I don't understand

[Guest guest]

,

I'm not sure I understood your post the other day - the one about

the mom who is not on the listserve anymore. Are you saying that we

should be more careful with what we post so that we don't scare off

new parents or are you saying that you are thankful for this group

because we understand where others don't? I have read and reread

your message and I'm confused.

Jodi

[Guest guest]

Hi,

I think everyone is different. As a new parent facing the possiblity of RSS for

my daughter (who knows maybe not!)I want to learn the truth even if I may not

like what I hear/read. However, this can be scary I think for some people. I

have been the PT/OT route with my son who used a walker for a while before he

could walk. We were told my daughter could be a " little person " 5 months in

utero (she is now 16 months) so we have had time to adjust.

My son also got into a Saturday program at a nearby college because he had

benign hypotonia and because of his age (the group is for PT/OT students at a

nearby university) and they admit about 60 students each semester. They try to

get a mix of ages of kids with different problems so the students could learn

better. My son only had hypotonia (but couldn't walk until 26 months) so the

first day when I got there I felt awkward after some moms told me their kids had

been on a 7 year waitlist! The other moms tried to emphasize that although my

son's problem may not have been as great in scope as some of their children's we

had every right to be there because my son had a problem no matter the severity

and as his mom I needed to give him the best opportunities. Maybe the mom feels

guilty complaining or participating because she is afraid people will think she

shouldn't complain, especially if she feels her child, even with RSS, is doing

better than someone else's. Just a thought because I have been there. You all

seem so nice though, I can't imagine that being a problem.

, 4.5, Emerence almost 16 mo. 16 lb 11 oz.

I don't understand

,

I'm not sure I understood your post the other day - the one about

the mom who is not on the listserve anymore. Are you saying that we

should be more careful with what we post so that we don't scare off

new parents or are you saying that you are thankful for this group

because we understand where others don't? I have read and reread

your message and I'm confused.

Jodi

[Guest guest]

Jodi - Neither one! Sorry! I was more rambling at almost midnight,

just raising some thoughts. The fact is that the listserve, in its

inherent purpose, is for posting questions, problems, etc. When

things are going well for parents, they usually are not posting all

the great news, etc. or they simply don't even log on to the

listserve anymore.

So a new parent who comes on to the listserve may get a distorted

viewpoint in one sense that life with RSS is all of these problems;

that their RSS child is going to have all these different problems.

When the mom, gosh now I forget who it was, asked yesterday about do

all RSS kids not hit their milestones, it made me think again --

have we conveyed through the listserve that most of the RSS kids

don't hit their milestones??? So it got my head rambling, spinning,

thinking.

The listserve is perfect the way it is, and it is been my best

friend in times of trouble. We absolutely should be grateful that

we have each other, as we understand what each other is going

through. And no, I don't think we have to be cautious (am I wrong

here? yikes, I hadn't thought of this) about what we post. However,

that being said, I am thinking, right as I type -- that maybe what I

can do a better job at is making sure that when I post replies to

people, I try and make sure I post qualifiers (yes, a lack of

appetite is very common with RSS children but about 20% have normal

or good appetites, but still typically struggle to gain weight).

Does that make sense? So we could continue to educate about how

important it is to get Early Intervention evaluation and services,

but then make sure we point out that about half or more of RSS

children need no services at all. Does that make sense now?

Sorry for any confusion, guys. I truly was just rambling way late,

answering the email about the milestones when it got my head a-

spinning....

> ,

>

> I'm not sure I understood your post the other day - the one about

> the mom who is not on the listserve anymore. Are you saying that

we

> should be more careful with what we post so that we don't scare

off

> new parents or are you saying that you are thankful for this group

> because we understand where others don't? I have read and reread

> your message and I'm confused.

>

> Jodi

[Guest guest]

I've unsubscribed several times from this list because I get convinced over

and over that Lindsey does not have RSS because I really don't relate to

anyone here. I don't want to come across rude, just honest. I always find my way

back though

Lindsey wasn't diagnosed until she was almost 6, and at the time size wasn't

even a problem in my eyes. We were dealing with behavioral, developmental and

big time speech issues. SPEECH being her number one issue. We had our 2 year

appointment with the genetics Drs. recently and yes, he still believes she's

has RSS,so this is why I just subscribed again.

