Wednesday, December 27

More Genetic Testing

The past week has been a whirlwind, as I am trying to understand Drew's genetic test results, and determine where to go from here. I have learned a lot about both his connexin 26 and mitochondrial abnormalities. As I have discussed before, the mitochondrial abnormality is the most worrisome, as it can affect others in my family. Here are some of the steps we will be taking in the immediate future:

1. I will be having a DNA test run in the next week or so to see if I carry the same mitochondrial abnormality as Drew. If I do, I am at risk for hearing loss. In some, the hearing loss is apparent at birth (like Drew), and in others it is only induced by certain aminoglycoside antibiotics. I have read that I have a 100% chance of losing my hearing by the time I am 60 years old if I carry this mitochondrial abnormality and have ever had one of these antibiotics. There is a possibility, however, that this mitochondrial mutation popped up "de novo" in Drew and that I do not carry this mutation.

2. We will be having our daughter's hearing screened. As a result of the genetic testing, there is now hereditary hearing loss. It is recommended that all children in families with genetic hearing loss be evaluated yearly until they are six years old. Our audiologist will set a benchmark with our daughters' hearing, and then evaluate it each year to see if she has any loss. We will know more about any risk for her after my DNA test results. If I do in fact carry the mitochondrial mutation, it is very likely that she carries the mutation as well. Generally the mutation is passed to all children of an affected mother. That being said, she would be at risk for hearing loss from the aminoglycoside antibiotics. Knowing this information could prevent deafness in both of us.

3. Our daughter will also have a DNA test run to see if she carries the connexin 26 gene recessively and if she has the mitochondrial mutation. Even if I do not carry the mutation, I could have passed it on to her. Again, the more information we have, the better we will be at preventing hearing loss in her. Knowing if carries the connexin abnormality will help her in the future to know her possibility of having a child with hearing loss.

4. Pending the results of my DNA test for the mitochondrial abnormality, my sister will be tested for these abnormalities. If I carry the mutation, she most likely does as well, since it likely would have been passed to both of us from our mother. (This mutation would not affect my brother's children, since it is only passed from the mother. He would, however, be at risk for the amnioglycoside deafness. He may be tested for this at a later date). This will allow my sister to know if there is any possibility of passing this mitochondrial mutation to her children. She would only be at risk of having a connexin baby if her husband also carries the connexin 26 gene recessively. Since only three out of every 100 people carry this abnormality, it is highly unlikely.

Again, if you have any questions regarding testing for genetic hearing loss, please feel free to email me. Or, you can get information on testing for genetic hearing loss from Cincinnati Children's Hospital.

Monday, December 25

And to All A Good Night

Christmas brings out the sentimental side in me. It is a time remember Christmas' past - and boy are there some great ones! And for me today it was a time to think about Christmas future. A day when Drew will be able to hear and will be running around laughing and playing with toys like his sister did today. Christmas is also a perfect time to say the things we often think about but don't say.

I have had several people take time during the holidays to tell me how proud they are of how my husband and I have responded to this challenge. What I don't think you know is how much of an impact you have played in our ability to stay positive and strong (for the most part) emotionally.

I have always believed that things happen for a reason. And while I stay up late at night sometimes wondering why the Lord chose my son to be deaf, I do know that one day I will find the reason. And in some ways, I think I already have. This challenge has made me an emotionally stronger person. It has made my marriage even stronger. It has made my entire extended family stronger. It has made me appreciate the littlest things my children do, such as coo or laugh, just a little bit more. And, it has shown me who my true friends are.

To all of my family and friends, I want to tell you how much you mean to me and to say thank you. Thank you for being who you are and for caring so deeply and genuinely for the well being of my family.This has been the hardest and longest three months of my life, and I can not imagine how hard it would have been without my family and friends supporting me. I don't think I have told you enough how much I appreciate the things you have done for me and my family. Knowing that my daughter is well cared for, as I take Drew to one doctor's appointment after another, and watching her without any notice so that I am able to take Drew to the first appointment the doctor can see him, is priceless. Thank you for offering to watch Avery and Drew so that I can get out of the house to de-stress and get my mind off of what is going on. Thank you for the countless hours you have spent researching deafness and cochlear implants for me. Thank you for the phone calls you have made to your friends to help get Drew an appointment with a doctor sooner than what their office tells me. And thank you for talking about his deafness, rather than avoiding it, with me. This has been so hard, but the fight is worth it. And we will all get to enjoy the outcome together. A beautiful day in 2007 when Drew will hear me tell him that I love him. And after he hears that, I will tell him about all of his family and friends waiting to do the same.

