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'.

Rated R, for Remission...

So it's been like a week, but I haven't been on the computer as much as normal, so I haven't really blogged much. Most people already know our great news about Siobhan's arthritis, but I wanted to put it out there for the masses (how many of you are there?)

Last Thursday, we had a visit with Dr. I-she's Siobhan's rheumatologist and she's awesome! We were there for a follow up to check on Siobhan's joint injection sites. As usual, she ended up doing a complete examination of all of Siobhan's joints to make sure that her affected joints are doing well along with making sure that the arthritis didn't feel like attacking any other joints. Everything looked so great, Dr. I couldn't even remember which joints were injection because none of the typical signs were even there (i.e. tissue atrophy, dimples at injection sites). We got good news at that point that there was no adverse reaction to the injections. Woo Hoo!

Then Dr. I laid the big one on us. Siobhan is considered being in 'Clinical Remission with Medication'!!!!! This is a big deal and I'll tell you why. We've always been told, that there are a few possible outcomes for this arthritis journey. 1) Siobhan could outgrow it. That happens to less than 25% of patients. We're not holding our breath. 2) Siobhan would have continual flare ups and issues for the rest of her life. 3) Complete remission where there is no signs of active arthritis in any joints without any medication. Well, we are on the first step towards getting to number 3!

So how do we get to #3 you ask? Right now, Siobhan's status is defined as having 'no active signs of arthritis in any joints with medication'. So we know that if we took Siobhan off of her weekly injections, her arthritis would rear it's ugly head and cause us all kinds of problems. So we're going to keep her on the Methotrexate for a year from September 8th and see how it's looking at that point. If her status is the same at that point, we'll take her off those weekly injections and if she can handle that, then she will be considered to be in 'True Remission'.

We're so excited about this because it took a little longer for us to get it under control than it usually does for typical patients and we had to do a little more than most. But we're there and that's awesome! Dr. I took us off of the 6 weeks visit schedule and moved it to every 3 months-so that's awesome! Over the next year, we're going to hope and pray that the meds keep working and that the arthritis doesn't decide that it likes her elbows or hips or any other joint.

There's nothing like seeing your daughter in extreme pain or watching them try to keep up (granted Siobhan didn't have a huge problem with that, she just found ways around it). But there's also nothing like knowing that the likelihood of seeing it again, has been exponentially decreased!

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!

Beautiful Eyes Are Still Beautiful...

*Yeah, I've been MIA...Mr. Will shoved something into our DVD drive and it messed with somethings so I haven't been on the computer for a while. But we have a temporary fix and now I'm back on! Woo Hoo!*

Anywho, onto the big news, on Monday (Aug 22) we had another appointment with Dr. P the opthamologist. If you don't remember, one of the issues associated with JIA is Uveitis which has no symptoms so frequent trips to the eye doctor are necessary to make sure that there is no inflammation.

At our last appointment, the doctor was unsure about Siobhan's ANA results so we were put on a three month visitation schedule. (We did find out in the interim that Siobhan's ANA was negative which is VERY exciting!!!!) At the Doctor's appointment, everything went very well and everything in Siobhan's beautiful eyes is perfect! We are so happy and now we don't have to go back for six months....which means yea!

In other JIA news, Siobhan seems to be responding well to the steroid injections. We're going to the doctor in about 10 days for a follow-up. I think we're going to have some good news!

Siobhan during an impromptu fashion show wearing Nama Nadene's old-school, vintage dress

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.

Injections...

Well, our 'Stint in Juvy' took a turn for the slightly more intense today when we took Siobhan in to have her joint injections. First some background and clarification on what was actually being done and why. The basic gist of it all is that the prednisone that Siobhan took this summer didn't do what it needed to do. We were using it as an anti-inflammatory but after six weeks, the inflammation didn't go down enough and Dr. I was not pleased with the result. So she recommended that we just put the steroids right into the joints themselves. Does that clarify it all a little better?

