Meet Drew, the youngest child in Ohio to ever receive simultaneous, bilateral cochlear implants
Written by admin2 on April 3rd, 2009Filed under: Themes, Deaf Jam, Irked Videos
Drew was born in September 2006 with profound hearing loss in both ears, which means he is deaf. In the summer of 2007, when he was 8½ months old, he became the youngest child in Ohio to receive simultaneous, bilateral cochlear implants. TurnOnMyEars.blogspot.com, written by Drew’s mom and dad, is a record of their efforts to “turn on” Drew’s ears and educate him with an auditory verbal philosophy.
Here are some selected videos and truncated passages from a truly remarkable blog:
Written November 13th, 2006:
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 uncles 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.
Written on November 28th, 2006:
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.
Written on December 11th, 2006:
Drew received his hearing aids this week. Through the Columbus Hearing Impaired Program we were able to obtain free loaner hearing aids. This is quite a financial relief, since the hearing aids for his degree of loss can cost up to $7000. We will only be using them until he has his cochlear implant surgery in about nine months, so we are very fortunate that we did not have to purchase his hearing aids.
Written on December 19th, 2006:
It has been a difficult day. While I am relieved in some ways to know the reason for Drew’s hearing loss, it has been emotionally draining trying to learn about genetic hearing loss and who in my family might be at risk. Mostly I am concerned about the mitochondria abnormality found in Drew. I have been doing a lot of research and believe that this is an X-Linked abnormality.
Written on December 22nd, 2006:
I wish I would have paid more attention in my 10th grade biology class, or that I would not have avoided taking biology in college like I did. The genetic studies would really come in handy now, as I struggle to understand Drew’s genetic results for his hearing loss. I understand the connexin abnormality. I carry one abnormal copy of connexin 26, passed to me from one of my parents. My husband carries one abnormal copy of his connexin 26 gene, passed to him from one of his parents. In Drew these two abnormal copies met up, causing his hearing loss. What I cannot understand—and what I am most worried about—is the mitochondrial abnormality that I passed to Drew. This is a very rare genetic disorder, so I contacted Dr.Choo with several questions regarding this abnormality, primarily because of the conflicting information I am finding in my Internet research.
Written on January 23rd, 2007:
Drew started laughing today. Drew’s Dad and I have suspected for several days that he is laughing while laying in front of his conversation mirror, but we weren’t quite sure. Well, Gamma and Uncle Ran-Ran confirmed that Drew was in fact laughing at some rather silly faces Uncle Ran-Ran was making today! It is the cutest laugh you will ever hear. It is as if it comes up from his belly and finally produces sound. What a wonderful sound! It’s pretty amazing to me that he has never heard anyone laugh, but knows how to make the sound. It must be instinctive. Laughter. A beautiful sound.
Written on March 14, 2007:
In all this excitement and concern over Drew’s hearing, sometimes I get worried that someone is getting neglected. That someone is our two-year-old daughter. The books say that bringing home a new child can be traumatic to their older sibling(s), and so naturally we were a bit concerned. It ended up that Drew is nothing more than her new best friend, and I can’t recall even a moment of tension between them (yet). Nevertheless, simply because we are so busy scheduling, preparing for, re-scheduling, driving to—and from—Drew’s appointments, it has to be taking some kind of toll on Drew’s sister. . . . We aren’t writing about her much here, so I thought I’d just point out how important she is to all of this for us and for Drew.
Written on March 28th, 2007:
In our journey with Drew there are going to be times where we experience a set-back. I am thankful that I have such a wonderful network of parents to lean on in every situation. I recently learned that Jack, one little CI boy from Illinois, had a device failure of his Advanced Bionics implant. He was implanted three years ago. Please keep him and his family in your thoughts and prayers as they go through this difficult time of an ex-implant and re-implant.
Written on April 23rd, 2007:
I have experienced some of the greatest challenges of my life over the last seven months. There were days after Drew was diagnosed that I did not want to get out of bed and face his deafness each morning. Luckily my family and friends were there to support me, and finally I realized that staying in bed, crying all day would not change Drew’s diagnosis. So I made a decision: I would get of bed each day. And I would get myself dressed. And I would learn as much as I could about deafness, cochlear implants and oral education. And that’s what I have done. Today I feel like I have reaped my first reward of hard work and dedication: Dr. Kang called today with a date for Drew’s surgery.
Written on May 18th, 2007:
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 [be] 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 I am “not accepting him for who he is.”
Written on May 24th, 2007:
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.
Written on June 6th, 2007:
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 3½ hours. Dr. Kang was very pleased with the insertion of each of the electrode arrays and there were no surgical complications.
