Saturday, March 31

CT Scan Results

Dr. Kang called yesterday with the results of Drew's CT scan. Drew's inner ear formation is in tact and there are no structural issues with his inner ear. This confirms his candidacy for his cochlear implants! While this is the news we were expecting, we are very happy that our son has two perfectly shaped cochlea's!

As with the course of this journey, things do not goes as we plan, or as we are told. Dr. Kang did not schedule a date for Drew's surgery yesterday. He confirmed that he will implant Drew in June, but would like to schedule the surgery after our CI Consult with the mapping audiologist, which is Wednesday and after our meeting with a speech pathologist, which is April 25th. So stay tuned, it will probably be another month before we have a confirmed surgery date.

Wednesday, March 28

Implant Failure

Through this journey there have been many surprises, and there will be many more in the days, months and years to come. One thing I have been most surprised about is the network of parents of children with cochlear implants I have found through the Internet. These parents have been a great source of information and, through their children, inspiration for me.

Mom-to-toes, Heather, Shiloh, Kristen, just to name a few. So to them and others like them, I am thankful. Thankful that they are willing to share their children's stories with Mom's like me. I don't know if they realize how much I rely on their stories in my own journey with Drew.

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.

CT Complete...Barely

Drew had his CT scan today, a critical step in moving forward as a cochlear implant candidate. This will allow Dr. Kang to see the anatomy of Drew's inner ear, and to ensure that Drew has a cochlea for the electrode array of the implant to be inserted in.

When the CT scan was scheduled we were told that Drew would need to be sedated because he would need to remain still for the scan. To say that the sedation did not go as planned is an understatement. Drew managed to fight off all of the medicine he was given, never was drowsy, let alone sedated, and remained awake for the entire procedure. To say that Drew's Dad and I were concerned that they would have to reschedule the scan would be an understatement.

Thanks to the wonderful nurse and radiologist at Columbus Children's, Drew was still enough for the scan to be completed today. The nurse and radiologist managed to take a pacifier (which Drew has never had before), dip it in cherry syrup, place it in his mouth, securing it temporarily by using medical tape wrapped around his head. Then they strapped him to the table to reduce as much movement as possible, and ran the scan. Drew was amazing, allowing all of this to happen to him while starving, since he had not been allowed to eat after 2 AM!

We are expecting the results in the next two to four days. Dr. Kang told me that he would call with the results and assuming the scan comes back as we anticipate, we should have a surgery date within the next few days!

Monday, March 26

Moving Forward

We are very excited with the pace at which we are now moving toward having Drew bilaterally implanted. I am so happy that we re-evaluated the decisions we had previously made and that we decided to change course.

In the beginning, we had only looked outside of Columbus because the reputation of the cochlear implant program through Children's Hospital was poor. Lately we felt we were not being aggressive enough with Drew's intervention, and decided to re-evaluate our previous decisions.

Since then, we have learned that the tide is changing with an increase in the strength of the Columbus implant program. Similarly, we have discovered that many of the negative comments we heard regarding Columbus audiology program were not entirely applicable to our situation. Some of these initial negative impressions other parents had have changed since the arrival of Dr. Kang and the perspective he brings to the audiology program, and other opinions we heard on the perceived weakness of the audiology program were due to certain children struggling with their hearing progress due to other barriers that those particular children were facing.

With this new, aggressive path we are taking, Drew will be having a CT Scan on Wednesday. Dr. Kang told us that as soon as he receives the results from the CT Scan, he will schedule Drew's simultaneous surgery. Our goal is to have the surgery when he is nine months old. Dr. Kang's office will work with our insurance company to ensure coverage for his surgery.

Please keep Drew in your prayers on Wednesday, as he will be under an anesthetic for the procedure. We will let you know as soon as we have the results from the scan and Drew's surgery date!

Tuesday, March 20

Drew Heard Something!

Today we had our monthly parent education meeting through the Regional Infant Hearing Program here in Columbus. I should say bi-monthly in this case, since we were snowed in for our February meeting! Our parent educator had not seen Drew since January, so I think she was really excited to see how much he has grown in the last two months. All of the staff at the AG Bell School is always smitten with our charming little boy and he put on a nice little cooing show for them before our appointment!

