Family
Thursday, May 24, 2012
Wednesday, May 23, 2012
Starting from day one....
As you all know our son Talan has had such a difficult little life. He started out as a 29 weeker, his weight was only 2 lbs 10 oz.. He fought all the odds, with having heart surgery at only 2 weeks old and multiple other problems as a preemie. He has had a struggle from day one but has been able to fight hard all of his life. He has always had health problems, but he fought through them and we just thought that it was normal to have him sick as much as he was. The Dr.s always told us to keep him away from a lot of people during the first year of life to give him a chance to fight through sicknesses that people carried and to build his immune system.
May 23,2012
As Talan grew up, he had a full of life personality and was able to play sports and have fun with friends. He was a natural athlete and had many talents. He also loved to ride his four wheeler with friends at the dunes and out and about around our house. He was always full of life and full of shit, I would call it! He has such a funny personality and always was cracking jokes.
When Talan was a freshman he started having more health problems with sinus' and had two sinus surgeries back to back within six months of each other to get rid of staph. He still to this day fights problems with his sinus'. He made the basketball team for Bear River as a Freshman and played well even though he was sick. He also played football that year and did very well.
His sophomore year he made the football team and basketball team and also played very well and loved to play his sports. In fact Talan even lettered in football his sophomore year. There were only 3 sophs that lettered that year and he was one of them. We were so proud of him. As the year came to an end at school, football camp was coming up. He went to football camp and he practiced and practiced. At one of the practices he was in a drill of blocking and he hit head on with another player and he said he practically decleated the opponent. Ha ha..... but as he went to stand up he really couldnt, his back had a severe pain and so did his leg and it was numb. He was not able to play the rest of the camp. Come to find out he had broke his back. He was in a turtle shell for 3 months to try to heal it but it did not work. He ended up having back surgery.
Talan ended up with 4 screws and wire to hold him together. After this his health went into a tail spin. After a year and a half, Tal went back into surgery to remove the hardware because it was to painful to leave in. Talan never has recovered from his back injury and he also has a 3 curve scoliosis in his spine to boot. He ended up not going back to High School but he did finish.
As time went on his health started to decline. He would lose weight and then gain weight, his pain was unbearable. His joints hurt, and he has had multiple other issues way too many to go into that you wouldnt understand if I explained them because it is complicated for me to understand.
We have went to the National Institutes of Health twice in Maryland for a possible cushings disease. They discovered there that he did not have cushings but that he had something that was systemic. This means that this rare disease is affecting every system in his body and thats why he has weight loss and weight gain and many other symptoms. This is why it is hard to diagnose him because it affects systems and then all of the sudden they become normal again. The NIH said that he has a rare disease that they cannot pinpoint!
We are now into our 7th year with his rare disease and he is still fighting hard for his life! He never gives up and the day he does we are no longer going to see our Talan!
Talan and I (mom) just went out to the Mayo clinic for more testing. We went out for them to test him for a disease they thought he had called IGg4 sclerosing systemic disease. Talans back you can see has had ulcers on it and now it is sclerosing. Which means his tissue is dying clear through the muscle. He is doing this in his abdomen, buttocks, back, and now thighs. We have no idea if he is doing it other places but it can reach his internal organs.
MAYO UPDATE, MAY 21,2012
On May 21, 2012 the Dr. from the Mayo called us and told us this. "We know he is sclerosing but we dont know why? He is having an inflammatory process, and edema and we dont know why? He has a positive autoimmune test but we just cant put our finger on what disease it is. We know that it is causing systemic issues in his body along with lots of pain. He is on the verge of scleroderma and the IGg4 disease. But we do not feel comfortable enough to make the call just yet. He needs to get worse before we can name it. (I thought really? Can it get any worse?) He is already almost bed ridden and cant walk very far. He is also very fatigued and sometimes even falls because his right leg goes numb and its just not there. He almost weighs 300 lbs., alot of it is water retention. So for now the Dr.s orders are to keep doing what we are doing and they are going to watch him close for more changes. They want him to do some kind of rehabilitation so his muscles wont get contractures, because when you scleros it affects the muscles. The sclerosing can reach the internal organs and we do not know if it is at this point or not? We asked for a scan to be done to see and they told us it would be a waste of time and money because if he was there was nothing they could do for it. There is no medicine to stop sclerosing! The Dr. explained it like this, its like going outside and its cloudy and you wonder is it going to rain or not?" He also told us just because he does not have a clear diagnosis it does not mean he is not sick. He is very sick, and we wish we had more answers.
