There have been many decisions made along this journey so far, but one of the more easy ones is to have Drew bilaterally implanted. While this is a new practice, studies show that having both ears implanted positively impacts the recipients ability to localize sound and hear in crowded places.
Most pre-lingual, single cochlear implant recipients develop speech and language equal or almost equal to that of their hearing peers, but they still struggle in "cocktail" party settings, where loud background noise makes it hard for them to hear. This study shows the benefit of two implants for sound localization as well as hearing in crowded places.
The one struggle we are having is whether or not to have Drew implanted simultaneously or sequentially. There is not a lot of research out there on bilateral implants, and the research that is there is primarily for sequential implantation. I know that there was an 11-month old simultaneously implanted in Columbus in late December, the first in this area. What I can not understand are the risks associated with the simultaneous implants. Wouldn't it make sense to only have one surgery, if the risks were the same as having one implant?
We are continuing to gather information to make an educated decision for Drew. If you have any information regarding simultaneous bilateral implantation, please leave a link in the comments.
Thursday, February 15
Tuesday, February 13
The Research Project is A Go!
I talked with the team doing the research project on cochlear implant candidates at Cincinnati Children's late last week, and have been assured that Drew's participation in the study will in no way impact our time line for having Drew implanted. As a result, we have decided to have Drew participate in the study.
Drew's MRI, which is for the research study and to gain insurance approval, will be on June 28th at 8 AM. From there, we will submit for insurance approval and after that the surgery will be scheduled. Dr. Choo assured us that if we are at all unhappy with the time line, he can directly impact his surgery schedule to accommodate us since we are helping with his research project. We would like to have Drew implanted no later than mid-August.
In addition, Drew will be having another round of evaluations, similar to the ones he had back in December. Those are scheduled for June 6th. His speech pathologist and developmental/behavioral doctor would like to see him again to make sure he is developing on schedule.
If you would like more information on the research study being conducted at Cincinnati Children's, please click here.
Drew's MRI, which is for the research study and to gain insurance approval, will be on June 28th at 8 AM. From there, we will submit for insurance approval and after that the surgery will be scheduled. Dr. Choo assured us that if we are at all unhappy with the time line, he can directly impact his surgery schedule to accommodate us since we are helping with his research project. We would like to have Drew implanted no later than mid-August.
In addition, Drew will be having another round of evaluations, similar to the ones he had back in December. Those are scheduled for June 6th. His speech pathologist and developmental/behavioral doctor would like to see him again to make sure he is developing on schedule.
If you would like more information on the research study being conducted at Cincinnati Children's, please click here.
Monday, February 12
What About Brian? - Link
There is a new show on ABC called "What About Brian?" that has a storyline on a child with hearing loss. I was able to watch the last episode, and it made me cry to see the girl playing, isolated from those around her because she can not hear! The little girl was born with profound hearing loss and her parents are deciding on whether or not to have cochlear implant surgery done on her. It airs on Monday nights at 10 PM.
In the show, the daughter's daycare provider tells the parents that their daughter does not respond when she calls her name and is concerned there might be a problem. The parents take her to the pediatrician. The parents discuss their concerns with the physician and mention that she passed her newborn hearing screening. When the child receives a diagnosis of profound hearing loss, the parents discuss the option of a cochlear implant with a pediatrician friend. At the end of the last episode, they've decided in favor of the surgery.
This is a great opportunity to make a difference in the lives of children with hearing loss! There will be featured public service announcements (PSA) on early hearing detection and intervention following some episodes. I can not tell you how important it is to have your child's hearing screened. We NEVER would have thought that our child would have hearing loss. I am so excited that there is a show bringing awareness to this birth defect. Hearing loss is the #1 birth defect in America today, and yet it is so rarely mentioned.
The show has declining viewership right now, so its' season is now scheduled to end early. I thought you might be interested in watching. I can't wait to watch the television journey and see how it compares with the real life journey we are on with Drew!
In the show, the daughter's daycare provider tells the parents that their daughter does not respond when she calls her name and is concerned there might be a problem. The parents take her to the pediatrician. The parents discuss their concerns with the physician and mention that she passed her newborn hearing screening. When the child receives a diagnosis of profound hearing loss, the parents discuss the option of a cochlear implant with a pediatrician friend. At the end of the last episode, they've decided in favor of the surgery.
This is a great opportunity to make a difference in the lives of children with hearing loss! There will be featured public service announcements (PSA) on early hearing detection and intervention following some episodes. I can not tell you how important it is to have your child's hearing screened. We NEVER would have thought that our child would have hearing loss. I am so excited that there is a show bringing awareness to this birth defect. Hearing loss is the #1 birth defect in America today, and yet it is so rarely mentioned.
The show has declining viewership right now, so its' season is now scheduled to end early. I thought you might be interested in watching. I can't wait to watch the television journey and see how it compares with the real life journey we are on with Drew!
Tuesday, February 6
The Prayers Worked!
The pediatrician called today and Drew's hip ultrasound showed no abnormalities and no dislocation! We are so relieved. We were worrying ourselves unnecessarily last night, but with the unexpected diagnosis of his hearing loss, we have learned not to take anything for granted.
