Well, it's been an odd couple of weeks. We had to change Emily's methotrexate back to injectable from oral. She cried so much about it when we first talked about it that we didn't want to talk to her about it. Last week when we gave her the Enbrel injection I slid the MTX in first. Boy, did she flip out. It sucks to have to give your kid a shot. It sucks more to have to give your child 3 shots per week. It's hard when things have to change. She had just adjusted to her new dosage of Enbrel when the MTX and even newer Enbrel dosages changed. Now she's trying to adjust to our new medley, but I'm pretty certain that next month she will be starting Orencia. She's not ready to discuss that either, but we will get there in time.
Sunday starts my vacation! This next week is Cub Scout Camp! Zachary is going for his first time, and Kevin & I are volunteering. We're a little worried about how Emily will do, worried that we may have to take her home or over to Grandma's maybe, but we'll see. The week after that is arthritis camp! That is very exciting. I'll miss her terribly, but I know it's such a wonderful opportunity for her. To do more, to try new things, to be with other kids that all understand what she's going through. Who could ask for more? Oh, yeah. And there are doctors and nurses on staff at all times, and they will administer her shots. It's the only place that she could go.
Kevin got a letter from unemployment the other day saying that he qualifies! I have no idea when his benefits will start, and it's nothing compared to what he was getting paid, but it's better than nothing until he finds a new job. Honestly, it has been a blessing in many ways having him home. For one thing, someone had to be home with the kids when they were both home sick a week each. But also he's so much more laid back. Work was making him so pissy and agitated. He was so unhappy there, and stressed. There was so much BS. The man that I fell in love with was still there, but he was kind of buried under the stress. I have missed this side of him that I get to see right now. The situation isn't ideal, but for now I just don't care. It's so nice having him take some of the load off of me, having him and now the kids home. It's just good. However, since one of us does have to be up in the morning, I guess I'd better go to bed so that I can get up! Keep us in your prayers please, if you can! Thank you! :)
*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!
Friday, June 11, 2010
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