Well, it's another week with a sick child, and a new flare to boot. Whereas once Emily was so well managed, that seems to be a thing of the past. It's funny how a new sickness or two can change the course of everything. It makes me sad and angry.
Last week it was Zachary that had the weird new "virus" that seemed to respond to antibiotics. This week it's Emily's turn. I predicted that one way ahead of time. What I didn't predict was how she would flare up again, so close on the heels of increasing her dosage of Enbrel. It hasn't been too long since we increased her, but I believe it's been long enough so that it should be working better than it is. Today her hands are bright red, her knees are puffy and she's having a hard time walking. All week she's been hanging out on the couch. Thank God for the sleeper sofa bed! That was the best decision we've made in a while. She wanted to go to Brownie's for a while tonight, but she didn't want to stay long. She gets so tired so quickly when she's flaring. It's just wrong to watch her hobbling around like a tired, tiny, little old lady. So, I suspect that at her next appointment she will be switched to Orencia. The thing that worries me about that is it's an IV treatment. Somehow, I feel like we have some control over the situation giving her the shots ourselves. I can't do that if we move to IV. Not to mention the first month we'd have to drive an hour away every week to go hang out at the hospital for it. However, on a more philosophical note, I think that God made these sick children more lovable, more sweet, more heart-wrenchingly perfect. I love all of my children equally but in different ways. The strongest bond, however, is with Emily because I pour so much love, thought, research, time, energy, heart, sadness, happiness, everything..... into her. I try not to let her see how much, but my thoughts focus mainly around her. I know that she knows to a degree. She went from being a huge Daddy's girl (before we realized there was a problem) to a total Mommy's girl. She knows how hard I work to try to make her life easier.
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Thursday, June 3, 2010
On our way to Orencia
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