Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 I came to this listserve in June 2000, one month after was diagnosed, and one month after he turned one year old. It was a godsend in terms of just getting some information. I only wish we had a diagnosis and found this much sooner, because that first year was really tough. I check out the posts here every night, and read almost all of them. I don't post too much. is on the milder end of the spectrum, and as others have mentioned, sometimes I don't have much practical info to contribute to some of the issues others are facing. It just really makes me feel like I am doing SOMETHING by just coming here and reading. It makes me feel like I am informed (sometimes more so that the doctors we see.) really hasn't had any interventions -- no GH, GI issues, meds, etc. He is chugging along between the 5 and 10th percentile for height and hugging the 3rd for weight. I wrestle with the GH issue -- if he was bigger, it would be a definite " no " , if he was smaller, a definite " let's try it. " But I am still in the gray " I just don't know " area. (Coupled with an endo who is less than encouraging on the whole topic.) He hit all his milestones on the late end of the normal range. just turned five last month and is graduating from preschool next week. He starts kindergarten in August (bring out the Kleenex for me!) He is 40.5 " and 32 lbs. He has his last t-ball game this Saturday. Even though he is one of the youngest and smallest on the team, he has held his own, and is doing great. (In spite of much tears and gnashing of teeth at the start " Mom, don't make me go to practice! " ) In April he finished up one year of swimming lessons at the YMCA, and in that time promoted up two classes. He loved it so much, we'll probably take him back in the fall -- and he did as well as kids much bigger. I don't mean for this to sound like bragging (well, maybe a little since I am darn proud of him), but more to say he really is FINE. (Which is what I needed/wanted to know when we were first diagnosed.) RSS doesn't rule our life, it isn't even the biggest thing, it is a side issue. I wasn't sure things would turn out this OK, when we first got the diagnosis. Yes, getting him to eat is a challenge -- cajoling, threatening, rewarding, entertaining, reminding -- we do it all, with varying levels of success. Well, after all this rambling, I may have lost my point! But, even though I rarely post, this listserve has been invaluable to my sanity and peace of mind. Sure, isn't dealing with most of the issues that pop up here most often, but I would be lost without you all. I think there are a lot of us out there " coasting " , but at least for me, that doesn't make this listserve any less important to me. Thanks to everyone Mom to - 40.5 " , 32 lbs, and aleady a big 5 year old boy, where did the time go!?!? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 > The world at large doesn't see her as > very different or having issues to > overcome, but I do like when she's > trying so hard to keep her grip on her > practice weapons in Karate with those > extra (even for her size) small hands > (as measured by the geneticist). Or when I couldn't snap the snaps on my Barbie's clothes. Or when I couldn't reach the button in the back to make the " talk " on my Talking Viewmaster. But I could fit into the BEST hiding places during hide-and-seek! And even now....at 38 years old... I sometimes have a hard time opening jars with big tops (like tomato sauce jars). I use a reacher to get the clothes out of our washing machine (because heaven forbid HE notice that the buzzer buzzed and it has to go into the dryer. Then again, he could trip over the pile of dirty laundry and STILL not realize that we had laundry to do until the morning that he needs clean underwear! <wink>). But who do you think is the one who can get the dog's ball from underneath the bed because *I* can crwal under there and Mr. 6', 206 lbs. can't? And...in the interest of fun...I dare ANY of you parents out there to have a picture of your adult selves inside the " VCR/DVD/etc. " section of your entertainment center...with the glass door closed. Because I do. Because I could <VBG>. I'll share, if anyone is interested <G>. So yeah, the issues are always going to be there. But they're all teeny, tiny issues that don't mean SQUAT in the whole course of things. -Sharon- Just an RSS kid who grew up 38Y, 3M, 4'6.75 " , didn't weigh myself this morning...let's say 89 lbs, for arguement's sake. OK...you caught me....probably 94 lbs. But it's still not 101, like what I was in October! I hate cruises...they make you eat too much...and who knew, 30-35 years ago, that I'd EVER have to WATCH MY WEIGHT?!?!?!?! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 sharon- you are the best!!!you are soo funny!!! i know what you mean about the hiding christopher gets into the smallest places, i tell everyone i need to attach one of those bright orange bike flags on a long stick to his butt so i can find where he goes!!! LOL!!! i am going to see about him taking horseback riding lessons-i figure he might be a good jockey some day!!! LOL!! you and all the rss kids and adults can all do what ever you put your mind to!! heck i cant even open some of the jars and i am 5'10 " and 203lbs (just lost 7lbs of baby weight!!! YEAH!! only 53lbs to go!! LOL!!) take care!! jodie (nicholas-6 nonrss, christopher-3 rss 23lbs 8.5oz 33 " periactin, ght genotropin(on hold until july), ADHD (possible), assmentry(left side 1cm), johnathon-11m nonrss) > > The world at large doesn't see her as > > very different or having issues to > > overcome, but I do like when she's > > trying so hard to keep her grip on her > > practice weapons in Karate with those > > extra (even for her size) small hands > > (as measured by the geneticist). > > Or when I couldn't snap the snaps on my Barbie's clothes. > Or when I couldn't reach the button in the back to make the " talk " > on my Talking Viewmaster. > But I could fit into the BEST hiding places during hide-and-seek! > > And even now....at 38 years old... > I sometimes have a hard time opening jars with big tops (like tomato > sauce jars). > I use a reacher to get the clothes out of our washing machine > (because heaven forbid HE notice that the buzzer buzzed and it has > to go into the dryer. Then again, he