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.
Drew seems to be doing OK right now (playing with his hockey puck and watching Little Bear), but I'm going to keep my eye on him.
As a side note, I recall having multiple ear infections as a child. Much of those memories is focused on the pain and pressure of the ear infections, but I also remember how it sounded as if you were underwater, hardly able to hear.
With Drew, of course, his hearing is not affected at all by this ear infection. Rather, he only feels the pressure building up on his swollen eardrum. I just thought this was interesting since having an ear infection usually brings such a drastic loss of hearing ability...but not for our CI guy.
Showing posts with label Medical. Show all posts
Showing posts with label Medical. Show all posts
Tuesday, October 28
Monday, July 21
All Better
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 EMT's 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.
I'm hoping we don't see another virus like that anytime soon.
I ran into the EMT's 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.
I'm hoping we don't see another virus like that anytime soon.
Wednesday, July 16
Virus Confirmed
Drew woke this morning without a fever for the first time in three days. He was sitting in his crib saying "drink" and "cup" over and over again. He is dehydrated and hungry, but still doesn't want much to do with either.
This afternoon Drew broke out in a rash. I immediately began scouring the Internet for possible culprits, and found the Roseola Virus. All of the symptoms fit Drew perfectly, and a quick trip to the doctor (the fourth one in as many days) confirmed the diagnosis. Now, in 5-7 days Drew should be rash and virus free.
I hope Drew's appetite comes back soon. He has no interest in eating - anything. We've given him free reign in the kitchen, and he still won't eat. He's a little better with drinking fluids, more so in the morning than the rest of the day. I'm hopeful that this is the last we see of this stinky virus.
The verdict is still out for Drew's Sister. This virus typically affects children between six months and two years, so she is just past the age for it. We shall see. Please send some "go away virus" thoughts our way.
This afternoon Drew broke out in a rash. I immediately began scouring the Internet for possible culprits, and found the Roseola Virus. All of the symptoms fit Drew perfectly, and a quick trip to the doctor (the fourth one in as many days) confirmed the diagnosis. Now, in 5-7 days Drew should be rash and virus free.
I hope Drew's appetite comes back soon. He has no interest in eating - anything. We've given him free reign in the kitchen, and he still won't eat. He's a little better with drinking fluids, more so in the morning than the rest of the day. I'm hopeful that this is the last we see of this stinky virus.
The verdict is still out for Drew's Sister. This virus typically affects children between six months and two years, so she is just past the age for it. We shall see. Please send some "go away virus" thoughts our way.
Tuesday, July 15
Still Sick
Well, 48 hours later and Drew still has a 101+ fever. We'll be heading to the doctors office this morning for another evaluation. This bug has a good hold on him.
The emergency room doctor, in an effort to calm my meningitis fears, gave me several warning signs to look for:
The only things that have calmed Drew this morning are being held by me with his neck turned toward the television and sitting on the couch watching Barney. I'm certain he has a virus, but another trip to the doctors office won't hurt.
The emergency room doctor, in an effort to calm my meningitis fears, gave me several warning signs to look for:
- Concerted effort not to move neck; patient will move entire body to look at something, stabilizing neck.
- Crying when put in a sitting or standing position.
- Showing no affection or desire to be held; patient is much happier laying by themselves than with others
- Seizure activity does not stop without medical intervention
- Diarrhea is NOT a sign of meningitis, but a typical virus
The only things that have calmed Drew this morning are being held by me with his neck turned toward the television and sitting on the couch watching Barney. I'm certain he has a virus, but another trip to the doctors office won't hurt.
Monday, July 14
Not Fun
Drew woke from his nap yesterday afternoon very cranky, running a 103+ fever. We immediately started the cooling process with a dose of children's Tylenol, a Popsicle and a wet wash cloth on his face. None of these activities seemed to be helping, so we packed up the car and headed for Urgent Care. There is a slight risk of meningitis with cochlear implants, so that is always in the back of our mind when Drew is sick.
We were seen at Urgent Care right away and Drew was diagnosed with a viral infection. We were told to keep doing what we were doing and discharged right away. By the time we left Urgent Care, Drew's temperature was down to 101 and he seemed to be feeling better. We even ran a couple of quick errands on our way home and he seemed fine.
When we got home we gave Drew a bath and dressed him for bed. As Drew's Dad was reading Drew a story, he began to have a seizure. 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. Drew woke early this morning and seems to be feeling a lot better. I walked in to Drew's room this morning and he was sitting in his crib singing "Where oh where Barney?" Back to normal.
