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.