Guest guest Posted October 8, 2000 Report Share Posted October 8, 2000 Dear Kris, Sorry it has taken so long for me to reply to your intro. We've gotton real busy dealing with our daughter, Maggie's cardiac issues lately. She was born with a complete AVSD and went through open heart surgery at 3 mos. She has done beautifully, but still needs a repair surgery for her mitral valve which we've just now scheduled for November. (She's now 4 years old.) She's not had any of the other issues that you mentioned, but I'm a good one to talk to when it comes to just needing moral support. However, I must tell you that my belief system is Christ-centered and based on the Bible. I'll also add that having a child such as Maggie has demonstrated over and over again the truth of my belief system. Anyway, I would also suggest that you might try one of the more specialized DS listserves, for example DownsHeart. Even though your daughter has MDS, I have from time to time joined in on these kinds of DS lists and found answers and support. (No one really cares whether it's DS or MDS when it comes to major health issues!). I don't have any addresses right off hand, but I'm sure that if you do some searching you'll find them easily. Hope this helps. Carla Duffy > >Reply-To: MosaicDSegroups >To: MosaicDSegroups >Subject: new member >Date: Tue, 12 Sep 2000 23:46:47 -0700 > >I am a mother of a beautiful, charming 19 month old daughter with MDS. >She has two older brothers to love and care for her, along with her dad. >She has been dealing with cardiac issues (CAVC, VSD, Tetrology of Fallot, >moderate to severe leakage of mitral valve), swallowing issues, silent >aspiration with stridor, reflux, slow weight gain (eats very minimal to >non-existent solid food; replies mostly on Pediasure) and constant colds >(caused by the aspiration) with ear infections (4 this yr.) First >repair done at 4 mos. old. Need more repairs. Anyone out there with >similar experience? She has a PT, OT, ST, Pediatrician, cardiologist, >surgical team, nutritionist, swallowing specialist, ENT, and an >audiologist. Am I missing anyone? So many issues, so little answers. > >Kris-- mom of MDS daughter _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 Carla, Are you on our ChristianDSParentsegroups list? I thought so, but if not, I'm sure you'd love it. Beth new member>Date: Tue, 12 Sep 2000 23:46:47 -0700>>I am a mother of a beautiful, charming 19 month old daughter with MDS.>She has two older brothers to love and care for her, along with her dad.>She has been dealing with cardiac issues (CAVC, VSD, Tetrology of Fallot,>moderate to severe leakage of mitral valve), swallowing issues, silent>aspiration with stridor, reflux, slow weight gain (eats very minimal to>non-existent solid food; replies mostly on Pediasure) and constant colds>(caused by the aspiration) with ear infections (4 this yr.) First>repair done at 4 mos. old. Need more repairs. Anyone out there with>similar experience? She has a PT, OT, ST, Pediatrician, cardiologist,>surgical team, nutritionist, swallowing specialist, ENT, and an>audiologist. Am I missing anyone? So many issues, so little answers.>>Kris-- mom of MDS daughter_________________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.Share information about yourself, create your own public profile at http://profiles.msn.com.Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com And please don't forget to check the message board frequently...it's a great way to meet others who are affected by MDS, who are not on our mailing list! http://www.insidetheweb.com/mbs.cgi/mb778401************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2000 Report Share Posted October 12, 2000 Thanks for the tip on the site. I will try looking into it. Yes, I believe faith in our Creator has an enormous amount of power. If it weren't for the deep faith my husband and I have, we wouldn't have gotten through this. It's amazing what knowledge from the Bible and our loving Creator, Jehovah God, can do to enrich our lives. I also believe in support from fellow believers. Our friends at the congregation took care of my other children, fed my husband, and continually offered support and prayers during our very difficult year. Have you ever heard of the song by a group called 'N Sync? They have a beautiful song out called " God Must Have Spent a Little More Time on You " . The first time I heard it, I was angry. I thought, " If He spent so much time on her, why will she be born with all of these problems? " As time went by, I realized that God had spent time on her, otherwise she would have died before she was born. While we were going through her surgery and the complications that arose from it (from the dr. not respecting our beliefs), we prayed so much and that is what got us through it. To this day, that song is my special song for my special little girl, Sierra. We were told she wouldn't survive birth, if she did, she wouldn't be able to breath, would need a ventilator, need immediate surgery and even then, wasn't sure of survival. Guess what? I truly believe God had a lot to do with her surviving and pulling through so well. I am so grateful for my faith in God, the Bible and the power of prayer and friends. Hope this has been your case. Take care and thanks again. Kris, mom to Sierra MDS,CAVC,TOF,VSD,mod-severe mitral valve regurg., GERD etc etc etc...... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 Yes, I >believe faith in our Creator has an enormous amount of power. If it >weren't for the deep faith my husband and I have, we wouldn't have gotten >through this. Amen to that! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Hi. My name is Barbara, Im 45 and live in Montreal, Quebec, Canada. I am on the list for a liver transplant. I contracted HCV through blood transfusions. This went undiagnosed until when combined with a lifestyle that was typically unhealthy in many ways, contributed to illness and fatique that I finally addressed in 1999. Damage done, cirrhosis (endstage), enlarged spleen-low platlets, fluid retention commonplace and generally feel icky most of the time. LOL On another level.... Life is good, the sun is shining, my husband and dog love me unconditionally. I have a supportive family, good friends, informative doctors and Im not PMSing. heeheehee Look forward to talking again, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2005 Report Share Posted August 4, 2005 Dorothy and all who have responded, Thank you so much for the insight. Yes, I did think that the " end " is near but have since done a lot of searching and reading (especially on this board) and find that it is not the end. Thank you all SO SO much!!!! Peace and love to all, Ali Re: New Member Alice wrote, His doctor said that he has end stage liver disease. I have been reading as much as I can, and all that I can. I don't understand so much but I am trying. Alice, I remember the first time I heard the term " end stage liver disease " . I thought that meant, the " end " is near. I think that in not necessarily what it means, but maybe others will give their understanding of the term. Dorothy Quote Link to comment Share on other sites More sharing options...
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