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Hi Crystal,

That really is good news! I hope Celeste has a great time! Based on

my friends who had JA, I think being with other kids with the

arthritis will be really good for her! Kinda like they belong to the

same club. ;)

And I'm SOOO glad the mouth sores seem to be under control for her

too! That really is good news too!

Thanks for letting us know!

-Meghan

> Just wanted to share some good news with everyone, Celeste got in

to JRA camp

> for this summer. She is so excited about meeting some kids with

arthritis. I

> am a little worried, she is 10 but she is still my baby and it is a

sleep

> away camp. I guess I will have to be as grown up as her lol. I am

hoping

> there will be some other children there with PA. Thanks again to

all with

> advice about the mouth ulcers, they cleared right up with the extra

folic

> acid and b complex. Hope you are all having a wonderful day. Crystal

>

>

>

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  • 4 years later...
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Hi My name is and my daughter has poly jra and

the way we handle it with school. Is every year we met

with her new teachers and let them know whats going

on. We hand out pamphlets that our distribute by the

arthritis foundation. When every gets a chance

to write a paper, especially at the beginning of the

year, she tell everyone all about her and jra. That

usually gets everyone asking questions. Its amazing

how many have no clue about kids and this. Then in

March when its national arthritis week hands out

pamphlets to her friends and then we usually start

fund raising for the upcoming walk in May of that

year. I too try to let people know, especially the

ones who think there is nothing wrong. For example we

were at walmart and something did not have a price on

it. I ask Jen to go back and get one with a price. She

stated no she was really tired. Mine you we have been

shopping about 2 hours. Well the lady behind the

register got smart and that's when I told her just

because she looks OK does not mean she is. I explain

what Jen had. She was very sorry, I told her not to be

but to remember their is a story behind everyone.

I hope that helps

Always And age 12

--- rebpick1artist <rebpick1artist@...> wrote:

> Elaney and i went to church camp last week and had

> an interesting

> experience. I was the art director. During one of

> the art sessons

> Elaney sat next to a little girl(age 9-12) and I

> overheard Elaney

> telling the girl about her arthritis. Later that

> evening another

> counselor came to me and told me that the girl had

> asked if she could

> CATCH arthritis from someone she sat next to. Her

> parents are

> missionaries in China and she was afraid she could

> not go back w/ them

> if she caught anything! I am really glad the girl

> asked that question

> so she would not be worried sick. The counselor told

> her it was not

> contagious. However, it reminds me just how much

> other kids need to be

> educated about JRA. I do not want kids to be afraid

> to play w/ my

> daughter!!!!! I am not really sure how to go about

> this...one time I

> mentioned educating others to a school secretary and

> she was a bit

> rude. She said " well you don't want to make a public

> announcement now

> do you! " I tend to get frustrated w/ all this. It is

> hard enough to

> handle all the meds and dr appts but then I have to

> educate everyone

> else just so my baby won't be treated badly! I know

> it is my job and I

> WILL do it, I just get a little tired sometimes. If

> you have any

> creative ideas about teaching others about JRA w/out

> putting Elaney on

> the spot, please let me know!!!--- &

> Elaney(12 poly)

>

>

>

>

__________________________________________________

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  • 11 months later...
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Hi a,

le here again. I am actually a member of the Fellowship Committee (the planning committee for Camp JRA). I've been attending as a counselor since 1997!! Its a great place, and I guarantee Jordan will LOVE it!!! It's my favorite place on earth!! Please let me know if you have any questions - I would be happy to answer them!

le M. s

Director of Programs and Services Central PA Chapter - Arthritis Foundation

From: "paula" <sapphire61768@...>Reply- To: Subject: CampDate: Wed, 11 Jul 2007 18:15:46 -0000