Lindsey is a very healthy girl thakfully,but I was convinced she was too

healthy for RSS. I understand the people that are worried and desperately need

support, those are the ones that write the most I guess.,and I don't feel like

my worries are anything that the other RSS parents can relate too. Is there

anyone like Lindsey out there? No growth hormones, pretty healthy, but major

speech and developmental issues she's very loose jointed, she has hypotonia,but

she has great strength. She has a high pitched voice with horrible articulation.

she's just turned 8 and she's still not understood alot of the time. She's

being medicated for ADHD and tourettes syndrome. She's immature and her social

skills are poor. But she is the light of my life and says things to crack me

up every day. She's VERY independent and doesn't want anyone to help her with

anything. She's a very determined little girl that that wants to learn to read

and write, but she's having a glitch in her brain I think. Her numbers and

letters are still backwards lot of the time, some days there formed correctly.

She is not dyslexic. She is just learning to read a few words. But her apraxia

is really interfering with this I think. But all said and done she is smart.

Her IQ was normal at 5, hopefully still normal. She doesn't forget anything.

She processes very quick, when I tell her to do something, get something,

where is something. She's very quick to do it or tell me. She's adding some

small

numbers. But for 8 she is very delayed and will be going into a self

contained class in the fall. She's pinches the other children and feel awkward

and

insecure around typical kids because of her speech. She still holds her writing

utensil with her whole hand. She doesn't have good control otherwise.

Can anyone relate at all?

Jennie

[Guest guest]

hi everyone!!

i just wanted to say a little about this issue. i know how the

person who told jen that they were leaving feels. i at one time was

going to leave as well awhile after i jion the list. i felt like no

one wanted to hear about my small complaints or my venting. my

christopher also has i guess you would say a mild rss. he has never

had a tube or real eating issues. dr h put him on periactin in

april to help with his weight gain while taking ght. he met all his

milestones on time or ahead of time. he just started getting some

slight OT in jan. as part of the preschool program he is in. he

scored between a 28th-36th month old on the testing for OT. i felt

that i was bragging when i would talk about how well he was doing.

i also didnt seem to get many responses to my posts (which i even

discussed with some peole on here that did responsed). i stayed

though because i have made many friends through this list and have

learn alot about issuses that i may not even have to deal with. but

i am glad to know these things. i also have shared many of my joys

and the joys of others through this site as well as losses and set

backs for my family and others. i have more friends that i have

never met through this site that i talk to by email, phone, or by

posting than i have here at home. and i am glad to have these.

that is why i stay on and i try to answere or responed to what ever

questions or posts that i can. but i can relate to anyone that feels

they dont belong here. enough said, sorry so long and i cant wait

to meet you all at convention.

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)

[Guest guest]

Jodi,

I have to put my two cents in here.There are two of us here in Vegas that meet

pretty regularly and both of our RSS kids are very mild, a couple of easily

addressed developmental delays like walking and some mild hypoglycemia. We both

feel like we don't quite belong on this listserve, our kids aren't terribly

tiny, their weight for height is good, no tubes, no GH, no periactine, no big

feeding issues. I guess we feel that we can't complain and have little

experience to offer those parents who have much more serious issues with RSS. We

stay because we get useful information and because of the yets like my 5 year

old shows no signs of precocious puberty (except attitude lol) yet.

Anyway we're glad you're here and maybe we should be more vocal here in letting

scared new parents know that there are milder forms of RSS. I think parents

whose kids have a lot of challenges with RSS post more often because they need

more support, I wish I had more to offer them.

, Mom to Destiny 5 RSS 39in 35lbs

Re: I don't understand

Jodi - Neither one! Sorry! I was more rambling at almost midnight,

just raising some thoughts. The fact is that the listserve, in its

inherent purpose, is for posting questions, problems, etc. When

things are going well for parents, they usually are not posting all

the great news, etc. or they simply don't even log on to the

listserve anymore.

