RSS Adult

[Guest guest]

Hello, I'm a 28 year old Adult with RSS. I read all of ya'lls emails

everyday and I'm glad ya'll have somewhere to come to swap stories and advice.

I

wish growing up I had someone to share my experiences with. I just wanted to

share alittle bit of my history with you. I was a month late and weighed 3lb

3oz. I spent 2 1/2 months in an incubator. Doctors told my parents I probably

wouldn't make it and if I did I would never live a " normal " life, but my

parents made up their mind they would never hold me back. It was very difficult

for

them, I had to be feed every 2 hours for months, but I never had to have a

tube. The doctors said I would never walk - I started walking before I was a

year old wearing a triple 0 size shoe, which had to be specialty made. My dad

got so tired of everybody staring and asking questions he had me a shirt made

that said " I'm not little, everybody else is just big " Against the doctors

wishes I started school the same time as all the other kids. Even though I was

always a foot shorter than all my classmates, I always had a smile on my face

and had a great outlook. I didn't see my height as a problem. By the time I

was diagnosed with RSS I was in early elementary school. I had a wonderful

doctor, some of you might know her, Joyclyn Elders, she went on to become

Surgeon

General. I started GH shots when I was in the 3rd grade. I wish they had

the research earlier so I could have started them early on, but they helped me

some never the less. Even though it cost my parents $10,000 a year with no

help from insurance, I am so grateful. I am 4'8 now, which isn't as tall as

some

RSS kids get, I'm just thankful to be this tall. No matter how much I ate I

couldn't gain weight ( I wish I had that problem now) 10 years ago when I

graduated high school (12th in my class with honors) I weighed 60 lbs...now I'm

up to 90. Even though I wore braces for 4 years, I'm gonna have to have them

again thanks to my wisdom teeth coming in. I'm also gonna have to have my jaws

broken and fixed to make my mouth open up wider, which I'm not looking

forward to. I know I have been very fortunate that I haven't had many problems

up

until now. I realize that I was & am very lucky. I am so grateful that my

folks were so supportive. Thanks to them I am the most independent one out of

the family. I work 2 jobs, own my own place and have everything I could ever

want, especially a very loving family. I admire all of you and I have seen all

the pictures of your children. They are all just adorable, they look a lot

like I did. Never count us out, we may be little, but we are very tough kids

God made us all special for some reason. Even though I've been through so

much, I am so blessed. I'm sorry this is so long and I hope I didn't bore any

of you to death. Thats my experience, feel free to ask me anything.

Teri

[Guest guest]

Hi teri-

it is so good to hear from an adult with rss. my son christopher was

5 lbs 10 oz when born and i to had to wake him every 2 hours to nurse

him but for three months. he has never needed a tube either. he also

walked at 11 months and so far seems to have no problems medically.

we are in the process of beginning ght, christopher will be three on

dec. 15. he is now 22 lbs and 33 " . his dentist has already said he

will need braces as well when he gets older. i really hope all goes

well for you when you have to have your jaw broken. and i hope to

hear from youin the future.

have a happy turkey day today.

jodie (on of three on this listserve)

(nicholas-5 nonrss, christopher-almost3 rss, johnathon-5m nonrss)

