Re: [JRA]should be to Elisheva (ooops lol reply to Becki long)

[Guest guest]

Hi Becki,

Ohhhhhh, maybe Tree calls Elisheva Eli lol. I was probably mistaken because I really spell my name Eli, short for Elianna and just changed it to Ellie so people would pronounce it correctly. Sometimes Georgina sends posts to me spelled Eli because that is what I went by when I first started posting. I'm probably the only confused one here lolol.

By the way, I have been keeping up on 's progress and am so thrilled to hear that he is doing well on his pred drop. I think taking it slower then last time is really making the difference. Plus with the Enbrel in his system now I'm sure that he will do just great. How often is he wearing his brace now? We are going to do Riley's labs today. I am a little bit nervous because I have decided not to force Daddy to hold my hand. The last time at children's when I took her by myself wasn't so bad so I am hoping today goes smoothly. We also have PT today. She has another infected toe. We have been soaking her foot in Epsom salt and putting Neosporin on it. She has to wear sandals at school, at home though she is barefootin Princess Riley Jane! I was stretching and bending her legs yesterday and those heels were about an inch shy of her tush. Getting closer! Her next rheumy appointment is on the 2nd. Last time her sed rate was down to 19, here's hoping it's even lower this time. If insurance has done it's job properly she will be authorized to have a night brace made and we will be done with the dynasplint. I hope she doesn't freak out when they saw that cast off of her leg. Any suggestions on how to make that fun? Anyway, I didn't realize I was in such a rambling mood, this was probably a post more suitable for Rustyroom lol, sorry everyone! Hug Tennessee Flash for Princess Riley.

xoxo, Ellie & Riley 5 poly

[Guest guest]

Hi Elli,

Most everyone I know calls Elisheve by her name,so I dont know if Tree was shortening it or not. is out of the brace and loving every minuite of it.I didnt know Riley was in a hard cast.We talked alot to about how it was a special saw and will not, can not, cut the skin. giggled the whole time,he said it tickled.I dont remember if Mr.Bill put the saw to his hand or not,but under s cast was a lot of cotteny stuff.Just keep reassuring her it will not cut her that its a magic saw.I just stood up and tried to touch my heel to my toushy(sp) and cant,I can take my hand and force it,but can feel the thigh muscles get tight,kind of uncomfortable.So that is excellant.Ive learned to not hold alot of faith in SED rates.Ive seen doing GREAT and it be a 32,yet when he had his ankle injected and the 9cc of fluid drained off,they did his labs through his IV and it came back a 10.Weird,huh.Always request a copy of her labs so you can compare.I feel the WBC is the most accurate way of determimg how excited the immune system is.The higher it is the more its attacking the joints,the lower it is means the immune system is calming down.I had s rheumy mail me a script for s next labs because I want them to have them when we go Oct 23.I will take him to our local hospital on the 18,she is so great there and they are cheaper,my insurance does not cover it.I cant wait to see if he has gained another normal.All those darn astrics everywhere.I just love seeing when one dissapears.I know medicated remmission is when all sighns and symptoms of Arthur is gone,but the labs are still off,yet some kids have normal labs and have active arthritis.Good question for me to ask when we go back.Very confusing.My biggie is about low cortisol levels.So far no one has been able to give any info about my question.Oh well.I will just have to keep searching the net.Glad Riley is doing so well,so quickly,it has not really been all that long.I think you mentioned Dec is the 6 month mark.Hope your insurance was on the ball and Riley can get her new spint/brace.I wish someone had helped back when things where so bad for him.Luckily he is fully functional.Well better go get he gets out of school in 6 minuites,uh oh!

Hugs and Love

Becki and 4systemic

[Guest guest]

Hi Ellie (aka Eli) and Beckie and Tree!

I think maybe Ellie was thinking of me (Val, Rob's Mom) when she mentioned

(Rob's Mom) - because I have whined about my hands & wrists alot lately - though

I think Tree was responding to Elisheva (aka Eli) with her post. (At least, I

don't remember having problems with her wrists.) Hope all is well

with all!

