Re: [Rustyroom] [JRA List] Ellie and Riley

[Guest guest]

Becki:

Was it who took the picture?

Ellie IS such a sweetie. I am so glad that we got to meet her if only

briefly. You got me crying again too!

and Rob 15 Spondy

On Sun, 8 Aug 2004 23:25:13 EDT Arthurnator@... writes:

Hi ,

Somebody took a picture but I can't remember who.It was such an emotional

time and poor Riley didn't have a clue why so many people were so excited

about her.That little bottom lip kept quivering and she was so so shy,yet

so grown up since her posted pictures.

No matter how high profile her job and her husbands, her heart aches for

all of those still in pain.

Ellie is awesome and I pray I get to meet her again.She was so sweet and

kind,you could just squeeze her to death.OK,ready to cry knowing she is

well over 2000 miles away..

Becki and 6 syatemic

PS) has it right,Ellie is HOT!!--inside and out

[Guest guest]

Becki and :

Okay, now the two of you have me crying! You are both so dear to me, as are

your children. I long to meet you all again.

Riley is very shy and sensitive, but she really enjoyed being there and I'm

sure it is something that she will remember always.

Heavens! Our jobs aren't that high profile! Darius is in film acquisitions,

he is so far behind the scenes that you can hardly find him! And I'm just a

hairdresser! I don't even have any celebrity clients! Although I did do

Cheri Oteri before she got on Saturday Night Live and moved to New York. And I

did used to do Trebek's wife's hair. That is where my claim to fame ends!

I don't have any photos. I could kick myself for not bringing my camera. I

think it might have been Stacia who took photos of Riley and myself with the

two of you. But I am not quite sure. It was such an emotional whirlwind that

it is difficult to recall. But wherever they are, I'd love to have copies.

much love,

Ellie and Riley (7 on Friday) poly

PS The two of you are pretty darn " hot " yourselves...inside and out!

xo

In a message dated 8/9/2004 11:55:53 AM Pacific Standard Time,

snooksmama@... writes:

> Becki:

> Was it who took the picture?

> Ellie IS such a sweetie. I am so glad that we got to meet her if only

> briefly. You got me crying again too!

> and Rob 15 Spondy

>

> On Sun, 8 Aug 2004 23:25:13 EDT Arthurnator@... writes:

> Hi ,

> Somebody took a picture but I can't remember who.It was such an emotional

> time and poor Riley didn't have a clue why so many people were so excited

> about her.That little bottom lip kept quivering and she was so so shy,yet

> so grown up since her posted pictures.

> No matter how high profile her job and her husbands, her heart aches for

> all of those still in pain.

> Ellie is awesome and I pray I get to meet her again.She was so sweet and

> kind,you could just squeeze her to death.OK,ready to cry knowing she is

> well over 2000 miles away..

> Becki and 6 syatemic

> PS) has it right,Ellie is HOT!!--inside and out

[Guest guest]

Ellie,

> I think it might have been Stacia who took photos of Riley and

myself with the

> two of you.

I wish I had gotten photos of you guys, but unfortunately I didn't

have my camera on my person the whole weekend except for Sunday

morning with all the kids at the closing ceremony. The only

pictures we got were of Becki's family and Alia and Caroline. I've

kicked myself a whole bunch of times since then that I didn't carry

it with me the whole weekend. There were so many good photo-ops.

boo hoo.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

Stacia,

I learned years ago when you dont have a camera you miss alot. I have a

camera in the car and in my fanny pack i carry. In San diego I had 3 cameras and

all was in the back pack I had s meds in. You should have hollered HEY

SOMEONE GIVE ME A CAMERA lolol. I would have said ok catch lolol. also

had her zoom in the room which she would forget.

Stacia now in RI I will have cameras as well as . So Dont forget to

ask me ok sweetie :-)

Robbin

[Guest guest]

Hello guys!

I think it was me who took pictures of Ellie and Riley at the conference - as

well as a bunch of other shots! I have a cup of film to be developed on my desk

- and unfortunately, I think the AJAO rolls were in mixed with the ones that I

hadn't developed yet before we left for AJAO - too much to take in all at once

- but at 2 - rolls a payday I should find them before too long - I will be happy

to send folks copies when I get them - I love the pictures of Robbie and Rusty

and Robbie and that sent me - I hope the pictures I took come out as

well!

Val

Rob's Mom (6,systemic)

[Guest guest]

Okay, so now that I am back online, I guess I'll start asking questions

again, grin:) What is the [Rustyroom] in the subject heading? I have seen it a

few times and figured it's about time I ask LOL:)

Take care.

Patty

[Guest guest]

Hi Patty,

Rustyroom was created by Uncle Rusty a couple years ago when there got to be

a WHOLE lot of chit chat going on.It's where you can go and vent about

anything as much as you want and don't have to worry about anyone getting upset

about

to much mail.Basicly a place where you can talk about anything not just JRA.

Hugs

Becki and 6 systemic

[Guest guest]

Hi Patty,

just had his 4 month rheumy appointment yesterday at Vanderbilt and

only 2 more doses of MTX which means no more labs,whoo hoo!That part makes him

very happy.Cincinnati is now in charge of tapering the Enbrel and we are at 21

months comlete clinical control.He has also jumped to the 85% in heigh and

weight.

Back to school a couple weeks ago and he shows all the classic sighns of ADHD

so an IEP the 17th.Thats about it.

Hugs

Becki and 6systemic

[Guest guest]

Hi Helen,

About the labs all I know is we don't go back to Vanderbilt again until Dec

22 and no labs in between.

We drive to Cincinnati Sept 20 for s 2yr Enbrel safety study visit.

Thats when we will find out how and when to taper the Enbrel.Probably won't

touch the Enbrel until has been off the MTX for 3 months.

Thanks for asking about him.

I hope Nick is feeling better and the fever was not the Stills.

Hugs

Becki and 6 systemic

[Guest guest]

-Becki...

Im so glad to read at alls well with Mr ...i bet hes over the

moon about the labs.. I take it no labs are needed with the enbrel???

When do they think he will be off the enbrel??

Hugs Helen and (7,systemic)

-- In , Arthurnator@w... wrote:

> Hi Patty,

> just had his 4 month rheumy appointment yesterday at

Vanderbilt and

> only 2 more doses of MTX which means no more labs,whoo hoo!That

part makes him

> very happy.Cincinnati is now in charge of tapering the Enbrel and

we are at 21

> months comlete clinical control.He has also jumped to the 85% in

heigh and

> weight.

> Back to school a couple weeks ago and he shows all the classic

sighns of ADHD

> so an IEP the 17th.Thats about it.

> Hugs

> Becki and 6systemic

>

>

>