> Hello, I'm a 28 year old Adult with RSS. I read all of ya'lls

emails

> everyday and I'm glad ya'll have somewhere to come to swap stories

and advice. I

> wish growing up I had someone to share my experiences with. I just

wanted to

> share alittle bit of my history with you. I was a month late and

weighed 3lb

> 3oz. I spent 2 1/2 months in an incubator. Doctors told my

parents I probably

> wouldn't make it and if I did I would never live a " normal " life,

but my

> parents made up their mind they would never hold me back. It was

very difficult for

> them, I had to be feed every 2 hours for months, but I never had to

have a

> tube. The doctors said I would never walk - I started walking

before I was a

> year old wearing a triple 0 size shoe, which had to be specialty

made. My dad

> got so tired of everybody staring and asking questions he had me a

shirt made

> that said " I'm not little, everybody else is just big " Against the

doctors

> wishes I started school the same time as all the other kids. Even

though I was

> always a foot shorter than all my classmates, I always had a smile

on my face

> and had a great outlook. I didn't see my height as a problem. By

the time I

> was diagnosed with RSS I was in early elementary school. I had a

wonderful

> doctor, some of you might know her, Joyclyn Elders, she went on to

become Surgeon

> General. I started GH shots when I was in the 3rd grade. I wish

they had

> the research earlier so I could have started them early on, but

they helped me

> some never the less. Even though it cost my parents $10,000 a year

with no

> help from insurance, I am so grateful. I am 4'8 now, which isn't

as tall as some

> RSS kids get, I'm just thankful to be this tall. No matter how

much I ate I

> couldn't gain weight ( I wish I had that problem now) 10 years ago

when I

> graduated high school (12th in my class with honors) I weighed 60

lbs...now I'm

> up to 90. Even though I wore braces for 4 years, I'm gonna have to

have them

> again thanks to my wisdom teeth coming in. I'm also gonna have to

have my jaws

> broken and fixed to make my mouth open up wider, which I'm not

looking

> forward to. I know I have been very fortunate that I haven't had

many problems up

> until now. I realize that I was & am very lucky. I am so grateful

that my

> folks were so supportive. Thanks to them I am the most independent

one out of

> the family. I work 2 jobs, own my own place and have everything I

could ever

> want, especially a very loving family. I admire all of you and I

have seen all

> the pictures of your children. They are all just adorable, they

look a lot

> like I did. Never count us out, we may be little, but we are very

tough kids

> God made us all special for some reason. Even though I've been

through so

> much, I am so blessed. I'm sorry this is so long and I hope I

didn't bore any

> of you to death. Thats my experience, feel free to ask me anything.

>

> Teri

>

>

>

[Guest guest]

Thanks, Terry! What a wonderfully appropriate post for Thanksgiving!!! So

encouraging to my heart.

Inga

Mom to , 8yrs old RSS

At 11:26 PM 11/26/2003 -0500, you wrote:

>Hello, I'm a 28 year old Adult with RSS. I read all of ya'lls emails

>everyday and I'm glad ya'll have somewhere to come to swap stories and

>advice. I

>wish growing up I had someone to share my experiences with. I just wanted to

>share alittle bit of my history with you. I was a month late and weighed 3lb

>3oz. I spent 2 1/2 months in an incubator. Doctors told my parents I

>probably

>wouldn't make it and if I did I would never live a " normal " life, but my

>parents made up their mind they would never hold me back. It was very

>difficult for

>them, I had to be feed every 2 hours for months, but I never had to have a

>tube. The doctors said I would never walk - I started walking before I was a

>year old wearing a triple 0 size shoe, which had to be specialty made. My

dad

>got so tired of everybody staring and asking questions he had me a shirt made

>that said " I'm not little, everybody else is just big " Against the doctors

>wishes I started school the same time as all the other kids. Even though I

>was

>always a foot shorter than all my classmates, I always had a smile on my face

>and had a great outlook. I didn't see my height as a problem. By the time I

>was diagnosed with RSS I was in early elementary school. I had a wonderful

>doctor, some of you might know her, Joyclyn Elders, she went on to become

>Surgeon

>General. I started GH shots when I was in the 3rd grade. I wish they had

>the research earlier so I could have started them early on, but they

helped me

>some never the less. Even though it cost my parents $10,000 a year with no

>help from insurance, I am so grateful. I am 4'8 now, which isn't as tall as

>some

>RSS kids get, I'm just thankful to be this tall. No matter how much I ate I

>couldn't gain weight ( I wish I had that problem now) 10 years ago when I

>graduated high school (12th in my class with honors) I weighed 60 lbs...now

>I'm

>up to 90. Even though I wore braces for 4 years, I'm gonna have to have them

>again thanks to my wisdom teeth coming in. I'm also gonna have to have my

>jaws

>broken and fixed to make my mouth open up wider, which I'm not looking

>forward to. I know I have been very fortunate that I haven't had many

>problems up

>until now. I realize that I was & am very lucky. I am so grateful that my

>folks were so supportive. Thanks to them I am the most independent one

out of

>the family. I work 2 jobs, own my own place and have everything I could ever

>want, especially a very loving family. I admire all of you and I have seen

>all

>the pictures of your children. They are all just adorable, they look a lot

>like I did. Never count us out, we may be little, but we are very tough

>kids

> God made us all special for some reason. Even though I've been through so

>much, I am so blessed. I'm sorry this is so long and I hope I didn't bore

any

>of you to death. Thats my experience, feel free to ask me anything.

>

>Teri

>

>

>

[Guest guest]

Jodie,

Do you have a picture of in the photo area. I wanted

to look at him, he sounds so much like my nine year old son

Jonathon. Jon was born at 6 lbs. 11 oz but fell to 6 lbs and stayed

there for quite a while. He never had a tube and is really quite

healthy. You can check out his picture under Jon W.

Pattie

> > Hello, I'm a 28 year old Adult with RSS. I read all of ya'lls

> emails

> > everyday and I'm glad ya'll have somewhere to come to swap

stories

> and advice. I

> > wish growing up I had someone to share my experiences with. I

just

> wanted to

> > share alittle bit of my history with you. I was a month late

and

> weighed 3lb

> > 3oz. I spent 2 1/2 months in an incubator. Doctors told my

> parents I probably

> > wouldn't make it and if I did I would never live a " normal "

life,

> but my

> > parents made up their mind they would never hold me back. It

was

> very difficult for

> > them, I had to be feed every 2 hours for months, but I never had

to

> have a

> > tube. The doctors said I would never walk - I started walking

> before I was a

> > year old wearing a triple 0 size shoe, which had to be specialty

> made. My dad

> > got so tired of everybody staring and asking questions he had me

a

> shirt made

> > that said " I'm not little, everybody else is just big " Against

the

> doctors

> > wishes I started school the same time as all the other kids.

Even

> though I was

> > always a foot shorter than all my classmates, I always had a

smile

> on my face

> > and had a great outlook. I didn't see my height as a problem.

By

> the time I

> > was diagnosed with RSS I was in early elementary school. I had

a

> wonderful

> > doctor, some of you might know her, Joyclyn Elders, she went on

to

> become Surgeon

> > General. I started GH shots when I was in the 3rd grade. I

wish

> they had

> > the research earlier so I could have started them early on, but

> they helped me

> > some never the less. Even though it cost my parents $10,000 a

year

> with no

> > help from insurance, I am so grateful. I am 4'8 now, which

isn't

> as tall as some

> > RSS kids get, I'm just thankful to be this tall. No matter how

> much I ate I

> > couldn't gain weight ( I wish I had that problem now) 10 years

ago

> when I

> > graduated high school (12th in my class with honors) I weighed

60

> lbs...now I'm

> > up to 90. Even though I wore braces for 4 years, I'm gonna have

to

> have them

> > again thanks to my wisdom teeth coming in. I'm also gonna have

to

> have my jaws

> > broken and fixed to make my mouth open up wider, which I'm not

> looking

> > forward to. I know I have been very fortunate that I haven't

had

> many problems up

> > until now. I realize that I was & am very lucky. I am so

grateful

> that my

> > folks were so supportive. Thanks to them I am the most

independent

> one out of

> > the family. I work 2 jobs, own my own place and have everything

I

> could ever

> > want, especially a very loving family. I admire all of you and

I

> have seen all

> > the pictures of your children. They are all just adorable, they

> look a lot

> > like I did. Never count us out, we may be little, but we are

very

> tough kids

> > God made us all special for some reason. Even though I've been

> through so

> > much, I am so blessed. I'm sorry this is so long and I hope I

> didn't bore any

> > of you to death. Thats my experience, feel free to ask me

anything.

