Joyanna has continued in her school days with the exception of last week. She had her 3-day bone infusion at TCC. This is a separate infusion than her normal one. It is an IV administered medicine that helps to raise her bone density. Thankfully, since we started this a couple of years ago, her bones are a little stronger. We don’t hope to get her to an activity-based bone strength, just so that moving her throughout her normal routine does not pose a threat for a bone break. We did start a new medicine to try to help ease her extra neurologic activity. These are not seizures, more like involuntary movements and a general state of unrest in her body. So far, it seems to help and she had no poor side effects. If anything, she is probably a bit more alert. We started at a very small dose and have now raised it slightly. We hope this brings her comfort and we can manage at a low dose for a while.
Today is her normal infusion day and she is napping. We are almost finished here and I will wake her, change her diaper and then head home where a friend has been watching Ethan today. She did take him for some playtime at a local inflatable place for kids. That’s extra special!
I had the opportunity to fly to Oregon this past weekend for a ladies meeting and was able to share our story, and what God has done, with the ladies there. It was a wonderful time! I was able to reconnect with old friends and meet some new ones. Oregon is such a beautiful place and the people at Harvest Baptist in Medford are so welcoming. I’ve had the chance to be at that church twice now but it feels like home. I’m thankful for the Spirit of God that connects us as brothers and sisters in Christ.
Ben, Ethan and Joy had the chance (while I was gone) to go to the Southern Oklahoma Speedway in conjunction with a special event sponsored for children who receive treatment at the Jimmy Everest Center, where Joy gets her infusion. Ethan was able to get in a race car and even ride around in it a little bit. They got to watch a race and my husband said it was quite loud (in a powerful car way). Thankfully, the event coordinator had ear plugs for kids and Joyanna needed them. That was a neat experience for them.
This week is back to school and continuing to host married student families in our home. During this season of life, where we need to be at home because of Joy, it is nice to bring people to us. We always have a good time either connecting or reconnecting with these families.
Well, it’s time for us to go so I’ll stop for now.
Thanks for your prayers for us. We need God’s wisdom especially to navigate the path of life for Joy in the upcoming seasons. We’re so thankful for His grace.