Jingling and Doctors...

First things first, so many people donated to our team and supported Siobhan for the Arthritis run and we could not be more grateful! It was amazing and gratifying to have so many people show Siobhan so much love! You all rock! Now, I've had a few people ask me if they can still donate and the answer is yes! The fundraising page is going to be open until Dec 31 so you can make your end of the year donations. Here is a link to Siobhan's page where you can go and donate if you want to.

Now, on to other important stuff. We have an appointment on Thursday (tomorrow, today, all depends on when you read this) with Dr. I and I can't help but be a little nervous. Since Siobhan's diagnosis, we haven't gone more than 6 weeks between visits and this go around it's been 3 months.

A lot can happen in that amount of time and a lot has happened. It's winter which means the barometer is low (or is it high-either way, up or down, it can be trouble for arthritis), Siobhan started basketball and she's been sick a few times. I'll be interested to see how that all effects the JIA. But I'm going to be optimistic and pray that she's still in remission. That would be a great Christmas present!

I hope all is well in your life!

So Long, and Here Comes The Winter...

This is going to be a quick post, but I wanted to say a few things...

Number #1

Have you headed over to join our team for the Jingle Bell Run/Walk? Registration has gone up to $30 but you do still have time!!!!! Also, you can always make a general team donation. There's a kids 1K and the price is always $10 with Elves along with an Elf Village where kids can do crafts. And, of course, you can donate any amount you like until the day of. This is a great way to kick off the holiday season and we want everyone to share this with us!

#2
So winters here. Anyone who knows anything about arthritis knows that that can be a tricky business when you are prone to stiff joints. We've had a few days of Siobhan has woken up with stiff/painful knees. It doesn't seem to be keeping her down too bad but I worry that as the weather gets colder, it will get worse. :(

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'.

School Started.....

3 Days into the new school year and all day kindergarten and this little cutie pants....

Is doing awesome! No issues with stiffness or soreness and so far, she can do everything on the playground! Counting our blessings!

Success...

I was going to title this post 'big success' or 'huge success' but I want to keep things in perspective. Anyway, this afternoon Siobhan was so excited and came into the kitchen and knelt on the floor. Kneeling has been hard the last few months so this was very exciting! She could kneel down on the floor but couldn't sit back on her heels. Kneeling for family prayer was always a fight because of it. Criss cross applesauce was also problematic.

So when Siobhan came into the kitchen and knelt down on the floor, the first thing I noticed was that she wasn't just kneeling, she was sitting back on her heels!!!!!! Yippee!!!!!!!!!!! I asked her to sit criss cross applesauce and again, not problem! I had her lay down on her back and bent her left knee toward her chest and boom! No issues! This is so exciting!!!!!!! And that's without any of her meloxicam (daily anti-inflammatory) today as well. I'm so happy but best of all, Siobhan is so happy.

I can't imagine what it must be like for her to not have any pain. It must be such a big difference and I'm so happy for her!

I want to be realistic as a lot of kids have their symptoms come back within a few months of the steroid injections. So I'm determined to remain cautiously optimistic. I'm just looking forward to (hopefully) more than just a few months of no pain.

My Brain Hurts...

I love going to the doctor. I say that in jest, but a lot of times it's not so bad and I end up getting answers to very valuable questions. Like today when we went to see Dr. I and I asked her what the steroids were actually doing when Siobhan was taking them (she's been off of them since the 9th). By the way, how's that for awesome mothering? I agreed to put my daughter on a big medication without knowing what it was actually for. Fail! Anyway, it turns out the roids are used as a high powered anti-inflammatory. Since the inflammation is through her whole body, you need something intense to quell it and get the inflammation to a baseline and then control it from there with other medications. Make sense?

Well, we found out today that the prednisone didn't do all it was supposed to do. In general, Dr. I was pleased to hear that up until we went to Portland, there had been improvement. But she was disappointed to hear that her ankle got so aggravated while out of town and that it hasn't improved much since we've been home. She was also displeased with the lack of improvement in her left knee-the one that started it all. So we're getting more aggressive...more steroids!

