The rheumy's office called me several times on Monday and again today due to her white cell counts. They should be between 4.27-11.40. I'm not 100% sure exactly what hers are, but the camp nurse said it's around 2. She's not sick, she's having a great time from what I've been told. They were supposed to get back to me on what was happening with her treatment plan this week but I still know nothing. I know that the camp nurse said she still hadn't sent an email that she was trying to send since 8 A.M., & this could wait so I don't fault her. I just hope that I know something of what to do before she gets home. Now I'm not sure if I will need to hold her Methotrexate on Monday or not. I'd rather not. I realize that having such a low immune system isn't that great, but I truly believe that it's the injectable MTX that's turn her fingers back to almost fingers instead of little fat sausages. Not to mention that she finally has a bit of fatty tissue on her arms again. That makes it so much easier to inject her.
Oh, & I got our conference registration confirmation & our room confirmation! I'm so excited!!!!! This is like a dream come true for me. I have spent so many hours researching arthritis, scleroderma, Raynaud's, related matters, & also reading boards, trying to help others. And they make it fun & educational for the kids. Who could ask for more? Not me. Just over a month to go... :)
*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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