Drew still has a fever, but it is not nearly as high as yesterday. I'm hoping that we have weathered this storm.
We were seen at Urgent Care right away and Drew was diagnosed with a viral infection. We were told to keep doing what we were doing and discharged right away. By the time we left Urgent Care, Drew's temperature was down to 101 and he seemed to be feeling better. We even ran a couple of quick errands on our way home and he seemed fine.
When we got home we gave Drew a bath and dressed him for bed. As Drew's Dad was reading Drew a story, he began to have a seizure. 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. Drew woke early this morning and seems to be feeling a lot better. I walked in to Drew's room this morning and he was sitting in his crib singing "Where oh where Barney?" Back to normal.
Drew still has a fever, but it is not nearly as high as yesterday. I'm hoping that we have weathered this storm.
Thursday, July 5
"Is That It? I'll Just Pay Cash."
We got Drew's "Explanation of Benefits" for his bilateral, simultaneous cochlear implant operation in the mail on Tuesday. We had a little bet going on who would come closest to the total cost, but both Drew's Mom and I were way too low.
The total "Provider Charges" were a whopping $155,232.71! However, because our insurance company Anthem Blue Cross and Blue Shield evidently "gets it" regarding how important bilateral cochlear implants can be for a child (or adult), the total out-of-pocket cost to us is only $1,170.15.
As I constantly "meet" people from Spain, Sweeden, California, South America, and all over who are dealing with hearing loss, hearing aids or cochlear implants, one thing is clear. That is the fact that whether one has insurance that will cover their chosen "plan of attack" directly impacts how successful that plan will be.
We are the fortunate ones. Our insurance company (Anthem of Virginia) gave phone approval in under five minutes for a procedure that some families never get. (I'd like to thank those who have decided to cover this procedure, as it truly makes a difference for Drew. I'll never meet you, but if you happen to see this please know we feel you have done a great service to your customers.)
Some insurance companies (now the minority) don't cover cochlear implants at all. Other insurance companies claim that a second cochlear implant is experimental or not medically necessary, despite growing evidence that they do benefit the users.
Because most of us can't quite find it in the budget to write a check for $155,000, not obtaining insurance approval means that they won't be able to take advantage of the cochlear implant technology. Families often fight for months or years to get insurance approval, while precious weeks roll away. These vanishing months quickly close the window of time during which a young child can grasp the foundations of language, with it often closing before the appeals, court arguments and battles have concluded.
Make sure this does not happen to your child. If you have decided that a cochlear implant is best for your son or daughter, I want you to do two things:
#1 - Start the insurance approval process immediately. Don't wait. Don't assume. Request a copy of what is covered by your policy. Politely demand that your chosen surgeon or audiology team contact your insurance company right away for approval.
#2 - If you are having difficulty, contact the Let Them Hear Foundation. They help families battle insurance companies that deny cochlear implants (or a second implant) to those who need them. Perhaps you should contact them even if you don't foresee trouble, just to take advantage of their educational resources.
We are going to send our approval letter and explanation of benefits to the Let Them Hear Foundation so they can demonstrate to the other insurance companies that bilateral, simultaneous cochlear implants are being covered. I hope that in this way we will be able to help others "Turn on their ears".
The total "Provider Charges" were a whopping $155,232.71! However, because our insurance company Anthem Blue Cross and Blue Shield evidently "gets it" regarding how important bilateral cochlear implants can be for a child (or adult), the total out-of-pocket cost to us is only $1,170.15.
As I constantly "meet" people from Spain, Sweeden, California, South America, and all over who are dealing with hearing loss, hearing aids or cochlear implants, one thing is clear. That is the fact that whether one has insurance that will cover their chosen "plan of attack" directly impacts how successful that plan will be.
We are the fortunate ones. Our insurance company (Anthem of Virginia) gave phone approval in under five minutes for a procedure that some families never get. (I'd like to thank those who have decided to cover this procedure, as it truly makes a difference for Drew. I'll never meet you, but if you happen to see this please know we feel you have done a great service to your customers.)
Some insurance companies (now the minority) don't cover cochlear implants at all. Other insurance companies claim that a second cochlear implant is experimental or not medically necessary, despite growing evidence that they do benefit the users.
Because most of us can't quite find it in the budget to write a check for $155,000, not obtaining insurance approval means that they won't be able to take advantage of the cochlear implant technology. Families often fight for months or years to get insurance approval, while precious weeks roll away. These vanishing months quickly close the window of time during which a young child can grasp the foundations of language, with it often closing before the appeals, court arguments and battles have concluded.
