Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Sandy, I wish I could help I passed it on to Amy the president of the Orlando DS group w/ like 500 familes and Robin my CMS (Chilrdren's Medical Servise) contact and best friend, so ifyou here from them you'll know how? I will pray for your whole family. Good luck Irene New problem > Hi All, > Well I need help and input if possible. Our third triplet is now in > liver failure. He was diagnosed 4 years ago with Hep B. Yes he did have > the shots and he has never had a blood transfusion, that was minute older > brother . So now, we have learned that the DNA is replicating and > never > shut the Hepatitis down. In December, we had an ultrasound and found out > that the liver is now starting to enlarge, so we are in failure. The > question is has anyone gone through something similar? The GI department > here in Dallas has not had a child with down's in this position before and > I > am having trouble finding information. > > Some information I have found shows that Hep B is not a good risk for a > transplant. Not sure if that is true, but its what the Medical book said. > Just completely at a loss here. We have had 2 good years with no > hospitals > and guess that will all be changing. has been granted a Make-A-Wish, > so the family will be going to Florida this summer. The big question is > will he survive. How do I prepare if we do loose him and then there > is > , will he understand? So hard the boys will be six on the 14th, > and > had survived so much... Oh well, if any one has any information, please > pass > it on either here, or to my private email junglemom9@.... > > Thanks > Sandy > Mom to 19, 17, Barry 15, Robbie 10 and , (ds) > & > (ds) almost 6. (plus angels Aimee 3/2003, 8/2002) > > > > > More pictures of our kids: > http://www.pbase.com/urriegrl/multiplesds > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Sandy, I am at a loss for the right words. I have a prayer that I hung in Braden's bed during the times we were told that he too would die. It's called a parent's prayer... Dear God, Give me the strength to be present at my child's pain. Keep me from denying or minimizing what he is experiencing. Don't let me make my emotional pain more important than his physical pain. Don't let me abandon him in any way because of my own fear and weakness. Don't let me be overpowered by my feelings of helplessness. Remind me that pain is survivable. Remind me that he knows I would not permit this if it were not necessary. Help me to bear our suffering with strength, dignity, and honesty and so provide an example that will calm and reassure him. Remind me that my touch, my smell, my presence are all to him. Help me to stay here beside him. Amen. I will hope for a recovery for you son and happiness for your family - you have been through so much. Bethany (mom to Allie 10, Cameron 6, Braden DS and Grant (4)) Reply-To: Multiples-DS To: <Multiples-DS >Subject: New problemDate: Fri, 3 Feb 2006 09:41:32 -0600Hi All,Well I need help and input if possible. Our third triplet is now inliver failure. He was diagnosed 4 years ago with Hep B. Yes he did havethe shots and he has never had a blood transfusion, that was minute olderbrother . So now, we have learned that the DNA is replicating and nevershut the Hepatitis down. In December, we had an ultrasound and found outthat the liver is now starting to enlarge, so we are in failure. Thequestion is has anyone gone through something similar? The GI departmenthere in Dallas has not had a child with down's in this position before and Iam having trouble finding information.Some information I have found shows that Hep B is not a good risk for atransplant. Not sure if that is true, but its what the Medical book said.Just completely at a loss here. We have had 2 good years with no hospitalsand guess that will all be changing. has been granted a Make-A-Wish,so the family will be going to Florida this summer. The big question iswill he survive. How do I prepare if we do loose him and then there is, will he understand? So hard the boys will be six on the 14th, andhad survived so much... Oh well, if any one has any information, please passit on either here, or to my private email junglemom9@....ThanksSandyMom to 19, 17, Barry 15, Robbie 10 and , (ds) & (ds) almost 6. (plus angels Aimee 3/2003, 8/2002)More pictures of our kids:http://www.pbase.com/urriegrl/multiplesds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Hi Sandy, I will say lots of prayers on behalf of , you and the rest of your family. He is so blessed to have you as a Mom. I know you are doing everything in your power to help him through this time. Thank you for reaching out to us. I pray that someone can get you the resources and answers you need to help . Best wishes. Regards, Granata Mom to Haley & Nikki, 41 mos twin girls, both w/DS, and , 22 mos son -----Original Message-----From: Multiples-DS [mailto:Multiples-DS ]On Behalf Of WeberSent: Friday, February 03, 2006 10:42 AMTo: Multiples-DS Subject: New problemHi All,Well I need help and input if possible. Our third triplet is now inliver failure. He was diagnosed 4 years ago with Hep B. Yes he did havethe shots and he has never had a blood transfusion, that was minute