Re: hello, again - I'm new

[Guest guest]

In a message dated 2/15/00 2:23:42 PM Mountain Standard Time,

Jenwali848@... writes:

<< Hi, I'm

I just subscribed a few days ago. I have a daughter, , not YET

" confirmed " diagnoses of RSS. I had sent 2 e-mails on the 14th and haven't

seen any responses yet, did anyone receive them? Maybe there is something

wrong w/ my server?? not sure what though. Anyway, please respond w/

SOMETHING if you receive this, at least I'll know there's nothing wrong.

Thanks

W., mom to (22mos) (4) >>

Hello,

Got this email just fine and Welcome to the list,

[Guest guest]

Hi ,

Welcome to the list! Your messages must not have gone through, possibly

could have been something wrong with your server. You'll know if your

messages have gone through when you receive them back! They'll be posted

along with all the other messages to the list. I hope to hear more from you

about (and !).

Dennise

hello, again - I'm new

>From: Jenwali848@...

>

>Hi, I'm

>I just subscribed a few days ago. I have a daughter, , not YET

> " confirmed " diagnoses of RSS. I had sent 2 e-mails on the 14th and haven't

>seen any responses yet, did anyone receive them? Maybe there is something

>wrong w/ my server?? not sure what though. Anyway, please respond w/

>SOMETHING if you receive this, at least I'll know there's nothing wrong.

>Thanks

> W., mom to (22mos) (4)

>

>---------------------------

[Guest guest]

Hi, , you've reached the right spot. I don't

know if your first email went thru--I'm still reading

about 4 days' worth. Welcome!

Debbi, Jake's mom , 5 on the 20th (Sunday), 27 lbs

(and holding, thank goodness) and 37 3/4 "

PS everyone --there's still room at the Chuck E.

Cheese party-----you're all invited - just let us

know!)

__________________________________________________

[Guest guest]

Hi,

I recieved your message!!! I'm not sure if I got the earlier ones. I'm

really quick with the delite sometimes. But, I got this one!!! Welcome and I

see you have two girls. I remember when I had just two girls, I have two

big girls now and a boy RSS. Which one of your has RSS? is nearly 4

and is 33 inches tall and weighs around 22/23 pounds.

I'm glad to hear from you Danna Mom to , Carol 12, and 10

(Both girls nearly as tall as me!) and Husband Buck

Re: hello, again - I'm new

> From: Minis68463@...

>

> In a message dated 2/15/00 2:23:42 PM Mountain Standard Time,

> Jenwali848@... writes:

>

> << Hi, I'm

> I just subscribed a few days ago. I have a daughter, , not YET

> " confirmed " diagnoses of RSS. I had sent 2 e-mails on the 14th and

haven't

> seen any responses yet, did anyone receive them? Maybe there is something

> wrong w/ my server?? not sure what though. Anyway, please respond w/

> SOMETHING if you receive this, at least I'll know there's nothing wrong.

> Thanks

> W., mom to (22mos) (4) >>

>

> Hello,

>

> Got this email just fine and Welcome to the list,

>

>

> ---------------------------

[Guest guest]

Danna,

is the one with " RSS " - though I'm the only one so far who thinks

that. Her geneticist has told me " she has a genetic disorder which is all her

own, though she falls into a group of disorders which haven't yet been

diagnosed " - go figure. My husband and I figure he thinks, if there's not a

blood test for it, we can't diagnose it. It's taken us almost 6 months of

researching thru the internet to figure out that's not nessicsarily true.

We're going to see him again in March, I don't think he knows what he's in

for- but we have a lot of questions. I'm also seeing an endo, recommended by

Magic in April. We've also sent Jes' picture/characteristics to Dr. H and am

waiting patiently for a response - Anyone know how long that usually takes? Je

s is on a g-tube and currently weighs 9 lbs (a loss of 6oz. - thanks to the

RSV virus). And is 25 in. long - she was born at 1lb 7oz/ 12 in. - at 32

weeks. I'm looking forward to learning alot from this list(I already have) -

and hopefully help others too!!

Oh yeah - anyone in or near Michigan on this list? And how do I get in the

pictures in the " files " that I've heard about?? Thanks, mom to

(22mos. RSS?) (4 1/2)

[Guest guest]

-----Original Message-----

>From: Jenwali848@...

>

And how do I get in the

>pictures in the " files " that I've heard about?? Thanks, mom to

> (22mos. RSS?) (4 1/2)

,

To get into the Files area to view the pictures, get into the ONElist

website (www.onelist.com) and log yourself in. Depending on how you found

the RSS-Support list you may already have a password. If you don't then you

can create one. Once you're in, click on RSS-Support and then click on

Files which is on the lefthand side of your screen. This will take you into

our Files and then you just click on any of the folders to view the

pictures. If you want to down load a picture of , then you can

create a file (button for this is at the bottom of the screen) and then

upload a picture of her into it. If you need further help, just let me

know!