Make sure this does not happen to your child. If you have decided that a cochlear implant is best for your son or daughter, I want you to do two things:
#1 - Start the insurance approval process immediately. Don't wait. Don't assume. Request a copy of what is covered by your policy. Politely demand that your chosen surgeon or audiology team contact your insurance company right away for approval.
#2 - If you are having difficulty, contact the Let Them Hear Foundation. They help families battle insurance companies that deny cochlear implants (or a second implant) to those who need them. Perhaps you should contact them even if you don't foresee trouble, just to take advantage of their educational resources.
We are going to send our approval letter and explanation of benefits to the Let Them Hear Foundation so they can demonstrate to the other insurance companies that bilateral, simultaneous cochlear implants are being covered. I hope that in this way we will be able to help others "Turn on their ears".
Wednesday, May 30
Quick Update
I am feeling a little better tonight. I decided to take Drew to the pediatrician to see how he was doing with the fluid in his ears.
Drew's doctor found that the fluid in the right ear has completely cleared. He could not see the left ear drum, as Drew has a bit of an ear wax problem. Drew is not running a fever and is in overall good spirits so we know that he does not have an ear infection now, and with the fluid clear in at least one ear we are feeling better.
Drew's doctor found that the fluid in the right ear has completely cleared. He could not see the left ear drum, as Drew has a bit of an ear wax problem. Drew is not running a fever and is in overall good spirits so we know that he does not have an ear infection now, and with the fluid clear in at least one ear we are feeling better.
Friday, May 25
Final Meeting With the ENT
We had our final appointment with the surgeon today, just under two weeks before Drew's surgery. Dr. Kang wanted to have the meeting to answer any last minutes questions we may have and do one final evaluation on Drew.
During the evaluation Dr. Kang found fluid in Drew's ears. He has had a runny nose for the past few days which we attributed to teething (Drew has cut two teeth in the last week). But Dr. Kang thinks that Drew has a touch of a cold and that is causing fluid to fill in his ears. If the fluid does not clear before surgery it does not really add any risk to the surgery itself, but should the fluid become infected before his surgery it will be postponed.
At this point we are getting really nervous. Nervous that Drew won't be able to have surgery on June 6th because of an ear infection. We are also getting really nervous about possible complications with the surgery. Drew's Dad is really worried about complications that would cause facial paralysis and severing the taste nerve. All are extremely rare, but none the less, worrisome.
We have full confidence in Dr. Kang - he is a very experienced and talented surgeon and is the chief of the department at Children's. We trust him fully, but we are Drew's parents so we worry about every detail. We are trying to make the best decisions for Drew and ultimately surgery is a necessary evil to allow Drew to hear. We'll be a lot better once June 7th is here.
Thursday, May 24
Under Two Weeks Until CI Surgery
Well, the countdown clock that Drew's Mom put to the right of the posts tells me that we are now only 13 days away from Drew's cochlear implant surgery.
I'm happy that it is almost here, but I've been getting progressively more nervous. The surgery itself is not very risky, but I suppose that even if it was a simple procedure of putting tubes in his ears I would be nervous as well. I just want to fast-forward two weeks so that I can know that he is comfortable and that everything is working correctly.
At that point we will have a lot of work ahead of us, but at least we can get started on that as opposed to waiting and waiting. He is now very active, very interested in watching us (and The Wiggles), and I can't wait to pair his obvious communication techniques with sound!
I believe that Drew is going to do great with his implants, and we're going to do whatever we can to help him. I just want to get through the next few weeks so we can begin together.
I'm happy that it is almost here, but I've been getting progressively more nervous. The surgery itself is not very risky, but I suppose that even if it was a simple procedure of putting tubes in his ears I would be nervous as well. I just want to fast-forward two weeks so that I can know that he is comfortable and that everything is working correctly.
At that point we will have a lot of work ahead of us, but at least we can get started on that as opposed to waiting and waiting. He is now very active, very interested in watching us (and The Wiggles), and I can't wait to pair his obvious communication techniques with sound!
I believe that Drew is going to do great with his implants, and we're going to do whatever we can to help him. I just want to get through the next few weeks so we can begin together.
Monday, May 14
Raise Your Hand!
Everyday in the US, approximately 1 in 1,000 newborns is born profoundly deaf, with another 2-3 of 1,000 babies born with partial hearing loss. While pregnant with Drew I worried about so many things, but not once did I ever worry about him being able to hear. Little did I know that it is the most common birth defect in the United States.
