Heading to Washington DC

Last Saturday Morning (April 14th, 1 am) Siobhan and I headed out to the big city! Washington DC that is! :) Siobhan and I-well mostly Siobhan-were chosen to represent Utah at the Arthritis Advocacy Summit. While there, were tasked with talking with Congressmen and Senators about various legislation that is relevant to Arthritis Patients. I'll get more into that later. But for now here is the first part of the trip!

This is Siobhan and I on the airplane leaving SLC. Our flight left at 1 am and headed for Atlanta for out lay over. Siobhan decided that she was going to be brave and not be scared when the plane took off. Also, the tooth fairy payed us a visit while we were on the plane! Siobhan lost a tooth on Friday afternoon so the tooth fairy had to come while we were flying! It was great incentive to get Siobhan to sleep. Right before we took off, I was so tired, so I told Siobhan, 'I don't care what you do as long as you're quiet and stay in you seat, but I'm going to sleep. Before I knew it, she was sleep on my shoulder!

After our layover in Atlanta, which was not very long, we hopped on the plane for the final leg of the journey. She was so excited to have a window seat! And boy was this girl tired! After sleeping for two hours before we took off for the first flight, sleeping through the entire first flight, I wasn't sure she was going to sleep on this flight. But boy, that girl was sleep with her head in my lap before we even took off!



Once we got into Reagan, we were HUNGRY! Good thing there was a McDonalds right at our gate! so we stopped for a quick breakfast before we got our baggage. You can tell from the picture that Siobhan was very excited! I hear that Uncle Joe gets a similar look on his face when he gets his McDonalds breakfast! LOL!

We were worried that since we got in so early, like 9 am, there would be no rooms ready at our hotel. So we planned that we would check the suitcase with the bell hop and go do some sight seeing. But we were lucky because our room was ready to go as soon as we got there! So we got all checked in and changed clothes and headed out get me a swimsuit. I found the nearest Target but we walked for an hour before we found it. My navigation skills are completely lost outside of Utah.

We finally made our way to a mall in Pentagon City and found me a swimsuit. We made our way back to Arlington for some fun in the pool. After an afternoon of swimming, we decided to head down town to DC for some dinner. We hopped on the metro train and headed to the Hard Rock Cafe. After some walking around, attempting to navigate the city, a small brush with the white house and making our way through the crowd at the Cherry Festival, we finally found the HRC! And there was a 45 minute wait. So we put our name in and went to go buy some souvenirs. Got into dinner where Siobhan promptly fell asleep! Who falls asleep at the Hard Rock! Such a cutie!!! On the train ride home, we both fell asleep. Thank goodness we (I) woke up before our stop! The great part was that our stop was right under our hotel! How cool is that? The subway system in DC is awesome! Needless to say, we were exhausted when we got into bed! The next day we planned our sight seeing adventures....

 To Be Continued!

The Good Times Keep On Coming....

It's been a long time since I've posted here, but I'm going to re-double my efforts on the all of the blogs that I author or contribute to. I make myself sound so important, but really, I'm not. Anyway, we've had some fun things happen for us and our family, most especially Siobhan, in the arthritis world and I wanted to share them. So here it goes....

1. The Jingle Bell Run/Walk was awesome! We were the top fundraising team and I think that we ended up with right around $1000. We had a great time at the event. I will do an entire post about it soon including pics and video.

2. Siobhan and I were chosen to go to Washington DC to represent our congressional district at the 2012 Congressional Arthritis Summit! We are so so so excited! But we haven't told her yet, we have something fun planned to tell her the news. While we are there, we will get to meet with our congressman and possibly our senator where Siobhan will tell them her story about suffering from arthritis. We hope that while we are there, the lawmakers in our country will take notice of the effects of arthritis on so many people in America, especially the 300,000 children who have it. We will attend trainings and seminars and learn about all the ways that we help bring a little bit of change. (ew, I sound a little like a politician) We're going to be doing some sight seeing as well, so that's going to be awesome! And the trip is paid for by the congressman's office so that's pretty cool! The summit is April 16-18.

3. Every spring the Arthritis Foundation holds a black tie gala to honor people in the community who have made big contributions to the cause of arthritis treatment and prevention. These people may suffer from arthritis or not, they may serve on boards, write fat checks or just do an exceptional amount of work with the foundation. Well, at this gala, every year, they pick a child with JA to decorate a plate and then present that plate to the honoree. Well, this year, they are honoring two people and Siobhan was one of the children chosen to make a plate! So lat Friday, we went to Color Me Mine and Siobhan made an awesome platter for one the honorees. It was great fun. Siobhan and I will attend the gala in April. So exciting! I can't wait for her to have the experience and to get her an awesome fancy dress!!! And it's all happening right before the summit!!!

4. Siobhan is officially on the planning committee for the upcoming Arthritis Walk in May. We're having fun going to all the meetings and sharing ideas for how we can make the event an even bigger success!

5. I was asked to help create a pilot program through the Utah branch of the Arthritis Foundation. The program is a parent/peer/family support group for families with kids who suffer from JA. Right now we're in the planning and initiating stages getting ready for a
'launch' at the walk on May 5th. I'm in charge of setting up a blog, we're going to have a facebook page, organize activities, craft nights, Q&As, all kinds of fun things. One of the hardest parts for me as a parent when Siobhan was diagnosed was not knowing anyone who really knew what we were going through. So this is our way of filling that need. I'm working with a staff member at the foundation along with another parent and her teenage daughter. So far, it's coming together really nicely!

In other news, there has been a significant set back in the arthritis community in the last few months. Oddly enough, this actually coincides with a setback in the cancer community as well. You may have heard about it in regards to various forms of cancer, but it effects the arthritis community as well. One of the most widely used medications for those with Arthritis is a drug called methotrexate. Siobhan is on this med and gets it via a shot once a week. We credit this drug with helping her go into remission and keep her that way. This drug is also used (in much higher doses) as a life saving treatment for children with Leukemia. Well, there is now a nation wide shortage of this drug and it's causing a lot of worry. While I understand that with Siobhan, not having a the drug will not cause her lose her life. But it could mean her having so much pain that things like walking, running, even sleeping could become extremely difficult, maybe even impossible. There are other drugs out there for her (even other forms of this med) but the results are no where near as good and the side effects, in some cases, are much worse. But that is where we are blessed, even though the alternatives are not as good, at least we have them. Unfortunately, it seems that Cancer community really does not have any alternatives. For more info on how this shortage pertains to arthritis patients read this. I hope and pray that the shortage can be overcome quickly to minimize the suffering of so many people who rely on this medication. I hope you'll do the same!