Today the teacher and the audiologist decided to put Drew in the "booth," a ritual that I am sure to become accustom to in the coming months and years. This sound booth allows them to test what Drew is able to hear while wearing his hearing aids. They ran the test across different frequencies and decibels. I am happy to report that we saw noticeable reactions (did you notice that was plural?) to different sounds, including a drum at 60db and a set of maracas at 55db! It was so much fun for me to watch him react to the sound - this was the first time that I actually could see a reaction in him. I hope to have many more experiences like today!

The teacher tested some sounds several times to make sure we were really seeing a reaction from Drew. Testing a six-month-old baby is very difficult, so you have to look not only for a reaction (such as turning in the direction of the sound), but also for any change in behavior while the sound is playing or once it is absent. One time Drew reacted by jumping while I was holding him on my lap. Another time, his breathing got really fast, like the sound was stressing him out! Then his breathing slowed when the sound went away! Both the teacher and audiologist were laughing about the idea of putting a child into respiratory distress from a hearing test - that would be a first!

I'm not getting myself too excited about the test today, as this level is still not enough to get Drew's hearing into the speech banana for developing his communication, but it is very encouraging that he is able to detect some sound! And it makes putting the hearing aids in his ears each morning a little more worthwhile. Anything we can do now to stimulate Drew's auditory nerve is only going to help him once he receives his cochlear implants!

It was a beautiful day...the sun was out and it was a reasonably warm day. Spring is almost here. Oh, and Drew heard something!

Wednesday, March 14

Drew's Sister Is A Blessing

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.

I am hoping the weight of all this will never overload her, and so far I can't really tell anything is stressing her, but I still worry. Between her getting to go to We Joy Sing, which we enrolled Drew in to let him hear the music that the children sing there, to being allowed to beat a drum as hard as she can (again for Drew to try to hear something) she appears to be having a great time all around. The only trouble we've had is when she thinks Drew needs a diaper change. She says "poopy" over and over, and then "snap" a few times, and then "wipe", "wipe". If you're not paying close attention, you'll look over and Drew will be completely naked. She just wants to help him.

Because of her "helping" (and I use that term loosely), as Drew gets bigger we anticipate that his sister will be one of his biggest assets. She can attend his auditory-oral classes on a regular basis as a "student peer" which should bring some fun to class. Also, I suspect that with her rate of language development she'll have no trouble helping Drew practice his words. I personally don't know if I'll be able to talk enough to make up for a year of Drew not hearing the spoken word, but between his mother and his sister he might be seeking some earplugs. [Please no one tell Drew's Mom I said that]

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.

Tuesday, March 13

Back to the Drawing Board

What made us start questioning our decision to go to Cincinnati? We thought we had everything figured out. We have agreed to be a part of the research project Dr. Choo is doing at Cincinnati Children's. We have had all of Drew's diagnostic testing conducted in Cincinnati. Why the sudden change of heart, you may ask. We have begun to worry about the aggressiveness of the program in Cincinnati.

I went to a parent support group meeting a couple of weeks ago and was asked to talk about the things going on in Drew's world. I could think of nothing to say. Sure we put hearing aids in each day and do the activities we have been given through our early intervention program, but basically, we are doing nothing. We are enjoying our beautiful, fat, profoundly deaf baby boy. And while we cherish these precious moments, each day that passes is one more day that he can not hear. Why are we sitting around waiting to have an MRI and gain insurance approval for his surgery? Why can't Drew be implanted tomorrow? Why do we have to wait? And why have I not questioned this time frame issue more? As I pondered these questions, I asked myself, "Are we are being as aggressive with Drew's implants as we need to be?" I got home from the parent support group meeting and Drew's Dad and I questioned ourselves the rest of the day. The rest of the weekend. And we are still questioning ourselves today.

Drew's Dad and I have been very aggressive about everything regarding Drew's profound hearing loss from the beginning. (Are you surprised?) We have spent countless hours researching everything on profound hearing loss, cochlear implants and oral deaf education. We have traveled out of state for testing and visits to the top oral deaf education schools in the country. And through it all, we have learned that there is no one way to proceed forward. Cochlear Implant technology is evolving daily. There is no set course of action. The standard protocol changes from one implant center to another. Throughout all of this, one thing has remained constant: we need to utilize the best medical intervention available today.

