Gary is doing really good. His energy is that of a normal almost three year old. He has been playing hard. The only thing I noticed were stairs are hard for him again. He may be starting to run out of steroid juice. We go in and fill our tank on the 19th. It is our overnight stay for Cytoxan. Everything is so gradual. Ever so slowly starts to slow down, so its barely noticeable. That is wear it really hit us. I didn't notice before because it is just small things. The question that is asked, "does he ever stop, slow down, and rest?" . My Dad use to ask us that when McGuire was like that. McGuire's energy was endless. He would even jump in front of the TV to interact with the action that was going on. When Gary was pulsed a couple weeks ago, he was running and jumping. For a moment I thought he might run right up onto the wall. I love it. I hate it in the same breath. He needs steroids to have energy to be a normal kid. No need to dwell. But acknowledge it in my thoughts. I have also noticed a change in his gestures when he swallows food. We are no stranger to what is called dysphagia. Difficulty swallowing. No choking though like before. Just something only I would notice because I am his Mom. So here is what I suspect: If this was a "flair" or his disease trying to kick it up a notch, it started the way it did when he was first diagnosed. Started with a rash or in this case an ulceration and signs of deterioration of the skin. When he was first diagnosed, the muscle weakness didn't hit until then end of May, so weeks later. Despite heavy doses of everything, he still had the muscle weakness hit and hit hard. So the small difficulty he is having swallowing and stepping up and down steps may so right along how it works.
Mason is in the hospital with an infection of some kind. He is feeling better. Praying for the Smedleys.