Friday, December 22

Biology 101

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 can not 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.

I had thought after reading one site that the mitochondrial abnormality is X-Linked. I now know that is not the case. The mitochondrial abnormality is different, and generally is passed to each offspring of an affected mother. The concern I have is that if this mitochondrial abnormality did play a role in Drew's hearing loss, what concern should I have that my daughter will progressively lose her hearing?

From talking with Dr. Choo, he can not tell if the mitochondrial abnormality had any part in causing Drew's hearing loss. We know the connexin 26 abnormality certainly can cause profound hearing loss. In order to determine if the mitochondrial abnormality played a part in the hearing loss, Dr. Choo recommended that I have my DNA tested to see if I carry this abnormality. If I do, Dr. Choo believes that this abnormality in my families genetic make up does not cause hearing loss because I do not have hearing loss. If I do not carry it, it is possible, although very rare, that this mutation popped up "de novo," as a brand new genetic mutation in Drew. (The good news is that because the mitochondrial is only passed from mothers to their children, Drew will not be able to pass this on to his children.)

I am so thankful that I am working with Dr. Choo. Cincinnati Children's has a large research program on the genetics of hearing loss. I am confidant that with further testing, Dr. Choo will be able to locate the primary cause of Drew's hearing loss and will be able to tell me the risk factors for those in my immediate family.

With the genetic testing now complete, Dr. Choo has medical proof that the diagnostic hearing tests of Drew are accurate. He told me that this makes a Cochlear Implant medically necessary, and that it is very possible we will be able to have the surgery approved prior to him turning one year old. Finally, some wonderful news!

Thursday, December 21

ER: Columbus Version

When I was pregnant with my first baby, I told myself that I was not going to be one of those neurotic parents that flips out about the smallest things, spending time in doctors offices, asking silly questions about nothing. And I did just that. She is rarely sick, usually happy, unless it's nap time, and I really don't worry about her overall health.

Pregnant with my second, I thought, "I have this down. It will be even easier the second time. I know what I'm doing." Not only was I telling myself this, but everyone around me was as well. Boy was I wrong, and so were other! I have been much more worried about Drew's health, spent more time at the doctor than I could have imagined. Wednesday night would be no different, as we found ourselves at Children's Hospital ER.

Drew started to show signs of having a cold on Monday night. It really didn't worry me too much, since his sister and father have had colds over the past few weeks. By Wednesday morning, however, it was getting worse, and he was wheezing, making eating difficult. By afternoon, he had hardly eaten all day, so I took him to the pediatrician. The doctor was concerned by the rate of Drew's breathing: over 80 breaths per minute, when normal is under 60. He did not feel comfortable sending us home, so he told me to take him to Children's ER.

His Dad and I arrived at the ER at 5:30 PM. It was packed, but, with an infant with a respiratory problem, we were called back right away. The nurse listed to his lungs and checked his oxygen level. He was wheezing, breathing too fast, but was maintaining a 98% oxygen level, which was really good. In addition, he did not have a fever, a good sign. As a result, we were sent back to the waiting room, to go in the normal order of patients.

At 7:30 PM we were finally called back to an exam room, where at 8:30 PM a nurse came in a took his vitals and suctioned out as much fluid as she could from his nose. He cried so hard and turned so red. We felt so bad for him, but after that, he was able to eat really well for the first time all day!

Finally, a little after 9 PM, the resident came in and looked at him. She listed to his lungs and checked his breathing rate, which had dropped to around 60 breaths a minute. She diagnosed brochiolitis, a fairly common viral infection for children. Drew was just having a little problem fighting it, probably due to his age. The doctor did order a chest X-Ray to rule out pneumonia, which came back clear. She also wanted the X-Ray so she could look at his heart, since sometimes respiratory problems can be related to a heart condition. That too was normal.