In all of our research, we are certain that having Drew simultaneously implanted is by far the best choice. We also believe that having him implanted as early as possible will only further help him perform optimally with his implants. I contacted Dr. Choo about two weeks ago with our research and desire to have Drew implanted simultaneously. I could tell instantly that he was not comfortable with performing the surgery simultaneously by the long pause following my request. I do not want to push him into doing surgery on my son if he is not comfortable with this new, very aggressive procedure. While Dr. Choo is an excellent, excellent surgeon, he is not as aggressive as we would like in this field. His argument is that we need to see how Drew does with his first implant, and assuming he performs well, Dr. Choo will do a second implant between six months and one year after the first. Because we know Drew's hearing loss was caused by Connexin-26, we are certain that Drew will perform optimally with his implants, since hearing loss is the only trait associated with this genetic disorder. So waiting to have the second implant done in Connexin-26 children is only putting them through another, unnecessary surgical procedure.

In addition, I questioned the time frame that Dr. Choo would like to have Drew implanted. Why are we waiting to implant a child with profound hearing loss that is showing no benefit from his hearing aids? I do not see the need to wait until he is one year old. When I asked Dr. Choo about this, he again he not as aggressive as we would like. He sticks to the 11 month to one year time frame, as approved by the FDA, because there are some risks of additional bleeding with the softer skulls in infants. These risks are minimal and in our minds do not outweigh the need to get Drew hearing as soon as possible.

So we have questioned our decision to go to Cincinnati. And we have questioned why we are questioning ourselves. Just when we think we have made some difficult decisions, we go back to the drawing board and ask, have we made the best decisions for Drew? In this case the answer is "No." So we open doors we have previously closed, and in doing so, we have realized that we may have closed some doors prematurely.

Monday, March 12

Columbus - We Don't Want to Leave

I feel like my life is in a constant state of fast forward. Between balancing two young children, work, home, doctors appointments, school intervention, family obligations, I hardly have time to sleep (and that has been rare recently, with Drew waking during the night). And just when I think things are about to go back to play mode, something happens that makes me stay in fast forward. For several months now, we have been certain that we were going to have all of Drew's surgery and habilitation done in Cincinnati. Now I believe that Drew will not be implanted in Cincinnati.

I am not sure if I have ever fully explained why we felt the need originally to search for surgeons and habilitation outside of Columbus. We have learned that there are three main areas to consider when deciding where to have Drew implanted: the cochlear implant surgeon, the audiology program and the oral deaf education school connected to the implant program. These three pieces of the puzzle will have to come together perfectly in order for Drew to receive the maximum benefit from his cochlear implants, and to reach our goal of having him mainstream at kindergarten with his hearing peers. These are the three things we are continuously investigating at area implant centers, and as we continue to do research, Columbus Children's just may offer the best for Drew after all.

Over the next several posts, I will try to explain why we initially felt Columbus could not provide Drew the best in each of these areas, and why we are starting to think that we made a premature decision. We are trying to make the absolute best decision we can for Drew, so while we think we have made excellent decisions for him to date, we will continue gather information and when needed we will rethink our decisions. We have no regret in changing our minds at any point along this journey. Our only objective is to do what is best for our son, and we feel confidant that the decisions we have made in the last few weeks are in Drew's best interest.

Thursday, March 8

ABC's What About Brian - An Absurd Depiction of Cochlear Implants

Last month Drew's Mom discussed ABC's Monday night drama, What About Brian. It was quite exciting because it concerned two parents struggling with how best to care for their young daughter who was not hearing, which is obviously the situation we are in right now with Drew.

We weren't the only ones who were excited. The Alexander Graham Bell Association for the Deaf and Hard of Hearing issued a press release that oozed with optimism that the show would increase awareness and understanding of hearing loss in children.

On the show, the two parents had decided to have their daughter receive a cochlear implant in order to help her hear after considering their options. Drew's Mom and I were both excited to see how the decision would play out since we are opting to give Drew an implant as well. Because we knew nothing of the many options out there to allow Drew to communicate without relying on sign language, we felt that this show would help parents learn about the option of the cochlear implant.

On the Monday, March 5th episode of What About Brian, it was revealed that the whole storyline of the little girl's hearing loss was an ill-conceived ploy to advance the storyline and have the two parents overcome their problems and get back together.

Rather than portray the cochlear implant option in a realistic light, which would help the deaf and hearing alike, ABC and the writers of this show decided to broadcast an inaccurate understanding of cochlear implants to all who would watch.

In the crucial scene, the parents and child are in a medical office with someone in a white coat in order to have the cochlear implant turned on. Here are a few of the blatant fictions portrayed in this scene:

1) The device they call the cochlear implant does not have a "coil", a required piece of the device which sticks to the skull via a magnet. This is how the signal travels from the microphone to the auditory nerve.
2) When the parents ask when the implant will be turned on, the "doctor" says that it's already on, and that "frankly, there is no way to tell" if she is hearing at that point in time.

