Cole's Cause
Where do we go next?
So like I said Coles Doctors feel like he is ahead of science. Therefore they want to send him to one of two Doctors that are leading the way in new diseases based off from Coles gene mutations. One in Akron Ohio one in the UK!! After doing our research both men are brilliant and we figured we would start with Ohio. When do we go well that all depends on what our Insurance Company will cover or how fast we can come up with the money... which we unfortunately just do not have right now. We are looking into Angel Flights and having a yardsale with everything that is not a necessity in our house this weekend to try and raise the money. We will let you know when we make it!!
Where have we been? Well in the last 20 months we have really racked up the miles. We have been all over Vermont, spent alot of time in Boston, flown to Detroit and driven to Philadelphia and spent a week at the National Institutes of Health in Bethesda Maryland all in an attempt to get Cole seen by the best of the best. Some Doctors we have gotten by chance and some we really researched. Some have treated us like another number but a handful have gone above and beyond. Those are the Doctors that will always hold a special place in our hearts.
Dr. Brack
3rd times a charm definitely rang true for us when it came to finding a Pediatrician. Cole first saw Dr. Brack around 3 months old after 2 previous Pediatricians hadn't listened to or respected our concerns about Cole's noisy breathing. Dr. Brack referred him to an ENT and low and behold Cole's noisy breathing required surgery.
That was only the beginning. Dr. Brack has been an amazing Doctor and advocate for Cole. She has always respected our thoughts and observations. She has gone out of her way to check in on us during our many hospital stays. By either calling or popping in if the hospital is within driving distance. She has called us on a Sunday afternoon to let us know of our acceptance in the NIH program after she took the time to fill out the application that got us accepted in the first place. There are very few Doctors we have come across where we truly value and trust everything that they tell us. Dr. Brack has been a God Send for us and for Cole.
Jennifer Kelly our Favorite RN
If it weren't for Jen we wouldn't have met Dr. Brack and who knows where we would be! She's kind of like our own private Nurse, whether she wants to be or not:) She has been there for us through this whole thing in more ways than we probably even know! She's driven us to the hospital in the middle of a blizzard, she has helped us with our research, helped us fight our insurance, helped us understand medical procedures and definitions, and encouraged us to keep advocating for Cole. I am not sure how we would have made it through this with our sanity in tact if it weren't for Jen! She'd probably say thats what family is for, but we know not every family is lucky enough to have someone as amazing as she is. We are so grateful for all that she has done and continues to do for Cole!
Dr. Smith
Coles first surgery was very nerve racking for us, but we found comfort knowing he was in the hands of Dr. Smith. Chris and I both felt at ease about our decision after speaking with Dr. Smith he knew we were nervous and was completely honest with us when asked "if this was your child what would you do." When Cole was hospitalized back in January Dr. Smith was the first Doctor to visit us in the ER while we waited for an available room, and continued to check in on us throughout our stay. He is one of the Doctors that we truly would recommend to anyone.
Dr. Mukai
We are forever grateful to Dr. Mukai. He single handedly saved Cole's vision.
Originally we had seen a local Doctor about Cole's eye condition and upon examination we were told the following "Well its one of two things, either FEVR or bilateral Coats disease. Cole's right eye is a lost cause and his left he will be lucky if he can read the big E on the eye chart when he is older. This is something I usually only see in 3rd world countries where there is lots of incest and I haven't seen something this bad in 10 years." As you can imagine Chris and I were devastated and it took all my will power not to stand up and scream "are you kidding me? Chris is clearly not my brother how is that relevant to my child being blind???" Needless to say we opted not to go back to her and instead headed to Boston Childrens, after his examination at Boston Childrens we were sent directly to Mass Eye and Ear where we first met Dr. Mukai.
From the very first day Dr. Mukai gave us hope. He did not know what was wrong with Cole's eyes, he did not pretend to either. What he did tell us was that he would do whatever he could to try and save Cole's vision and find out what was wrong. Here we are 5 or 6 surgeries deep and Cole is capable of having 20/20 vision in his left eye and still has vision although it may be limited in his right eye. Cole made Dr. Mukais day the last time we saw him because he couldn't believe how good his eyes looked (for Cole) now compared to when he first met us. Although at our first visit he didn't think there would be anything he could do to help Cole he never let on to us. Like I said he gave us hope and sometimes hope is all you need to make it through the day. Cole may have made Dr. Mukais day but how do you thank someone that has truly single handled made your child's quality of life better? We are so fortunate to have Dr. Mukai in Cole's life.
Dr. Chugani
Dr. Chugani is another amazing man. We contacted Dr. Chugani after researching the top Neuros for Cole. Many of you know we went to Michigan earlier this year and this is the man we went to see. Dr. Chugani devoted his whole morning to us to go over Cole's PET scan images and offer his insight on what the images showed. Although the images were not great he reminded us that miracles do exist by telling us of his patients that have beaten the odds. He was personable! He even offered us a ride to the airport!!!!! Most Doctors you can't even get on the phone but this Doctor offered us a ride? He still answers my off the wall questions. I still e-mail Dr. Chugani out of the blue saying well I did this or ate that when I was pregnant do you think thats what happened?? Within 15 minutes I have a response which typically reads something like "No Hanna lots of Mom's do that when they are pregnant. I don't think thats what happened." We are thankful to have had the oppurtunity to meet with Dr. Chugani and pick his brilliant brain.
Glenn Doman
Many of you also know that we recently attended the What to do about you Brian Injured Child Course at the Institutes for the Acheivement of Human Potential. Founded by Glenn Doman.
