Bone Wars

Well, our horrific week has finally come to an end. Alex will be going back to the rheumatologist on Monday and to the cardiologist for an echocardiogram and EKG on Wednesday. In the meantime, we just wait and worry. The swelling in his right knee (which was by far the worst) is completely gone today, so that is definitely cause to celebrate! The strange rash on his left wrist is also gone. The arthritis has now moved to the smaller joints though as his knuckles are a bit swollen and painful tonight. His left knee is also causing him quite a bit of pain. He has been pretty good dealing with all of this, but he has started acting out. I think he's just so exhausted and sick of being in pain that by the end of the day, he just has a total meltdown- it's hard to watch. He's been sleeping in until nearly 9 every morning- which is sooooo not like our normal early riser (usually up by 5) so I keep hoping that the extra sleep is his body's way of repairing itself. Not too many days ago I would have just about paid him to sleep in that late......as they say- be careful what you wish for! Anyways, I've been trying to talk to the kids about what is going on. Poor Anna thinks that this was all caused by Alex climbing on the sticks outside and she keeps saying, "I'm not ever going to climb on sticks mommy"....Doesn't seem to matter what I tell her about the 2 things being unrelated. Alex on the other hand seems to understand a bit more. We have been careful to let him know that this is not something he caused or had any control over. When I was talking about it with him tonight, he couldn't really tell me where it hurt exactly so I had the idea to draw a picture of a body and then have him draw inside of it what was going on in his body right at that very minute. After he had drawn it, I asked him to explain it to me. He said that the little circles (notice in the left knee and left hand area) were bullets that were being shot over and over out of his bones into his joints. He said, "It's pretty much just a bone war in there right now". Talk about a metaphor! We are still praying this will all be over soon, but are trying to be patient. Thanks again for all the calls and support. There really is nothing anyone can do right now except pray.