It became clear to me that by Sunday, maybe Monday morning, we should not have skipped that steroid pulse on Wednesday. His limp kept coming in and out, the good ol' red rash on his face returned.
Tuesday we had a physical therapy. We love our physical therapist. She is knowledgeable, and does well dealing with Gary. His reports came back and it was what we expected. Below average to well below average for bilateral coordination and balance. So the plan is as soon as he is to a infusions once a month we well step up therapy. We are hoping this summer to do twice a week, and occupational therapy, like hand strengthening ect,.
When I told our doctor that I think we should have went ahead and pulsed him last week, she brought up one more time, the port. She warned me that this was the last time she would mention it. She said that she is not in favor of it, but if I am, then she will put the order in. Because it looks like we are going to go to once a week infusions for a little bit here. I said no. Then we had a 5 poke infusion start.
Just going with it right now. Making sure he stays walking and swallowing. Making sure I stay in tune with his symptoms. Tired.