So a new parent who comes on to the listserve may get a distorted

viewpoint in one sense that life with RSS is all of these problems;

that their RSS child is going to have all these different problems.

When the mom, gosh now I forget who it was, asked yesterday about do

all RSS kids not hit their milestones, it made me think again --

have we conveyed through the listserve that most of the RSS kids

don't hit their milestones??? So it got my head rambling, spinning,

thinking.

The listserve is perfect the way it is, and it is been my best

friend in times of trouble. We absolutely should be grateful that

we have each other, as we understand what each other is going

through. And no, I don't think we have to be cautious (am I wrong

here? yikes, I hadn't thought of this) about what we post. However,

that being said, I am thinking, right as I type -- that maybe what I

can do a better job at is making sure that when I post replies to

people, I try and make sure I post qualifiers (yes, a lack of

appetite is very common with RSS children but about 20% have normal

or good appetites, but still typically struggle to gain weight).

Does that make sense? So we could continue to educate about how

important it is to get Early Intervention evaluation and services,

but then make sure we point out that about half or more of RSS

children need no services at all. Does that make sense now?

Sorry for any confusion, guys. I truly was just rambling way late,

answering the email about the milestones when it got my head a-

spinning....

> ,

>

> I'm not sure I understood your post the other day - the one about

> the mom who is not on the listserve anymore. Are you saying that

we

> should be more careful with what we post so that we don't scare

off

> new parents or are you saying that you are thankful for this group

> because we understand where others don't? I have read and reread

> your message and I'm confused.

>

> Jodi

[Guest guest]

, Jenn and others,

If there really is a " problem " with people dropping out of the

listserve because they don't think their RSS child has enough

complications, then we are losing focus here. It used to be that

people posted all sorts of things on this listserve - both great,

good and problems. We cheered the birthdays, the walking for the

first time, the taking that first bite of food, etc. There were

parents who just talked about the everyday things that their RSS

child faced, be it good or bad.

But I find that as we have grown, and we have really grown (I think

I was one of the original ten!), we have gotten away from the

positive things and moved on more towards the problems.

It does make sense, though. With all of the postings, it is natural

to want to just post the complications, the worries, the

confusions. People are probably hesitant to post the good stuff

because they don't want to seem like they are bragging or belittling

those of us who may be more involved.

Well, being one of the members with a more involved RSS child, I

still say, bring on the good stuff, too!!!! I may not always

respond to reading your great news (I tend to be a guilty one who

assumes that others will praise), but I still enjoy reading about

it. I think it's great that 's daughter is doing well. I

think it's great that Salem is blending in with her peers

and has found a balance that works for her.

I'm not saying not to post the worries, complaints and such. I've

done my share and will continue to need your support over time. But

bring on the good stuff, too. I don't want anyone to ever feel that

he/she does not " belong " because her child is not " involved

enough. " We are all in this together!

Jodi Z.

[Guest guest]

Hey jenn,

I just had to add my two cents worth in on this subject too! When we first

joined the list serve, would have fit more in the " severe " RSS

sector, than he does today. In the beginning, I was posting daily about one

problem or another, how hard he was to feed, how small he was, how the Drs

didn't seem to know what they were doing, and on, and on, and on. No one

here, where we live, understood RSS, or any of it's complications.

And poor was SO sick all the time. We weren't fighting little things

here, it was ALL life threatening issues!! Finding this list serve, and all

the generous souls contained within, was the BEST thing that ever happened

to my g-son!! You all connected us with Dr H, and you all have a large part

in saving his life!

I DO want to second what Jodi Z. said too! When I first started on this list

serve, there was a ton more cheers going on. I do think we've kind of gotten

away from sharing our daily lives, the little joys, the reached milestones,

the positive things that happen. It would be nice to hear a little more of

that. It would be nice to hear about our kids' successes because the DO have

them!

This IS a GREAT place to be, and the friendships that I've made here are

some of my most precious. It's nice to have people that understand just how

hard, frustrating, and joyful, life with an RSS child can be!!

Hugs to you all!!!

