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Sheri,,,,,,omg girl you are doing GREAT !! CONGRATS !! please keep us updated

as to how you are progressing,,,,,,and I can only hope I will have the success

that you are having !!

Again ,,,Congrats !!

Deitra

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  • 1 month later...

Chrissy,

well, at least Dr. still thinks you have pancreatic problems and

isn't being swayed by the doctor in Cinci. I know that's happened with a

number of people in out group. I hope they find the right place to have

the surgery done and that it stops your pain, etc. Keep us updated on

how this goes as time gtoes by. You have all my prayers that it doesn't

take very long.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

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  • 8 months later...
Guest guest

Hi Amy,

My name is and I haven't posted in awhile either. I have a 4 1/2 year

old son named Jordan who also has RSS and I am expecting my second child in 6

weeks - a boy . We won't be at the convention this year either. Wish

you all the luck with your delivery. I am home on semi bedrest due to 2

episodes of bleeding 2 weeks ago. They say everything is OK - no problem with

the

placenta. I guess we'll just have to wait and see. Take care

mom to Jordan Gtube, GH

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Hi everyone! I have not posted for awhile so I thought I would take

a few minutes while both kids are gone to the movies to give a quick

update.

Abby is continuing to thrive following the gtube placement 10 weeks

ago. In just six weeks she gained 4 pounds and 4 inches. She is on

cloud nine as she is finally growing out of clothes and has to go

shopping for new ones. School is over here so she is outside

playing all the time.

You will not believe this one, but Abby's genetics doctor who

diagnosed her in October 2004 just diagnosed a little boy with RSS

that lives only 2 miles from us. I spoke to her doctor and he said

the awareness of RSS is on the rise and that everyone on this

listserve is to thank for that. He has also diagnosed at least one

other child with RSS in the last month.

I am working with the genetics doctor to form a local (state of

Indiana) support group for RSS families. I think if we can plan

events like going to the zoo or other places it will help those who

are struggling with the diagnosis feel more comfortable.

I am four weeks away from baby #3. Yeah, the end is near.

I hope all is well with everyone. I wish I could see you at the

convention but we will not be there with a new baby.

Take care, Amy

mom to Abby - almost 5, RSS, gtube, growth hormones, prevacid;

Tyler - 3 1/2, nonRSS, wild child; Baby Boy ( Dean) due in

four weeks

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Hey ,

How are you doing? How is Jordan? I won't be at the

convention this year either. I hope that when we do

the NJ Gathering again this fall, you will be coming

with your boys!!! Keep us posted on 's

delivery!

B

5 and Kelli 2 3/4

--- lafl109@... wrote:

> Hi Amy,

>

> My name is and I haven't posted in awhile

> either. I have a 4 1/2 year

> old son named Jordan who also has RSS and I am

> expecting my second child in 6

> weeks - a boy . We won't be at the convention

> this year either. Wish

> you all the luck with your delivery. I am home on

> semi bedrest due to 2

> episodes of bleeding 2 weeks ago. They say

> everything is OK - no problem with the

> placenta. I guess we'll just have to wait and see.

> Take care

>

> mom to Jordan Gtube, GH

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________

Discover Yahoo!

Find restaurants, movies, travel and more fun for the weekend. Check it out!

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Guest guest

That's great news Amy. I hope you are feeling well

and good luck in 4 weeks.

B

5 and Kelli 2 3/4

--- Amy Nickol wrote:

> Hi everyone! I have not posted for awhile so I

> thought I would take

> a few minutes while both kids are gone to the movies

> to give a quick

> update.

>

> Abby is continuing to thrive following the gtube

> placement 10 weeks

> ago. In just six weeks she gained 4 pounds and 4

> inches. She is on

> cloud nine as she is finally growing out of clothes

> and has to go

> shopping for new ones. School is over here so she

> is outside

> playing all the time.