could trip over the pile of > dirty laundry and STILL not realize that we had laundry to do until > the morning that he needs clean underwear! <wink>). > But who do you think is the one who can get the dog's ball from > underneath the bed because *I* can crwal under there and Mr. 6', 206 > lbs. can't? > > And...in the interest of fun...I dare ANY of you parents out there > to have a picture of your adult selves inside the " VCR/DVD/etc. " > section of your entertainment center...with the glass door closed. > Because I do. Because I could <VBG>. I'll share, if anyone is > interested <G>. > > So yeah, the issues are always going to be there. But they're all > teeny, tiny issues that don't mean SQUAT in the whole course of > things. > > -Sharon- > Just an RSS kid who grew up > 38Y, 3M, 4'6.75 " , didn't weigh myself this morning...let's say 89 > lbs, for arguement's sake. OK...you caught me....probably 94 lbs. > But it's still not 101, like what I was in October! I hate > cruises...they make you eat too much...and who knew, 30-35 years > ago, that I'd EVER have to WATCH MY WEIGHT?!?!?!?! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 has really small hands and feet too! My girlfriend's soon-to-be 1 yr old has larger hands by at least a knuckle, and is wearing a size 4 shoe!!! has been wearing his Size 2's for almost a year!! I have to say it's nice to have to buy shoes because they've actually worn them out, and not just out grown them. loves to play ball of any kind, but his hands are so small that it takes two to get a grip on most balls. He's got quite an arm, and great aim!! Talk about funny looks! LOL Pat (g-ma to , RSS, 29 months, 21# 7.6oz, 30.5 " , Prevacid, Singulair, Miralax, GT) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Hey , You should have seen me at the convention last year! LOL Everyone was looking at (chubby little booger that he is) and questioning whether or not he was truly RSS. So many people asked, so many times, that I finally cornered Dr H and asked if she was " sure " that B was RSS! LOL Being that he was one of her more " severe " cases, she looked at me like I was nuts! LOL I think we all question the dx sometimes, especially when the kids are doing well! Hugs to you both! Pat (g-ma to , RSS, 29 months, 21# 7.6oz, 30.5 " , Prevacid, Singulair, Miralax, GT) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Hey Sandy, It is so reassuring to hear that is doing so well. is only 2.5, so he's not in any organized sports or anything yet, but he loves ball of any kind, so I'm sure it's in his future. I have to remember to get a pic of him with a batting helmut on, and trying to lift a full-sized bat to post! LOL it is adorable!! Pat (g-ma to , RSS, 29 months, 21# 7.6oz, 30.5 " , Prevacid, Singulair, Miralax, GT) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 I just realized reading your post that I NEED to know that there are other RSS kids like my daughter, with mild issues. There are times I question the dx and wonder if I'm just overconcerned because she's small. The world at large doesn't see her as very different or having issues to overcome, but I do like when she's trying so hard to keep her grip on her practice weapons in Karate with those extra (even for her size) small hands (as measured by the geneticist). It's great to know there are other parents with these little problems that at times seem so big. Listserve/milder RSS/Update on - kinda long I came to this listserve in June 2000, one month after was diagnosed, and one month after he turned one year old. It was a godsend in terms of just getting some information. I only wish we had a diagnosis and found this much sooner, because that first year was really tough. I check out the posts here every night, and read almost all of them. I don't post too much. is on the milder end of the spectrum, and as others have mentioned, sometimes I don't have much practical info to contribute to some of the issues others are facing. It just really makes me feel like I am doing SOMETHING by just coming here and reading. It makes me feel like I am informed (sometimes more so that the doctors we see.) really hasn't had any interventions -- no GH, GI issues, meds, etc. He is chugging along between the 5 and 10th percentile for height and hugging the 3rd for weight. I wrestle with the GH issue -- if he was bigger, it would be a definite " no " , if he was smaller, a definite " let's try it. " But I am still in the gray " I just don't know " area. (Coupled with an endo who is less than encouraging on the whole topic.) He hit all his milestones on the late end of the normal range. just turned five last month and is graduating from preschool next week. He starts kindergarten in August (bring out the Kleenex for me!) He is 40.5 " and 32 lbs. He has his last t-ball game this Saturday. Even though he is one of the youngest and smallest on the team, he has held his own, and is doing great. (In spite of much tears and gnashing of teeth at the start " Mom, don't make me go to practice! " ) In April he finished up one year of swimming lessons at the YMCA, and in that time promoted up two classes. He loved it so much, we'll probably take him back in the fall -- and he did as well as kids much bigger. I don't mean for this to sound like bragging (well, maybe a little since I am darn proud of him), but more to say he really is FINE. (Which is what I needed/wanted to know when we were first diagnosed.) RSS doesn't rule our life, it isn't even the biggest thing, it is a side issue. I wasn't sure things would turn out this OK, when we first got the diagnosis. Yes, getting him to eat is a challenge -- cajoling, threatening, rewarding, entertaining, reminding -- we do it all, with varying levels of success. Well, after all this rambling, I may have lost my point! But, even though I rarely post, this listserve has been invaluable to my sanity and peace of mind. Sure, isn't dealing with most of the issues that pop up here most often, but I would be lost without you all. I think there are a lot of us out there " coasting " , but at least for me, that doesn't make this listserve any less important to me. Thanks to everyone Mom to - 40.5 " , 32 lbs, and aleady a big 5 year old boy, where did the time go!?!? Quote Link to comment Share on other sites More sharing options...
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