This is such a miracle. We have been so blessed. We keep thinking that things couldn't get better, and then they just do. So many horrible things happen in the world, so many trials for so many people. So many kids do not recover at all from this syndrome, but he has so far. I trust in a Heavenly Father who knows the needs of each of His children and He cares for each of us perfectly. We are each given what we need to be happy in our trials and to learn and become more like Him in this life. I learn this more deeply as time goes on in my life. Right now I am so full of gratitude that this is what is right for Russell, and for me. He can run, jump, play. His muscles can get stronger. He can breathe because he has full lung function and his heart works perfectly because it also has the space it needs to grow. I am so grateful to a loving Heavenly Father for directing us on this path and sending us the doctors Russell has needed to be healthy. This is amazing and I feel so blessed to look ahead and see that he will have a relatively normal life from here on out. Even if the scoliosis comes back (which it can) he will have had these crucial years of normal heart and lung development.
We also saw the rehab neuro specialist (Dr. Krensky) who looked at his legs and overall muscle weakness. She actually specializes in rehab for kids who have used orthotic braces. She said NO leg braces are needed. Yea! His toe walking isn't bad enough to need that, thank goodness. She gave us a lot of advice, some exercises to do with him daily. She gave me a list of things to do, buy, or enroll him in. It was a TON of stuff. She seems like a great doctor. I am most excited about the exercises-I think that will help him the most. We're also going to get him special shoes. I love that she was so excited that we can do so much to help him before it gets bad. So he should never need braces, hopefully. We follow up with her in July.