A couple of short weeks ago, bedtime was indistinguishable from the rest of the day - Collin slept about 22 hours out of the day, so bedtime just meant moving him from the living room to his crib. Now, however, he's warming up to a bedtime ritual - coconut oil massage, pretend nursing with mom (he doesn't drink anything, it just comforts him), reading with dad, some alone time feeling one of his toys (Chuck the Duck, pictured here, is a current favorite), then swaddle and go to sleep. I can't describe the sweetness of getting to experience a little bit of what most mothers do every night.
Of course, we owe a lot of this to prednisone, which seems to be a fairly good match for Collin's body chemistry at this point. He is averaging one cluster of spasms every two to three days and, though he is irritable, it's nothing like we saw on ACTH. He has a fairly normal daily schedule going, he smiles everyday, he opens his eyes and looks through his glasses often, and he is so much more vocal I can hardly believe it. But the goal is for the spasms to stop completely, so we're not sure how long he will stay on prednisone. Not to mention the fact that it suppresses his immune system so much and we're heading into cold and flu season and his entire medical team is trying to impress upon us the seriousness of guarding him from germs. Thanks guys. I can always use a little reminder to worry about Collin.
Tomorrow is a Neuro Day, during which we will discuss our trip to Cleveland Clinic, find out the results to the most recent round of tests, and come up with the next phase of our plan. I'm putting together my typed outline of notes and questions to take with us. We have to be united and in top shape since our time with the neurologist is so intense, so we'll go over everything together ahead of time. Maybe do some stretches.