I asked the Dr. if the environment could have anything to do with causing him to sclerose. Like chemicals or toxins in the air or that he has come in contact with. He said YES! It was up to me to look into that with the EPA of things that have been burned in the area and so forth. I wonder, is it really worth it? Sounds like a lot of leg work that I dont know if I have the knowledge to do. There are some tests to test him to see if that toxin or chemical is in his body and possibly some medicines to counter act it?
Talan not only has the rare disease to deal with but also his back issues.
All Dr.s he has seen said that his pain meds are warranted and that they are not the cause of his rare disease. I know there have been a lot of people with questions to this. This is why Im telling you it is not the cause! When someone has chronic pain, they are not addicted to drugs but they may be dependent on them. This is something we define all of the time. I think there needs to be more awareness for people to understand the difference.
This is a difficult challenge for Talan and for us as a family! Everyday living is not easy, but we know that our Heavenly Father is very aware of our situation and we receive blessings everyday. The biggest blessing is that we still have our Talan! His humor is buried and sometimes comes out and it is very joyous to hear it when it is shown. Talan needs friends, he has had so many of his High School friends that still come and see him and this is what keeps him going. It is hard for him to see them all move on with missions, college, marriage and so forth. Thank you so much for all your love and concern, thoughts, and prayers! He may not be healed with the prayers but it is helping him fight to his fullest ability and helping us stay strong. I know sometimes that I put things on Facebook that might offend people but there comes a time that you just cant take anymore and Im sorry if I offended you! Please understand that it is difficult for us as parents to be helpless and we are doing our best to help him and we are not going to give up! We just ask for your continued love, support, and not hurtful rumors. Please if you have any questions please just ask Stan or I and we will be gladly to answer them to the best of our ability. Thank you for your friendships! I will try and keep this update as time goes by. Thanks again everyone....
May 23,2012
As Talan grew up, he had a full of life personality and was able to play sports and have fun with friends. He was a natural athlete and had many talents. He also loved to ride his four wheeler with friends at the dunes and out and about around our house. He was always full of life and full of shit, I would call it! He has such a funny personality and always was cracking jokes.
When Talan was a freshman he started having more health problems with sinus' and had two sinus surgeries back to back within six months of each other to get rid of staph. He still to this day fights problems with his sinus'. He made the basketball team for Bear River as a Freshman and played well even though he was sick. He also played football that year and did very well.
His sophomore year he made the football team and basketball team and also played very well and loved to play his sports. In fact Talan even lettered in football his sophomore year. There were only 3 sophs that lettered that year and he was one of them. We were so proud of him. As the year came to an end at school, football camp was coming up. He went to football camp and he practiced and practiced. At one of the practices he was in a drill of blocking and he hit head on with another player and he said he practically decleated the opponent. Ha ha..... but as he went to stand up he really couldnt, his back had a severe pain and so did his leg and it was numb. He was not able to play the rest of the camp. Come to find out he had broke his back. He was in a turtle shell for 3 months to try to heal it but it did not work. He ended up having back surgery.
Talan ended up with 4 screws and wire to hold him together. After this his health went into a tail spin. After a year and a half, Tal went back into surgery to remove the hardware because it was to painful to leave in. Talan never has recovered from his back injury and he also has a 3 curve scoliosis in his spine to boot. He ended up not going back to High School but he did finish.
As time went on his health started to decline. He would lose weight and then gain weight, his pain was unbearable. His joints hurt, and he has had multiple other issues way too many to go into that you wouldnt understand if I explained them because it is complicated for me to understand.
