Another day done. Thank goodness. Each day is filled with so much, so much courage, endurance, grace, kindness, love, and heartache, difficulty, and pain. It’s all in epic proportions. Seeing Titus’ in the wheelchair (with the weight swinging behind) and enjoying himself was joy lived. Sitting through him trying to get to sleep tonight with everything bothering him was despair lived. I really can’t say thank you enough to all of you who are our friends and family. There isn’t a doubt in my mind that we are loved more than we deserve. Thank you, thank you, thank you. And, although I hope none of you ever have cause to need us like we’ve needed you, I hope we can be there for you as you’ve been for us. Thank you for the facebook posts, the texts, the calls, the coffee, the prayers, the lived love. It regularly brings me to tears.
I also need to say that Doernbecher rocks. The x-ray tech (who has a mobile machine and COMES TO OUR ROOM) took an x-ray of Titus’ bear. Just because he knew he would be a bit of delight to my boy. That’s all kinds of awesome. Our nurses bring toys and appear as if they have nothing better to do than chat with us. Our PT who got him set up in the wheelchair brought him a squishy animal with a ball that shoots out of its mouth when you squeeze. She then encouraged Titus to drive around finding targets. These people are amazing and I love them for the care and kindness they have shown us.
Clinically, so far, it appears the muscles are stretching, which is good and necessary. But there is little to no bone movement, which is expected but not what we hoped to see. Since Titus has had this condition, likely all his life, the doctor doesn’t really expect his bones to move much, but we’d sure like to see them get into alignment by themselves. Maybe we will know more tomorrow. Also, thank you for being generous to me if these posts are filled with errors. I want to get them posted, but it’s been late and I’m tired.