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.
Saturday, March 31
Wednesday, March 28
Implant Failure
Through this journey there have been many surprises, and there will be many more in the days, months and years to come. One thing I have been most surprised about is the network of parents of children with cochlear implants I have found through the Internet. These parents have been a great source of information and, through their children, inspiration for me.
Mom-to-toes, Heather, Shiloh, Kristen, just to name a few. So to them and others like them, I am thankful. Thankful that they are willing to share their children's stories with Mom's like me. I don't know if they realize how much I rely on their stories in my own journey with Drew.
In our journey with Drew there are going to be times where we experience a set-back. I am thankful that I have such a wonderful network of parents to lean on in every situation. I recently learned that Jack, one little CI boy from Illinois, had a device failure of his Advanced Bionics implant. He was implanted three years ago. Please keep him and his family in your thoughts and prayers as they go through this difficult time of an ex-implant and re-implant.
Mom-to-toes, Heather, Shiloh, Kristen, just to name a few. So to them and others like them, I am thankful. Thankful that they are willing to share their children's stories with Mom's like me. I don't know if they realize how much I rely on their stories in my own journey with Drew.
In our journey with Drew there are going to be times where we experience a set-back. I am thankful that I have such a wonderful network of parents to lean on in every situation. I recently learned that Jack, one little CI boy from Illinois, had a device failure of his Advanced Bionics implant. He was implanted three years ago. Please keep him and his family in your thoughts and prayers as they go through this difficult time of an ex-implant and re-implant.
CT Complete...Barely
Drew had his CT scan today, a critical step in moving forward as a cochlear implant candidate. This will allow Dr. Kang to see the anatomy of Drew's inner ear, and to ensure that Drew has a cochlea for the electrode array of the implant to be inserted in.
When the CT scan was scheduled we were told that Drew would need to be sedated because he would need to remain still for the scan. To say that the sedation did not go as planned is an understatement. Drew managed to fight off all of the medicine he was given, never was drowsy, let alone sedated, and remained awake for the entire procedure. To say that Drew's Dad and I were concerned that they would have to reschedule the scan would be an understatement.
Thanks to the wonderful nurse and radiologist at Columbus Children's, Drew was still enough for the scan to be completed today. The nurse and radiologist managed to take a pacifier (which Drew has never had before), dip it in cherry syrup, place it in his mouth, securing it temporarily by using medical tape wrapped around his head. Then they strapped him to the table to reduce as much movement as possible, and ran the scan. Drew was amazing, allowing all of this to happen to him while starving, since he had not been allowed to eat after 2 AM!
We are expecting the results in the next two to four days. Dr. Kang told me that he would call with the results and assuming the scan comes back as we anticipate, we should have a surgery date within the next few days!
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 20
Drew Heard Something!
Today we had our monthly parent education meeting through the Regional Infant Hearing Program here in Columbus. I should say bi-monthly in this case, since we were snowed in for our February meeting! Our parent educator had not seen Drew since January, so I think she was really excited to see how much he has grown in the last two months. All of the staff at the AG Bell School is always smitten with our charming little boy and he put on a nice little cooing show for them before our appointment!
Today the teacher and the audiologist decided to put Drew in the "booth," a ritual that I am sure to become accustom to in the coming months and years. This sound booth allows them to test what Drew is able to hear while wearing his hearing aids. They ran the test across different frequencies and decibels. I am happy to report that we saw noticeable reactions (did you notice that was plural?) to different sounds, including a drum at 60db and a set of maracas at 55db! It was so much fun for me to watch him react to the sound - this was the first time that I actually could see a reaction in him. I hope to have many more experiences like today!
The teacher tested some sounds several times to make sure we were really seeing a reaction from Drew. Testing a six-month-old baby is very difficult, so you have to look not only for a reaction (such as turning in the direction of the sound), but also for any change in behavior while the sound is playing or once it is absent. One time Drew reacted by jumping while I was holding him on my lap. Another time, his breathing got really fast, like the sound was stressing him out! Then his breathing slowed when the sound went away! Both the teacher and audiologist were laughing about the idea of putting a child into respiratory distress from a hearing test - that would be a first!
I'm not getting myself too excited about the test today, as this level is still not enough to get Drew's hearing into the speech banana for developing his communication, but it is very encouraging that he is able to detect some sound! And it makes putting the hearing aids in his ears each morning a little more worthwhile. Anything we can do now to stimulate Drew's auditory nerve is only going to help him once he receives his cochlear implants!
It was a beautiful day...the sun was out and it was a reasonably warm day. Spring is almost here. Oh, and Drew heard something!
Today the teacher and the audiologist decided to put Drew in the "booth," a ritual that I am sure to become accustom to in the coming months and years. This sound booth allows them to test what Drew is able to hear while wearing his hearing aids. They ran the test across different frequencies and decibels. I am happy to report that we saw noticeable reactions (did you notice that was plural?) to different sounds, including a drum at 60db and a set of maracas at 55db! It was so much fun for me to watch him react to the sound - this was the first time that I actually could see a reaction in him. I hope to have many more experiences like today!
The teacher tested some sounds several times to make sure we were really seeing a reaction from Drew. Testing a six-month-old baby is very difficult, so you have to look not only for a reaction (such as turning in the direction of the sound), but also for any change in behavior while the sound is playing or once it is absent. One time Drew reacted by jumping while I was holding him on my lap. Another time, his breathing got really fast, like the sound was stressing him out! Then his breathing slowed when the sound went away! Both the teacher and audiologist were laughing about the idea of putting a child into respiratory distress from a hearing test - that would be a first!
I'm not getting myself too excited about the test today, as this level is still not enough to get Drew's hearing into the speech banana for developing his communication, but it is very encouraging that he is able to detect some sound! And it makes putting the hearing aids in his ears each morning a little more worthwhile. Anything we can do now to stimulate Drew's auditory nerve is only going to help him once he receives his cochlear implants!
It was a beautiful day...the sun was out and it was a reasonably warm day. Spring is almost here. Oh, and Drew heard something!
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