We finally were discharged from the hospital a little before midnight. Talking on the way home, we realized how much worrying we have done over Drew's health. It's not to say we were never worried about our daughter, but everything was just very natural and we never worried about her overall health. But with Drew having profound hearing loss, and now knowing it is genetic, we often worry that there are other problems we don't know about.

One bit of good news is that his ENT told us that by discovering the genetic abnormalities as a reason for Drew's hearing loss, we really can rule out the possibility of other problems. With all of the surprises we have had along the way, we are still worried.

Tuesday, December 19

Trying to Understand

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. I have learned the following:

X-linked inheritance refers to conditions or traits for which the gene is located on the X chromosome. Recall that females have two X chromosomes while males have only one X chromosome.
The majority of X-linked conditions are X-linked recessive, meaning that one normal (working) copy of the gene would compensate for a non-working copy. It is much more common for males to have X-linked recessive conditions than females, since males do not have a second copy of their X chromosome to compensate if their one copy has a mutation. There are some cases when females can be affected with an X-linked recessive condition, but this is much less common.
X-linked dominant inheritance is quite rare.
Females will only be affected with an X-linked recessive condition if both copies of the gene on their X chromosome have mutations (this is quite rare). If a female has a mutation in only one copy of the gene on their X chromosome, they will not have the condition. Males, on the other hand, will have the condition when the gene on their one X chromosome has a mutation, since they do not have a second copy to compensate
When a female is a carrier of an X-linked recessive condition (i.e. has a mutation in one copy of an X-linked gene), each of her offspring will have a 50% (1 in 2) chance of inheriting the working copy, and a 50% (1in 2) chance of inheriting the non-working copy. Thus, daughters of a female carrier have a 50% chance of being a carrier and a 50% chance of being a non-carrier, and sons have a 50% chance of being affected and a 50% chance of not being affected.
When a male has an X-linked condition, all of his daughters will be carriers (since all female offspring receive an X from their father), and none of his sons will be affected (since he will pass on his Y chromosome to all of his sons).

This information leaves me worried for my sister and for my daughter. My prayer is that my Mom passed this mutation only to me and I pray that I did not pass this mutation to my daughter. It is passed on to females 50% of the time, so I am praying that it was not passed to them. If it was passed to them, when they have children they will have a 50% chance of passing the mutation to thier daughter, and worse, they will have a 50% chance of having a son who is deaf.

After learning that this abnormality runs in my family, I have thanked God a lot today that my brother was not born deaf. He was very lucky to be born in the group of 50% of males that are not affected with the condition. It is still unbelievable to me that this runs in the family and yet we have no knowledge of anyone born with infant hearing loss.

Connexin 26

I received a call today from Dr. Choo (see previous post) with the results of Drew's genetic testing. While the results are surprising, I now have an answer to the "Why did this happen?" question.

Drew's genetic test came back with abnormalities in his connexin 26 gene. This is the most common gene for hearing loss. This means that both his father and I carry the recesive gene, and when Drew was conceived, he received two connexin 26 genes with hearing loss, causing him to be deaf. We learned that because we both carry this gene, we have a 25% chance of having a baby with profound hearing loss.

As a result, we now know that this runs somewhere in each of our families. If you would like to know if you carry the gene, please contact your local physician or click here for information on a genetic test for hearing loss. Dr. Choo said that Cincinnati Children's would run the test for anyone in our families wishing to know. Additionally, Dr. Choo said that he will send me some paperwork with the specific test to be run, so if you would like that information, please email me. Please know that you will only have a 25% chance of passing hearing loss on to your child if both you and your partner carry this gene.

In addition, Drew's mitochondrial tested abnormal. Here is some information on mitochondrial hearing loss:
Mitochondrial: Mitochondria are small organelles in our cells that have their own DNA, known as mtDNA. The number of mtDNA base pairs is only about 16,000, but there are many copies of mtDNA in each cell. We inherit all of our mtDNA from our mothers, so if the hearing loss is caused by a mutation in mtDNA, all the children of affected mothers (but none of the children of affected fathers) would be expected to have hearing loss. An mtDNA mutation, in which a G instead of an A is found at position 1555 (called A1555G), causes severe to profound sensorineural hearing loss. However, in some individuals with the A1555G mutation, the hearing loss does not occur until after exposure to aminoglycoside antibiotics. Thus, knowing this mutation is in the family can help to prevent aminoglycoside-induced deafness.

