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

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.