Pat (g-ma to , RSS, 29 months, 21# 7.6oz, 30.5 " , Prevacid, Singulair,

Miralax, GT)

[Guest guest]

Our Mathieu doesn't even have RSS, but short of having a " family group " to

go to for Crohn's for babies...I have adopted RSS as my lurking webfriend.

I Know I may not get a whole of advice from you all with what I am dealing

with since the situations are different in alot of ways, but he is still

small like all of yours, and he is alot messed up right now. Plus, I get

just as many funny looks!!!! I do however get suport and strength, both

from what you share about yourselves and trials and reassurance for my

family.

[Guest guest]

JODI-

WELL SAID!!!! ((HUGS)

JODIE

- In RSS-Support , " Jodi Zwain " <magicrss@h...> wrote:

> , Jenn and others,

>

> If there really is a " problem " with people dropping out of the

> listserve because they don't think their RSS child has enough

> complications, then we are losing focus here. It used to be that

> people posted all sorts of things on this listserve - both great,

> good and problems. We cheered the birthdays, the walking for the

> first time, the taking that first bite of food, etc. There were

> parents who just talked about the everyday things that their RSS

> child faced, be it good or bad.

>

> But I find that as we have grown, and we have really grown (I

think

> I was one of the original ten!), we have gotten away from the

> positive things and moved on more towards the problems.

>

> It does make sense, though. With all of the postings, it is

natural

> to want to just post the complications, the worries, the

> confusions. People are probably hesitant to post the good stuff

> because they don't want to seem like they are bragging or

belittling

> those of us who may be more involved.

>

> Well, being one of the members with a more involved RSS child, I

> still say, bring on the good stuff, too!!!! I may not always

> respond to reading your great news (I tend to be a guilty one who

> assumes that others will praise), but I still enjoy reading about

> it. I think it's great that 's daughter is doing well. I

> think it's great that Salem is blending in with her peers

> and has found a balance that works for her.

>

> I'm not saying not to post the worries, complaints and such. I've

> done my share and will continue to need your support over time.

But

> bring on the good stuff, too. I don't want anyone to ever feel

that

> he/she does not " belong " because her child is not " involved

> enough. " We are all in this together!

>

> Jodi Z.

[Guest guest]

I didn't want to give the impression that we felt unwelcome! Far from it! When

Destiny got her " faiure to thrive " tag at 11 months 11lbs 21 in and RSS was

suspected I found this group and you all held my hand through the finding out

process. My grown daughter kept telling me I was obsessing but you all

understood. Then we got the diagnosis and early intervention, you helped

understand that walking late was normal for RSS and she did, at 16 mo. You

helped me educate my amazing ped who has first suspected RSS but knew nothing

about it. You said bone age test, I said bone age test and she ordered it and

everything else I asked for without question. Now she works with Special

Children's Clinic here partly because of that experience. This group had

something to do with that. Even now that we're " coasting " you gave me help and

support last month with my Kindergarten dilemma, what to do with a kid who's

smaller than most five year olds but can work at a much higher level

academically. You helped me figure out the best answer for my child simply by

being a sounding board.

I just feel like I have little to offer those who have more severe issues to

deal with and truthfully, a little guilty that my child doesn't, even the issues

we face are more positive than negative.

Re: I don't understand

, Jenn and others,

If there really is a " problem " with people dropping out of the

listserve because they don't think their RSS child has enough

complications, then we are losing focus here. It used to be that

people posted all sorts of things on this listserve - both great,

good and problems. We cheered the birthdays, the walking for the

first time, the taking that first bite of food, etc. There were

parents who just talked about the everyday things that their RSS

child faced, be it good or bad.

But I find that as we have grown, and we have really grown (I think

I was one of the original ten!), we have gotten away from the

positive things and moved on more towards the problems.

It does make sense, though. With all of the postings, it is natural

to want to just post the complications, the worries, the

confusions. People are probably hesitant to post the good stuff

because they don't want to seem like they are bragging or belittling

those of us who may be more involved.

