Last month we noticed what we now know to be the first of Erin’s flare-ups. Over a month ago, Erin had a large squichy lump in the right of her chest that started to grow larger. We saw several doctors and pediatricians, and eventually had an MRI to determine what it was.
After the MRI it could be seen that it was cartlidge that is turning into bone. The swelling has subsided, but immediately after it went down we could see that she has limited movement in her right arm. We looked at photographs from last month, and Erin was swinging her arms just fine… and now her right arm is pretty much by her side when she runs.
We’ve been keeping an eye on her body for any new swelling, and the past few days we’ve been suspicious of her right back. The right side of her back is now obviously swollen, and we know exacltly what that means… bone is forming in her back, and once it’s done, then Erin will likely have less movement in her right arm.
Yesterday we were at a restaurant, and Erin couldn’t even fit an after-dinner mint past her teeth. She got very upset that she wasn’t actually to eat the candy she wanted. Later that evening I gave her some grapes, and she would only eat them after I cut each one in half.
This morning, I was walking with Erin and asker for her hand. “No!” she replied. I realized I was walking on her right side, and I would have to pick up her right hand, which can’t lift that high anymore. I went onto Erin’s left side and asked again, and she gave me her hand without question. Obviously it hurts her to lift her arm… from what I’m reading the flare-ups are what hurt, and then the pain goes away once the swelling goes down. Unfortunately the swelling is the telltale sign of new bone growth… we can give her medicine to reduce the swelling, but it doesn’t stifle the havoc in her body.
I’m starting to get an understanding, and when I’m with her it’s easier to not cry. You go day by day, and I’ve learned to somewhat get used to it… but I panic every time I see these new flare-ups. I don’t know how fequent they’re going to be… but I know that each one will be a dramatic metomorphosis.
One month ago Erin had no mobility issues in her arms, and now she is obviously constricted. This disease is currently attacking her right arm, and there’s really nothing we can do about it.
