We're going to DC!!!!

Our family was selected to receive a scholarship from the Arthritis Foundation to attend the Juvenile Arthritis Conference in Washington, DC!  We will be going July 6-11 to allow for some time to tour the area.

While there, we will get to meet other families who are also dealing with JIA.   Cameron will get to meet other children like him and will have a chance to do all kinds of activities.  While he is having fun, Will and I will get to attend networking seminars on topics such as pain management, research updates, physical therapy, "Getting Past Gridlock: Navigating School Issues" and many more topics.

On Thursday night, we will be entertained at dinner by the United States Marine Corp Silent Drill Team, get to meet and have photos taken with a NASCAR driver who has JIA (name has not been given yet), listen to legendary piano player Byron Janis who has suffered from Psoriatic Arthritis (the same type Cameron has) for 38 years, plus games, activities and lots more.

On Thursday, we have scheduled a tour of the Capitol through the office of Ben Chandler.  We are hoping he will be in his office during this visit!  We are also hoping to catch some of the other sites such as Arlington Cemetery, Vietnam Memorial, Lincoln Memorial, FDR Memorial (to see the statue of Fala, the Scottish Terrier), etc.

I plan to post some on the blog while we are there and also the Arthritis Foundation asked if I would blog for them to post on their website so other families can read what our experience was like and hopefully be able to attend next year!  (Rumor has it... it will be in Indianapolis, IN next year!!)

An update on Cameron's arthritis.  He saw the Rheumy this month and she found NO ACTIVE ARTHRITIS!!!  His blood work was also great!  She mentioned that if he continues to stay this way until his next appointment in September, she may consider starting to taper him off his medications!

Cameron's birthday just passed, my baby is now 10 years old!  We spent the weekend in Canada.  Will had a show he wanted to play in so we did that on Saturday and then spent 2 nights at Niagara Falls.  Cameron had a wonderful birthday!  We rode the Maid of the Mist boat, Journeyed behind the Falls and felt the Niagara Fury in a 4D attraction they have added since we were there last.

Cameron is standing at the top of the cliff over the Whirlpool area where the Niagara river comes down and makes almost a 90 degree turn, creating a huge whirlpool area.  This is an area that has seen many tightrope walkers attempt to cross... some were successful, some were not!

This was in the tunnel at the Journey Behind the Falls attraction.

 

This was on the Maid of the Mist boat.  Can you tell how excited Cameron was?

This is while waiting for the Niagara Fury 4D attraction to start.  Cameron would sit every chance he got to rest his feet and legs.  He complained of some pain, but we made it through!

 He got birthday cake at Swiss Chalet! 

The following day (MY Birthday!) we did the River Walk.  This takes you 23 stories down in an elevator and there is a nice walkway beside the river.  This river is VERY powerful!  HUGE boulders in the river making lots of rapids!  Will said it would be a class 5, if not class 6.  The view and the sound were AMAZING!!

My best birthday present ever!!!!!!!!!!!

WOW!

Where has the time gone!?  It has been a very long time since I posted on here!

Cameron started school as you know from the last post.  Things went well for awhile and then started going downhill.  As of today, he has missed 22 days of school this year.  He missed 7 days straight for the flu and has missed other days due to illness and Dr appointments.  A weakened immune system is NOT fun!

In October, we attended an AMAZING camp!  It is called the Center for Courageous Kids and is located near Bowling Green, KY.  It is a world class medical camping facility that provides a cost-free, safe and fun camping experience for seriously ill and disabled children and their families.  http://www.thecenterforcourageouskids.org/

The weekend was split between children with Juvenile Arthritis and Osteogenesis Imperfecta (brittle bone).  We had a counselor assigned just to our family.  His name was Sam and he spent a great deal of time with our family.  He showed us around and took great interest in getting to know Cameron.  Cameron felt like he had a best friend all weekend!  Here is a couple pictures of Cameron and Sam:

As you can tell, there is a bowling alley at the camp!  Cameron kept talking smack to Sam telling him he wanted to beat him at bowling.  Finally he got his chance, and yes, he beat him!  The other picture was taken at the lake.  Cameron and Sam took one of the Swan paddle boats out on the lake.  The pictures below are Cameron on the horse (of course).  After meals, they got up and moved around and danced and had a great time.  Cameron and Sam in the pool. Then there is a shot of our room.  We had our own bathroom.  The beds are bunked because this is normally a room used by counselors in the summer.  The door you see on the right by the chest is a connecting door to the room where the kids stay.  Those beds are not bunked and the kids also have their own bathrooms. The last one is a hayride!!

Here is a picture of the group of JA kids and families.  The children sitting on the front of the stage all have arthritis.  Their siblings are in the middle and parents are in the back.

Since this post is getting long, I'll stop for now and update more later.  Thanks for reading!!