It's so weird here without Emily. Yes, Zachary does talk a lot, & Ashley often does, too, but I think that everyone is feeling just off a bit with her gone. Tomorrow afternoon I will call the camp and find out how things went at the clinic, how her ANC was, & if she got her Enbrel or Prednisone or maybe the Salumetrol? I feel horrible that I won't be there to hold her for any of it, but I know she's in good hands. She's amazing.
I pour so much love into that girl. I spend so much time researching her diseases & meds, & advocating in different ways. I'm always thinking about which med we need to do today, or on rare occasions which one we forgot yesterday! There's a hole in my heart when she's not here, & I find myself still thinking of the same things. I am absolutely sure that she is having the time of her life and she will be fine! But that doesn't stop me from missing her like crazy. Only a few more days...
*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!
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Tuesday, June 22, 2010
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