You may remember that we was taking oral prednisone along with her twice daily anti-inflammatory and then getting an injection once a week all the while getting a bunch of supplements. But the oral prednisone didn't do the trick. So we're going to take Siobhan in sometime in the next two weeks (TBD) to have injections of a steroid straight into two of her joints-her left knee and the right ankle. Huge bummer. We talked about it at our first visit and didn't want to have to go that route, but it seems like the only option at this point. We have to get her body to a point where things are under control and we can prevent any further joint deterioration. So while the steroids won't make it go away, it will really calm things down.

But then there's more questions....(1) How is it done? (2) What is the difference between this and her weekly injections? (3) What are the side effects? (4) How often will she need them? Here are the answers as best as I know them. (1) We'll take her to Primary Children's Hospital and they will put her under general anesthetic. Dr. I will then inject her right ankle and left knee. The bummer part of it is the anesthetic part. Yuck! Hoping for easy transitions on that front. But they'll so all her blood work at that time, which makes her next blood draw much easier on everyone involved! (2) Aside from the obvious that it's a different medication, this one will go directly into the anatomy of the joint. Her methotrexate shots only go into the top layer of fat in her arm. (3) The side effect of this steroid are considerably less than the prednisone and usually don't last longer than the first 24 hours. There's always the added risk of 'infection at the injection site ' (I feel like I'm giving a drug commercial) and there is the possibility of skin thinning, but both are rare and easy to deal with. (4) At this point, there's no way to know how often she's going to need the joint injections. It's a case by case situation. Some kids get one and never need one again, others have to get them every six months. We'll know more at her follow up appointment about 4 weeks after the shots.

Some upsides from the appointment....Dr. I gave us the go-ahead for Siobhan to participate in any activity she chooses. She kind of told us that the first time around, but she was very emphatic about it. Also swimming. Also, we are switching her twice daily anti-inflammatory liquid suspension medicine to a once daily pill of a stronger medication. It should help a lot more and we only have to give her medication once a day now. Yay! In addition, Siobhan is eligible for two research studies which is cool!

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!

Maybe I Should Have Been a Nurse...

Yesterday, Siobhan and I made the trip up to the University of Utah to Primary Children's Hospital where I was taught how to give Siobhan her weekly shots of methotrexate. Siobhan was very nervous which I can't blame her for-nobody likes getting shots let alone one every single week. I was nervous but I have to say, I did a good job of hiding it because I knew it would make it worse for her if I had an issue. I made sure to ask a lot of questions so that I knew everything I needed to know. The nurse who taught me was pretty awesome and did a great job of teaching me. People have suggested that we just go and have a nurse at the dr's office do it for us or having someone else come and do it, and while that's a good idea, I feel that it will be easier for Siobhan if it's Carson or me doing it rather than a stranger.

Well, after the training, I gave Siobhan her first shot and I did a very good job. Not trying to brag-I promise-it just felt good that I'm able to do this for Siobhan and I'm able to do it well. If it weren't for all the blood and bad/sad things, maybe I could have been a good nurse.

In other news, we started Siobhan on the Prednisone on Thursday as well. We haven't really noticed any bad side effects so far. She does have a bigger appetite which we expected and she seems to be really intense. All in all, nothing we can't handle. And today she complained about her ankle hurting for the the first time and was limping which made me sad. But we did do something fun! This morning while Audrey was at a birthday party Siobhan and I decorated her box of 'Secret Weapons'. The sequins and glue were flying so you know we had a good time!

So proud of her work

Mr. Will tried to help!

A work in progress-the finished product is so cute! But I didn't get a picture.

It's All In The Eyes....

Self Portrait

Do you see these pretty eyes? They're beautiful, huh? We're going to go get them looked at tomorrow. There is a condition associated with JRA called Uveitis which causes inflammation of the eye. So we're going to a pediatric opthamologist to have it all checked out. Wish us luck and think swell-free!

Coping Mechanisms, Identity, and Premonitions...