olderbrother . So now, we have learned that the DNA is replicating and nevershut the Hepatitis down. In December, we had an ultrasound and found outthat the liver is now starting to enlarge, so we are in failure. Thequestion is has anyone gone through something similar? The GI departmenthere in Dallas has not had a child with down's in this position before and Iam having trouble finding information.Some information I have found shows that Hep B is not a good risk for atransplant. Not sure if that is true, but its what the Medical book said.Just completely at a loss here. We have had 2 good years with no hospitalsand guess that will all be changing. has been granted a Make-A-Wish,so the family will be going to Florida this summer. The big question iswill he survive. How do I prepare if we do loose him and then there is, will he understand? So hard the boys will be six on the 14th, andhad survived so much... Oh well, if any one has any information, please passit on either here, or to my private email junglemom9@....ThanksSandyMom to 19, 17, Barry 15, Robbie 10 and , (ds) & (ds) almost 6. (plus angels Aimee 3/2003, 8/2002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Hello Sandy, I wish I can help you with answers but I can't. I will keep you, and all your family in my prayers. And hope you find all the help he needs and answers to all your questions. God bless you all. Mabel, mom to Carolina, Cristian and a-ds almost 7 years old. Reply-To: Multiples-DS To: <Multiples-DS >Subject: New problemDate: Fri, 3 Feb 2006 09:41:32 -0600Hi All,Well I need help and input if possible. Our third triplet is now inliver failure. He was diagnosed 4 years ago with Hep B. Yes he did havethe shots and he has never had a blood transfusion, that was minute olderbrother . So now, we have learned that the DNA is replicating and nevershut the Hepatitis down. In December, we had an ultrasound and found outthat the liver is now starting to enlarge, so we are in failure. Thequestion is has anyone gone through something similar? The GI departmenthere in Dallas has not had a child with down's in this position before and Iam having trouble finding information.Some information I have found shows that Hep B is not a good risk for atransplant. Not sure if that is true, but its what the Medical book said.Just completely at a loss here. We have had 2 good years with no hospitalsand guess that will all be changing. has been granted a Make-A-Wish,so the family will be going to Florida this summer. The big question iswill he survive. How do I prepare if we do loose him and then there is, will he understand? So hard the boys will be six on the 14th, andhad survived so much... Oh well, if any one has any information, please passit on either here, or to my private email junglemom9@....ThanksSandyMom to 19, 17, Barry 15, Robbie 10 and , (ds) & (ds) almost 6. (plus angels Aimee 3/2003, 8/2002)More pictures of our kids:http://www.pbase.com/urriegrl/multiplesds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Sandy, You and your family are in my pprayers. Please keep us posted. and family Re: New problem Sandy, I wish I could help I passed it on to Amy the president of the Orlando DS group w/ like 500 familes and Robin my CMS (Chilrdren's Medical Servise) contact and best friend, so ifyou here from them you'll know how? I will pray for your whole family. Good luck Irene New problem > Hi All, > Well I need help and input if possible. Our third triplet is now > in liver failure. He was diagnosed 4 years ago with Hep B. Yes he > did have the shots and he has never had a blood transfusion, that was > minute older brother . So now, we have learned that the DNA is > replicating and never > shut the Hepatitis down. In December, we had an ultrasound and found out > that the liver is now starting to enlarge, so we are in failure. The > question is has anyone gone through something similar? The GI > department here in Dallas has not had a child with down's in this > position before and I am having trouble finding information. > > Some information I have found shows that Hep B is not a good risk for > a transplant. Not sure if that is true, but its what the Medical book > said. Just completely at a loss here. We have had 2 good years with > no hospitals and guess that will all be changing. has been > granted a Make-A-Wish, so the family will be going to Florida this > summer. The big question is will he survive. How do I prepare > if we do loose him and then there is > , will he understand? So hard the boys will be six on the 14th, > and > had survived so much... Oh well, if any one has any information, please > pass > it on either here, or to my private email junglemom9@.... > > Thanks > Sandy > Mom to 19, 17, Barry 15, Robbie 10 and , > (ds) > & > (ds) almost 6. (plus angels Aimee 3/2003, 8/2002) > > > > > More pictures of our kids: http://www.pbase.com/urriegrl/multiplesds > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 I'm so sorry to hear about his health. I hope you find some answers and may miracles be dirrected your way! Gayla Sandy,You and your family are in my pprayers. Please keep us posted. and family Re: New problemSandy,I wish I could help I passed it on to Amy the president of the OrlandoDS group