Guest guest Posted October 29, 1999 Report Share Posted October 29, 1999 Welcome Pam, My name is Joyce. I just joined a couple of days ago. I have seven kids and three of my kids are down syndrome. -age 16, -6, and -2 1/2. It isn't always easy, in fact, we've had a lot of challenges, but God has gotten us through each ordeal. Our kids are the " joy " of our lives! We wouldn't trade them for anyone in the world! Bless all of you...you have a " double " portion of love! Joyce-mother of seven (three are DS--16, -6, and 2 1/2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1999 Report Share Posted October 29, 1999 Hi Pam, I'm glad to see that you made it to the list! It is a wonderful group of people with lots of support! mom to Landon(DS) and Ashton 16 months --- Momjlf47@... wrote: > Welcome Pam, > My name is Joyce. I just joined a couple of days > ago. I have seven kids and > three of my kids are down syndrome. -age > 16, -6, and > -2 1/2. It isn't always easy, in fact, > we've had a lot of > challenges, but God has gotten us through each > ordeal. Our kids are the > " joy " of our lives! We wouldn't trade them for > anyone in the world! Bless > all of you...you have a " double " portion of love! > Joyce-mother of seven (three are DS--16, > -6, and 2 > 1/2) > > ------------------------------------------------------------------------ > http://DSyndrome.com/Multiples > <HR> <html> > ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1999 Report Share Posted October 29, 1999 Dear Joynce, Thanks for the welcome. Yes I have double the love and joy. I get reminded every morning with I wake up(or before that cause they are usually in the bed with me before morning!} They are truely a blessing. People just don't know what they are missing. Pam Momjlf47@... wrote: > From: Momjlf47@... > > Welcome Pam, > My name is Joyce. I just joined a couple of days ago. I have seven kids and > three of my kids are down syndrome. -age 16, -6, and > -2 1/2. It isn't always easy, in fact, we've had a lot of > challenges, but God has gotten us through each ordeal. Our kids are the > " joy " of our lives! We wouldn't trade them for anyone in the world! Bless > all of you...you have a " double " portion of love! > Joyce-mother of seven (three are DS--16, -6, and 2 > 1/2) > > > http://DSyndrome.com/Multiples Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 1999 Report Share Posted October 30, 1999 Welcome Pam, My name is Pam, too and I have identical twins, age 8 who both have DS. They are Jill and Shari. We are from Pittsburgh. It's nice to see more identicals. Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2000 Report Share Posted June 27, 2000 Pam -- I'm also new to the group and welcome you. My 8 year old daughter, Ashli, was diagnosed 1 year ago. She was on naproxen and tolectin, but had bad side effects from both. She now is on 900 mg of motrin a day and for the last 3 months been taking plaquenil, an auto-immune drug. From what the doctors say, you have to take this for at least 3 months before you see any improvement. We are in the 3rd month and nothing so far. Hope your July appt. goes well. We also go in July and from this JRA online list I have made many wonderful notes and questions to talk to Ashli's doctor about. God Bless, Sandi A. (Ashli's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2000 Report Share Posted October 5, 2000 Hi Nerys, Thanks for the warm welcome! Same goes here with me...if you need to vent, scream, talk, laugh, cry..or whatever is on your mind...I am here too. Take care...Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 Welcome Pam! You will find a wealth of information from a lot of VERY 'feisty folks' on this site. For me, it's been a God-send, a lifesaver, a sounding board and much, much more, all wrapped in more love and understanding than seems possible and tied together with a ribbon of beautiful, friendly, loving folks that I'm proud to call my friends and cohorts. We understand and support each other during some of the most difficult times in our lives...more often than not, when we feel there's no one else in our lives, not even our families, than can understand our frustrations, fears, apprehensions, anger, and a multitude of other emotions that Flatbackers experience. And we're here to celebrate and rejoice in each others' victories over pain, surgeries, and recoveries. Welcome to a wonderful, supportive site... All the best, Beth -------------- Original message -------------- > > > > Hi Pam and welcome to the board. > > You sound like you are already a vetran of many surgeries and know > that the choices ahead will be difficult. I know that you will find > tons of information on others experiences that will help along the > way. > > I think Kathi gave good advice...even if you plan on sticking with > your current surgeon it might set you mind at ease to get a second > opinion from one of the " revison specialists " that are well regarded > here. You don't say who your docrtor is or where you live in > Ohio...but being pretty centally located you probably can fairly > easily access NYC, Minneapolis, Boston or even Texas. I think most > of these surgeons will consult by phone...I think Lagrone in Texas > is mention most often in this regard. > > I am sorry you are having difficulties, but we will look forward to > hearing more from you! Cam > > > > > > > > > > Support for scoliosis-surgery veterans with Harrington Rod Malalignment > Syndrome. Not medical advice. Group does not control ads or endorse any > advertised products. