Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Hi, My name is Sherri, and I have a daughter, Kirstyn, with RSS who is 13 1/2. We haven't posted in a while. I know this site is more for families with younger RSS children who are going through all those early difficulties and problems of RSS. I just wanted to say that it does get better... I remember the feeding problems, and trying to coax my little 11-pound one-year-old to eat. I remember all the tricks we used to just get her to take " one more bite " of anything. I remember sending her off to kindergarten -- a whopping 19 pounds -- and all the other kids wanting to pick her up and carry her around like a baby. I remember the troubles we had finding " age-appropriate, stylish " clothes for her. Kirstyn is now a 7th grader. She has been taking Humatrope for almost 7 years now. She is still short -- about 4'4 " -- but she makes up for her size with her personality. She is (for the most part, considering she IS a teenager) a happy, well-adjusted, bright, outgoing and reasonably popular young lady. She plays oboe in the band, loves animals and spends too much time IM-ing her friends after school. These kids may not get as tall as we would like, but they do grow up. Height will always be an issue for Kirstyn, but she is learning to deal with it. We have done our best to " fix " this problem -- and she knows it. Life is not perfect, but it is still good... Sherri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 hi sherri!! i am glad that kirstyn is doing so well and thanks for all the reassuring words of wisdom from someone that has an older rss child and has been through it!!! keep us posted on how she is doing. we could use some more input from parents of older rss kids so please post more often you might be able to answere someones questions. thanks jodie (nicholas-5 nonrss, christopher-3 rss 23lbs 33 " ght genotropin .6, johnathon-9m nonrss)- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 thanks for the encouraging words about it getting better - I am now starting to have issues with my daughter tte 9yrs 4th grade = she really is complaining about being small - can't run as fast as everyone - doesn't want the gtube anymore - doesn't want to have a shot every night - this is all new - she has really been a trooper - I guess I knew this day would come.....I really feel so bad for her especially when she says " I wish I wasn't so small - I just want to be normal " ugh....my heart just breaks....I know there really is no solution but thanks for listening.. mom to tte 9yrs g-tube gh Quote Link to comment Share on other sites More sharing options...
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