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.