Listserve/milder RSS/Update on - kinda long

[Guest guest]

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!?!?

[Guest guest]

> 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?!?!?!?!

[Guest guest]

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?!?!?!?!

[Guest guest]

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)

[Guest guest]

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)

[Guest guest]

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)

[Guest guest]

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!?!?