Hi Everyone,Been a while since I have posted been a very busy summer so far,hope everyone is well.Jordan will be attending Camp JRA in PA. next week and we were wondering if anyone else on here will be attending or has attended there before.The Arthritis foundation here is paying for Jordan to go and she is so excited to be able to meet other children with JRA and other rheumatic diseases.I will be stressing because this will be her first time away from me for an extended period of time, plus it is 3 hours away,but I will try to survive.A quick update about her, we are still using the Kineret, been 9 months now and she is a trooper, she wants to start doing the injection herself,not bad for a 9 year old.We stopped using the auto injector and I insert it myself,took me a while because I hate needles.She says it stings less now and it doesnt leave a bruise.We missed a dose on 2 seperate occasions and the following day she had her rash and fever and fatigue back,but within an hour of her kineret she was back to normal.The doctors say we may be in for the long haul with the Kineret as long as Jordan is ok with it.That is fine with me if we can keep the arthritis away.Hope you all are enjoying your summer.a and Jordan (9,SOJRA and MAS)

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Abbie went there for 2 summers. She enjoyed it, but said that there was too much education and not enough fun. Previously she had gone to jra camp in Nebraska, and it was more fun for her. That said, the staff is wonderful. The staff from Hershey are there as well as (I believe) some from CHOP.

Christy (Abbie, 18 systemic, spondy, osteoporosis)

Camp

Hi Everyone,Been a while since I have posted been a very busy summer so far,hope everyone is well.Jordan will be attending Camp JRA in PA. next week and we were wondering if anyone else on here will be attending or has attended there before.The Arthritis foundation here is paying for Jordan to go and she is so excited to be able to meet other children with JRA and other rheumatic diseases.I will be stressing because this will be her first time away from me for an extended period of time, plus it is 3 hours away,but I will try to survive.A quick update about her, we are still using the Kineret, been 9 months now and she is a trooper, she wants to start doing the injection herself,not bad for a 9 year old.We stopped using the auto injector and I insert it myself,took me a while because I hate needles.She says it stings less now and it doesnt leave a bruise.We missed a dose on 2 seperate occasions and the following day she had her rash and fever and fatigue back,but within an hour of her kineret she was back to normal.The doctors say we may be in for the long haul with the Kineret as long as Jordan is ok with it.That is fine with me if we can keep the arthritis away.Hope you all are enjoying your summer.a and Jordan (9,SOJRA and MAS)

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  • 1 year later...
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From: lori jennings <lozzy3us@...>Subject: ( ) (unknown) Date: Sunday, July 5, 2009, 8:46 PM

I was wondering if anyone has heard of a camp called Camp Corageous located in Monticello,Ia. It is located near Des Moines, Ia? I have had a friend recommend this camp to me and I looked it up online and it looks very promising. I do not think there are any openings for this year but I am going to call tomorrow. Please let me know if anyone has heard of this particular camp. I am located in Mo very near the Ia border and there is not much offered for my child.

Lori

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Generally speaking, at least from my experience (born and raised neaer there), Camp Couragerous is for more severe kids then most aspies, as in kids with mental retardation when they have deveopmental disabilities, and deaf, blind, and severely physically disabled guys would certainly not be a good fit.

Camp Tanager closer to Cedar Rapids, Iowa would be a lot better, its for all types of kids (as in NTs too) but a lot of the workers there also work in Tanager Place group home, with kids with disabilities. http://www.camptanager.org/ 6 to 1 counselor ratio is a bit less then a parent in your shoes would probably like, but I have a feeling your kid would fit in there a lot better, I would suggest giving them a phone call to see what they suggest.

From: lozzy3us@...Date: Sun, 5 Jul 2009 18:47:34 -0700Subject: ( ) camp

From: lori jennings <lozzy3us >Subject: ( ) (unknown) Date: Sunday, July 5, 2009, 8:46 PM

I was wondering if anyone has heard of a camp called Camp Corageous located in Monticello,Ia. It is located near Des Moines, Ia? I have had a friend recommend this camp to me and I looked it up online and it looks very promising. I do not think there are any openings for this year but I am going to call tomorrow. Please let me know if anyone has heard of this particular camp. I am located in Mo very near the Ia border and there is not much offered for my child.

Lori

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