Written on June 28th, 2007:
Drew’s hearing was turned on today! It was a rather anticlimactic moment, as we were 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!)
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Here are a few videos of Drew hearing his very first sounds after “Turning On His Ears”:
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.
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Written on June 30th, 2007:
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!
(08/08/2007) Video footage of Drew responding to mom calling his name:
Written on September 2nd, 2007:
Drew had a milestone today. Drew’s first consonant, drum roll please, is /g/. We were talking to him after his nap this afternoon when he broke out the /g/ sound. At first we weren’t sure, but he repeated it several times for us. Drew even had a sing song conversation with Daddy using the /g/ sound over and over. Drew’s Dad would say “ahhh gooo” and then Drew would repeat it. Then Drew’s Dad would say “ahhh” and Drew would say “goo”. We had so much fun this afternoon listening to him repeat the sound over and over. Drew’s language now includes the following sounds: /ah/, /m/, /e/ and now /g/. Not bad for a baby with a hearing age of a two-month-old!
(09/13/2007) Video footage of Drew growling like a lion:
Written on October 10th, 2007:
We’ve had our first dilemma… Often CI children wear their body worn processors in a pocket(s) attached to the child’s clothing. So, what do you do when your CI child spills a cup of milk all down his shirt less than 20 minutes before bed-time?
Written on December 29th, 2007:
We’ve all been sick with the flu. The nasty little bug caught Drew and he has spread it to the entire—ENTIRE—family, including the Grandparents, Aunts, Uncles and Cousins that spent Christmas with us. I’m not sure if anyone will come back next year! In the midst of the sickness, Drew’s six month hearing anniversary escaped me. Has it really been six months? Some days it seems just like yesterday that he was activated, in others it seems like he has always been able to hear, as the most early days of Drew’s life are sadly fading from my memory.
Written on January 11, 2008:
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.
Written on January 30th, 2008:
…I was explaining all about Drew’s cochlear implants and our friends were fascinated by the technology and how well Drew is doing. Just as I was explaining that Drew’s Dad and I carry a recessive gene for hearing loss the friend of a friend says, while turning his ear to the conversation, “What’s that, I can’t hear you. I’m deaf.” It took every ounce of me not to punch him in the face. I looked at him and said, “I find your comment to be very, and I mean very, offensive.” Then I turned and tried to continue my conversation with true friends, but I was unable to even remember what I was talking about.
Written on March 25th, 2008:
Lance Allred was just signed to a 10-day contract by the NBA’s Cleveland Cavaliers. While a fantastic accomplishment in itself, his stint in the NBA is even more spectacular considering he is deaf.
Written on April 23rd, 2008:
I’m not sure that there will ever be a day where I take Drew’s hearing for granted. Thank you, Drew, for allowing me to have an appreciation for something I used to (and so many others) take for granted.
(09/13/2007) Video footage of Drew speaking and singing 10 months post activation:
Written on June 10th, 2008:
I never thought life would feel this normal. When you’re told that your child is deaf and will need a cochlear implant, followed by years of therapy in order to maximize their hearing, you have this picture that your entire life will be spent in a therapist’s office as they work to catch the child up. And while it is important to have the formal therapy, we have found that there are plenty of language opportunities in our everyday activities. It is great because it allows Drew to learn to listen and talk while enjoying all of the things that we enjoy doing as a family.
Written on June 28th, 2008:
Happy First Hearing Birthday Drew! This year has been more than I ever hoped for. It has been more than I ever dreamed or imagined. My little boy can hear. My little boy can talk. It truly is a miracle, and I give thanks for the gift of hearing each day.
Written on July 14th, 2008:
…Drew’s Dad yelled at me to call 911 while he kept Drew isolated on the floor, laying on his side. The seizure lasted about two minutes, with Drew’s arms and legs convulsing, and his lips turning blue. Before the paramedics arrived, Drew came out of the seizure, and by the time they were in our house Drew was grunting and looking very confused, which the paramedics took as a positive sign. Eventually Drew started babbling a little bit and seemed calmed by my voice. It was quite scary, as he would not focus on me as I was speaking to him, just staring at the ceiling. The ambulance took Drew and I to Children’s Hospital for assessment. Drew was diagnosed with a febrile seizure and we were dismissed after several hours of observation. Apparently this is a fairly common cause of seizures, and is not something that should have any affect on his development. There is a slight risk of future seizures when Drew has a fever, and usually the seizure is a sign of an oncoming fever, so there is little that can be done to prevent one. Drew’s Dad and I did not sleep well last night, constantly checking on Drew to make sure his fever wasn’t climbing again.
