervention services. Without the necessary funding, the ODH will not be able to fund its programs that are vital in the lives of so many, including Drew.

We wrote Governor Ted Strickland regarding the budget cut, asking him to secure the necessary funding the ODH needs in order to offer its programs. In response, he sent a form letter. We weren't expecting any more than that, but we were not expecting him to send the letter on to the ODH (like they can secure funding with their budget cuts). Maybe we were not clear in our letter: the Governor needs to balance the state budget in order to secure the funds the ODH needs to supplement all of its programs.

I have written a second letter to the Governor. I ask that you continue to contact Governor Ted Strickland, asking him to secure the funds needed to run the RIHP. Early Identification and Intervention makes all of the difference in the life of a child with hearing loss, and the citizens of Ohio need it to be there for them at full strength.

Turn Up the Volume!

I mentioned in my recent post, Observations, that it appeared that surgery had affected Drew's "talking". Well, it's back! Apparently Drew's throat must have been sore from the intubation as he is now my loud "talker" once again.

In some ways the silence was nice. But in others, I did miss it. I have actually become quite used to the loud talking, so it doesn't bother me (anymore). I have tried so hard to talk with him and keep him communicating with me that I am actually happy the loud, ear piercing screech's are back. Besides, he is so cute when he is talking and laughing with me that it doesn't matter how loud his talking is, I just want those moments to last forever.

By the way, how many days until June 28th? The clock won't tick fast enough...

Bandages Off

Drew's Incision

Sitting Up

Drew's Sister Playing "Piggies"

I took Drew to have his bandages removed today. Dr. Kang removed them fairly quickly and said that Drew is healing nicely. It was a very fast - my kind of appointment.

As a side note, I have to say how thankful I am for Dr. Kang. He has given Drew and our family a gift that we will never be able to repay. Moreover, I think Dr. Kang genuinely cares about Drew's ability to communicate with the hearing world. I love the way that he casually talks with Drew. He will walk into the room and sweep Drew out of my hands and say, "How are you doing today, buddy? Are you ready to hear? We're expecting big things from you, young man!" It is so refreshing to have a doctor that genuinely cares for his patients. We knew from our research that we were working with a very skilled doctor but we got so much more! I am so thankful that he is in Columbus. We are very blessed to have him leading the cochlear implant program here.

I have to imagine that Drew feels a lot better with his bandage off and that his incisions will heal much faster now that they are exposed to some fresh air. The incisions are actually smaller than what I was expecting; I don't know why but I thought they would be larger, but I did. Also, I was amazed at how close the magnet is placed to the incision. And both look to be lined up quite nicely. (For all those that know my type A personality, you had to know I would want both coils lined up perfectly on his little head!)

I included two pictures of Drew sitting up because I am amazed at how much better his balance is since his surgery. Seriously. Amazed. He is actually sitting up! Tonight I had him sitting on the floor for 30 minutes by himself! He was looking around, watching television, chewing on his toys, thoroughly enjoying life. I am 100% convinced that the surgery made his balance better. Also, he is making attempts to crawl like never before, and when he is unsuccessful he gets really upset! My little boy will be crawling around here before too long.

We are so thankful for the way Drew has recovered from this surgery. We thank you for your prayers for Drew.

Now, is it June 28th yet?

Observations

I have noticed a few changes in Drew since his surgery. I don't know if they are a coincidence or not, but none the less, noteworthy.

First, Drew has not done his back arch, scoot around on the top-of-his-head maneuver for two whole days now, a maneuver very typical of deaf babies. When holding him, he does not arch his back, nearly throwing himself from your arms. Maybe he still isn't feeling 100% and this will return, but he has never gone this long without arching his back.

Secondly, his balance seems to be a lot better. He was sitting up prior to surgery, but not all that well. The back arching was hurting his ability to sit up because he would throw himself backward to arch his back. With that, it seems like he is really sitting up. Drew's Dad and I were both amazed last night at how long he sat on the floor, and when he would tip from side to side he was able to correct back to the center. He really has not been able to do that before. Affects to Drew's balance system were a major concern to us going into the surgery, especially since we elected have him implanted simultaneously. While our research is in no way scientific, I think in Drew's case the surgery seems to have only helped his balance.

Third, he has not let out the typical Drew db screams. He would talk to us at db's so loud we thought he might give us hearing loss at times. But he hasn't done that. I don't know if it is because his throat is still sore from the intubation, or if maybe the loss of all residual hearing has left him unable to hear those sounds so he is not making them?

I think it will be interesting to see what other changes we notice in him in the coming weeks and if these things change as he continues to recover from his surgery.

Conversation With My Daughter

Drew's sister returned home today. She stayed at Gam-ma's yesterday while we were with Drew during his surgery. She had a fun time at Gam-ma's house. She went with Gam-ma and Aunt Angie to the zoo. She had a blast!

When she got home today she immediately noticed the bandages on Drew's head. She was a little scared at first, so I explained that his ears had a "boo-boo." That's the best two-year-old term I know. I told her that this would allow Drew to hear in just a couple of weeks. She looked at me, shrugged her shoulders and went on with playing.

Later she looked at Drew, pointed to his bandages and said, "Boo-boo." I nodded. Then she said, "he hear."

"That's right," I said, in my typical motherly intonation. "What would you like to tell Drew when he can hear?" I asked.