Val (with sore wrists)

Rob's Mom (5,systemic)

In a message dated 9/27/2002 12:42:56 PM Eastern Standard Time, skyley8@...

writes:

> Hi Becki,

> Ohhhhhh, maybe Tree calls Elisheva Eli lol. I was probably mistaken

because I really spell my name Eli, short for Elianna and just changed it to

Ellie so people would pronounce it correctly. Sometimes Georgina sends posts to

me spelled Eli because that is what I went by when I first started posting. I'm

probably the only confused one here lolol.

> By the way, I have been keeping up on 's progress and am so thrilled

to hear that he is doing well on his pred drop. I think taking it slower then

last time is really making the difference. Plus with the Enbrel in his system

now I'm sure that he will do just great. How often is he wearing his brace now?

We are going to do Riley's labs today. I am a little bit nervous because I have

decided not to force Daddy to hold my hand. The last time at children's when I

took her by myself wasn't so bad so I am hoping today goes smoothly. We also

have PT today. She has another infected toe. We have been soaking her foot in

Epsom salt and putting Neosporin on it. She has to wear sandals at school, at

home though she is barefootin Princess Riley Jane! I was stretching and bending

her legs yesterday and those heels were about an inch shy of her tush. Getting

closer! Her next rheumy appointment is on the 2nd. Last time her sed rate was

down to 19, here's hoping it's even lower this time. If insurance has done it's

job properly she will be authorized to have a night brace made and we will be

done with the dynasplint. I hope she doesn't freak out when they saw that cast

off of her leg. Any suggestions on how to make that fun? Anyway, I didn't

realize I was in such a rambling mood, this was probably a post more suitable

for Rustyroom lol, sorry everyone! Hug Tennessee Flash for Princess Riley.

> xoxo, Ellie & Riley 5 poly

>

[Guest guest]

Hiya Yes you are correct I do call Elisheva (Eli and I did reply to her ) I know it caused alot of confusion so I promises to use her whole name from now on thanks all :):)Tree:):) Re: should be to Elisheva (ooops lol reply to Becki long) Hi Ellie (aka Eli) and Beckie and Tree!I think maybe Ellie was thinking of me (Val, Rob's Mom) when she mentioned (Rob's Mom) - because I have whined about my hands & wrists alot lately - though I think Tree was responding to Elisheva (aka Eli) with her post. (At least, I don't remember having problems with her wrists.) Hope all is well with all!Val (with sore wrists)Rob's Mom (5,systemic)In a message dated 9/27/2002 12:42:56 PM Eastern Standard Time, skyley8@... writes:> Hi Becki, > Ohhhhhh, maybe Tree calls Elisheva Eli lol. I was probably mistaken because I really spell my name Eli, short for Elianna and just changed it to Ellie so people would pronounce it correctly. Sometimes Georgina sends posts to me spelled Eli because that is what I went by when I first started posting. I'm probably the only confused one here lolol. > By the way, I have been keeping up on 's progress and am so thrilled to hear that he is doing well on his pred drop. I think taking it slower then last time is really making the difference. Plus with the Enbrel in his system now I'm sure that he will do just great. How often is he wearing his brace now? We are going to do Riley's labs today. I am a little bit nervous because I have decided not to force Daddy to hold my hand. The last time at children's when I took her by myself wasn't so bad so I am hoping today goes smoothly. We also have PT today. She has another infected toe. We have been soaking her foot in Epsom salt and putting Neosporin on it. She has to wear sandals at school, at home though she is barefootin Princess Riley Jane! I was stretching and bending her legs yesterday and those heels were about an inch shy of her tush. Getting closer! Her next rheumy appointment is on the 2nd. Last time her sed rate was down to 19, here's hoping it's even lower this time. If insurance has done it's job properly she will be authorized to have a night brace made and we will be done with the dynasplint. I hope she doesn't freak out when they saw that cast off of her leg. Any suggestions on how to make that fun? Anyway, I didn't realize I was in such a rambling mood, this was probably a post more suitable for Rustyroom lol, sorry everyone! Hug Tennessee Flash for Princess Riley. > xoxo, Ellie & Riley 5 poly >