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 Wow, Beth. What a great ad for Feisty! might want to use it on the site. :^) Sharon Re: Re: WELCOME PAM Welcome Pam! You will find a wealth of information from a lot of VERY 'feisty folks' on this site. For me, it's been a God-send, a lifesaver, a sounding board and much, much more, all wrapped in more love and understanding than seems possible and tied together with a ribbon of beautiful, friendly, loving folks that I'm proud to call my friends and cohorts. We understand and support each other during some of the most difficult times in our lives...more often than not, when we feel there's no one else in our lives, not even our families, than can understand our frustrations, fears, apprehensions, anger, and a multitude of other emotions that Flatbackers experience. And we're here to celebrate and rejoice in each others' victories over pain, surgeries, and recoveries. Welcome to a wonderful, supportive site... All the best, Beth -------------- Original message -------------- > > > > Hi Pam and welcome to the board. > > You sound like you are already a vetran of many surgeries and know > that the choices ahead will be difficult. I know that you will find > tons of information on others experiences that will help along the > way. > > I think Kathi gave good advice...even if you plan on sticking with > your current surgeon it might set you mind at ease to get a second > opinion from one of the " revison specialists " that are well regarded > here. You don't say who your docrtor is or where you live in > Ohio...but being pretty centally located you probably can fairly > easily access NYC, Minneapolis, Boston or even Texas. I think most > of these surgeons will consult by phone...I think Lagrone in Texas > is mention most often in this regard. > > I am sorry you are having difficulties, but we will look forward to > hearing more from you! Cam > > > > > > > > > > Support for scoliosis-surgery veterans with Harrington Rod Malalignment > Syndrome. Not medical advice. Group does not control ads or endorse any > advertised products. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 Dear Pam, Welcome and a big "hello" from Edgerton, Wisconsin, USA. My name is Terry and my daughter, , is the first in our family to have BPES. You can check out some pics of her under Jess (they're a bit dated and in need of new updated ones with her fiance). She is 24 and is getting married in August. She does not know which type she has. But when she was diagnosed at the age of 2 months, her specialist told us right up front about the possibility of her having infertility problems. Quite a tough prospect to swallow when you're holding your little baby girl and all you want for her is to grow up happy and healthy with nothing to worry about. She will be graduating from college on May 15th! She will be earning a B.S. degree in English education. Her husband-to-be is 30 and they have talked about waiting to start a family. I have gently tried to encourage her that she shouldn't wait too long because of the possible chance she may have POF and not even know it. Her periods are sometimes sketchy (not always normal). I was 20 when I had her older brother, 22 with her and 25 with her youngest brother (the boys do not have BPES). She loves children so much. Whatever her decision, I pray that she is happy. Good luck to you, Pam. You are a beautiful young woman (I checked out your pics) and I will be praying for you. God Bless. Sincerely, Terry ('s mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 Hey Terry, Many congratulations to and her husband to be. wonderful news, it made me smile. Clare Teale Herts UK From: Terry Helgestad <terryahelge@...>Subject: blepharophimosis Welcome Pamblepharophimosis Date: Tuesday, 20 April, 2010, 5:51 Dear Pam, Welcome and a big "hello" from Edgerton, Wisconsin, USA. My name is Terry and my daughter, , is the first in our family to have BPES. You can check out some pics of her under Jess (they're a bit dated and in need of new updated ones with her fiance). She is 24 and is getting married in August. She does not know which type she has. But when she was diagnosed at the age of 2 months, her specialist told us right up front about the possibility of her having infertility problems. Quite a tough prospect to swallow when you're holding your little baby girl and all you want for her is to grow up happy and healthy with nothing to worry about. She will be graduating from college on May 15th! She will be earning a B.S. degree in English education. Her husband-to-be is 30 and they have talked about waiting to start a family. I have gently tried to encourage her that she shouldn't wait too long because of the possible chance she may have POF and not even know it. Her periods are sometimes sketchy (not always normal). I was 20 when I had her older brother, 22 with her and 25 with her youngest brother (the boys do not have BPES). She loves children so much. Whatever her decision, I pray that she is happy. Good luck to you, Pam. You are a beautiful young woman (I checked out your pics) and I will be praying for you. God Bless. Sincerely, Terry ('s mom) Quote Link to comment Share on other sites More sharing options...
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