I am really putting my faith into this medicine! After hearing so many good things about it, I assumed it would be a good choice, but now I think we see some payoff. Emily told me on the way up to the hospital that she was able to walk up & down the stairs at school. She credits the Rituxan! She also says she feels it right away. I pointed out that maybe it was the steroid she was feeling, but she swears she knows the difference. I believe her. It was a nice trip up considering how early we had to be there, and she was in rare form while waiting for a nurse to come poke her. When they actually came towards her with the supply tray however, she freaked! She was very extreme yesterday. She cried, screamed, hollered, & yelled for about ten to twenty minutes. Two pokes was all, but they started in a hand that still had a bruise. She didn't point this out to the nurse, though.... After that she was good. We got there at 7:30 A.M., and we didn't leave until 5:30 P.M. or so, but it wasn't a bad day. Three of our arthritis families were there. :) It was so nice to hang out and chat for a while! I was exhausted enough in the morning to nap. Em couldn't, try as she might. She slept most of the way home, though.
I was able to talk to the nurse practitioner about the blood in her stool. I showed them pictures, too. (It's a sad day when you're taking pictures of your child's poop!) They decided to increase her Prilosec to two times a day to help protect her tummy better. Of course, it was the night of my mom's surgery that Emily told me about it. I really wished that I could just shrink back & ignore everything, but I guess that's not meant to be. We were at the hospital long enough for her to get comfortable enough to open her mind up enough to talk about the port. She had one of the nurses giving her a "Port 101" tutorial. She isn't as nervous about getting a port now since we've talked to so many people. My mom didn't even notice that they had given her one. Mom's is in her neck. She says it doesn't hurt at all, and they only put hers in on Wednesday. Oh, and her Pulminary Function Test came back normal!!!!! I cried, that was such good news!
On the way back home we visited my mom. It was nice and quiet, and cool to have mom all to ourselves. I think that's all I can stay up for right now. I'm soooooo tired! But today was a good day. <3
*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!
Sunday, August 21, 2011
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