Monday, August 19, 2013


Is it a May Day or a Mayday?

Jordan came to us on the morning of May 1st, saying that he couldn't bend his wrist back. I looked at it and it was so huge I knew something was wrong. I hoped that it was just broken. When I asked him how it happened, (he thought it was from playing wall-ball) and how long it had been like this he said, "about three months." I thought for sure he must be exaggerating the time in his memory. It must have seemed longer than it actually was. As I was driving him to the doctor, I had a cloudy recollection of him telling me about his hand and me examining it. "Jordan did you tell me about your hand earlier?" I asked.  "Um... I may have told you that my hand felt weak." he answered. "Well that explains it." I thought "I examined it three months ago and thought it was sprained, and told him to tell me about it if it got worse or didn't get better." But he didn't mention it again. I also remember noticing one day that his hand looked awfully strange, when he was reaching up and his long sleeve slipped back (he always wears long sleeve shirts so I never noticed his wrist getting bigger). I tried to make a mental note to talk to Peter about it and take Jordan to a doctor, but that note slipped my mind. That's when I knew he wasn't exaggerating the time. It really had been about three months.

After our first doctor visit and x-ray we were told, "I don't know what's wrong". They gave us a fancy sling to immobilize it, and sent us to see the orthopedic doctor the next day. The Orthopedic doctor gave us the same exact answer, " I don't know." and added "He needs an MRI." It was frustrating to get no answers. Not even a guess as to why his hand looked so...wrong.

The MRI was scheduled as soon as possible. It was the first MRI that I had experienced. They warned me it would be loud. I even watched YouTube videos to help us prepare for it so Jordan wouldn't be scared. Even then, I had no idea it was going to be that loud! I felt really bad for Jordan, especially when they had a hard time putting in the IV, for the contrast image. I also worried that he would freak out, and not be able to hold still for the required hour and a half. That would mean a redo of the process at a much costlier style, by sedating him as well. But after they finally had the IV in and started the MRI I never saw him move a muscle. I couldn't even see him breathing. He was completely relaxed. It was a huge relief, and they said that he was one of their best patients ever. They gave him two chapter books to keep and read for being so good. He said he actually liked the noise, that it was like he was in space in a rocket.

The MRI results came back a week later with a preliminary diagnosis: "Extensive wrist swelling due to Inflammatory Arthropathy. They wanted us to get in to see a Pediatric Rheumatologist. The only problem with that was that the first available appointment was August 1st. Are there really THAT many kids with arthritis? least we had an answer.

So, until then I tried to call a few times and see if we could get an earlier appointment, and I looked up information on the internet to see if there were things I should and shouldn't be doing. But there was really nothing online about how to treat it. So we waited. And his hand got worse. It even started to curl his fingers in. He worried about it, that it would never go away and get back to normal. I wasn't worried though. Peter had given him a priesthood blessing before the MRI, and it was clear that everything would be fine, but that he would have "a period of healing, and that he should listen to his doctors".

So August 1st came and went, and now I can say we are two weeks into treatment. His Rheumatologist confirmed that he does have arthritis, in the wrist and in both of his knees. They took some tests to try and determine the specific type he has, and they put him on oral steroids. I'm happy to report that it has taken the swelling down almost completely, and he can move his wrist again.

All the rest of the side effects came with it too! Moodiness...He spent a whole day in tears with one break down after another. That was a trying day. And increased appetite... Jordan is EXTREMELY thin. So he needed to gain a little weight anyway, but WOW! Jordan went from being a very tiny eater who didn't like almost everything to a very BIG eater, and it is catching up to his face. His arms are still frail looking, but his face has really filled out!

Both of these side effects worried me when I heard about them. First of all Jordan is already a moody boy at times and he can be very dramatic about it. I don't need anything aggravating his moodiness for sure. And the increased appetite didn't sound really great to me either, because food planning and preparation is by far my least favorite duty as a mom, and the one I struggle with the most. But this side effect has actually been a blessing for me.

Because Jordan is so hungry all the time, he wants to make food ALL the time. So he has taken on a new interest in becoming "as great of a cook as Daddy!" He is anxious to cook and help me in the kitchen now. I have taught him how to make chicken, poached eggs, fried eggs, etc. and he eats them up and then goes to making it again and eating another helping. It's great practice for him, less work for me, and he is an eager learner. It is always so much more pleasant to teach a child when he wants to learn. Before all this happened I can promise you this would have been whiny work for him. I find it all very fulfilling to be doing this kind of teaching as a mother, and he is REALLY good at it. I could never make tender chicken and perfect eggs at his age, but he can now do those things, completely by himself, and it tastes superb! It makes me a proud mama. And, because he is eating better, and the swelling is going down, he seems to be able to handle the emotions with a more optimistic spirit. I feel very blessed. It is weird how getting a problem can actually make life easier for you and take away other problems.

I know they aren't all over though. There is no cure for arthritis, and unlike what I originally thought he probably won't out grow it. So, as far as I understand right now, he will most likely have to have treatments for the rest of his life. We are still so new at this, and don't know so much. But the plan right now is to knock down the inflammation with the oral steroids and then take him off the medication and just do injections into the effected joints. The benefits of the injections could last for up to a year and a half without the side effects of the oral medication.So he should be able to live without pain and swelling, as long as he remains in treatment. Without treatment the swelling would deteriorate his joints.

It's all high adventure, and I know that this is one adventure that Heavenly Father has planned for us, and we can enjoy where it will take us.

1 comment:

  1. It's inspiring to see how well you and Jordan are both dealing with this trial in your life. He loves to cook now! And eat! Looking for the good in whatever trial you may be going through is hard, but you are doing it! I'm glad it can be controlled and he will be ok! :)