Camp Victory

This week I had an amazing week! I went to camp victory (camp JRA)!it was super fun. I got to go zip lining and rock climbing... but I couldn't finish the rock wall because it hurt my ankles too much. there was also a relaxing pool that I went in. In the cabins there was air conditioning and a bathroom. This was very surprising to me because when I go camping with my family there is never air conditioning or a bathroom inside of the cabin. In the bathroom there was a shower, a toilet and two sinks. I also learned how to make warrier bracelets. They look very hard to make but they are very easy. I really hope I can go there next year. After camp I went to the drive ins. I saw the new planes movie. It was pretty good. But after that movie there was another movie which was earth to echo. I didn't watch that movie because I left early because I was in a lot of pain from camp. Also this morning when I woke up I started crying because my ankle hurt really bad. And now it is feel a little better because my mom put my new cream on it. I hope I feel a lot better tomorrow!!!!!

A great start to the summer!

It's been over a month since we have posted because our summer has been filled with many fun events!!! She finished out her 5th grade year with straight A's and earned the Presidential Award for having such a great 4th & 5th grade year! She worked hard and achieved the goal she set out for, we were so proud. She missed 29 full days of school this year and left early twice a week for physical therapy, it goes to show you that if you stay strong and fight hard, you can do just about anything you put your mind to! First, we want to thank everyone who came to Bella's walk and those who donated to help her raise over $3,000!! It was an amazing day and Bella did awesome when she did her honoree speech in front of everyone! So proud of her!! The video her friend Emilia and I made for her was a perfect surprise for her, she loved it!! Check it out on her Youtube page if you haven't seen it yet! Right after school left out she was invited to Hersheypark with a friend from school and she had a blast. She even road the Great Bear for the first time ever!!! We went to visit Judy & PaPa at the beach and got to spend time on the boat and at the beach. It is Bella's favorite place to visit! Then Bella got to stay with our other family in Delaware while Mom & Dad went on vacation. She absolutely fell in love with her cousin SJ and talks about him all the time. She is already asking to go back for another week to stay with our family! We just got back from our annual family trip to OCMD, we stay at Frontier Town. This is the kids most favorite trip every year and it definitely was just as fun as the last time we went! We try to get Bella to the pool a couple times a week to help keep her joints extra mobile and a few other friends also go to the same pool too! We are now preparing to send Bella off to her first sleepover camp, this one is for children with arthritis. The doctors all think it will be a great fit for Bella, so we are going to give it a try. I will miss her so much, but the benefits of being around other children just like her will help her so much. On the medical side, Bella has been doing okay. She has been complaining of jaw pain and her dentist did xrays for us to track any changes in her jaw joint. We will continue to watch the progression of that and see if we need to take further steps. But the dentist said the medications she is on will likely help stop major joint damage. She still struggles with nauseous and mouth sores from the chemotherapy, but the doctor says it is normal. She told us she had one more pain free day (which makes 2 since last August), it may not seem like much, but in our world, it is a VICTORY. Were hoping as all the new combination of medicines start to kick in and work together we will see more pain free days (cross all your fingers and toes). She is still in physical therapy 2 days a week when we are not on vacation. This week we have 3 appointments but the one thing I learned is that these appointments are crutial to the success of Bella's treatment plan. They may seem exhausting but I try to remember that without all these appointments her juvenile arthritis could end up much worse. The constant involvement of the doctors helps us constantly track her medicine, pain levels, inflammation, side effects, and overall health. The whole idea is to slow down the progression of her disease and keep her from loosing mobility in her joints (it's happened 3 times already and it was scary). I do have to say that the relaxed summer schedule and slow starting mornings have really helped Bella deal with her JA much better. Arthritis affects children (adults too) the most in the morning because they stiff and it is hard to get moving. We take one day at a time and try to remain positive for Bella. For the first time ever she asked why she had to get arthritis because it is so unfair. That was by far some of the most heart breaking words I have heard from my daughter because I could not answer that question and I couldn't take her pain away. I am hoping the arthritis camp will help her deal with some of these feelings and show her that it will all be okay! Hope you are all having a wonderful summer!! Thanks for checking in on us!! I'll have Bella post after her camp so she can share all the details!