So this morning was the big day. Because Siobhan was going to be under general anesthetic, she had some very specific requirements as far as diet. We were told that if the instructions 'were not followed exactly, the procedure would not happen!' So I got up really early to head her off in the morning. You see, Siobhan has this problem when she gets up and I'm not up yet. She gets into the pantry (or our 72 hours kits-we won't talk about that) and she snacks in the morning. Well, today was not the day for that. She wasn't allowed to have any solid food after midnight last night, and nothing after 7 am. So I got up at about 6:45 to make sure that there was no snitching. It worked because, wouldn't you know, today was the day that she decided to sleep in...until 8am.

We took Siobhan to Primary Children's Hospital at the University of Utah-they are amazing, more on that later-to their Rapid Treatment Unit. Got all checked in went to the 'pre-op' room where the nurse took vital signs and all that good stuff.

*Vital Signs*

Then the best lady came in and explained everything to Siobhan about what was going to happen. She used pictures to show her what the room was going to look like, had a mask to show her how it would feel and let Siobhan pick out the flavor that she wanted to breath in while being given the anesthetic.

Funny story, she had probably 10 flavor vials for Siobhan to smell and pick her favorite. They made a like and dislike pile but the like pile was much bigger than the dislike pile....like she put every vial in the like pile. It was pretty funny. When the anesthesiologist came in Siobhan still hadn't decided. She was leaning toward Cotton Candy then decided on Cherry and the anesthesiologist was happy because he said the cotton candy was too sweet. But in the end, she went with Cotton Candy. They let Me and Carson smell it and OH MY GOSH, it smells just like childhood!

Anyway, Siobhan chose Carson to head back with her while she went 'under'.

About 25 minutes later, Dr. I was back in the room telling us that everything went awesome. She got the needles in just great and she even drained some fluid off of the left knee. She also let us know what we need to do when she got home. That includes keeping her laying down for the first 24 hours (you try keeping Siobhan down for 24 hours....good luck!) and limited activity for another 24 hours. Then about 5 minutes later, a nurse came and brought us back to find a very loopy Siobhan sucking on a straw and drinking grape Fanta. She was hilarious! The first thing she said was 'Mommy, Daddy, I feel dizzy!' and she had a huge goofy grin on her face.


She also got a snack of cheetos which was a big treat because I don't let them in the house (I hate cheetos). Pretty soon, she was loaded into a wheel chair and we were heading to the car (and the torrential downpour).

We were so nurvous about today and I'm glad that it turned out that we really didn't need to be. Between the mention of the words anesthesia, steroids, and injections plus the fear of the unknown and we were, needless to say, a little worried. Siobhan has been resting well and has had minimal pain which has been managed with tylenol. Dr. I also told me that if everything looks alright, we can stop her daily medication and only do her supplements and the weekly injection. How great is that?

And now a word about Primary Children's Medical Center...I know that all children's hospitals are good, they treat children right, so they have to be good and you have to have great people in a setting like that. I just think that PCMC has to be one of the best. We are so lucky and so blessed to have the resources offered there at our disposal. I'm not sure if we would have had the same level of treatment in Denver. Maybe we would have, but I'm learning that Pediatric Rheumatology is a hard department to come by and we are so lucky to have such a beefed up department so close to us. All the nurses at PCMC are friendly and caring and they treat you like you and really your child is the only one who matters. I'm so grateful for that.

It truly is a humbling experience to walk through those doors. Talk about putting you in a vulnerable position with a mixed bag of emotions! At first, you feel grateful that it is available to you and that you only have to be there for a short amount of time, but then you see a parent with a child walking around and you recognize, through subtle clues-exhausted eyes, conspicuous hospital bracelets, jammies, that they have essentially made their home there and you can't help but feel sad for them. I'm so grateful that, theoretically, we will not be in that position as a result of Siobhan's arthritis.

Ear Infections...