w/ like 500 familes and Robin my CMS (Chilrdren's Medical Servise) contact and best friend, so ifyou here from them you'll knowhow? I will pray for your whole family. Good luck Irene New problem> Hi All,> Well I need help and input if possible. Our third triplet is now> in liver failure. He was diagnosed 4 years ago with Hep B. Yes he > did have the shots and he has never had a blood transfusion, that was > minute older brother . So now, we have learned that the DNA is > replicating and never> shut the Hepatitis down. In December, we had an ultrasound and found out> that the liver is now starting to enlarge, so we are in failure. The > question is has anyone gone through something similar? The GI > department here in Dallas has not had a child with down's in this > position before and I am having trouble finding information.>> Some information I have found shows that Hep B is not a good risk for > a transplant. Not sure if that is true, but its what the Medical book > said. Just completely at a loss here. We have had 2 good years with > no hospitals and guess that will all be changing. has been > granted a Make-A-Wish, so the family will be going to Florida this > summer. The big question is will he survive. How do I prepare > if we do loose him and then there is> , will he understand? So hard the boys will be six on the14th, > and > had survived so much... Oh well, if any one has any information,please > pass> it on either here, or to my private email junglemom9@....>> Thanks> Sandy> Mom to 19, 17, Barry 15, Robbie 10 and , > (ds)> & > (ds) almost 6. (plus angels Aimee 3/2003, 8/2002) >>>>> More pictures of our kids: http://www.pbase.com/urriegrl/multiplesds > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Hello, I am catching up on this board and just read your post. I don't have any information that can help you, but just wanted you to know I am thinking of you. I hope you are finding out some info, and will say a prayer for . Good health is a fragile and precious thing, isn't it? It is so easy to forget that and take it for granted. Cherie S. Ian 11, 8, Kate and (DS) 21 months > > Hi All, > Well I need help and input if possible. Our third triplet is now in > liver failure. He was diagnosed 4 years ago with Hep B. Yes he did have > the shots and he has never had a blood transfusion, that was minute older > brother . So now, we have learned that the DNA is replicating and never > shut the Hepatitis down. In December, we had an ultrasound and found out > that the liver is now starting to enlarge, so we are in failure. The > question is has anyone gone through something similar? The GI department > here in Dallas has not had a child with down's in this position before and I > am having trouble finding information. > > Some information I have found shows that Hep B is not a good risk for a > transplant. Not sure if that is true, but its what the Medical book said. > Just completely at a loss here. We have had 2 good years with no hospitals > and guess that will all be changing. has been granted a Make- A-Wish, > so the family will be going to Florida this summer. The big question is > will he survive. How do I prepare if we do loose him and then there is > , will he understand? So hard the boys will be six on the 14th, and > had survived so much... Oh well, if any one has any information, please pass > it on either here, or to my private email junglemom9@... > > Thanks > Sandy > Mom to 19, 17, Barry 15, Robbie 10 and , (ds) & > (ds) almost 6. (plus angels Aimee 3/2003, 8/2002) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Sandy - I have no words of wisdom for you other than to say I'll keep and you all in my thoughts and prayers. Hugs, Judi > > Hi All, > Well I need help and input if possible. Our third triplet is now in > liver failure. He was diagnosed 4 years ago with Hep B. Yes he did have > the shots and he has never had a blood transfusion, that was minute older > brother . So now, we have learned that the DNA is replicating and never > shut the Hepatitis down. In December, we had an ultrasound and found out > that the liver is now starting to enlarge, so we are in failure. The > question is has anyone gone through something similar? The GI department > here in Dallas has not had a child with down's in this position before and I > am having trouble finding information. > > Some information I have found shows that Hep B is not a good risk for a > transplant. Not sure if that is true, but its what the Medical book said. > Just completely at a loss here. We have had 2 good years with no hospitals > and guess that will all be changing. has been granted a Make- A-Wish, > so the family will be going to Florida this summer. The big question is > will he survive. How do I prepare if we do loose him and then there is > , will he understand? So hard the boys will be six on the 14th, and > had survived so much... Oh well, if any one has any information, please pass > it on either here, or to my private email junglemom9@... > > Thanks > Sandy > Mom to 19, 17, Barry 15, Robbie 10 and , (ds) & > (ds) almost 6. (plus angels Aimee 3/2003, 8/2002) > Quote Link to comment Share on other sites More sharing options...
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