Dr. Brack
3rd times a charm definitely rang true for us when it came to finding a Pediatrician. Cole first saw Dr. Brack around 3 months old after 2 previous Pediatricians hadn't listened to or respected our concerns about Cole's noisy breathing. Dr. Brack referred him to an ENT and low and behold Cole's noisy breathing required surgery.
That was only the beginning. Dr. Brack has been an amazing Doctor and advocate for Cole. She has always respected our thoughts and observations. She has gone out of her way to check in on us during our many hospital stays. By either calling or popping in if the hospital is within driving distance. She has called us on a Sunday afternoon to let us know of our acceptance in the NIH program after she took the time to fill out the application that got us accepted in the first place. There are very few Doctors we have come across where we truly value and trust everything that they tell us. Dr. Brack has been a God Send for us and for Cole.
Jennifer Kelly our Favorite RN
If it weren't for Jen we wouldn't have met Dr. Brack and who knows where we would be! She's kind of like our own private Nurse, whether she wants to be or not:) She has been there for us through this whole thing in more ways than we probably even know! She's driven us to the hospital in the middle of a blizzard, she has helped us with our research, helped us fight our insurance, helped us understand medical procedures and definitions, and encouraged us to keep advocating for Cole. I am not sure how we would have made it through this with our sanity in tact if it weren't for Jen! She'd probably say thats what family is for, but we know not every family is lucky enough to have someone as amazing as she is. We are so grateful for all that she has done and continues to do for Cole!
Dr. Smith
Coles first surgery was very nerve racking for us, but we found comfort knowing he was in the hands of Dr. Smith. Chris and I both felt at ease about our decision after speaking with Dr. Smith he knew we were nervous and was completely honest with us when asked "if this was your child what would you do." When Cole was hospitalized back in January Dr. Smith was the first Doctor to visit us in the ER while we waited for an available room, and continued to check in on us throughout our stay. He is one of the Doctors that we truly would recommend to anyone.
Dr. Mukai
We are forever grateful to Dr. Mukai. He single handedly saved Cole's vision.
Originally we had seen a local Doctor about Cole's eye condition and upon examination we were told the following "Well its one of two things, either FEVR or bilateral Coats disease. Cole's right eye is a lost cause and his left he will be lucky if he can read the big E on the eye chart when he is older. This is something I usually only see in 3rd world countries where there is lots of incest and I haven't seen something this bad in 10 years." As you can imagine Chris and I were devastated and it took all my will power not to stand up and scream "are you kidding me? Chris is clearly not my brother how is that relevant to my child being blind???" Needless to say we opted not to go back to her and instead headed to Boston Childrens, after his examination at Boston Childrens we were sent directly to Mass Eye and Ear where we first met Dr. Mukai.
From the very first day Dr. Mukai gave us hope. He did not know what was wrong with Cole's eyes, he did not pretend to either. What he did tell us was that he would do whatever he could to try and save Cole's vision and find out what was wrong. Here we are 5 or 6 surgeries deep and Cole is capable of having 20/20 vision in his left eye and still has vision although it may be limited in his right eye. Cole made Dr. Mukais day the last time we saw him because he couldn't believe how good his eyes looked (for Cole) now compared to when he first met us. Although at our first visit he didn't think there would be anything he could do to help Cole he never let on to us. Like I said he gave us hope and sometimes hope is all you need to make it through the day. Cole may have made Dr. Mukais day but how do you thank someone that has truly single handled made your child's quality of life better? We are so fortunate to have Dr. Mukai in Cole's life.
Dr. Chugani
Dr. Chugani is another amazing man. We contacted Dr. Chugani after researching the top Neuros for Cole. Many of you know we went to Michigan earlier this year and this is the man we went to see. Dr. Chugani devoted his whole morning to us to go over Cole's PET scan images and offer his insight on what the images showed. Although the images were not great he reminded us that miracles do exist by telling us of his patients that have beaten the odds. He was personable! He even offered us a ride to the airport!!!!! Most Doctors you can't even get on the phone but this Doctor offered us a ride? He still answers my off the wall questions. I still e-mail Dr. Chugani out of the blue saying well I did this or ate that when I was pregnant do you think thats what happened?? Within 15 minutes I have a response which typically reads something like "No Hanna lots of Mom's do that when they are pregnant. I don't think thats what happened." We are thankful to have had the oppurtunity to meet with Dr. Chugani and pick his brilliant brain.
Glenn Doman
Many of you also know that we recently attended the What to do about you Brian Injured Child Course at the Institutes for the Acheivement of Human Potential. Founded by Glenn Doman.
We are so grateful that Sheri took the time to write us and reccomend this seminar to us.
We learned so much in the week that we were there. We now have the tools to help Cole become well. We know that we have a long road ahead of us but we are prepared. We know that Cole will be able to crawl and creep, walk and run. He will be seizure free without medication and he will hear without hearing aids. Of course it won't happen over night. But it has taken him 19 months to develop a neurological age of 5 months making him severely brain injured.
The Institutes gave us hope and we could not ask for a better group of people supporting us on our journey. They are so knowledgable and so caring and we are forever grateful to Glenn Doman for daring to step outside the box. For not giving up no matter how much he was criticized and for dedicating his life to our brain injured children. You are absolutely amazing and we feel so lucky to have had the oppurtunity to meet and learn from you. We would also like to thank the entire Doman family and teh Staff at the Institutes for their dedication to our children and our families. It is a scary place to be in when you are told that your child is disabled and there is nothing you can do about it. You single handedly took the fear away by believing in us. You see the same thing in our childrens eyes that we see and like us refuse to give up on them. What you have given us in one week will change our lives forever. Thank you will never do justice to how appreciative we are.
