If you would have asked me this a year ago, I would have told you that I didn't have a clue what it was. I had never even heard of it. I hate to even admit that I didn't know what mitochondria were. Unfortunately, I can now say I know what it is. However, so many people still don't know about mitochondrial disease, and we need to raise awareness so that a cure can be found.
Mitochondrial disease is a disease that affects your energy. If your mitochondria aren't working, then your body doesn't have the energy it needs to function. A friend that we have met on this journey has a son and daughter with mitochondrial disease, too, and she explained it like this......
The mitochondria are equivalent to a battery. They make the power for things to work. When the TV remote's battery dies, the remote can't do a thing until the battery is replaced. You may be able to coax a few more uses out of that battery. You take the cover off and spin the batteries. You shake and hit the remote. If you stand in just the right spot, you may get the volume adjusted a bit. But, ultimately, you know the battery is done. The same works for our mitochondria. When they are sick, they lose the ability to power our body. We can do little things to improve their function... take vitamins, avoid stressors, preserve the energy used, but ultimately, the mitochondria are failing. But, unlike the TV remote, there is no way to replace the power source. No fix. No treatment. No cure.
My hope and dream is to find a cure. I hope to one day hear Cal talk. I hope to one day see him walk. I hope for the day that he can give me a hug. I hope for so many things that so many take forgranted. I hope that some day we will talk about the medical obstacles that he has overcome. I hope for a miracle!
Our only hope for finding that cure is by raising awareness and supporting research so that a cure can be found. There will be a walk in Houston on February 5th to raise awareness for this disease. It is very similar to the walks for cancer and other diseases. We have a team that will be walking in honor of Cal. If you would be interested in going to Houston and walking with us, we would LOVE to have you! We will have shirts made for our team that we will wear for the walk. Just let me know if you want to join us. If you can't be there, there is a virtual walker option where you could walk with us on the computer from your home. I will let you know more about that the closer it gets if you are interested. If you would like to help but can't walk with us, we would appreciate any donations. Your donations will go towards finding a cure for this disease. Any support whether it be walking with us or donating to the cause is appreciated. Please help us spread the word and put an end to this devastating disease!
Wednesday, September 29, 2010
Sunday, September 26, 2010
A Year Later
Friends & Family~
It has been awhile since I have posted on here (nearly a year). I have wanted to post updates over the past year but could not find the time to sit down and do it. I am finding the time now though. Better late than never...right?
As many of you know, our family has been through a lot over the past year. Last year in November when my friend Katie started this blog for us, it was our first visit to Houston with Cal. We had taken Cal to Houston for a second opinion. We were trying to find out what was causing his problems (seizures, no tone, etc.). We had definitely gone to the right place because the doctors we found in Houston were definitely devoted to finding what was wrong with our sweet boy. And that they did. After many tests in November and a muscle biopsy in January, our diagnosis came in February...mitochondrial disorder. It is not what we wanted to hear but we believe in a God who heals and continued to pray for healing for Cal. We wound up in the hospital again in May. We were there for two weeks. During that time, Cal had another MRI done. The results this time showed "spots" developing on his brain which led the doctor to diagnose Cal even further...Leigh's Syndrome. The doctor was very sensitive to our feelings but at the same time very honest. She told us that it seemed to be progressing quickly and that it was terminal. This is not what any parent wants to hear about their son or daughter! It was out of our control though, and once again, we continued to pray for healing. While we were there in May, Cal also had a "G" button put in. It is our way to feed him and give him his medicines. Once home from the hospital, we continued to try and feed him bottles. However, he can no longer eat by mouth and takes everything through his button. In June, we went back to Houston for a sleep study. Cal has a very difficult time sleeping at night. We were trying to figure out if there was something causing him not to sleep. The result came back that he was having trouble breathing at night. So, they ordered us oxygen for him at night. He fights it though and does not like it at all. We just recently went down for a second sleep study a week ago. This time they put a bi-pap machine on him. The pulmonologist seemed to think this would help him sleep better than just the oxygen. We were hopeful but it turned out to be awful! He cried all night. We are still fighting the sleep battle. He is starting to have nights were he will sleep all night but not consistently yet.
We are back home now and enjoying every minute that we have together. Marcus is in his last year of law school, and I could not be more proud of him. He is a wonderful dad and husband. I am still teaching. I love it but wish I could stay home with my sweet baby.
We appreciate the continued prayers, love, and support. Even though I haven't posted in a year, I know many of you have not stopped praying for Cal. We serve a loving
God and believe in His healing and know that he performs miracles every day.
Courtney
It has been awhile since I have posted on here (nearly a year). I have wanted to post updates over the past year but could not find the time to sit down and do it. I am finding the time now though. Better late than never...right?
As many of you know, our family has been through a lot over the past year. Last year in November when my friend Katie started this blog for us, it was our first visit to Houston with Cal. We had taken Cal to Houston for a second opinion. We were trying to find out what was causing his problems (seizures, no tone, etc.). We had definitely gone to the right place because the doctors we found in Houston were definitely devoted to finding what was wrong with our sweet boy. And that they did. After many tests in November and a muscle biopsy in January, our diagnosis came in February...mitochondrial disorder. It is not what we wanted to hear but we believe in a God who heals and continued to pray for healing for Cal. We wound up in the hospital again in May. We were there for two weeks. During that time, Cal had another MRI done. The results this time showed "spots" developing on his brain which led the doctor to diagnose Cal even further...Leigh's Syndrome. The doctor was very sensitive to our feelings but at the same time very honest. She told us that it seemed to be progressing quickly and that it was terminal. This is not what any parent wants to hear about their son or daughter! It was out of our control though, and once again, we continued to pray for healing. While we were there in May, Cal also had a "G" button put in. It is our way to feed him and give him his medicines. Once home from the hospital, we continued to try and feed him bottles. However, he can no longer eat by mouth and takes everything through his button. In June, we went back to Houston for a sleep study. Cal has a very difficult time sleeping at night. We were trying to figure out if there was something causing him not to sleep. The result came back that he was having trouble breathing at night. So, they ordered us oxygen for him at night. He fights it though and does not like it at all. We just recently went down for a second sleep study a week ago. This time they put a bi-pap machine on him. The pulmonologist seemed to think this would help him sleep better than just the oxygen. We were hopeful but it turned out to be awful! He cried all night. We are still fighting the sleep battle. He is starting to have nights were he will sleep all night but not consistently yet.
We are back home now and enjoying every minute that we have together. Marcus is in his last year of law school, and I could not be more proud of him. He is a wonderful dad and husband. I am still teaching. I love it but wish I could stay home with my sweet baby.
We appreciate the continued prayers, love, and support. Even though I haven't posted in a year, I know many of you have not stopped praying for Cal. We serve a loving
God and believe in His healing and know that he performs miracles every day.
Courtney
Subscribe to:
Posts (Atom)