> >

> > Teri

> >

> >

> >

[Guest guest]

Teri,

Thank you for your post. It was so uplifting to your story. I just

hope my feels like you do when he grows up. He has dealt with

so much in his short 18 months. He was born at 34 weeks weighing 2

lbs. 12 1/2 oz. He is now up to 12 lbs. 4 oz. He has gained a

considerable amout in the last two weeks, but beofre that, we were

lucky if he gained 3 oz. a week, and typically it was one ounce a

week. He is tube fed, and still can't get enough calories. Even

still he throws up a good bit. He is just so calorie and volume

sensitive.

I was just so glad to read your post. It really sounds like you have

wonderful and supportive parents. That is so awesome. I try to do

all I can for . He is going through a little attitude problem

right now, though. He is so tired of being poked and messed with.

I have to understand, although it can be a little nerve racking at

times. It is so hard for us to even take him anywhere in the car

because he tends to throw up and I always have to pull over and tend

to him. I wish he didn't have to go through all this. It is so much

for a child to deal with.

We just learned recently that has RSS. For the first 15

months of his life, we didn't have a clue why he was struggling with

weight gain and not being able to keep much down. He was in the

hospital his first three months. Two of that being in the

incubator. He was on oxygen until he was about two and a 1/2 months

old. It was hard road, not knowing what was wrong with him.

Originally, they made it seem pretty bad. They thought he may have

been retarded, and possibly not have a " normal " life. That was

devastating for us, but we muddled through it and here we are today.

is very smart, and tries so hard to do things. He interacts

very well with us and his brother. They say he does great

cognitively and socially, and that his fine motor skills are

excellent. His main problem is the gross motor skills. He has just

gained almost two pounds in a month, and he has come so far. Just in

two weeks he was sitting without support and now he is going through

the begining stages of walking. I am so proud of how far he has

come. I just hope he continues to do this well and has this desire

and drive about him. He is do determined. I guess these kids almost

have to be.

I enjoyed your post, and I hope to hear from you again soon.

Jodi Rollison

5/23/2002 RSS

12 lbs. 4 oz., 25 1/2 in.