This information has me very concerned because it would mean that his older sister has the mutation, and could become hearing impaired by the use of certain IV antibiotics. We will be having her screened for this in the near future. In addition, it means that my sister could also be a carrier and pass hearing loss on to her children. I am doing a lot of research to learn more about the genetic causes of hearing loss, and will pass information on as I learn it.

For more information on the research being done at Cincinnati Children's hospital on genetic causes of hearing loss, please click here.

Saturday, December 16

Round 1 of Testing Complete

Drew and I traveled to Cincinnati on Wednesday, as you may know from a previous post, for his first round of testing to determine if he is a candidate for a cochlear implant. I am happy to report that all of testing went very well.

This round was primarily focused on assessing Drew's cognitive ability. The audiologist, speech pathologist and developmental physician we meet with were looking at his developmental milestones. For example, the speech pathologist was very impressed that Drew was able to follow her finger as she pointed at various objects. She was also very impressed that he would gaze between her eyes and lips while she talked to him. These are things that babies do as they learn to communicate with the world around them and usually happen around 3 1/2 - 4 months of age. The specialists were really pleased to see how Drew is progressing with his desire to communicate. We know he will be behind his hearing peers in terms of speech, but if we can continue to engage him in activities that promote communication, the delay will be minimized.

We also had an ophthalmology appointment to rule out any problems with his eye site, since many deaf babies also have eye problems. While the experience is worthy of a future post of its own, Drew's eye site is perfect. He is near sided, which all babies his age are. The doctor dilated his eyes and examined his retinas and told me that hie eye site is normal.

At this point, the only eye site concern we have is that Drew's hearing loss was caused by Usher's Syndrome. While there is no test for this, we will be able to rule out any possibility if the genetic testing we have run comes back positive for connexin, the most common recessive gene for hearing loss. Otherwise, there is a very small chance he could have ushers, which has a degenerative loss of eye site, usually beginning with night blindness around two years of age. Please know that while it is a possibility, it is so rare, that we are not getting ourselves overly concerned about it.

Drew is a candidate for an implant, pending the results of a future cat scan show his ear has a cochlea. It has been rescheduled for March 14th. At that point the implant surgeon will be able to tell us the medical possibility of an implant. We know from this testing that he has the cognitive ability and desire to communicate.

Thursday, December 14

Jingle Bells

My husband and I took Drew and his big sister to visit Santa Claus this week. There are daily reminders that Drew can not hear, and a trip to see Santa Claus would prove no different.

The week-day line to visit Santa was short, which was a blessing, since Drew had just pooped and his big sister was still a little upset from a minor fall earlier. Both of our children warmed right up to Santa, which was surprising since there were children all around us crying at the mere sight of him. They both looked so cute in their holiday outfits, with Santa's arms wrapped tightly around them. One of the elves was ready to take their picture, but Drew was not looking at the camera. He was looking up at all of the Christmas lights hanging from the ceiling in the mall. The elf paused for a moment, then looked under a table. He pulled out a sting of jingle bells, and then began to ring them vigorously in hopes of getting Drew's attention. But Drew's eyes stayed gazed on the lights in the distance. I began to cry as the photographer took the picture.

I think that I have been doing well emotionally with Drew's deafness. I know he is deaf, but sometimes I am not thinking about it and I have tried not to dwell on it. Then something will happen in the world around me and I am reminded again that he can not hear. Sometimes those moments catch me by surprise and are upsetting. It is these little moments, where I am suddenly reminded that he can not hear the beautiful sounds of the world around us, that make me cry. But then I daydream about the future, and I think about him hearing all of the beautiful sounds of the Christmas season this time next year and I thank God that I live in a world where my son can be given the gift of hearing. What a beautiful gift it will be for me when he hears Santa's elf ringing the jingle bells this time next year.

Deaf and Proud to Use Sign Language - Link

This ABC News article discusses the debate between living life as deaf or with diminished hearing, or having technological assistance through the use of hearing aids or a cochelar implant.

One of the first things my wife and I noticed when learning about Drew's options was that many of the professionals we saw "danced around" certain topics, and wouldn't give thier opinions on certain things. At first we didn't understand why.