No, Siobhan does not have an ear infection. She has been listening to us talk about her joint injections and since she doesn't understand what they are, the closest thing that her brain could come up with is ear infections. Isn't that funny! Anyway, we're going to Primary Children's Hospital in the early AM so we can have her left knee and right ankle injected with steroids. Yay! We're hoping that it's going to be a one time thing. Dr. I is confident that it will be a good thing, but we won't know how often she'll need the injections until she's had this one and we've seen how she's handled it.

Carson gave her a wonderful blessing this evening and we're confident that we have the Lord on our side. Please pray for us and Siobhan and all those involved. I'm going to take the computer with us to the hospital and I hope to update the blog while we're waiting.

Fun Fact Friday...

Out with the old in with the new. That's the theme for today's fun fact. For the longest time, we always knew the most common type of Juvenile Arthritis as Juvenile 'Rheumatoid' Arthritis or JRA. Well, that's not the case anymore, at least when it comes to children. The new term for these types of Arthritis is......drum roll please.....

'Juvenile Idiopathic Arthritis'

Why the change? To be honest, I don't totally know. Dr. I said that children don't usually get a 'true' rheumatoid arthritis (every now and then they do) which means they don't really know what causes it (hence the term 'idiopathic'). Although I have to say that after reading the definitions on the arthritis website for Rheumatoid Arthritis and JIA, I can't really tell the difference. Take a looky loo and see for yourself. Maybe there's something I'm missing. Anyway, so it's no longer JRA although the medical community still seems to be having a hard time making the switch. Case in point, when we went for Siobhan's eye check up with Dr. P, the nurse and then doctor both referred to it as JRA. And according to Dr. I, the department head at Primary Children's Hospital still has trouble calling it JIA. Too funny! Usually when I'm talking to people about it, I just say JA. It's easier and saves a lot of time, confusions, breath and explanation.

So there you have it....your fun fact about arthritis....now go tell your friends!

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!

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

Shots and Ear Piercing...

Siobhan has been getting her methotrexate shot for almost 6 weeks now. As her reward, we told her that she can get her ears pierced. We've never been opposed to her getting her ears pierced, we just never thought it was the right time. But we thought that if she can handle getting a shot on a regular basis, she can handle getting her ears pierced.

Well, this Friday will be number 6 which means it's time! I think we're going to do it when we're in Portland next week and see if some of the cousins want to come. Here's the problem. I'm nervous about where to go to have it done. I was going to go to claires, but then I read some things online where people had some horror stories. I've been told by a lot of people not to go to the piercing pagoda so I think I've ruled that one out. And believe it or not, I've even thought of taking her to a tattoo/piercing parlor because I've heard that they are super clean. And did you know that some pediatricians do it too?

So here's my question, what is the general consensus of where to get it done? Should I just stick with Claire's or does anyone have any other recommendations?

Not Much to Say...

I realized today that I hadn't posted in a while. I don't know if I have any loyal readers, probably not, but I thought it might be good to put something up just in case. I've been asked a lot lately how Siobhan is doing and it's so gratifying to know that so many people are thinking of Siobhan and praying for her. It really means a lot.

Siobhan is doing well. We are all just adjusting to life with Juvy and making the best of it. I think the thing that is bothering Siobhan the most is side effects from her medication. The prednisone is doozy and it is making her quite emotional. Because of that, we started to taper her off of it a little sooner than expected. So she's going to be off of it about a week sooner that we had planned. We're very grateful for that. We go back to the rheumatologist on July 14th and we're hoping for good news. They need to do some blood work to make sure that her liver function is up to snuff (the methotrexate can have a negative effect of the liver) but I think she will be fine. We're hoping for improvement in the swelling and improved flexibility which I think is starting to happen already.