This is blatantly false. I have seen many videos of children having their implants turned on, and they usually cry with fear of the new sense they have acquired. Hearing their mother's voice after never hearing anything is quite a shock!

Perhaps this T.V. doctor didn't think there was a way to tell if she could hear because he's not an" audiologist", the highly trained professionals that would be there to help determine if the device was working. Or, perhaps its because this doc had no equipment of any kind to assist him in making that determination.

3) These thorough ABC writers then did some exhaustive research and took a page from the "Cochlear Implants for Complete, Utter, and Total Morons" and wrote it in the script where the "doctor" prescribes a completely irresponsible course of action for this family to follow.

This character says (and I'm paraphrasing) "o.k. go home and keep a lookout for any language development." That's it. They make it out to be that there is no further action required. Plug and play. Just "keep an eye out" for any speech, any language. Just take a little peek every once in a while just to see if little Johnny is progressing with his hearing, his language.

This is not an accurate description. You are taking a child that has not had the educational sensory benefits of sound for a year. You don't just go on as though nothing has happened. If this child is going to speak, he or she will need training and education to develop the skills that have sat at a baseline of zero for a year. I resent the fact that this show gives people the impression that they can have their deaf child have implant surgery and there's nothing else to do. That is a dangerous message to send to parents who may not understand the importance of this decision for their child.

4) Ultimately the child gets an ear infection within a couple of days, and they see another "doctor" in what looks to be an emergency room. The "doc" looks in the ear and says something like "I take it she had a cochlear implant". The tone of this statement sends the message "This always happens with cochlear implants".

This quack then says in a short, condescending voice to the parents "Listen, I'm not an expert, but your daughter can't hear anything out of that ear", and leaves.

My questions on this ridiculous sequence are 1) how that doctor can say the girl can't hear when he's not an expert on hearing; and 2) why this doc would think that (even if he was an expert) that shining a little light into an eardrum and looking in the outer ear canal would help him determine if the implant, which is IN THE INNER EAR, is working).

This depiction of the activation of the cochlear implant was revolting. It would be one thing if ABC simply did not do their homework and thought that most viewers wouldn't notice if they just faked it. However, to me it seems to have a clear anti-cochlear implant message.

To me, this episode of What About Brian says "if you give your child a cochlear implant, they'll get an ear infection and lose all their hearing you evil, selfish parent." It fits right into much of the garbage I've seen written on other blogs that compares people with cochlear implants to robots and vampires.

It's a shame that a topic such as this, which could have brought a lot of good was instead simply used as a plot device and ended up simply spreading false impressions.

Your comments are welcome.

Monday, March 5


I received the results of my genetic test today. I have the same mitochondrial abnormality found in Drew. This means that my daughter most likely carriers this abnormality, as well as my sister, brother, Mom, her siblings, my Maternal Grandma, and the list goes on and on. Your mitochondria is only passed from your mother, so the chain ends with every boy. Boys can be a carrier, but can not pass the abnormality to their children. While everyone in my family has normal hearing, it is important to know of this abnormality, because deafness could be induced immediately with the use of amnioglycoside antibiotics.

The doctor tried to explain all of the risks to me, but all of this biology stuff is a bit overwhelming and difficult to understand entirely. With a mitochondrial abnormality, the only test that can be performed is to see if you have the abnormality or not. It is a very black or white test. The testing can not confirm "how much" of your mitochondria is affected by the abnormality. While still in the research phase, it is believed that mitochondrial abnormalities affect only a percentage of mitochondria DNA. The more affected, the greater risk of exhibiting a hearing loss. In addition, some of these abnormalities are only exhibited when they are in conjunction with another factor, like the antibiotics, or potentially in Drew's case, with Connexin 26. It is hypothesized that in my family, the percentage of abnormality is small, since no one exhibits signs of hearing loss on that abnormality alone.

At this point I know that I could potentially lose my hearing with the use of certain antibiotics. The same would be true for my daughter, sister, brother, others in my family, although to be certain they carry this abnormality, each individual could have a blood test run. But given that I am a carrier, it is believed that this mutation runs in our family, and was not just a brand new mutation in Drew.

I will be looking into medical alert bands for myself and my daughter, for use if we are in an accident to prevent any hearing loss we could have from the use of these antibiotics. If you would like information on how to have yourself tested through Cincinnati Children's, please click here.