We have come to discover that (in our opinion) there is a pretty heated debate between those who believe in the use of cochlear implants and/or hearing aids, and those that do not. There is similar passion between those who believe in ASL (American Sign Language) as a sole means of communication and those who embrace Auditory-Verbal or Auditory-Oral communication.

In my limited experience so far, it seems that many people whom are deaf have a stong sense of being in the "deaf community", and some believe that it is disgraceful for another deaf individual to "turn thier back" on that culture by having cochlear implant surgery.

This article highlights the strong sense of community that many deaf people have, as well as thier great successes without technological assistance. I will post my opinions on the matter in a later post.

If you have an opinion, please leave a comment.

Entire Deaf Family Recieves Cochlear Implants - Video

This ABC News report focuses on an entire family that has recently recieved cochlear implants.

The mother and father were born deaf and were implanted in thier 40's, which is probably a pretty rare step to take for those who have been signing thier whole life, finding much success without hearing. Their two children are also deaf, and were implanted at a young age.

This video shows the parent's excitement when they hear each other's voices for the first time, as well as the first sounds thier children were able to hear. It also shows the incredible speaking ability for the older girl. While we have both seen several kids with similar language skills, seeing videos like this still leaves me in awe.

We have not seen any reaction from Drew when wearing his hearing aids, so we are increasingly hopeful that he will benefit from a cochlear implant.

Tuesday, December 12

Headed to Cincinnati

I will be leaving early tomorrow morning for Cincinnati Children's Hospital where Drew will undergo a wide range of testing. This will determine if he is a candidate for cochlear implants, and if so, how well they think Drew will be able to communicate orally after the surgery.

Through an aural and speech evaluation, the audiologist and speech pathologist will be able to determine if there are any structural challenges that Drew may have to over come. These could include jaw and tongue deformities. He will also undergo a developmental and behavioral evaluation to determine if there are any issues with his cognitive ability. Learning to communicate orally could be hindered by a learning disability, so they want to try to rule that out. Also, he will have an ophthalmology appointment to rule out any eye problems. There are many syndromes that cause hearing loss and eye problems, so it is performed simply as a precaution.

We were most excited for our cat scan, which was scheduled for Thursday. To us, this is the most important piece of his evaluation. We want to make sure that Drew was born with a cochlea. The only way a cochlear implant will be done is if he has a cochlea. It has, however, been rescheduled. We learned today that you must be born full term or be 60 weeks post conception to have an out patient cat scan. Since Drew was born one day shy of full term, he would have to spend the night in the hospital after a cat scan. Since it is not medically necessary at this point, it has been postponed for about 12 weeks, which will put him 60 weeks post conception. We were disappointed to learn of this today, since this was the evaluation most important to us. But, as I have discussed in this blog before, having a child with a disability requires a lot of patience.

Monday, December 11

Drew Has Hearing Aids!

Drew received his hearing aids this week (picture to the left). 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.

We have not seen any noticeable reaction from Drew to any sound. I personally have tried my own testing; the results are inconclusive. I will think that I see him react to a noise around the house, then I will recreate the noise and get no response. I have not noticed a reaction to the dog barking, phone ringing, loud yelling or to the television being turned up really loud. None of this is surprising; we did not have a lot of hope that the hearing aids would benefit our son.

Certainly he will not be able to speak without further intervention. With a hearing loss as profound as his, the hearing aids simply are not able to amplify sound loud enough for Drew to be in the speech banana. This means that all speech is unintelligible for him, if it is even loud enough for him to hear.

Thursday, December 7

Turn On My Ears!

I thought you might wonder how we came up with "Turn on My Ears" as the title for our blog...

We learned of Drew's hearing loss on October 26, 2006. I went to an ordinary ENT appointment by myself, expecting to be told that the fluid previously found in Drew's ears from birth had not yet cleared. Instead, the fluid had cleared, and I found myself being moved from sound booth to sound booth as they ran multiple screening tests in each of Drew's ears. From the audiologists behavior I could tell that something was not right. I was finally brought back to the exam room, where the ENT came in and told me, "Well, that's not what we wanted."

"Not what we wanted? That's all you have to say to me?," I thought, as I sit crying and alone in the doctors office. This ENT is the most highly regarded in the city, and all he can say is, "That's not what we wanted." I was told that they could not tell from their testing how much hearing loss he had. Further testing would be needed to determine how profound Drew's hearing loss was.