Written on July 21st, 2008:
All is well on the home front. Drew is rash and virus free, and finally has his appetite back. He’s back to his usual self, full of energy. He was even able to celebrate PaPa’s birthday this weekend! I ran into the EMTs that were at our house when we called 911 last Sunday night while doing the grocery shopping on Saturday. (I was sad that Drew was at home napping, and that they couldn’t see him in action.) They were so nice to us that night, so it was nice to thank them for their help and support.
Written on August 20th, 2008:
While Drew was watching one of his movies, we heard him sing “Twinkle, Twinkle Little Star.” It was so sweet to listen to his little voice sing. He was able to say several of the words clearly and was even singing somewhat in tune. It was a wonderful moment as we realize just how special it is that he can even hear music, let alone sing along with it. I don’t think Drew’s Dad and I have ever smiled more on such a long car ride. It was an excellent reminder of just how far Drew’s language has come in this past year. We are forever grateful for this wonderful technology!
Written on September 10th, 2008:
Drew started preschool today! Drew’s Dad and I decided to enroll Drew in a mainstream preschool program one day a week at a local church. It is the same program that Drew’s Sister has been attending for the previous two years. Drew has two teachers and there are five other children in the classroom. . . . This is the first time Drew’s preschool has had a hearing impaired child in their classroom. They have been wonderful about learning about hearing loss, Drew’s cochlear implants and setting up their classroom as a listening environment.
Written on October 28th, 2008:
It’s been a long time coming, but Drew’s first ear infection has popped up. Yesterday he was pointing to his ear saying “Ow, ear”. He continued to say this in the morning, and so after a trip to the pediatrician, we found Drew has his first ear infection. Our cochlear implant surgeon had told us before Drew’s surgery that should he ever have an ear infection, to contact him immediately to head off any problems the infection could cause with Drew’s implants. It turns out that our surgeon wants to treat the infection more aggressively than the pediatrician would (for good reason). We got a higher-powered antibiotic and it was prescribed for twice as long.
Written on November 26th, 2008:
On this Thanksgiving, I once again find myself overwhelmed with things for which I am thankful. I am thankful for my family and my two beautiful children. Thankful for their health, their happiness, their expanding personalities. I am thankful that there are days they talk so much I think I just might lose my mind. I am thankful for technology giving Drew the wonderful gift of hearing, and communication. I am thankful that I actually heard Drew’s Dad say to Drew one day, under his breath, “Would you shut the h*** up?” And I’m thankful that we both laughed so hard we cried at this statement, since there was a day we thought we might never hear Drew’s sweet voice. I am thankful that I get to hear Drew say, “dube (love) you too,” every day.
Written on December 25th, 2008:
The highlight of the day came in the form of a song, sung by Drew, while playing his new piano. It is a moment that will be forever etched in my memory, as time stood still. Everyone paused, a few of us cried, and we all gave thanks for the gift of Drew’s hearing. Two Christmas’ ago, I thought this might never be possible. Hearing my little boy sing. I received many, many wonderful gifts today, but none greater than this.
Written on January 6th, 2009:
My favorite time of day is in the morning. Usually Drew’s Sister wakes up for the day first, and will be eating breakfast by the time Drew wakes. After getting his ears on and dressed for the day, Drew always wants to find his sister. He’ll say, “Morning [name]. How you?” It is so sweet.
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Some random video of Drew. 18 months post activation and 2 years, 3 months old! (Subtitles added at overstream.net):
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Written on March 2nd, 2009:
As we were playing yesterday afternoon, Drew and his sister decided to create a band for our “listening pleasure.” Drew assigned himself the drummer, while Drew’s Sister was left to choose from the variety of other instruments. She finally settled on the saxophone, but continued to whine about Drew playing the drum. She would have preferred him to select a different instrument. As Drew continued to drum, the whining from his sister grew louder, and more annoying, as time went on. “That’s too loud for my ears, Drew! Whaaaaa!” She continued whining, throwing her hands over her ears in typical dramatic fashion, while continuing to tell Drew that his drumming was just too loud for her ears. Drew’s Dad and I, while largely trying to ignore the situation, finally had our attention drawn to the band playing and whining, when we noticed a sincere act of kindness. Drew, with his natural, loving nature, decided to stop playing the drum, and gave the drum sticks to his sister. It was so kind, and a sincere act of sharing, or so it seemed. As soon as Drew’s Sister began to bang the drum, Drew, while throwing his hands over his ears, screamed, “That’s too loud for my ears! That’s too loud for my ears! Ahhhh!” It was a total set up.
(03/03/2009) Video footage of Drew 20 months post cochlear implant activation, 29 months old:
