Comments on: Make Needle Sticks A Treat! http://www.sweetaffliction.com/recentposts/make-needle-sticks-a-treat/ Tue, 13 Jul 2010 13:15:37 -0700 hourly 1 http://wordpress.org/?v=3.0 By: Dolores Mueller http://www.sweetaffliction.com/recentposts/make-needle-sticks-a-treat/comment-page-1/#comment-231 Dolores Mueller Mon, 01 Mar 2010 21:49:46 +0000 http://www.sweetaffliction.com/?p=495#comment-231 I am the mother of 2 adult sons with classic severe factor 8 Hemophilia. David Mueller age 44 and Jimmy Mueller age 48. I was also the sister of a brother who is deceased as well as an uncle, a cousin and a second cousin. I have never breathed a breath without hemophilia in my live and I soon will be 76 years old. To the new generation I would like to say how blessed you are to have such new and wonderful treatments. Your quality of life will surley be so much better and less painful than those who have come before you. I was blessed to have a wonderful loving and supportive husband. We have been married for 52 years. In my generation ir was almost unheard of not to have a divorce in the family and I myself was the product of divorce because of the stress of the illness. As you all know it takes special parents to take care and treat these very special and loving sons. Sure I have been angry, sad and fearful. That is only human nature. On day I realized that I had to give up the control that I never really had and put my faith and trust in God. We all are who we are as a result of living with hemophilia and hopefully we are better persons because of it. I could go on and on about sleepless ntights, trips to the hospital and all the sadness but I choose to dwell on my wonderful sons and my 3 presious grand daughters who are also carriers. Life is good and someday this illness will be eraticated and the next generation will be so very blessed I am the mother of 2 adult sons with classic severe factor 8 Hemophilia. David Mueller age 44 and Jimmy Mueller age 48. I was also the sister of a brother who is deceased as well as an uncle, a cousin and a second cousin. I have never breathed a breath without hemophilia in my live and I soon will be 76 years old. To the new generation I would like to say how blessed you are to have such new and wonderful treatments. Your quality of life will surley be so much better and less painful than those who have come before you. I was blessed to have a wonderful loving and supportive husband. We have been married for 52 years. In my generation ir was almost unheard of not to have a divorce in the family and I myself was the product of divorce because of the stress of the illness. As you all know it takes special parents to take care and treat these very special and loving sons. Sure I have been angry, sad and fearful. That is only human nature. On day I realized that I had to give up the control that I never really had and put my faith and trust in God. We all are who we are as a result of living with hemophilia and hopefully we are better persons because of it. I could go on and on about sleepless ntights, trips to the hospital and all the sadness but I choose to dwell on my wonderful sons and my 3 presious grand daughters who are also carriers. Life is good and someday this illness will be eraticated and the next generation will be so very blessed