Dennise

[Guest guest]

,

Welcome to the list. Several folks have started recently and there is no

formal welcoming process so if your previous message was missed, I apologize

for the oversight. If you have questions, please re-post them along with

some info about your daughter -- I hope she is doing well. I'm no expert.

My son Bay is just shy of 10 mos so we're fairly new to this, but learning

fast. You'll find the folks here very supportive and informed. Good luck.

hello, again - I'm new

From: Jenwali848@...

Hi, I'm

I just subscribed a few days ago. I have a daughter, , not YET

" confirmed " diagnoses of RSS. I had sent 2 e-mails on the 14th and haven't

seen any responses yet, did anyone receive them? Maybe there is something

wrong w/ my server?? not sure what though. Anyway, please respond w/

SOMETHING if you receive this, at least I'll know there's nothing wrong.

Thanks

W., mom to (22mos) (4)

---------------------------

[Guest guest]

oops! - thanks

[Guest guest]

:

I, also, didn't see your previous emails. Welcome to the list! I'd like to

hear more about your daughter. I have a son, , that is 3 and has RSS,

assemetry and a g-tube. I also have a daughter (no RSS) that is 6 1/2.

Again.....WELCOME!

Stacie

Jenwali848@... wrote:

> From: Jenwali848@...

>

> Hi, I'm

> I just subscribed a few days ago. I have a daughter, , not YET

> " confirmed " diagnoses of RSS. I had sent 2 e-mails on the 14th and haven't

> seen any responses yet, did anyone receive them? Maybe there is something

> wrong w/ my server?? not sure what though. Anyway, please respond w/

> SOMETHING if you receive this, at least I'll know there's nothing wrong.

> Thanks

> W., mom to (22mos) (4)

>

> ---------------------------

[Guest guest]

,

I found your earlier email. I received it through RSS-Solutions, a

different group.

Re: hello, again - I'm new

From: tclfam@...

:

I, also, didn't see your previous emails. Welcome to the list! I'd like to

hear more about your daughter. I have a son, , that is 3 and has RSS,

assemetry and a g-tube. I also have a daughter (no RSS) that is 6 1/2.

Again.....WELCOME!

Stacie

Jenwali848@... wrote:

> From: Jenwali848@...

>

> Hi, I'm

> I just subscribed a few days ago. I have a daughter, , not YET

> " confirmed " diagnoses of RSS. I had sent 2 e-mails on the 14th and haven't

> seen any responses yet, did anyone receive them? Maybe there is something

> wrong w/ my server?? not sure what though. Anyway, please respond w/

> SOMETHING if you receive this, at least I'll know there's nothing wrong.

> Thanks

> W., mom to (22mos) (4)

>

> ---------------------------

[Guest guest]

Hi,

I'm Really tired right now but I'll try to stay coherent, something I

think I lost during the last hour of school today (Joke). My son was

diagnosed relatively early at 5 months by a geneticist. He also had some

other health issues and they took priority over a lot of the size issues.

He has always been a good eater so I didn't have a lot of the problems some

or should I say most parents have. asks for food when he's hungry and

snakes between meals just like any (normal) kid. I sometimes wonder it he

has an absorption problem, or if the just runs the calories off, he's always

going! My husband said he scared him today running off a bank we have in

front of our house. If it scared Buck he had to of been running ninety to

nothing.

We don't have an Endo yet, quite frankly because I didn't know he needed

one. I feel like I've let him down by my ignorance, but when you know

better you do better. I plan to get a referral from his geneticist when we

see her again but between now and then will have another surgery, so

we've put it on a back burner again.

Well it's time for me to start with my homework and the girls are

getting ready to bed and has just got out of the tub and I have to get

him ready for bed.

Again welcome and I'll look forward to hearing more from you and

.

Danna And my crew, Carol, , and Buck.

Re: hello, again - I'm new

> From: Jenwali848@...

>

> Danna,

> is the one with " RSS " - though I'm the only one so far who thinks

> that. Her geneticist has told me " she has a genetic disorder which is all

her

> own, though she falls into a group of disorders which haven't yet been

> diagnosed " - go figure. My husband and I figure he thinks, if there's not

a

> blood test for it, we can't diagnose it. It's taken us almost 6 months of

> researching thru the internet to figure out that's not nessicsarily true.

> We're going to see him again in March, I don't think he knows what he's in

> for- but we have a lot of questions. I'm also seeing an endo, recommended

by

> Magic in April. We've also sent Jes' picture/characteristics to Dr. H and

am

> waiting patiently for a response - Anyone know how long that usually

takes? Je

> s is on a g-tube and currently weighs 9 lbs (a loss of 6oz. - thanks to

the

> RSV virus). And is 25 in. long - she was born at 1lb 7oz/ 12 in. - at 32

> weeks. I'm looking forward to learning alot from this list(I already

have) -

> and hopefully help others too!!

> Oh yeah - anyone in or near Michigan on this list? And how do I get in the

> pictures in the " files " that I've heard about?? Thanks, mom to

> (22mos. RSS?) (4 1/2)

>

> ---------------------------