One thing that I have learned in our journey so far is to take one day at a time. I try not to have so many expectations, because you really just can't predict autoimmune diseases. Usually, just as I think I have things figured out, I get knocked down a peg or two.
I was really looking forward to Emily's infusion this month. I knew that she really felt that she needed it since her wrist & elbow were still bothering her, but I also had a long list of questions. Usually, kids with Dermatomyositis are seen every 4-6 weeks. It's a rough disease, very hard to get under control and can suddenly swing in the opposite direction quickly. We weren't seen last month, so I though for sure she would see a doctor this time. I knew that they had changed the way they schedule patients, but I hadn't realized that they were scheduling the kids for IV's and not telling them that the docs weren't in. I made sure that they will be in the next time we are there. I wanted to talk about her flaring arthritis, her inability to eat more than 2 bites again now that she's on lower prednisone, and I wanted to see about repeating the pulminary function tests since Em totally didn't even try last time. It was the day she was being released from the hospital and she just didn't want to be bothered. Now she's been sick more in the past 4 months than she has been ever since being on the immune suppressors. Maybe it's the Prednisone. I don't think so since they increase her doses when she's sick. I really wanted to talk about all of that, and a patch on her head that may be psoriasis.
Em did very, very well with her treatments. It was lovely to walk in to friends saying hello :) Emily went off with her favorite nurse to have her needle... BY HERSELF!!! I was shocked! This was the very first time that she didn't cry, whimper, or even need me at all. I was so proud! And all the while she was talking his ear off. Unbelievable. The rest of the infusion went without anything noteworthy... until we were leaving.
I had asked the nurse's for a copy of her labs. I knew that the doctor's office would do that, but I didn't know the infusion room nurse's would. The copies they gave me showed that day as well as results from the month of May. They didn't show high/low, so I had to take them home to compare them with my copies from the doctor's office. Those copies do show ranges. We had gotten her muscle enzymes down. Last month they shot up quite a bit. This month they are only 2 points away from being in the high range. I had been watching how pink her knees had been getting, but she didn't seem to feel a problem so I didn't worry about it. At least it's summer break, but she shouldn't have to go through this. I know our docs are doing everything within their power. I know this is a crazy hard disease to get under control. I just thought that maybe something would be easy. Just this once. So, I'm keeping a sharp eye out and trying to figure out what to do. I'm sure the answer will seem clear in a day or two. Frustrating.
Well, we have Cub Scout day camp in the morning and it is way late. Have a good night!
*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!
Tuesday, June 7, 2011
Not at all as I expected
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