My life has been forever changed as a result of congenital hearing loss, but I have taken action to not let this hearing loss impact Drew's ability to communicate in the hearing world. There are amazing technological advances that people of all ages with hearing loss can take advantage of, but only if their hearing loss is properly diagnosed and treated.
May is Better Speech and Hearing Month and I recently learned of an awareness effort called "Raise Your Hand". If you have ever taken a hearing test yourself, you know that when you hear the tones in the headphones you raise your hand. If you or someone you know is dealing with the far reaching effects of a hearing loss, "Raise Your Hand" for better hearing and help do something about it!
My life has been forever changed as a result of congenital hearing loss, but I have taken action to not let this hearing loss impact Drew's ability to communicate in the hearing world. There are amazing technological advances that people of all ages with hearing loss can take advantage of, but only if their hearing loss is properly diagnosed and treated.
May is Better Speech and Hearing Month and I recently learned of an awareness effort called "Raise Your Hand". If you have ever taken a hearing test yourself, you know that when you hear the tones in the headphones you raise your hand. If you or someone you know is dealing with the far reaching effects of a hearing loss, "Raise Your Hand" for better hearing and help do something about it!
Monday, May 7
Please
Read this. Then you will understand why I feel the need to comment here.
. . .
Drew's Dad stumbled upon this blog post today about "Turn On My Ears" and he made the mistake tonight of letting me read it. I can not ignore this blog post, and feel the need to comment here.
I can imagine how "startled" I would feel if I simply read a few posts of someones blog and then proceeded to make assumptions and assertions from simply a few pieces of information.
First, if you would like to know where we came up with the name "Turn On My Ears," you can read this post. I personally like the name, as we are going to have the opportunity to take our perfect little boy and turn on his hearing, a moment that we will be able to witness (and video tape) for the first time!
Secondly, we started this blog when Drew was a little over six weeks old in November, 2006. He is, as I write this post, a little over seven months old, awaiting his simultaneous cochlear implant surgery. He will be eight months at the time of surgery and nine months when he is "turned on" for the first time. He will be eleven months old on August 24, 2007.
If you would like to know how a cochlear implant works (note it is cochlear implant, not cochlea implant), then you can read this.
Furthermore, we have taken all of the advice and education we have received from the specialists that are working with Drew. As we have learned from our teacher of the deaf through the Regional Infant Hearing Program, our therapists through Auditory Oral Children's Center and Columbus Children's Hospital, there is a lot of research that shows sign language is a great bridge to oral communication if established at birth. If you are interested in the communication, a.k.a. sign language, we have established to date with Drew, then read this.
Also, we have been quite clear and have understood from the very beginning that the cochlear implants alone will not allow Drew to communicate orally. It will take years of hard work and therapy to ensure that Drew will communicate orally and mainstream with his hearing peers. You can read posts on this subject here, here and here.
More than anything, Drew's Dad and I have made the decision to have Drew join the hearing world. We are his parents and we have to make decisions for both of our children that will give them the best opportunity to be all they can in this lifetime. We want him to hear us say "I love you". We want him to hear his big sister call him "Dew". We want our dog Eddie to wake him up with a bark. But more than anything we just want him to have all the abilities he needs to do what he wishes in this life. And "Turning On His Ears" will do that.
. . .
Drew's Dad stumbled upon this blog post today about "Turn On My Ears" and he made the mistake tonight of letting me read it. I can not ignore this blog post, and feel the need to comment here.
I can imagine how "startled" I would feel if I simply read a few posts of someones blog and then proceeded to make assumptions and assertions from simply a few pieces of information.
First, if you would like to know where we came up with the name "Turn On My Ears," you can read this post. I personally like the name, as we are going to have the opportunity to take our perfect little boy and turn on his hearing, a moment that we will be able to witness (and video tape) for the first time!
Secondly, we started this blog when Drew was a little over six weeks old in November, 2006. He is, as I write this post, a little over seven months old, awaiting his simultaneous cochlear implant surgery. He will be eight months at the time of surgery and nine months when he is "turned on" for the first time. He will be eleven months old on August 24, 2007.
If you would like to know how a cochlear implant works (note it is cochlear implant, not cochlea implant), then you can read this.
Furthermore, we have taken all of the advice and education we have received from the specialists that are working with Drew. As we have learned from our teacher of the deaf through the Regional Infant Hearing Program, our therapists through Auditory Oral Children's Center and Columbus Children's Hospital, there is a lot of research that shows sign language is a great bridge to oral communication if established at birth. If you are interested in the communication, a.k.a. sign language, we have established to date with Drew, then read this.