Well, being one of the members with a more involved RSS child, I

still say, bring on the good stuff, too!!!! I may not always

respond to reading your great news (I tend to be a guilty one who

assumes that others will praise), but I still enjoy reading about

it. I think it's great that 's daughter is doing well. I

think it's great that Salem is blending in with her peers

and has found a balance that works for her.

I'm not saying not to post the worries, complaints and such. I've

done my share and will continue to need your support over time. But

bring on the good stuff, too. I don't want anyone to ever feel that

he/she does not " belong " because her child is not " involved

enough. " We are all in this together!

Jodi Z.

[Guest guest]

As someone who tends not to post a whole lot, I have to say it is pretty much

because I don't want to " brag " (as someone before mentioned). I have learned a

lot from this list but most of it we have not dealt with and hopefully won't

have to. (ie feeding tubes etc). So I guess I can start the positive ball

rolling.... lol

Keigan has figured out how to walk!!! He took his first few steps a week ago

and now saunters across my livingroom. Maybe I am twisted but I love the looks

we get in public when my 14th month old walks around. Strangers see a 6 month

old walking...for some reason it just cracks me up!

I also added some new pics of him under the photo section. I went and peeked at

the new pics people have put up and wow....we have some really cute kids!

[Guest guest]

hey heather!!

that is soo funny, i remember when christopher started to walk and

we would get the looks " like oh my god look at the 6m old he is so

advanced!!! " i used to laugh as well!! or when we would go to

mcdonalds and give him chicken nuggets around 6m and he looked like

a 3m!!! talk about people looking, i used to just laugh!!! LOL!!!

now that he is on the move-good luck!!! (i have an 11m that is

walking and terrorizing the whole house!!!) and i must say your

keigan is soooo cute as well!!! we may have little angels, but boy

they sure are a bunch of cuties!!!

jodie

(nicholas-6 nonrss, christopher-3 rss 23lbs 8.5oz 33 " periactin, ght

genotropin(on hold until july), ADHD (possible), assmentry (left

side 1cm)

> As someone who tends not to post a whole lot, I have to say it is

pretty much because I don't want to " brag " (as someone before

mentioned). I have learned a lot from this list but most of it we

have not dealt with and hopefully won't have to. (ie feeding tubes

etc). So I guess I can start the positive ball rolling.... lol

> Keigan has figured out how to walk!!! He took his first few steps

a week ago and now saunters across my livingroom. Maybe I am

twisted but I love the looks we get in public when my 14th month old

walks around. Strangers see a 6 month old walking...for some reason

it just cracks me up!

> I also added some new pics of him under the photo section. I went

and peeked at the new pics people have put up and wow....we have

some really cute kids!

>

>

[Guest guest]

heather-

oops i forgot to put johnathon's name after christopher's!!! LOL

johnathon-11m nonrss boy what a bad mommy i am!!! LOL!!!

jodie

> As someone who tends not to post a whole lot, I have to say it is

pretty much because I don't want to " brag " (as someone before

mentioned). I have learned a lot from this list but most of it we

have not dealt with and hopefully won't have to. (ie feeding tubes

etc). So I guess I can start the positive ball rolling.... lol

> Keigan has figured out how to walk!!! He took his first few steps

a week ago and now saunters across my livingroom. Maybe I am

twisted but I love the looks we get in public when my 14th month old

walks around. Strangers see a 6 month old walking...for some reason

it just cracks me up!

> I also added some new pics of him under the photo section. I went

and peeked at the new pics people have put up and wow....we have

some really cute kids!

>

>

[Guest guest]

Way to go Keigan!! didn't walk until he was 21 months old!! I love

the looks we get with B, too! Keigan's pics are wonderful. He's such a

cutie!!

Thanks for sharing!!

Pat (g-ma to , RSS, 29 months, 21# 7.6oz, 30.5 " , Prevacid, Singulair,

Miralax, GT)

[Guest guest]

> didn't walk until he was 21 months old!!

Ahem. Gotcha beat. 25 months for me <G>.