We are playing with different ways to make her shot a less negative experience. A sweet sister in the ward brought her a beautiful statue of Christ which Siobhan always makes sure she has with her. This past Friday, she didn't cry at all when I gave it to her because we decided on a 'shot song'. I had to sing 'Who Let The Dogs Out' and it seemed to work! She's only one shot away from getting her ears pierced. We're all very excited!

So that's the long and short of it. Not too many updates, but things seem to be going well. Love that little girl!

So Much To Think About...

We've been so good about giving Siobhan her meds. We never miss a dosing and she always gets everything she needs. It hasn't been easy though. She was fighting us so much on taking the liquid prednisone, because of the taste, that we had to call and have the prescription switched to pills. She swallows pill just fine but she still doesn't like the taste. So we had to employ a sticker chart. If she takes her prednisone without complaining everyday until she's done (July 9th) then I will take her to the Sweet Tooth Fairy for a cupcake. And I've mentioned before that she doesn't like getting her shot (who would) so we have a sticker chart for that. As soon as six weeks is up, she's getting her ears pierced. She's cooperative for the most part, but or the things she doesn't want to do, she is really uncooperative, so we've had to employ these creative techniques, but they seem to be working.

But there's one thing that Dr. I mentioned, in my own defense it was slightly in passing, and that was to put sunblock on her every morning because one of the side effects of her methotrexate (I think) is making her skin sensitive to sun. That stuck in Siobhan's memory but it keeps falling out of mine. I keep forgetting!!! She plays outside everyday, and I always forget to put sunblock on! I feel so guilty, but I don't think I should, because I'm doing my best with the things that I feel are important. But then I feel guilty for telling myself to not feel guilty because who would want that pretty skin to harmed?

So I decided what I should do. It may be overboard for the time being, but it will make me feel better. I'm going to take our sunblock and put it in the secret weapons box and when I give her her morning meds, I'll sunblock her up. That way, she's good to go and we haven't forgotten. There, I feel better already!

Siobhan, Audrey and Mr. Will on one of their many adventures in the backyard. Don't you love how they all look so deliciously white trash? Siobhan styled herself for the photo shoot, Audrey can't live unless she has a skirt or dress on even if she's wearing pants, and even thought it's about 5pm in the picture, Mr. Will is, in fact, still in his jammie pants. I think they're building a tee-pee, or a campfire, or a tent or something.

Arthritis Walk 2011 pt. 2...

I know I already posted about the arthritis walk but my friend Kristen-who walked with us-took some great pictures that are about way better than mine. That has a lot to do with the fact that she has a fancy camera not a crappy point and shoot that's been spit on, dropped, flung around in my purse and had sprite spilled on it like mine. I need a new camera, but that's a post for another time. Anyway, Kristen took awesome, fun pictures of us all after the walk. Enjoy!

Yep, they're definitely cute and awesome!

This is what Ethan did the whole time...it was very strenuous for him!

How yummy is that face??

Why can't they ever smile?

Such a fun activity to do as a family!

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!

Arthritis Walk 2011...

*The girls just before the walk started!*

We had so much fun doing the Arthritis Walk this year! We can't wait for the Jingle Bell Run this winter and then the walk again next year. We made some new friends and Siobhan was able to meet some other kids who have JA as well. We met the little boy who was the honoree this year. He's and 11 year old boy named James Light. He goes to the same doctor as Siobhan and even has his black belt! As a team, we did 3 laps around Trolly Square and enjoyed the festivities which included raffles, visiting Bumble the Bee from the Salt Lake Bees, dancing to the live music and having yummy snacks.*With Bumble the Bee!*

To those who donated, thank you thank you thank you so much! We were able to reach my personal fundraising goal and because of that, Siobhan was able to get a t-shirt to remember the fun day we had! Audrey won a raffle prize which was super fun also! And special shout out to our friends the Harmon's who came out and walked with us! They are such awesome friends!!!!
*Clockwise from top left-James Light, this years honoree-Audrey during the walk-Kristen with her kiddos and Mr. Will after the walk-Siobhan during the walk*
It was a beautiful day with the sun shining but it wasn't too hot. Audrey actually walked the whole way which ended up being 3 laps of a 5 lap (5K) course. We were so proud of her! She just kept going and going and didn't get tired at all! She totally deserved that raffle prize!