>

> You will not believe this one, but Abby's genetics

> doctor who

> diagnosed her in October 2004 just diagnosed a

> little boy with RSS

> that lives only 2 miles from us. I spoke to her

> doctor and he said

> the awareness of RSS is on the rise and that

> everyone on this

> listserve is to thank for that. He has also

> diagnosed at least one

> other child with RSS in the last month.

>

> I am working with the genetics doctor to form a

> local (state of

> Indiana) support group for RSS families. I think if

> we can plan

> events like going to the zoo or other places it will

> help those who

> are struggling with the diagnosis feel more

> comfortable.

>

> I am four weeks away from baby #3. Yeah, the end is

> near.

>

> I hope all is well with everyone. I wish I could

> see you at the

> convention but we will not be there with a new baby.

>

> Take care, Amy

> mom to Abby - almost 5, RSS, gtube, growth hormones,

> prevacid;

> Tyler - 3 1/2, nonRSS, wild child; Baby Boy (

> Dean) due in

> four weeks

>

>

>

__________________________________

Discover Yahoo!

Use Yahoo! to plan a weekend, have fun online and more. Check it out!

http://discover.yahoo.com/

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Guest guest

Amy,

It is great that Abby is doing so well. That is awesome that she

gained so much weight in that short of time. Isn't it a great

feeling!? :o)

Man, that is neat that you have another RSS family so close to you.

I would love it if I knew someone that close to us with another RSS

child around 's age. It is great to have that support and

comradary that close to you so that you can talk and hang out at

anytime. Instead of having to wait for every Convention! LOL. That

would be a wonderful thing if you guys did start a support group in

your area.

Congrats on the new baby coming. I see that is is going to be a boy!

And guess what? My oldest son's name is DEEN, just spelled

differently! :o) We named him after my husband's sister who had Down

Syndrome. Her name was Lois Dee, but everyone called her Dee. So, I

came up with DEEN for his middle name. We like the unusual spelling

too.. 's middle name is Jacib, after my sister Jaci, pronounced

Jackie. Anyway, too much info. I guess ! :o) I just thought it was

neat that you chose Dean. Doesn't that just sound so good

together?

Jodi

, 3, RSS, J tube, reflux, Prilosec.

, 5 1/2, Non-RSS, Ornery, and always agitationg his baby

brother!

>

> > Hi everyone! I have not posted for awhile so I

> > thought I would take

> > a few minutes while both kids are gone to the movies

> > to give a quick

> > update.

> >

> > Abby is continuing to thrive following the gtube

> > placement 10 weeks

> > ago. In just six weeks she gained 4 pounds and 4

> > inches. She is on

> > cloud nine as she is finally growing out of clothes

> > and has to go

> > shopping for new ones. School is over here so she

> > is outside

> > playing all the time.

> >

> > You will not believe this one, but Abby's genetics

> > doctor who

> > diagnosed her in October 2004 just diagnosed a

> > little boy with RSS

> > that lives only 2 miles from us. I spoke to her

> > doctor and he said

> > the awareness of RSS is on the rise and that

> > everyone on this

> > listserve is to thank for that. He has also

> > diagnosed at least one

> > other child with RSS in the last month.

> >

> > I am working with the genetics doctor to form a

> > local (state of

> > Indiana) support group for RSS families. I think if

> > we can plan

> > events like going to the zoo or other places it will

> > help those who

> > are struggling with the diagnosis feel more

> > comfortable.

> >

> > I am four weeks away from baby #3. Yeah, the end is

> > near.

> >

> > I hope all is well with everyone. I wish I could

> > see you at the

> > convention but we will not be there with a new baby.

> >

> > Take care, Amy

> > mom to Abby - almost 5, RSS, gtube, growth hormones,

> > prevacid;

> > Tyler - 3 1/2, nonRSS, wild child; Baby Boy (

> > Dean) due in

> > four weeks

> >

> >

> >

>

>

>

>

> __________________________________

> Discover Yahoo!

> Use Yahoo! to plan a weekend, have fun online and more. Check it

out!

> http://discover.yahoo.com/

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