-Sharon-

Just an RSS kid who grew up

4'6.75 " , 94#, 38y3m

[Guest guest]

how exciting - Emerence is 16 mo old almost and isn't quite there yet. It is

pretty funny though in the am when I drop her off at daycare in the toddler room

and this other kid, AJ, 22 mo and a MOOSE compared to her (he has to be at least

35 lbs!!!!) comes over and is so gentle with her! She uses a walking toy and

runs after him and they look hysterical together!

, 4.5, Emerence 16 mo 16 lb 11 oz (RSS ?? SGA)

Re: Re: I don't understand

As someone who tends not to post a whole lot, I have to say it is pretty much

because I don't want to " brag " (as someone before mentioned). I have learned a

lot from this list but most of it we have not dealt with and hopefully won't

have to. (ie feeding tubes etc). So I guess I can start the positive ball

rolling.... lol

Keigan has figured out how to walk!!! He took his first few steps a week ago

and now saunters across my livingroom. Maybe I am twisted but I love the looks

we get in public when my 14th month old walks around. Strangers see a 6 month

old walking...for some reason it just cracks me up!

I also added some new pics of him under the photo section. I went and peeked

at the new pics people have put up and wow....we have some really cute kids!

[Guest guest]

O.K. Sharon, I can top your story for once! Charissa was 26.5 months

when she decided to walk. She *could* have walked sooner, but didn't

like the " falling " part. Stubborn kid, she wouldn't walk until we put a

helium balloon in her hand - I guess she thought it would hold her up.

It almost did - she was only 27 inches and weighed 13 lbs 8 oz - she

wore size 9 months clothes! (This was 4 months before she was diagnosed

GHD & started on Protropin....)

in Alaska, mom of Charissa - age 19, just graduated from High

School and starting a career-development program in the fall.

Misdiagnosed RSS until age 15 years - now we know she has a chromosome

abnormality: the only person in the world known to be diagnosed with

del(17)(13.3) Dr. H. was right - Charissa may be one-of-a-kind!

< Re: I don't understand

> didn't walk until he was 21 months old!!

Ahem. Gotcha beat. 25 months for me .

-Sharon-

Just an RSS kid who grew up

4'6.75 " , 94#, 38y3m

[Guest guest]

Thank you Keigan is already running me ragged. He and his brother both.

Now that Keigan is mobile, they are ganging up on me! LOL I don't dare sit on

the floor and I get dog-piled <vbg>

Re: I don't understand

hey heather!!

that is soo funny, i remember when christopher started to walk and

we would get the looks " like oh my god look at the 6m old he is so

advanced!!! " i used to laugh as well!! or when we would go to

mcdonalds and give him chicken nuggets around 6m and he looked like

a 3m!!! talk about people looking, i used to just laugh!!! LOL!!!

now that he is on the move-good luck!!! (i have an 11m that is

walking and terrorizing the whole house!!!) and i must say your

keigan is soooo cute as well!!! we may have little angels, but boy

they sure are a bunch of cuties!!!

jodie

(nicholas-6 nonrss, christopher-3 rss 23lbs 8.5oz 33 " periactin, ght

genotropin(on hold until july), ADHD (possible), assmentry (left

side 1cm)

> As someone who tends not to post a whole lot, I have to say it is

pretty much because I don't want to " brag " (as someone before

mentioned). I have learned a lot from this list but most of it we

have not dealt with and hopefully won't have to. (ie feeding tubes

etc). So I guess I can start the positive ball rolling.... lol

> Keigan has figured out how to walk!!! He took his first few steps

a week ago and now saunters across my livingroom. Maybe I am

twisted but I love the looks we get in public when my 14th month old

walks around. Strangers see a 6 month old walking...for some reason

it just cracks me up!

> I also added some new pics of him under the photo section. I went

and peeked at the new pics people have put up and wow....we have

some really cute kids!

>

>

[Guest guest]

Thanks I really didnt expect him to walk so soon. I have no idea why since

he hit all his other milestones in the range of normal. I guess I still get

hung up sometimes on " he doesn't look old enough to be doing this " .

Re: Re: I don't understand

Way to go Keigan!! didn't walk until he was 21 months old!! I love

the looks we get with B, too! Keigan's pics are wonderful. He's such a

cutie!!

