Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 This is , Grant's father, I was curious to know how things are progressing regarding Agata's care. Did you receive the literature from MAGIC? If you did I hope you found it useful. Have you found doctors who are willing to learn about RSS? We think about you often. > Hi everyone, > 1.My name is Witold W. > 2.We live in Legnica ,Poland > 3.We have two kids:Marta,nonRSS and Agata-RSS > 4.She was born full term-4.1 lbs and 44 cm. > 5.SHe eat on her own since she was born > 6.Warsaw > 7.She was diagnnosed when she was 2 months old > Roll Call > > > > Hi everyone, > > > > A couple of weeks ago I set up a poll to ask if we should have a roll > > call. The majority of voters voted yes, we should. > > > > So, please report in with: > > > > 1). First Name, Last Initial -- we have a lot of Debby's and Jodi's > > on the list. > > 2). Where you live, City and State only. > > 3). How many children you have & how many with RSS. Please include > > ages, heights and weight especially for the children with RSS. > > 4). Birth height, weight, premature and by how much. > > 5). Medication(s), feeding tube and how long they have been on it. > > 6). Doctor or hospital treating your RSS child(ren). This is really > > useful for new members. > > > > Optional -- actually the whole thing is optional > > 7). when diagnosed. > > 8). Anything else you want to add. > > > > I'll go first. > > > > 1).My name is Ken M. -- not too many of those on the list. > > > > 2). We live in Hollis, NH about 50 mile north west of Boston. > > > > 3). We have one child, and he has RSS. He will be 7 on April > > 30. He is 43 " tall and weighs 35 lbs. > > > > 4). He was born 1 month premature, delivered by C section. He was > > 4lbs 5 oz and 17 " long at birth. He was fed by a g-tube for 3 weeks > > but then ate on his own and came home when he was a month old. > > > > 5). He is on growth hormone and has been since July 2002. We just > > stopped giving him periactin but it looks like we will need to start > > that up again. He does not need a feeding tube but we are always just > > one step away from that. > > > > 6). is being treated for his RSS by Dr. Alyne Ricker at Joslin > > Diabettes Clinc, which is just across the street from Children's > > Hospital in Boston. > > > > 7). He was diagnosed when he was about a year old by Dr. Ricker. It > > was confirmed by a geneticist, Dr. , also of Childrens' hospital. > > > > I hope this covers everything. > > > > Ken M > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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