We have went to the National Institutes of Health twice in Maryland for a possible cushings disease. They discovered there that he did not have cushings but that he had something that was systemic. This means that this rare disease is affecting every system in his body and thats why he has weight loss and weight gain and many other symptoms. This is why it is hard to diagnose him because it affects systems and then all of the sudden they become normal again. The NIH said that he has a rare disease that they cannot pinpoint!
We are now into our 7th year with his rare disease and he is still fighting hard for his life! He never gives up and the day he does we are no longer going to see our Talan!
Talan and I (mom) just went out to the Mayo clinic for more testing. We went out for them to test him for a disease they thought he had called IGg4 sclerosing systemic disease. Talans back you can see has had ulcers on it and now it is sclerosing. Which means his tissue is dying clear through the muscle. He is doing this in his abdomen, buttocks, back, and now thighs. We have no idea if he is doing it other places but it can reach his internal organs.
MAYO UPDATE, MAY 21,2012
On May 21, 2012 the Dr. from the Mayo called us and told us this. "We know he is sclerosing but we dont know why? He is having an inflammatory process, and edema and we dont know why? He has a positive autoimmune test but we just cant put our finger on what disease it is. We know that it is causing systemic issues in his body along with lots of pain. He is on the verge of scleroderma and the IGg4 disease. But we do not feel comfortable enough to make the call just yet. He needs to get worse before we can name it. (I thought really? Can it get any worse?) He is already almost bed ridden and cant walk very far. He is also very fatigued and sometimes even falls because his right leg goes numb and its just not there. He almost weighs 300 lbs., alot of it is water retention. So for now the Dr.s orders are to keep doing what we are doing and they are going to watch him close for more changes. They want him to do some kind of rehabilitation so his muscles wont get contractures, because when you scleros it affects the muscles. The sclerosing can reach the internal organs and we do not know if it is at this point or not? We asked for a scan to be done to see and they told us it would be a waste of time and money because if he was there was nothing they could do for it. There is no medicine to stop sclerosing! The Dr. explained it like this, its like going outside and its cloudy and you wonder is it going to rain or not?" He also told us just because he does not have a clear diagnosis it does not mean he is not sick. He is very sick, and we wish we had more answers.
I asked the Dr. if the environment could have anything to do with causing him to sclerose. Like chemicals or toxins in the air or that he has come in contact with. He said YES! It was up to me to look into that with the EPA of things that have been burned in the area and so forth. I wonder, is it really worth it? Sounds like a lot of leg work that I dont know if I have the knowledge to do. There are some tests to test him to see if that toxin or chemical is in his body and possibly some medicines to counter act it?
Talan not only has the rare disease to deal with but also his back issues.
All Dr.s he has seen said that his pain meds are warranted and that they are not the cause of his rare disease. I know there have been a lot of people with questions to this. This is why Im telling you it is not the cause! When someone has chronic pain, they are not addicted to drugs but they may be dependent on them. This is something we define all of the time. I think there needs to be more awareness for people to understand the difference.
This is a difficult challenge for Talan and for us as a family! Everyday living is not easy, but we know that our Heavenly Father is very aware of our situation and we receive blessings everyday. The biggest blessing is that we still have our Talan! His humor is buried and sometimes comes out and it is very joyous to hear it when it is shown. Talan needs friends, he has had so many of his High School friends that still come and see him and this is what keeps him going. It is hard for him to see them all move on with missions, college, marriage and so forth. Thank you so much for all your love and concern, thoughts, and prayers! He may not be healed with the prayers but it is helping him fight to his fullest ability and helping us stay strong. I know sometimes that I put things on Facebook that might offend people but there comes a time that you just cant take anymore and Im sorry if I offended you! Please understand that it is difficult for us as parents to be helpless and we are doing our best to help him and we are not going to give up! We just ask for your continued love, support, and not hurtful rumors. Please if you have any questions please just ask Stan or I and we will be gladly to answer them to the best of our ability. Thank you for your friendships! I will try and keep this update as time goes by. Thanks again everyone....
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