Also, we have been quite clear and have understood from the very beginning that the cochlear implants alone will not allow Drew to communicate orally. It will take years of hard work and therapy to ensure that Drew will communicate orally and mainstream with his hearing peers. You can read posts on this subject here, here and here.
More than anything, Drew's Dad and I have made the decision to have Drew join the hearing world. We are his parents and we have to make decisions for both of our children that will give them the best opportunity to be all they can in this lifetime. We want him to hear us say "I love you". We want him to hear his big sister call him "Dew". We want our dog Eddie to wake him up with a bark. But more than anything we just want him to have all the abilities he needs to do what he wishes in this life. And "Turning On His Ears" will do that.
Monday, April 23
Too Good to be True?
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. Drew will have simultaneous cochlear implant surgery on June 6. Although not confirmed, he should be activated sometime during the week of June 25. I can not believe that we have traveled to this point in our journey. During these months I have felt like we would never get to the point of having him implanted. Now there is a date on my calendar! We are getting closer to the day that Drew will hear.
Even more amazing (and I'm still pinching myself to make sure I am not dreaming) is that Dr. Kang's office received verbal approval for the surgery from our insurance company today. We should receive a written approval letter within the next week. We are going to celebrate when we receive the letter, but until Drew's ears have two electrode arrays in them nothing is certain. I have read horror stories from other parents receiving calls from their insurance company the week of the surgery with a change in the approval status.
The Cochlear Implant team will finalize Drew's candidacy at their May 8th meeting, but we do not anticipate any issues. At this point, we are just waiting for June 6th to come and praying that nothing changes in the approval status of Drew's implants. If all goes as planned, Drew will be hearing by the end of June. Someone pinch me!
Dr. Kang called today with a date for Drew's surgery. Drew will have simultaneous cochlear implant surgery on June 6. Although not confirmed, he should be activated sometime during the week of June 25. I can not believe that we have traveled to this point in our journey. During these months I have felt like we would never get to the point of having him implanted. Now there is a date on my calendar! We are getting closer to the day that Drew will hear.
Even more amazing (and I'm still pinching myself to make sure I am not dreaming) is that Dr. Kang's office received verbal approval for the surgery from our insurance company today. We should receive a written approval letter within the next week. We are going to celebrate when we receive the letter, but until Drew's ears have two electrode arrays in them nothing is certain. I have read horror stories from other parents receiving calls from their insurance company the week of the surgery with a change in the approval status.
The Cochlear Implant team will finalize Drew's candidacy at their May 8th meeting, but we do not anticipate any issues. At this point, we are just waiting for June 6th to come and praying that nothing changes in the approval status of Drew's implants. If all goes as planned, Drew will be hearing by the end of June. Someone pinch me!
Monday, April 9
Communicating with Drew
It's hard to believe that Drew is over six months old! These months have just flown by, partly because every day and week is consumed with appointments for Drew. I was encouraged this week when talking with the mother of an implanted four year old. She told me that her life is back to normal now - hardly any visits to doctors or therapists. There is hope! The good news is that our little boy continues to grow and with each days gets closer and closer to hearing!
We took Drew for an appointment with his mapping audiologist through Columbus last week. She put Drew in the sound booth again. He showed noticeable reaction to sound at 60 db again at several different frequencies while aided. He is getting minimal benefit from his hearing aids, but at least we know he is getting something. All of our evaluations are complete and Drew will be approved as a candidate for his cochlear implants at the May Cochlear Implant Team meeting. We are hoping to go into that meeting with a surgery date already on the calendar, so keep your fingers crossed.
We are trying daily to help facilitate Drew's communication. Our house is very loud these days, as the volume of Drew's talking is on a constant incline. It's funny how use to noise we have become, but I am sure that his loudness gets on the nerves of others. At this point, however, we are so happy that he is still vocalizing, since it has been almost seven months without him hearing any conversational chatter.
We also think that Drew is really starting to understand the sign language we are using with him. Every night when we are ready to give him a bath we say, "Drew, it's time for your bath." Then we sign, "bath." Whenever we do the sign for bath, Drew gets this huge smile on his face! It is so cute and we really do think that he is understanding us. I also think that he is starting to recognize the signs "eat" and "milk" together to know that he is about to be fed. He will stop crying when he sees these signs. While I am not a huge proponent of sign language (because we are choosing an oral deaf education approach), I do think that it will help to bridge the gap in Drew's communication while he is learning to listen and communicate with his implants.
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.
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
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!
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!
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 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.
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.
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.
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
Genetics
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.
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.
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