Thanks for sharing!!

Pat (g-ma to , RSS, 29 months, 21# 7.6oz, 30.5 " , Prevacid, Singulair,

Miralax, GT)

[Guest guest]

Hi Chris-

Ayep, you got me. I feel so...so... " not the end of the spectrum "

now. Gee, I'm not special anymore <wink>.

> Stubborn kid, she wouldn't walk until

> we put a helium balloon in her hand - I

> guess she thought it would hold her up.

AHA! Still gotcha beat. Well...sorta. Moreso just reminded me of

another story.

1973. Age 7. No idea of height or weight...that was my mother's

domain of concern. So let's just say I was tiny and skinny...cuz I

was <G>.

Walking outside with mom, in the rain, Raggedy Ann umbrella open and

in hand. It was one of those clear " bubble " kind of ubrellas that

were popular back then. Gust of wind grabbed umbrella and lifted it

AND ME about 6 " off the group. Fell when I landed. Not hurt...just

scared. After I calmed down, Mom said I looked like Poppins,

hehehe.

Maybe I should've used Charissa's helium balloon...would've made the

landing a little softer <wink>.

Congrats on Charissa's HS graduation!

-Sharon-

Just an RSS kid who grew up

38y3m, 4'6.75 "

Just weighed myself...STILL 94#...and y'know what, I peed my

freakin' BRAINS out yesterday and was SO sure I'd be 93 this

morning. Sigh <G>.

[Guest guest]

hey chris!!

tell charissa congrates on the graduation!!!! and good luck!!

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)

> O.K. Sharon, I can top your story for once! Charissa was 26.5

months

> when she decided to walk. She *could* have walked sooner, but

didn't

> like the " falling " part. Stubborn kid, she wouldn't walk until we

put a

> helium balloon in her hand - I guess she thought it would hold her

up.

> It almost did - she was only 27 inches and weighed 13 lbs 8 oz -

she

> wore size 9 months clothes! (This was 4 months before she was

diagnosed

> GHD & started on Protropin....)

>

> in Alaska, mom of Charissa - age 19, just graduated from High

> School and starting a career-development program in the fall.

> Misdiagnosed RSS until age 15 years - now we know she has a

chromosome

> abnormality: the only person in the world known to be diagnosed

with

> del(17)(13.3) Dr. H. was right - Charissa may be one-of-a-kind!

>

> < Re: I don't understand

>

> > didn't walk until he was 21 months old!!

>

> Ahem. Gotcha beat. 25 months for me .

>

> -Sharon-

> Just an RSS kid who grew up

> 4'6.75 " , 94#, 38y3m

>

>

>

>

[Guest guest]

Hi Sharon,

I *loved* the Poppins story! I need to get my photo albums out to

remind me of some of the funny stuff we've been through.

Chris

< Re: I don't understand

Hi Chris-

Ayep, you got me. I feel so...so... " not the end of the spectrum "

now. Gee, I'm not special anymore .

> Stubborn kid, she wouldn't walk until

> we put a helium balloon in her hand - I

> guess she thought it would hold her up.

AHA! Still gotcha beat. Well...sorta. Moreso just reminded me of

another story.

1973. Age 7. No idea of height or weight...that was my mother's

domain of concern. So let's just say I was tiny and skinny...cuz I

was .

Walking outside with mom, in the rain, Raggedy Ann umbrella open and

in hand. It was one of those clear " bubble " kind of ubrellas that

were popular back then. Gust of wind grabbed umbrella and lifted it

AND ME about 6 " off the group. Fell when I landed. Not hurt...just

scared. After I calmed down, Mom said I looked like Poppins,

hehehe.

Maybe I should've used Charissa's helium balloon...would've made the

landing a little softer .

Congrats on Charissa's HS graduation!

-Sharon-

Just an RSS kid who grew up

38y3m, 4'6.75 "

Just weighed myself...STILL 94#...and y'know what, I peed my

freakin' BRAINS out yesterday and was SO sure I'd be 93 this

morning. Sigh .