People deal with things in different ways. When faced with bad news, some people get angry, some people make jokes (me), some people get proactive, and some people do a little of it all (me again). I think everyone has their own ways of coping for lots of different reasons. The reasons I make jokes, is because sometimes, I just afraid about facing the real issue and how it has the potential to make me really sad. I think some people get proactive because they want to fix whatever it is that's going wrong. And some people get angry because the feel life is unfair-and sometimes it is. But whatever the coping strategy seems to be for a particular person and situation, I don't think anyone has the right to judge as long at the person coping is facing reality. The angry person, I think as a right to be angry in the sense that sometimes things really suck! Like having to tell your child that climbing a tree today isn't the best thing to do because their knee is so swollen. The joker (again, me) probably feels that with everything else surrounding diagnosis is so heavy and frustrating at times, that they need to lighten the mood a little bit. It has made it easier on me and my husband and a little bit for Siobhan to joke around a little bit. The proactive 'fixer' is on the right track because it's good to have an idea of what you want to do to help the situation. Is this all making sense?

Now where am I going with all this? Well, this morning, I referred to Siobhan as my 'Arthritic Daughter' on facebook (dang you facebook, the bane of my existance). A friend called me out on it (and in retrospect, it was probably well intentioned) and I explained my reasoning (it was all having to do with a spider and Siobhan not being to jump or climb to get the spider because of her swollen knee). The label was in jest but it got me to thinking. I refer to Siobhan as my oldest daughter, my beautiful daughter, my smart daughter, and when the occasion permits it, my disobedient daughter because all of those statements are true. But so is the fact that she is my arthritic daughter. Now, I don't want the JRA thing to be her complete identity but also don't want the fact that she's pretty to be the sum total of who she is or the fact that she's smart to be the only thing she's known for. But it would be unrealistic to not acknowledge that she has arthritis and it helps make her who she is. What she/we end up doing with that part of her identity is going to make it bad thing or a good thing...but I think that is an evolutionary thing anyway. So yeah, when I called her that, I was joking (because that's what I do-see above), but it is true. Just like how she's my left handed daughter, my daughter with loose and missing teeth, and my daughter who loves Parmesan cheese.

Some pictures of my oldest, beautiful, smart, arthritic, left handed, sometimes disobedient, parmesan cheese loving daughter.

In other news, Carson and I have both had some weird drams (premonitions) about the future for Siobhan. Mine was that Siobhan needed a hip replacement due to the arthritis. The funny thing is, as far as we know, Siobhan doesn't have JRA in her hips and while replacements are sometimes necessary, they're pretty unlikely. Carson had a dream where Siobhan was playing competitive soccer and one of the dads was complaining that Siobhan couldn't hack it because she couldn't run very well. So Carson went over and punched the dad in the face. Chronic auto-immune disorders will do weird things to people.

Getting Started....

Just a post to get things up and running.

This is a blog dedicated to our family's forthcoming journey into the world of Juvenile Rheumatoid Arthritis. Last Tuesday, May 10, our oldest daughter Siobhan, who is 5 1/2 was diagnosed with JRA. Of course, this is a blow to our family for a multitude of reasons, the biggest reason being that Siobhan's life is now altered. Sure she may be able to play soccer or dance down the line, but we're still in the beginning stages of diagnosis, so we don't know what the future holds for her.

I started this blog as way of keeping people updated on progress, post links that people might find helpful, and just have a place to post my feelings. Obviously, this isn't easy for any of us, but most of all for Siobhan. We don't want her life to change any more than it has to. So we try to keep the negative talk about the situation to a minimum at this point. But we all need an outlet, thus the birth of 'A Stint in Juvy...Because Kids Get Arthritis Too.'

So what's in a name? Whenever I hear the word 'Juvenile', I think about Juvenile Hall and Juvenile Delinquents (Juvy). So I needed (wanted) a snappy title to lighten things up a little bit. Hence, we are doing our 'Stint In Juvy'. It would be really funny if someone (for whatever reason) wanted to know about doing time or how to handle doing time in Juvy, so they do an internet search and find a blog about Juvenile Rheumatoid Arthritis. It would probably surprise them.