Thank you for all of your kind thoughts and prayers for Drew. They certainly paid off!
Thank you for all of your kind thoughts and prayers for Drew. They certainly paid off!
Monday, February 5
Say a Little Prayer for Drew
I took Drew for his four month check-up on Friday. He is already 15 pounds, 10 ounces, which puts him over the sixtieth percentile in weight! Not bad for a boy born three weeks early. The doctor thought that Drew's development thus far is right on par for a four month old.
The doctor did notice a "clunk" in Drew's left hip upon examination, and recommended further testing. I took him today for an ultrasound of his hips to determine whether or not he has developmental hip dysplasia. The nurse that ran the ultrasound could not give me any results, as the pictures must be read by a doctor. I should receive a call tomorrow from the pediatricians office with the diagnosis.
While I am trying to remain optimistic, it is very hard. One of every one thousand babies born has developmental hip dysplasia; coincidentally, that is the same number of babies born with profound hearing loss. I know it can happen, and I know it can happen to my child.
Please keep Drew in your thoughts and prayers. If you would like to know more about this congenital condition and the treatment options, please click here.
The doctor did notice a "clunk" in Drew's left hip upon examination, and recommended further testing. I took him today for an ultrasound of his hips to determine whether or not he has developmental hip dysplasia. The nurse that ran the ultrasound could not give me any results, as the pictures must be read by a doctor. I should receive a call tomorrow from the pediatricians office with the diagnosis.
While I am trying to remain optimistic, it is very hard. One of every one thousand babies born has developmental hip dysplasia; coincidentally, that is the same number of babies born with profound hearing loss. I know it can happen, and I know it can happen to my child.
Please keep Drew in your thoughts and prayers. If you would like to know more about this congenital condition and the treatment options, please click here.
Saturday, February 3
Research Project
Dr. Choo and Cincinnati Children's Hospital are currently conducting a research study on children, cochlear implants and the development of speech and listening post implants. Dr. Choo would like to have Drew participate in this research study because Drew's hearing loss is genetic, meaning that he has no known medical issues besides his hearing loss.
In order to participate in the study, Dr. Choo's team would like to run an MRI on Drew when he is nine months old. The issue is that we can not move for insurance approval of the cochlear implant surgery without completing the MRI. If we were not part of the study, we could have the MRI done when Drew is six months old and move toward insurance approval. Insurance approval for the surgery can take a month or longer and Dr. Choo's office will not schedule the surgery until it is approved by insurance. This can add an additional two months because he is generally booked one to two months in advance. This means that after the MRI, it could be three months or longer before the surgery will take place and another two weeks or longer until Drew's hearing will be turned on for the first time.
We feel very strongly about participating in the research project. There have been many families willing to participate in research studies in the past for the cochlear implant technology to be where it is today. But, we are not willing to do so at the expense of getting Drew's hearing turned on as quickly as possible. Therefore, we have asked to have Drew's surgery scheduled in advance of the MRI and insurance approval. This way, we will be on Dr. Choo's schedule, can participate in the research study, and are assured that his office will gain insurance approval in time for the surgery.
We have asked for the surgery to be in late July, when Drew will be ten months old. This way, we can have him "turned on" when he is eleven months old, and hopefully have his mapping well established by the time he is one year old, when language really starts to be established. We should hear back from Dr. Choo's office this coming week in regard to our request. If we are not allowed to go ahead and schedule the surgery, Drew's Dad and I have agreed that we are not going to participate in the research project, so we can move forward with getting the insurance approval we need to have Drew implanted.
In order to participate in the study, Dr. Choo's team would like to run an MRI on Drew when he is nine months old. The issue is that we can not move for insurance approval of the cochlear implant surgery without completing the MRI. If we were not part of the study, we could have the MRI done when Drew is six months old and move toward insurance approval. Insurance approval for the surgery can take a month or longer and Dr. Choo's office will not schedule the surgery until it is approved by insurance. This can add an additional two months because he is generally booked one to two months in advance. This means that after the MRI, it could be three months or longer before the surgery will take place and another two weeks or longer until Drew's hearing will be turned on for the first time.
We feel very strongly about participating in the research project. There have been many families willing to participate in research studies in the past for the cochlear implant technology to be where it is today. But, we are not willing to do so at the expense of getting Drew's hearing turned on as quickly as possible. Therefore, we have asked to have Drew's surgery scheduled in advance of the MRI and insurance approval. This way, we will be on Dr. Choo's schedule, can participate in the research study, and are assured that his office will gain insurance approval in time for the surgery.
We have asked for the surgery to be in late July, when Drew will be ten months old. This way, we can have him "turned on" when he is eleven months old, and hopefully have his mapping well established by the time he is one year old, when language really starts to be established. We should hear back from Dr. Choo's office this coming week in regard to our request. If we are not allowed to go ahead and schedule the surgery, Drew's Dad and I have agreed that we are not going to participate in the research project, so we can move forward with getting the insurance approval we need to have Drew implanted.
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