JA Family Day

A couple of Saturdays ago, we went to the first Arthritis Foundation Juvenile Arthritis Family Day at The Museum of Discovery.  We had never been to the museum before and they had just recently redone it, so the kids were really looking forward to going.  Walking in and seeing some of the exhibits, I could tell they were going to have a blast. 

Kris and I really didn't get to see much because we were in with all the other parents and AF staff having a meeting.  They had volunteers who took the kids around and watched them so that we could focus on meeting other parents from all around Arkansas as well as hear from one of the pediatric rheumatologists from Arkansas Children's Hospital, Dr. Dare.  We are so fortunate to live in LR and have ready access to 2 great pediatric rheumatologists.  Dr. Morris is Hannah's doctor, but we know Dr. Dare because he is a friend of some of our friends from church and actually is a member of the church himself.  We also got to hear about Camp AcheAway, which is a week long camp for children from 6 to 16 who have juvenile arthritis.  The really cool thing is that it is in our city at Camp Aldersgate.  It looks like it would be so much fun, but we are not quite ready to let go of Hannah over night for a whole week.  I think in a few more years, it would be a really neat thing for her to do and hopefully one of her little friends, Maylee, will go with her.


Kris stood up and talked about our trip last year to the Advocacy Summit in D.C.  

There weren't a lot of people there, but it really was a good turnout.  There were people from Jonesboro, Cabot, Benton, Hot Springs and a few more places. I think they plan on making this a yearly event.  Hopefully it will be bigger next year.

We got to listen to a panel question and answer session with Dr. Dare, and a couple of parents that we know from LR, as well as the Director of the AF.  It was really good and very informative.

It was good to meet other parents of kids with arthritis but honestly, it was also hard.  I talked to one dad about his 12 year old daughter who was diagnosed around the same age as Hannah - 2.  After a few years of treatment, she went into remission.  However, last summer her arthritis came back with a vengeance he said.  She is having a lot of pain and taking several more meds.  She is active, but her mom says she pays for it afterwards.  It just broke my heart and I just about lost it standing there.  I couldn't help but think about Hannah.  I have really tried to push the thought of arthritis out of my mind as much as possible.  She is symptom free, on no meds, and you would never know anything had ever been wrong.  We have been so blessed.  It scared me to death, though, hearing this dad talk.  He talked about the meds and how it was so concerning what the long term effects of them could be.  He mentioned sterility.  It just heart me so bad.  I know I can't live in fear of the arthritis coming back, but that thought is ever at the back of my mind.  All I know to do is pray.  Pray that this disease will stay away from Hannah and never come back.