]]> By: Lacy Watt http://www.sweetaffliction.com/recentposts/make-needle-sticks-a-treat/comment-page-1/#comment-201 Lacy Watt Mon, 28 Dec 2009 09:54:47 +0000 http://www.sweetaffliction.com/?p=495#comment-201 Ian, I understand your worry and your concern for your son's future. You must know that there is hope ! When your son starts to walk you will be doing prophalatic infusions 2 to 3 times a week to maintain normal blood platelet levels. If a bleed occurs treat it and keep supporting your little guy. These boys will not grow up to be football lineman, UFC wrestlers, or boxers. But they will grow up to be the best that they can be. Swimming, and baseball are safe sports for these kids. The more physically active these youngsters are the more muscle is built up to protect their joints. The way you portray your son's Hemophilia will be the same way he will perceive it too. Attitude is everything !! You can't worry about the what if's, it will drive you crazy. Enjoy your son, hematomas and all. Also get involved with your local Hemophilia chapter and attend events to meet other families that are living and coping with Hemophilia. If it brings you any peace of mind. My son is 7 and has had only 2 joint bleeds that were caught extremely early. There has been no damage to his joints thus far. Prevention and prophalaxis is the key to keeping your son healthy. I know all of this is overwhelming but just know there are others out there living life and over coming obstacles everyday that have had a much more difficult journey than what our youngsters will ever go through. The older Hemophiliacs are true soldiers of fighting for life and never settling. The Hemophilia community is constantly evolving, technology improving, and supportive of one another. Best of luck on your journey ! Ian, I understand your worry and your concern for your son’s future. You must know that there is hope ! When your son starts to walk you will be doing prophalatic infusions 2 to 3 times a week to maintain normal blood platelet levels. If a bleed occurs treat it and keep supporting your little guy. These boys will not grow up to be football lineman, UFC wrestlers, or boxers. But they will grow up to be the best that they can be. Swimming, and baseball are safe sports for these kids. The more physically active these youngsters are the more muscle is built up to protect their joints. The way you portray your son’s Hemophilia will be the same way he will perceive it too. Attitude is everything !! You can’t worry about the what if’s, it will drive you crazy. Enjoy your son, hematomas and all. Also get involved with your local Hemophilia chapter and attend events to meet other families that are living and coping with Hemophilia. If it brings you any peace of mind. My son is 7 and has had only 2 joint bleeds that were caught extremely early. There has been no damage to his joints thus far. Prevention and prophalaxis is the key to keeping your son healthy. I know all of this is overwhelming but just know there are others out there living life and over coming obstacles everyday that have had a much more difficult journey than what our youngsters will ever go through. The older Hemophiliacs are true soldiers of fighting for life and never settling. The Hemophilia community is constantly evolving, technology improving, and supportive of one another. Best of luck on your journey !

]]> By: Ian Anderson http://www.sweetaffliction.com/recentposts/make-needle-sticks-a-treat/comment-page-1/#comment-190 Ian Anderson Thu, 26 Nov 2009 22:37:26 +0000 http://www.sweetaffliction.com/?p=495#comment-190 my son was diagnosed with severe hemophelia a... i am so broken... i dont know what to do when he starts to walk... i cant bear the fact that he will bleed spontanenously without doing anything... :( my son was diagnosed with severe hemophelia a… i am so broken… i dont know what to do when he starts to walk…

i cant bear the fact that he will bleed spontanenously without doing anything…

:(

]]> By: Krystal http://www.sweetaffliction.com/recentposts/make-needle-sticks-a-treat/comment-page-1/#comment-151 Krystal Tue, 18 Aug 2009 21:51:36 +0000 http://www.sweetaffliction.com/?p=495#comment-151 OMG..I loved the part about feeling "inhuman" This is exactly how my husband and I got through the first few years. Jeryn is 4, will be 5 in December and has had his port since he was 2. Before this, my husband and I could actually infuse him at home because I was a phlebotomist..God really does work in mysterious ways..Now, he sits still for his infusions with no problems, and we are attempting to transition to veins. I still feel we have a way to go. Thanks for sharing. I will keep your family in our thoughts and prayers. OMG..I loved the part about feeling “inhuman” This is exactly how my husband and I got through the first few years. Jeryn is 4, will be 5 in December and has had his port since he was 2. Before this, my husband and I could actually infuse him at home because I was a phlebotomist..God really does work in mysterious ways..Now, he sits still for his infusions with no problems, and we are attempting to transition to veins. I still feel we have a way to go. Thanks for sharing. I will keep your family in our thoughts and prayers.

]]> By: Debbie Stanglin Hartleben http://www.sweetaffliction.com/recentposts/make-needle-sticks-a-treat/comment-page-1/#comment-98 Debbie Stanglin Hartleben Mon, 03 Aug 2009 21:00:23 +0000 http://www.sweetaffliction.com/?p=495#comment-98 Jakob is my grandson and I have seen first-hand the remarkable strength of my daughter and her family. She makes the infusions a family moment and my 8 year old grandson, Hunter, has also started being an active participant. My heart and prayers continue to pour out for Jakob and for all those facing devasting illnesses, especially with their children. Debbie Jakob is my grandson and I have seen first-hand the remarkable strength of my daughter and her family. She makes the infusions a family moment and my 8 year old grandson, Hunter, has also started being an active participant. My heart and prayers continue to pour out for Jakob and for all those facing devasting illnesses, especially with their children. Debbie

]]>