Big News....Jingle All The Way...

Whenever the Arthritis Foundation has a big event, they always choose a child with JIA to be an honoree-sort of the face of Arthritis and 'voice for hope' to show that life can be normal. Back in June, we were able to meet James Light who was the honoree for the Arthritis Walk. He was super sweet and very inspiring. You can read it here. Siobhan even sees the same Doctor!

Well, we were given the opportunity for Siobhan to be the honoree at this years Jingle Bell Run/Walk so we jumped on it and we just got word last week that it's official! How exciting is that!!!! We're so happy and excited to be able to share her/our story with everyone who is struggling with arthritis and to bring awareness to the fact that there is a huge need for more research, but ultimately, what we need, is a cure!

For this event, our family will be able to help in some of the planning of the event, work with local media, share our story with the community and Siobhan will be able to start the race. We also started a team just like we did for the walk back in June.

Now, I really don't like to solicit people for money or ask a lot from people, but this is obviously something that is really close to our family so I am going to put it out there. So here's where you come in....

1)We need team members to fun with us! There is a $25 reg fee which goes toward our fundraising goal of $1500.

2)If you don't live close, you can still donate to our team. A lot of very generous people donated to us for the last walk and I definitely don't expect that again. But the option is there. If you've never donated before, just know that any amount helps.

3)Come and cheer us on! There is going to be a lot of fun stuff going on at the Jingle Bell Run/Walk so come and get into the holiday spirit and cheer on 'Siobhan's Secret Weapons'. Through this whole arthritis journey, the moral support has meant just as much to us! Surrounding ourselves with people who want the best for Siobhan has been awesome!

If you're interested in helping us one way or the other, here are the event details:

When: Sat December 3
8.30-10am : Registration
9.15am : Holiday Costume Contest!
9.40am : Kids 1k Run with Elves
10am : Timed 5k Runners Begin
10.10am : Untimed Joggers/Walkers Begin
5k Results + Awards Ceremony to follow.

Where: Trolley Square-Southwest Plaza

How: You can run or walk, timed or un-timed

So if you want to join our team head on over here and find our team. This go around, we've called our team 'Siobhan's Secret Weapons'.

I Knew It Would Happen...

We just got back from Portland and the big family reunion. We had a great time and the kids were able to enjoy lots of quality time with their cousins. It's been a awhile since they've seen the cousins and nobody had really met Ethan in person. But with all the playtime of course came a lot of running and skipping and jumping. Of course that is awesome for all kids, but when the kid has arthritis, it can pose from trouble.

Siobhan literally seemed to be running, jumping climbing trees all day every day! By Tuesday, she was sore. I was expecting her knee to bother her, but it was her right ankle that was giving her trouble all week. Not only was she limping, she would barely put any weight on her foot at all at some points. But she kept going (and going and going and going and going) and did her best to keep up. She actually did a pretty good job of it.

It just makes me sad that we have to watch out for it all the time. When we were at the beach, I found myself thinking, 'Is the water so cold that it's going to make her ankle stiffen' or 'When she's running/limping around, is she going to come down wrong and hurt herself more'. It's to constantly be thinking about it all the time but then not wanting to let her know that you're worried.

While we were preparing for the trip, I was so worried that something was going to flare up. Turns out, I was right. It happened. But it's all good, cause now we have the under our belts. We've done the traveling thing with arthritis. We got through it and we have some tools in our arsenal for the next time. The unpredictability of it all is the hard part. Not knowing what is going to set her (it) off keeps you on your toes.

Siobhan at the Beach-July 2011

Fun Fact Friday...

When we started this blog, the main reason was to have broad outlet where family and friends can come and find out how Siobhan is going. But in the short time since Siobhan was diagnosed, the thing that I keep hearing is, 'I didn't know kids can get arthritis!' In truth, I knew that it was possible, but I had no idea how frequent it happens, who it can happen to or how bad it effects children who are diagnosed with it. So my knowledge was significantly inadequate.

That all being said, I thought that it might be interesting to post some facts about Juvenile Arhtritis. There's a lot about this disease that I've been finding out along the way and a lot more for me to learn. but I think that it would be a good thing for other people to learn too. So welcome to the very first

Fun Fact Friday!

If you're reading this blog, you already know that, in fact, kids get arthritis too! But what you may not know is that it's actually the most common childhood disease with around 300,000 children diagnosed.* According to our doctor, it's more common than the other childhood diseases that we hear about a lot including Juvenile Diabetes (although there's not a huge statistical difference between the two).

Given the fact that it's so common, I find it very interesting that so many people don't know that it's possible. It seems like the only people that know what I'm talking about are people who know someone who has it, people who just have a vast knowledge of medical stuff, or people who watch 'House'. But if you didn't know before, you know now!

*Information found here.

Someone you may know who has Juvenile Arhtritis. Isn't she cute!?!

Siobhan getting ready to head for Hawaiian Day at school!

Steroids and Secret Weapons...Hooray!...

We went to the rheumatologist today. It was a very long appointment but it was very informative. Our doctor, Dr. I, is awesome! She's a lovely woman with a wonderful bedside manner. She's also very up front and I like that a lot.

After a thorough evaluation of Siobhan's joints, she confirmed and diagnosis and let us know where we need to go from here. Siobhan has Oligoarthritis but is on the borderline of having Ployarthritis-the only thing that separates the two is the number of joints involved and the cut-off is pretty arbitrary.

Anyway, our treatment plan is going to be very involved for the first little while until we figure out what works best for Siobhan. She's going to keep taking her Naprosyn like we've been doing twice a day. To that, we're adding Prednisone but that is going to be tapered off over the course of about six weeks. And finally, Siobhan is going to start getting weekly injections of methotrexate which is an old school, tried and true arthritis medication. So tomorrow, Siobhan I get to go back to Primary Children's Hospital for a crash course of how to give her shots. This is all aggressive of course and there's a reason for that. Some 'markers' in her blood are elevated which indicates that the arthritis is technically all through her body. We're attacking her current symptoms now so that we can stop the JIA from going to other joints.

During the appointment, we got a lot of answers to the many questions that we've had. We don't need to put Siobhan on a special diet, but we may still load up our pantry and fridge with super healthy stuff, because it can't hurt, right? We don't need to limit her activity, just let her take the lead. Also, the sleeping thing, which I'm not sure I've blogged about, the doctor thinks is more anxiety than anything else. So we're trying to come up with some ways to combat that. Also, the ANA test that I talked about yesterday, totally Negative which is awesome!!!! That means that her risk of getting Uveitis go waaaaaayyyyy down! Hooray! So those beautiful eyes are going to stay that way!

After the doctor, we put a movie on in the car and one of the previews talked about a 'secret weapon'. Siobhan was asking what a weapon is so we gave a few examples and one of them was when you're sick, medicine is your secret weapon to make you better. She then said, 'So maybe my medicine for my knees is my secret weapon to make my knees feel better!' We then decided that since Siobhan is going to have a lot of different meds and supplements, we would a get box to put it all in and we would decorate it and write 'Siobhan's Secret Weapons' on it! We're going to use these weapons to make her feel better!