Let's Move Together...

We're very excited because this Saturday, June 4th, our family is going to participate in the 2011 Arthritis Walk! It's totally short notice, but if anyone who reads this and lives in Utah wants to walk with us, let me know. Of course this is a fundraising walk so there's also the option for people to donate if they wish. I'm not the type of person who would go an solicit donations from people personally (I don't want to be that person) but I did want to let people know that it is an option and if they chose to donate, I wanted to let them know how to do it. Visit this link to the Arthritis Walk-Salt Lake City. There you will find two main options-to 'sing up' or 'donate'. If you choose the sign up option, it walks you through the process of joining our team. If you choose the donation button, there are a few options. Choose the button that says 'donate to a team'. Then just scroll down to find the team called 'Mitchell Family' with Meghan Mitchell as the team captain. At this point, I'm not going to ask anyone individually for donations and I won't be offended if you don't, I just wanted to put it out there.

So why is this so important to us? Well, there are obvious reasons. The other reason is in regards to some sad numbers that I read about. While this walk is for everyone with all forms of arthritis, did you know that there are 300,000 children affected by the Juvenile forms of arthritis? But guess how much money the government spends on JA research.....$9.8 million. That may seem like a lot, but that only works out to $32 a child-that would cover one copay for us to visit the rheumatologist with $2 to spare. So obviously, every little bit helps. This is a disease that has no cure, but wouldn't it be cool if one came along?

Anyway, moving on....Siobhan's been on the prednisone for a few days now and we're really starting to see the side effects. Some are easier to handle than others, but the one that makes me smile is now hungry she is! This girls is hungry all.the.time! The other day for lunch, she ate and entire grilled cheese sandwich, a whole grapefruit, and a bunch of milk. For those who don't know Siobhan like I do, that's a lot of food for her to eat for lunch! Today, she ate every bite of her happy meal a ton of my salad from Costa Vida, an apple, and various other snacks. When we saw Kung Fu Panda 2, she was chowing down on the popcorn that grandpa got. Such a drastic change.

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.

Green Smoothies...

We've been experimenting with green smoothies this week. We had an enrichment night last week where a sister in the ward taught us about the benefits of leafy greens and how to make them into smoothies. We had amazing success with the one I made this morning so I thought I would share the recipe. Everything is approximate...I didn't measure anything.

Chocolate, Peanut Butter 'Milkshakes'

Once container of Vanilla yogurt

About 4 oz of milk

Large glass full of ice

A hole bunch of chocolate syrup (you could do this to taste depending on who's drinking it...for the kids, I needed a pretty good amount)

Blend everything up

A large handful of spinach

A few handfuls of Kale

About a 1/4 cup of Peanut Butter

Blend-taste and add more chocolate if needed

1/2 a banana

Blend one more time

It's fun to experiment with. Leafy greens are full of really good things for you. The at Enrichment night used Spinach, Kale, Swiss Chard and Collard Greens. So far, we're only doing the spinach and kale b/c that's what they had at wal-mart. We'll branch out and use the other ones eventually.

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!

Good News...

We just got back from the pediatric opthamolgist and good news, Siobhan's eyes had no indication of inflammation. I'm so happy. The bummer of it is that Uveitis can creep up out of nowhere and there are no other symptoms to indicate a problem-meaning no pain. So we have to go back every 3 months for the next 4 (yes 4) years. If left untreated, Uveitis can cause some serious problems so we have to be vigilant. The doctor didn't have the results of her ANA (that's a blood test for auto-immune diseases like JRA and Lupus-'It's not lupus! It's never lupus!-Quick, who says that?) so if he gets the result and it's normal, then we can go every 6 months instead. So for now, this is awesome news! Hopefully when we go back in Aug, we'll be able to keep saying that!

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.

Specialists...

Now that we have a more firm diagnosis for Siobhan, we are into the realm of seeing Doctor's who refer to themselves as 'specialists'. To me that sounds like a military team or a pretentious repair man. Maybe a just a pretentious doctor? I'm sure for the most part, they're not pretentious, it just sounds that way sometimes. Especially when you find out that their schedules are super exclusive! When I had to call the pediatric ophthalmologist at Primary Children's Hospital, they were all, 'Okay, the soonest I can get her in is July 12....lets see her then.' And I was all like, 'Um, I think we'll call the other referral.' The other place was able to get her in on May 24th. So I called yesterday morning to make the appointment with the rheumatologist and they said they didn't have a referral from our Doctor. So I called him (let a message, 'cause that's how docs roll) and let them know that they needed to send a referral. When I found out the referral went through, I went ahead with the process of scheduling the appointment. The nice lady on the other end of the phone line was all 'Why don't we see her on June 30th.' Hmmmm, Dr. W wanted her seen this week so that wouldn't work. But he did offer make calls and pull strings to get us in sooner. So I took the appointment just in case and had Dr. W use his connections. I found out today that they were able to get her in next Wednesday because they had a 'cancellation' that didn't exist 14 hours before. See what I mean, exclusive!

I wonder if making a donation is the medical equivalent of shaking a maitre d's hand with a dollar bill hidden in your palm.


****I feel the need to include the following disclaimer....I really do love Doctors and our pediatrician is especially awesome! Most of my above comments are in jest.****

Results...

We got the results from Siobhan's blood work. No evidence of anything cancerous (my Doctor knew that, however illogical it was, I was worried about that) but all results are consistent with inflammation and arthritis. So good news and bad news (on both the illogical/irrational front and the logical/rational front). And I love having a Doctor who is willing to pull strings for us. We couldn't get Siobhan into the Rheumatologist until June 30th, but he's making a call. I feel important!

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.