She paused. I had really thrown her a curve ball. What would she like to tell Drew about? She gave me one of those, "I'm thinking" looks, drawing her fore finger to her mouth. "Santa," she said in the cheeriest of voices. "Toys and presents." She had such a huge smile on her face, like she is really excited to tell Drew all about Santa Claus!

There you have it. Drew is going to learn all about Santa, toys and presents from his sister as soon as he can hear!

Pictures

The perfect patient.

In recovery.

The next morning.

Surgery Complete - We're Home

We are now home. I just fed Drew and put him to bed - hopefully for the night, but we will see.

We arrived at the hospital at 8:30 AM this morning for the pre-op work. We then waited until 11:40 AM, Drew's surgery time. He was such a wonderful patient! Despite being hungry (and tired) he managed to remain a happy little boy. He was even flirting with the nurses and showing off his cute laughter!

The nurses took him to the operating room around 11:15 AM. It was a lot harder to let him go than what we thought it would be. We tried to each lunch shortly thereafter, but neither Drew's Dad nor I had much of an appetite.

The surgery lasted about 3 1/2 hours. Dr. Kang was very pleased with the insertion of each of the electrode arrays and there were no surgical complications. Drew had a bit of fluid in his right ear but nothing that complicated the surgery. In addition, Drew's audiologist tested both arrays and they are working beautifully! We are very happy with the results and look forward to activation day on June 28th.

It took Drew about one hour to wake up after surgery. He woke up fairly happy and VERY hungry! He ate four ounces of pedialyte in just a few short minutes. I could tell that he was not quite himself; he didn't want to play with his toys very much and he just laid in my arms, very different from my wiggle worm. Since he was able to keep his food down the nurse released him from the hospital a little before 6 PM.

We would like to thank each of your for your thoughts and prayers for Drew. They certainly worked!

We're Headed to Italy!

It's true! Our trip to Italy starts first thing tomorrow morning. There was a time about seven months ago when I thought I might never get to take Drew, but after months of planning we are finally ready to go!

We aren't going to arrive there tomorrow. There will likely be delays, flat tires, pit stops, and even lay overs. Some of these may be longer and more frustrating than what we think we can endure. We may even ask ourselves, "Are we there yet?" But I am looking forward to the journey just as much as I am looking forward to the destination. When you think about it, it is actually very special that we will get to visit so many places with Drew along the way. Not many people bound for Italy get to stop as many places as we will and relish in those moments. We are going to have so many that will shape the person Drew will become. I can not wait to watch the transformation, from beautiful Deaf baby to a hearing, speaking, communicating deaf child.

We are nervous for the beginning. Once we get through this I think we can handle the rest. We will let you know how our trip begins as soon as we can tomorrow.

Ciao!

Thanks to Drew's Mom

I was sitting alone on the hospital couch which had served as my bed the night before. I think I was using my laptop, or reading - I don't recall. Drew's Mom was enjoying her first shower after becoming a Mom to her little boy.

A soft 'knock' pierced the silence, and I rose and strode across the linoleum floor gently. I slowly swung the door open and saw a girl (now a grown woman) that sat next to me while we practiced our first cursive letters in first grade. My old first grade classmate was now an audiologist working for the hospital.

We exchanged "hellos" and she asked where Drew's Mom was. I explained that she had just entered the shower and she said she'd come back in a bit. However, at my gentle insistence (don't want to bother mom with this), we sat down on the couch I had just vacated to go over the papers she held in her hand.

I glanced at the front page and saw different graphs with lines on them, and medical jargon. It was Drew's newborn hearing screening paperwork, indicating the results of his ABR and OAE tests. He had not passed. My friend left the room and I sat there alone. Alone in the silent room, I wondered what the test really meant, and how it would affect my son's life. I had no answers.

Luckily for me (and Drew), I was not really alone. Soon after, my wife emerged from the shower.

From the time she sat down on that hospital couch and I told her what I had learned, she has taken constant action to help all of us find information of deafness, information on genetic defects, seek out and meet medical and educational professionals, share that information with others, set appointments, attend appointments, set appointments to set more appointments which will lead to further appointments, (and attend all those appointments!) and so on.

From the beginning, when we walked into a meeting, we were prepared. We rode in there with a list of specific questions that both of us carefully thought about, an attitude that said "we will only accept the best", and the 15 pound maroon binder which Drew's Mom tabbed and organized. That binder holds all of Drew's test results, medical information, lists of prior questions, and all other material that we felt anyone might need to know about Drew to help us make the proper decisions. We usually got a laugh from nurses or doctors because they'd never seen such preparedness.

We didn't go in to these meetings asking "What's an implant do?", we asked "Is there any indication of whether Drew's deafness was caused by the mutated Connexin-26 gene or if it was caused by the mitochondrial abnormality." We didn't ask "Will Drew ever hear?", we asked "Now I understand that much of the speech banana is at a lower level of about 30 decibels. If Drew has a bilateral loss of approximately 95 decibels, where exactly will his CI-aided hearing fall?" At our last meeting with Dr. Kang, he didn't even go into a long speech about the surgery. He knew we had researched everything and just let us ask specific questions before he talked for a short while.

I can't detail here all the work that Drew's Mom has put in over the last 8+ months, but I do want people to know that it made a difference. I know I couldn't have gotten to this point with all the knowledge and comfort that I have, if I had to do it alone.

It's no stretch to say that Drew is going to have his cochlear implant surgery this Wednesday, Thanks to Drew's Mom.