Our Hero!!!

Clear CT Scan! We are elated and so excited to report that Connor is still NED and doesn't need another scan until the summer, woo-hoo! We saw the doctor today and he is very pleased with everything, the scan and Connor's continuing to do so well. Thanks for all the prayers and support during the scan-anxiety. It means so much to me and Sam to know how loved and cared for our little guy is. We are so blessed!

We discussed how much longer we are going to continue the steroids, looks like it will be around another year. That is good news and bad news-good because the very thought of weaning him off of the steroids scares me, the possibility of his OMS relapsing when the medications are withdrawn is frightening. He could lose words, his ability to walk, etc. I don't want to think like that but it is hard not to remember where he was and we don't want to risk all that he has gained...but, it becomes very dangerous to stay on these drugs too long, then you get a whole other set of problems from the side effects, in Connor's case, bone issues, cataracts, etc. We are going to see an opthalmologist soon just to check and make sure there isn't any eye damage beginning...

We have kept busy with lots of fun Christmas activities...and more to come! Hope everyone is enjoying the holiday season. Love to all!

Debbie