Friday, July 27, 2012

Quiet time

It's been a good week for me and Zach, but a rough one for Emily. Monday her shoulder and ankle hurt. By Tuesday, despite several rub downs, BioFreeze and a hot bath, the shoulder was really bad. Her occupational therapist rubbed it out. Em cried, she begged her to stop. We all knew that the benefit would outweigh the pain. Sure enough, she woke Wednesday able to move it with little pain. Her knees have been "tired" and her thighs have hurt. The thighs worry me the most. The thought of her JM coming back sends fear ripping through us all. Not as badly this time. The storms that we had in June threw our monthly med schedule off. While 2 of her meds are monthly, Rituxan is every 3 months. So far, it has been the drug that helps her the most. We would normally have gone for meds this week, so I'm sure that is why she is hurting.

We had placement testing yesterday for school. She got lucky; she wasn't entered into the computer yet, & the person that normally does it was in a meeting 2 hours away. She will be able to take it at home soon. We need to set up an IEP meeting for her before she's 100% clear. Zach is all set, complete with passwords for the online part.

Em has been determined to go to the beach for a while. Where our summers usually have a brief daily storm & usually drought levels, this year we have had more rain than we can believe. We finally got to the beach this evening. With her JM, a sunburn can cause her disease to flare, so we go when the threat is less. I'm sitting here at the beach now, watching them play, watching the sun go down. There is a constant breeze as I listen to the crash of the waves and the kids playing. It is a perfect end to my week. She's feeling good today, and the kids are so happy here.

Emily & Zach have such a special relationship. I love sharing their lives with them. I am in awe of them. I kept catching them hugging each other. So much love!

Oh, & on a last, different note, I am so proud of them. They have been sitting in my church services with me. While some adults may talk all through the service, my kids are clasping their hands & bowing their heads in prayer. I am just so proud of the people they are becoming. I am so ready to start homeschooling! I am so blessed to have this opportunity to be with them more. <3

1 comment:

  1. This is a great story getting the word out about juvenile arthritis. My children have psoriasis like your son, and my grandmother had rheumatoid arthritis. These auto-immune diseases tendencies have strong genetic links. Glad to see the Rituxan is working well for your daughter. My lupus responded dramatically.

    Thanks for your visits and comments on my blog. Have a great day! Lupus Adventurer