It has been months since I have made a post. Not every story I have to share is funny, sometimes it is just sad or disheartening.
Hooligan A has been diagnosed with Dermatomyisitis. Big word, scary meaning. Basically her immune system has been going non stop fighting an illness that is not there. Adding to her auto immune disease, it has an underlying portion of vasculitis. Her muscles aren't getting enough oxygen and blood flow, so slowly but surely her muscles have been getting weaker and weaker.
In June, her knees developed a red, ever present rash. It didn't go away. Resembeling rug burn, I asked almost daily if her knees hurt or were itchy. She always replies no. I even took her into see her pediatrician. She shared in Hooligan A's thought of it was nothing to worry about. By early August, her hands and feet had the same red rash and tiny white bumps, concerned we took her back in. Hooligan A said nothing hurt still, so we were advised it looked like juvenile arthritis but since she wasn't complaining of pain she refered us to a dermotoligist. By mid September she could no longer get up and down the stairs without help. She would tell that her knees wouldn't "blend" and that she needed help getting down to and off the floor. Back to the pediatrician we went.
This time she asked us to go and see a pediatric rheumatologist in Indianapolis. We had her blood drawn and x-rays taken before her November 19th appointment. By October 25th, the rheumotologist office called and said they were concerned and needed to see her as soon as possible. Our appointment was moved up to the following Monday and we spent an agonizing weekend wondering what was so wrong with our baby.
As soon as the rheumatologist walked into the room she said "You must really be hurting. The good news is, I know what this is and i know how to fix it!". I can not tell you how releiving that statement was, and yet how terrifying to consider what "fixing it" could mean. It means that Hooligan A is the bravest little stinker I know. At 5 years old she has never really been sick. Never needed "pokes" except for immunizations and routine blood tests. Now, she goes through an IV infusion every week and her dad gives her an injection at home once a week too. She takes oral prednisone every morning and swallows it in applesauce like a champ.
I realize that she can live with this. At night I will still have my baby to hold. It doesn't however stop me from crying because she has to go through this. Or that for months I thought she was being whiny because she wanted attention, not because she was frusterated with her unexplainable loss of ability to do all the things she used to be able to do. All the online reports tell of how agonizing this is for kids. How painful it is for them...and of course how it can be fatal if left untreated. Thirty years ago this very well could have been a life ending diagnosis. Thankfully she has an excellent prognosis and we are very blessed to have found it early enough that it didn't get any farther. By all accounts, once we get this in remission she might never experience this again. But watching my baby cry and ask "ow ow are you done yet? stop it" once a week is just heartbreaking. I cry with her and try not to look as sad as I feel.
Does anyone out there have any notes of wisdom? Or encouraging mantras that have helped them through tuff business such as this?