We contacted Columbus Children's Hospital for the follow up testing, and were told that it would be a month before they could see us. I felt as though they were saying, "We know your child has hearing loss, but we're not going to tell you how profound it is for a month. And, by the way, this will put off any treatment options for that long as well. Have a nice day."

Luckily we were put into contact with Dr. Jacques Herzog in St. Louis, MO, a family friend. While it did require a six hour drive to meet with him, what we got out of the visit was well worth the trip. A wonderful audiologist from St. John's Mercy did a full diagnostic ABR test on November 6th and told us the news: Drew was born with bilateral profound hearing loss.

After the screening, we met Dr. Herzog. He spoke with us about cochlear implants and told us that Drew would be a candidate for surgery. He looked at both of us and said, "Drew was born very healthy and looks perfect. His ears look great, he just needs a little help turning them on. That is what I am here for."

What a wonderful way Dr. Herzog gave us to look at this journey. We have the opportunity to turn on Drew's hearing and experience that first moment with him. As a parent, we think of watching our child crawl and walk for the first time but we don't ever think about seeing our child hear for the first time. What a wonderful moment that will be.

Wednesday, December 6

Interviewing Dr. Richard Kang

We had the opportunity to meet our third otolaryngologist this week. Dr. Richard Kang was recruited to Columbus Children't Hospital from California, where he established a large cochlear implant clinic. He is a very agressive doctor in this field, meaning that he is very open to the newest procedures, bilateral cochlear implantation.

We had the opportunity to talk with Dr. Kang for over an hour, mainly about Drew's diagnosis and the path Dr. Kang feels we should take for Drew. We both felt very comfortable with Dr. Kang's bias in this field: he implants children so they may live in the hearing world. We feel very confidant that Dr. Kang has the same goal for Drew as we do; to be a happy and healthy boy, living and communicating in the hearing world.

Tuesday, December 5

Raising a Child with a Disability

It is getting rather late this evening, and I have had a long day. I thought I would share this with you tonight. We have been given many articles and stories regarding Drew's hearing loss, but this one has stuck with me. It is entitled "The Beauty of Holland" and was written by Emily Pearl Kingsley:

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful vacation plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very, very exciting!

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."

"Holland??" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a while new group of people that you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you have been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

My husband and I read this together, and as I cried he simply turned to me and said, "But I think we can still go to Italy." He could not be more right.

Saturday, December 2

Ohio House Bill 431 - Link

One thing we are struggling with is our schooling options for Drew. Once he receives his implant (hopefully in less than 10 months!), we feel very strongly that Drew needs to be in a preschool program for children with only hearing loss. There are no programs in Columbus for children under age three, so right now we believe that he will be attending an oral deaf education school, Ohio Valley Voices in Cincinnati, three days a week.

By Ohio law, at age three education will become the financial responsibility of the school district in which we live, through a preschool special education program. Since there are not a lot of children with disabilities in the suburban school districts, these school districts all rely on the City of Columbus School District's AG Bell School to provide these services. While we have not yet visited this public school option, we have concerns because they service kids with disabilities in addition to their hearing loss. This means that the teachers will not be able to focus on hearing needs alone.

There is a bill before the Ohio House right now that, if it passes, will allow parents like us the option to choose schooling by use of a voucher. We are actively supporting this bill, since it would allow us to receive a scholarship voucher for Drew to attend the school of our choice, public or private. All of the oral deaf education preschools we have visited are private and not currently funded by the school districts, therefore leaving the financial responsibility to the parents.

We know that the schooling Drew receives once he is implanted and mapped will play the largest role in his ability to mainstream at kindergarten with his hearing peers. For this reason, we wholeheartedly believe that we should be able to choose how to allocate the funds available for Drew's education. Currently, those funds are only available for the public school option. With this bill, we would be able to allocate those funds to a school of our choosing, be it public or private. This would allow us to select a school that specializes only in educating children with hearing loss.

We ask you to look at this bill and contact your state representative to ask for his/her support of this important legislation.

Thursday, November 30

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.

Wednesday, November 29

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.

Tuesday, November 28

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 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.

Wednesday, November 22

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.

Wednesday, November 15

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.

Tuesday, November 14

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.

Monday, November 13

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.

Saturday, November 11


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.