*Post walk-all the kids in various stages of feasting on Paradise Bakery cookies*

I Must Remember...

Dr. I told us that Siobhan would have a shorter fuse and have more adverse reactions to conlfict while on the prednisone. She also said that it would be made worse due to the fact that Siobhan wouldn't know or understand why it was happening. So I have to remember that it would really suck to not understand why something is happening to your body.

As adults, we may not always understand why something is breaking down in our body and why we have to take certain medications. But what we do understand is that it's inevitable, a part of life. Right now, I don't understand why I'm taking so long to loose my baby weight. But I also know that I just had my fourth baby, I'm getting older, and not eating as well as I should. And when It take certain medicines that may have a side effect, I may not understand why, but I do that it's highly likely to happen so I anticipate it to a certain degree.

What I can't imagine is having something like that happen when I'm 5 1/2 years old. Think about what it's like to be a 5 1/2 year old. I imagine that Siobhan is somewhat like most kids her age. She's worried about play dates, running through the sprinklers and getting ready for kindergarten. She probably just recently figured out that she has bones and that she's the oldest child. But then you throw into the mix that she now has to take medicine everyday (sometimes twice a day) and those medicines make her a little crazy. But she doesn't know or understand why. She knows that her knees are swollen, that they hurt, and that she has something called 'arthritis' but that's the extent of it. She knows that she has to take a ton of medications and that her prednisone makes her hungry. But the mental and emotional side effects are taking their toll, but she doesn't understand why she's feeling that way.

I must remember all of that, but it's hard. I mean how many times can she take her mattress off her bed for no apparent reason or wake up at a very unsavory hour before I loose it? Because, to be honest, I have lost it a few times and I feel guilty.

Anxiety...

So the meds, the pain, the swelling, pretty much easy to deal with (for the most part, we all have our days). With the meds, we just make sure to stay on our schedule and then we're done. The pain and swelling, well there's not much we can do, but a rice sock seems to help. The part of all this that's hard to handle is the anxiety. Siobhan hasn't gotten a full nights sleep since we saw Dr. W almost a month ago. We asked Dr. I about it and she thinks that it's anxiety. That tends to lead to sleepless nights for us too. She also started biting her nails. She went from having normal, cute 5 year old nails-aside from her thumbs which are jacked up from all the thumb sucking-to having total nubs.

Long story short, I don't really know what to do. I have no clue how to handle the nail biting. I know that people have put hot sauce or other things on nails to prevent thumb sucking but I don't think that's the answer. Since it's most likely something psychological, is it even something that I should be worried about? I don't know. The sleeping thing though, that is having an effect on basically everyone in the family. Carson and I take turns going downstairs to talk her back into going to sleep or letting her know that she can't sleep with us. When she cries, it wakes up Audrey. When she comes up to our room, she wakes up Ethan. Really, the only one immune to it all is Mr. Will because he can sleep through a bomb going off. Anyway, when you think about her not sleeping, a compromised immune system as a result of prednisone, and the fact that we've been sharing some sort of coughing sickness and we have a very unhappy (coughing) camper.

I don't know what to do....

We've tried a few things. Last night I did some yoga with her after a friend of ours, who has an auto-immune disease as a result of a botched H1N1 shot, told us that it has really helped him. So we tried, but there was a lot of yoga poses that she couldn't do because of her stiff knee (Child's Pose, the frog one). But there are a lot of yoga with kids videos on youtube. We also did some stretching which was nice. After that we did a massage and then to bed. Last night was better. Tonight, we didn't have time for Yoga and stretching as we were finishing up chores, but we did do a back rub which calmed her down. If it works, we'll go with that for a while.

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.