> Hello, I'm a 28 year old Adult with RSS. I read all of ya'lls

emails

> everyday and I'm glad ya'll have somewhere to come to swap stories

and advice. I

> wish growing up I had someone to share my experiences with. I just

wanted to

> share alittle bit of my history with you. I was a month late and

weighed 3lb

> 3oz. I spent 2 1/2 months in an incubator. Doctors told my

parents I probably

> wouldn't make it and if I did I would never live a " normal " life,

but my

> parents made up their mind they would never hold me back. It was

very difficult for

> them, I had to be feed every 2 hours for months, but I never had to

have a

> tube. The doctors said I would never walk - I started walking

before I was a

> year old wearing a triple 0 size shoe, which had to be specialty

made. My dad

> got so tired of everybody staring and asking questions he had me a

shirt made

> that said " I'm not little, everybody else is just big " Against the

doctors

> wishes I started school the same time as all the other kids. Even

though I was

> always a foot shorter than all my classmates, I always had a smile

on my face

> and had a great outlook. I didn't see my height as a problem. By

the time I

> was diagnosed with RSS I was in early elementary school. I had a

wonderful

> doctor, some of you might know her, Joyclyn Elders, she went on to

become Surgeon

> General. I started GH shots when I was in the 3rd grade. I wish

they had

> the research earlier so I could have started them early on, but

they helped me

> some never the less. Even though it cost my parents $10,000 a year

with no

> help from insurance, I am so grateful. I am 4'8 now, which isn't

as tall as some

> RSS kids get, I'm just thankful to be this tall. No matter how

much I ate I

> couldn't gain weight ( I wish I had that problem now) 10 years ago

when I

> graduated high school (12th in my class with honors) I weighed 60

lbs...now I'm

> up to 90. Even though I wore braces for 4 years, I'm gonna have to

have them

> again thanks to my wisdom teeth coming in. I'm also gonna have to

have my jaws

> broken and fixed to make my mouth open up wider, which I'm not

looking

> forward to. I know I have been very fortunate that I haven't had

many problems up

> until now. I realize that I was & am very lucky. I am so grateful

that my

> folks were so supportive. Thanks to them I am the most independent

one out of

> the family. I work 2 jobs, own my own place and have everything I

could ever

> want, especially a very loving family. I admire all of you and I

have seen all

> the pictures of your children. They are all just adorable, they

look a lot

> like I did. Never count us out, we may be little, but we are very

tough kids

> God made us all special for some reason. Even though I've been

through so

> much, I am so blessed. I'm sorry this is so long and I hope I

didn't bore any

> of you to death. Thats my experience, feel free to ask me anything.

>

> Teri

>

>

>

[Guest guest]

Teri-

Your story really brightened my day. It gives me hope and

inspiration. Thank you for sharing and I hope you continue to share

more.

F - Mom to Dominic, 4 years old - RSS (24 pounds!!! 34

inches) GHT, etc.

> Hello, I'm a 28 year old Adult with RSS. I read all of ya'lls

emails

> everyday and I'm glad ya'll have somewhere to come to swap stories

and advice. I

> wish growing up I had someone to share my experiences with. I just

wanted to

> share alittle bit of my history with you. I was a month late and

weighed 3lb

> 3oz. I spent 2 1/2 months in an incubator. Doctors told my

parents I probably

> wouldn't make it and if I did I would never live a " normal " life,

but my

> parents made up their mind they would never hold me back. It was

very difficult for

> them, I had to be feed every 2 hours for months, but I never had to

have a

> tube. The doctors said I would never walk - I started walking

before I was a

> year old wearing a triple 0 size shoe, which had to be specialty

made. My dad

> got so tired of everybody staring and asking questions he had me a

shirt made

> that said " I'm not little, everybody else is just big " Against the

doctors

> wishes I started school the same time as all the other kids. Even

though I was

> always a foot shorter than all my classmates, I always had a smile

on my face

> and had a great outlook. I didn't see my height as a problem. By

the time I

> was diagnosed with RSS I was in early elementary school. I had a

wonderful

> doctor, some of you might know her, Joyclyn Elders, she went on to

become Surgeon

> General. I started GH shots when I was in the 3rd grade. I wish

they had

> the research earlier so I could have started them early on, but

they helped me

> some never the less. Even though it cost my parents $10,000 a year

with no

> help from insurance, I am so grateful. I am 4'8 now, which isn't

as tall as some

> RSS kids get, I'm just thankful to be this tall. No matter how

much I ate I

> couldn't gain weight ( I wish I had that problem now) 10 years ago

when I

> graduated high school (12th in my class with honors) I weighed 60

lbs...now I'm

> up to 90. Even though I wore braces for 4 years, I'm gonna have to

have them

> again thanks to my wisdom teeth coming in. I'm also gonna have to

have my jaws

> broken and fixed to make my mouth open up wider, which I'm not

looking

> forward to. I know I have been very fortunate that I haven't had

many problems up

> until now. I realize that I was & am very lucky. I am so grateful

that my

> folks were so supportive. Thanks to them I am the most independent

one out of

> the family. I work 2 jobs, own my own place and have everything I

could ever

> want, especially a very loving family. I admire all of you and I

have seen all

> the pictures of your children. They are all just adorable, they

look a lot

> like I did. Never count us out, we may be little, but we are very

tough kids

> God made us all special for some reason. Even though I've been

through so

> much, I am so blessed. I'm sorry this is so long and I hope I

didn't bore any

> of you to death. Thats my experience, feel free to ask me anything.

>

> Teri

>

>

>