Camp Oasis 2018

[coolbeans]

hello all--

I haven't been on here in a bit--we are doing good on the Stelara (PTL!) I know several children on the forum have been to Camp Oasis. My child will be going for the first time this year--any tips you experienced campers have?? She is so excited--I am glad she is excited. I just keep thinking she will be 7 hours from home for a week--eek!! I pray she makes some great friends and has a amazing time.

 

[Farmwife]

Hi, I pray your child has am amazing time at camp.
I have a question thro......
Remind me how old your kiddo is and did you have to fight insurance to get Sterala?

 

[coolbeans]

She just turned 14. We were very fortunate that we only had minimal struggles getting the insurance to cover Stelara. I know that is not always the case.

 

[Maya142]

I think pdx's daughter went - hopefully she will chime in soon.

My daughter hasn't been to Camp Oasis, but both my girls got to the Juvenile Arthritis Conference yearly (arthritis is the big issue for both of them). They LOVE it. Always want to go back. They say they love feeling "normal" for a while (the conference is only 3 days long) and meeting other kids (now young adults) with the same issues.

 

[pdx]

Yes, my daughter went twice to Camp Oasis in the first two years after she was diagnosed and it was a great experience for her. It was life-changing for her to meet other kids and counselors with IBD, and she also just had a lot of fun.

The medical staff was outstanding; it was wonderful to know that she was in such good hands while there.

At our camp, they had us fill pill dispensers before coming, and we also had to bring all the original bottles. I didn't bring the bottles from her non-prescription pills the first year, and that was a problem. So be sure to bring the bottles from all meds, including non-prescription. Also, if there are any special events described in your camp info, encourage your daughter to participate. Our Pacific Northwest Camp Oasis hosts a "Dork Dance" where the kids dress up super-nerdy. My daughter didn't bring much for that the first year, and she ended up wishing she had brought more of a costume. The second year she went all out!

Also, I would encourage you to take advantage of the time that your daughter is away! Since my daughter's diagnosis, it has been very hard for my husband and I to take a kid-free vacation. The years that E went to Camp Oasis, we picked a vacation location near to her camp and stayed there a few days after dropping her off (younger daughter stayed with Grandma). It was really nice!

Hope that your daughter has a great experience!

 

[coolbeans]

Thanks so much for all the wonderful info, especially about the meds. The theme this year is something about the holidays & they are encouraged to bring a Halloween costume, st pats day, valentines, 4th of July & one other I can't recall right now. Her daddy wants to go with her to eat--the menu from last year sounds really good. She is very excited & I am so glad she can go. It's been such a cruddy year & we are relishing every moment that she feels good.
We just took a trip in march for our 20 year anniversary so we probably won't do much while she is gone. Maybe practice at being empty nesters since she is growing up too dog gone fast!!!

 

[Maya142]

I'm SO glad she is excited to go!!! Have all surgery plans been put on hold? Did she end up getting a G tube placed?

I'm just asking because I bet she will meet some kids with feeding tubes and ostomies...including counselors. My daughter wanted to be a counselor but something always comes up. Maybe next year!

 

[coolbeans]

yes we have decided to delay surgery till we have no other options. we recently met with a dietician who made a plan with her to eat more "real" food so she doesn't have to have the tube again or drink boost so she is really trying hard to do that.

I hope she make many good lifelong friends at camp--she already knows one girl that is going. She is already planning on going the next few years then seeing about being a counselor.

 

[Maya142]

Oh that is wonderful!! I'm so glad she is doing better. It sounds like she is doing much better and that the Stelara worked for her !!!

She will probably meet kids with G tubes and ostomies and that will be good for her, if she does ever need a G tube put in or to have surgery down the line, at least she won't feel all alone.

 

[bethhall3434]

Thanks for starting this thread. My daughters are 9 and I thought of sending them this year but opted out. I think we’ll send them next year. I always think, at least they have each other, but it would be so good for them to meet other kids who struggle with this disease.