Things are pretty busy around here but we are content. The seizures seem to have decreased in intensity and frequency with the ACTH shots. I'm going to do another EEG tonight so when he sees Dr. Filloux (neurology) tomorrow we can make some decisions. The original plan was to stay on the ACTH until the seizures were gone and then taper off slowly for 6 weeks. I don't think they are completely gone so he may want us to continue on the current dose or increase a little before we start coming down. I think it's been easier to give him the shots knowing that he is improving some. He no longer does the left sided jerking that we videoed but he still wakes up and startles where both hands jerk up a little then relax.
Britt has had a cold for a week and because Charlie's immune system is depressed he got it too. His cry sounds hoarse, stuffy nose and goopy eye and he wants to be held a lot. He isn't interested in doing his exercises or swallowing his tastes of baby food. I can't blame him with a sore throat. I am impressed that he is able to cough and keep the gunk out of his lungs so far. :) When we left the hospital that was one of my biggest concerns.
Before he got sick this week he was doing great in therapy. He was starting to lift his head while on his tummy and didn't hate bearing weight on his arms. Big improvement in my eyes!