Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Hi , Welcome to our group. The one thing I would say is that " our " children are more work, but they are also very rewarding. Other than that, finding good doctors who are willing to work with you is absolutely key. Where do you live? We are lucky enough to live in New York near Dr Harbison who is the leading expert on RSS in this country. Judith, Steve, (RSS) and (non RSS) 4 1/2 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Hi , I'm a 27 year old with RSS. I think it's great that you're considering adding her to your family!! I just wanted to let you know that we turn out okay! I'm 4'8 " (growth hormone wasn't really an option back then). Other than being short, I live a " normal " life -- I'm working on my PhD in neuroscience, I married a wonderful (6'1 " ) guy last year, and I'm happy. My mom says that the first few years are the toughest. And since you've already got a diagnosis and found this listserv, you'll be able to tackle everything (possible feeding issues, etc) right away when you bring her home! Good luck! Let me know if I can answer any questions. -Ana > > Hi everyone! I am new here. My name is and my husband and I > are hoping to adopt a little girl who has RSS. She is 11 months old > and is in Korea. We have two biological children and two Korean > born children now. We saw her on our agency's website and just > melted. > > I have done a lot of research on RSS but is there any one thing you > all think we should know? > > Please feel free to email me J21inca@a... > > Thank you so much! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Hi Ana, Thank you for your quick and wonderful response. I am 27 too. Congrats on your studies! Right now I am working on a BS in the evenings but my kids are my main focus. My oldest child has autism. I wonder if you are studying that? I REALLY want to adopt this little girl. We are just waiting for our local agency to give us the thumbs up. She will be our last child. She is pretty close in age to the others so sometimes agencies hesitate. Thanks again. Talk to you soon, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Thank you for your response. I am in CA, we are moving to San Diego area soon. Now we are in Monterey. I bet NY is pretty this time of year! I have four kids now, 1,2,3,4 years old. Won't be able to say that much longer. My son will be 5 Nov 1. Where does the time go? Twins sound like fun! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Hi! I am so excited that you are looking into adopting this little girl! I also checked on her but since I am not married Korea would not allow it. Our children are just so amazing! I wish you the best of luck, and I will be praying for you! le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Hi jamie, my name is kim and i'm an rss adult age 26, i think its great you want to adopt an rss child, i can understand for some it may be daunting but an rss child is a special gift and we give so much love and also we are usually very outgoing (especially as adults, at the magic convention 4 rss adults went downtown and had a blast) I would love to adopt in the future and would especially like to have a shortstatured/particularly rss child as i feel i could relate to them and their needs, i wish you al the best and please keeps us posted on your application progress. Feel fre to email me any time (i'm also on aol, mightyatom2@... J21inCA@... wrote: Hi Ana, Thank you for your quick and wonderful response. I am 27 too. Congrats on your studies! Right now I am working on a BS in the evenings but my kids are my main focus. My oldest child has autism. I wonder if you are studying that? I REALLY want to adopt this little girl. We are just waiting for our local agency to give us the thumbs up. She will be our last child. She is pretty close in age to the others so sometimes agencies hesitate. Thanks again. Talk to you soon, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Wow, small world! We are cautiously hopeful that we will be able to get this baby girl and bring her home next year. Things are moving along nicely. I am SO GLAD to have found all of you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 - my name is Aileen and we are the legal guardians to a little boy (3 in November) who has what I would consider moderate RSS. We became his guardians thru the System. We have four other children and the youngest is 3 weeks younger than Jake (RSS). (Our oldest was four when the youngest was born.) Having a child with RSS is special - you need patience, love, common sense, and support. We have had Jake since he was 6 months old. By 1 1/2 he had a G-tube (feeding tube inserted). We have made mistakes and learned with him, just as you would with any of your other children. The other children are more caring and compassionate because of him. On the flip side - he has learned to interact with other children better, because he is part of a large family. The other children act as models for him and he wants to keep up with them & do whatever his older siblings do. Best of luck - Aileen in CT On Thu, 07 Oct 2004 00:53:30 -0000 " mom2prem " writes: Hi everyone! I am new here. My name is and my husband and I are hoping to adopt a little girl who has RSS. She is 11 months old and is in Korea. We have two biological children and two Korean born children now. We saw her on our agency's website and just melted. I have done a lot of research on RSS but is there any one thing you all think we should know? Please feel free to email me J21inca@.... Thank you so much! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Hi jamie!! welcome to this great group of caring and supportive people!!! i wish you much luck and hope and pray that you are the ones to care for this little girl. i have a 3 1/2yr old son with rss. he seems to be more on the mild side of the rss spectrum. he is 25lbs 7oz and 34 3/4 " . he is in the preschool disabled class at elementry school. which he attends 5x a week for 2 1/2hrs a day. he gets some slight OT and possiblly is ADHD. which seems to be controled well with a structured routine. he met all his milestones on time and is a bright, happy young man. he keeps right up with his 6yr old brother and he also is teaching his 15 month old brother how to get in " trouble " , LOL!!! he takes an appitetti stimulant (periactin) 2x a day and we are waiting to restart growth hormone therapy (we did it for 1 1/2 months but it wasnt the right time to start as per dr. harbison, another endo started it before we had our first visit with her). we just try to get as many calories into him a day as possible to help him grow. feel free to email me at jlcals2003@ yahoo.com (no space after @) good luck to you and you should check out the Magic Foundation if you havent yet www.magicfoundation.org they are a great source of info anf support to us!! jodie c. (one of 4 jodis on the list) (nicholas-6 1/2 nonrss, christopher-3 1/2 rss 25lbs 7oz 34 3/4 " periactin, GHT (genotropin on hold until oct. 18th ?!?!), ADHD (possible), assmentry (left side 1cm), johnathon-15 months nonrss) > > Hi everyone! I am new here. My name is and my husband and I > are hoping to adopt a little girl who has RSS. She is 11 months old > and is in Korea. We have two biological children and two Korean > born children now. We saw her on our agency's website and just > melted. > > I have done a lot of research on RSS but is there any one thing you > all think we should know? > > Please feel free to email me J21inca@a... > > Thank you so much! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 hey jamie!! i just wanted to let you know we have another family on here that has one child with autism and one that is SGA, possibly RSS (alicia if you see this maybe you can give her some advice). jodie c. -- In RSS-Support , J21inCA@a... wrote: > Hi Ana, > > Thank you for your quick and wonderful response. I am 27 too. Congrats on your studies! Right now I am working on a BS in the evenings but my kids are my main focus. > > My oldest child has autism. I wonder if you are studying that? > > I REALLY want to adopt this little girl. We are just waiting for our local agency to give us the thumbs up. She will be our last child. She is pretty close in age to the others so sometimes agencies hesitate. > > Thanks again. Talk to you soon, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 , I have been so sad since reading about this Korean girl up for adoption - I was wishing that my husband and I could adopt her. My daughter Emerence was diagnosed possible RSS last spring ans definite SGA. Her geneticist here at Childrens Boston has tested her for a lot of metabolic disorders and decided that even though she doesn't have the RSS face she does have enough other characteristics to call her mild RSS. She is 20 months old and weighs 18 lbs 11 oz and is 28.5 " . She is smart, funny and adorable...we call her Small Girl with Attitude! She does eat (no g-tube) but small quantities so I feed her breakfast, snack, lunch, 2 snacks, dinner and snack. High calorie foods are the name of the game - yogurt with cream, butter, cheese etc. I think that you already have 2 adopted shows you have the determination and the love for a child who has RSS. Currently my daughter gets 1/2 hr of physical therapy at home 2x a week and occupational therapy for eating 2x/month and they go to her daycare. She probably has 6-7 more dr. appts per year than my son. We are on the mild end of RSS by far. If you do adopt her, this group has been a wonderful support for me since I joined. Good luck - please keep us informed and post pictures! , 4.5, Emerence 20 mo SGA, mild RSS, 18lb 11 oz, 28.5 " > > Hi everyone! I am new here. My name is and my husband and I > are hoping to adopt a little girl who has RSS. She is 11 months old > and is in Korea. We have two biological children and two Korean > born children now. We saw her on our agency's website and just > melted. > > I have done a lot of research on RSS but is there any one thing you > all think we should know? > > Please feel free to email me J21inca@a... > > Thank you so much! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 - welcome to the group. I have a daughter - SGA - possible RSS by Dr. H (although our genetecist feels she is mild RSS) - diagnosis is difficult. My daughter, , just turned 1 Sept 8th - I see that this little girl is almost 1. I did read her bio - sounds like she is doing all the same things my daughter is. receives OT 1 hour/week in our home. Because we live in a rural state we have to travel 5 hours every 3 months for Dr. appts (endocrinologist). I would say this would be one thing to consider - where you live and what type of medical services are available to you. I have 3 children - ages 4, 2, and 1 - and without great family support - our leaving every 3 months for would be difficult. This little girl is beautiful, I checked her out - I have a friend who lost their child in utero and were considering adopting her as well. Anyway, I am so happy you are so interested. She would be a wonderful addition to your family! Good Luck! Jane, mom to - 1 year 13# 14oz, 26 " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Hi , I'm . I have an 8 1/2 month old daughter who is 'clinically' diagnosed as RSS. She is the most beautiful girl I have ever seen and I don't know what I'd do without her. I can tell you it is great that you already know she has RSS, because getting a diagnosis for it half the battle, at least for me. Now you know what to work with. My daughter seems to have a milder form of it, our biggest problem with her is getting her to eat enough, and from what I read on this website, it will be a continuous problem. Everyone one this website has been very helpful and I'm so happy you've found us! I wish I could give you some wonderful advice, but I'm still pretty new at this. I do wish your family the best of luck! (27 years) Mom of Autumn 8 1/2 months 12lbs 15 oz 24 inches and 2 crazy but cute little boys ages 2 and 6 > > Hi everyone! I am new here. My name is and my husband and I > are hoping to adopt a little girl who has RSS. She is 11 months old > and is in Korea. We have two biological children and two Korean > born children now. We saw her on our agency's website and just > melted. > > I have done a lot of research on RSS but is there any one thing you > all think we should know? > > Please feel free to email me J21inca@a... > > Thank you so much! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2004 Report Share Posted October 8, 2004 - Can you tell me if you are referring to Jeong Yeon Lee from the Rainbowkids.com website? She is file #104-05. The reason I ask is that I had worked with the original adoptive family who ended up declining her (they have 5 children, long story). However, the prospective adoptive mother had brought all her medical records, videos, photos, etc. to the MAGIC convention, and we met with Dr. Harbison, who is a pediatric endo considered most experienced in RSS in the US. I sat in on this meeting. If we are referring to the same child, please email me privately and I can tell you everything. It was good news. I am itching to find out, because I have been working with several other families here on this listserve to ensure that this little girl gets adopted, and there are two families that have been contacting the agency. Wouldn't it be amazing if one little girl was so wanted!!!! It makes my heart pound!!! I am gone from Friday through Monday night at a MAGIC meeting in Chicago, and then my own daughter's checkup with Dr. Harbison in New York City. We also live in California, in southern cal in Manhattan Beach. Maybe we can hook up sometime? Salem (y, age 8 1/2, RSS & Tyler, age 7 1/2) > > Hi everyone! I am new here. My name is and my husband and I > are hoping to adopt a little girl who has RSS. She is 11 months old > and is in Korea. We have two biological children and two Korean > born children now. We saw her on our agency's website and just > melted. > > I have done a lot of research on RSS but is there any one thing you > all think we should know? > > Please feel free to email me J21inca@a... > > Thank you so much! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2004 Report Share Posted October 8, 2004 hey jamie!! i am so glad that she will be able to go to such a loving and caring family. i could only wish to be able to adopt her, but financially i wouldnt be able to right now. but beleive me it pulled at mine and my husbands heart strings and we were going to see if there was any way we could pull it off. good luck and remember we are here for you!!! jodie c. -- In RSS-Support , J21inCA@a... wrote: > Wow, small world! > > We are cautiously hopeful that we will be able to get this baby girl and > bring her home next year. Things are moving along nicely. > > I am SO GLAD to have found all of you! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2004 Report Share Posted October 8, 2004 , Oh my goodness!! My husband and I " adopted " a dog last month, and that's plenty of responsibility for us now!!! I can't believe you're going to school AND raising a large family... at my age (gosh, I'm sounding old)! Congratulations to you! btw, I actually study Fetal Alcohol Syndrome, but did consider working with one of the big name autism researchers when I was looking at grad schools. I'm definitely interested in developmental neuroscience... we'll see where my career ends up! Please keep us updated on how the adoption process goes! -Ana > Hi Ana, > > Thank you for your quick and wonderful response. I am 27 too. Congrats on your studies! Right now I am working on a BS in the evenings but my kids are my main focus. > > My oldest child has autism. I wonder if you are studying that? > > I REALLY want to adopt this little girl. We are just waiting for our local agency to give us the thumbs up. She will be our last child. She is pretty close in age to the others so sometimes agencies hesitate. > > Thanks again. Talk to you soon, > Quote Link to comment Share on other sites More sharing options...
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