I've never been so proud of my boy! So today we had the "dreaded bath", Broviac flush, and his GCSF shot. Brady hates his bath because we have to put his Broviac tubes into a sandwich bag, tape it to his chest, then lay him down with his head hanging over the sink to wash his hair. We can't get his Broviac site or his back surgery site wet. Then we sit him in two inches of water and attempt to clean him as best as we can. WELL!!! Today he went through the whole process without a tear. He and I just talked and I was able to talk him down as he became upset. Then I did his Broviac flush before I got him dressed. We talked about each thing I was doing, and he got to choose which tube I flushed first. Now he is getting so keen to things that he watches to make sure the bubbles from the syringe don't go past his caps. Still no crying! Then after dinner Grandma was all set to do his shot. Grandpa was holding him and I was in the other room. All of a sudden I hear "All done!" He never cried! This certainly isn't commonplace, but maybe he is starting to understand that most of his discomfort is short lived.
Brady and I will be at the hospital at 9:30 for his first ever transfusion. We will be there for 3-4 hours. Still racking my brain as to how to occupy him for that long. He isn't a big tv watcher...I guess I will rely on my arsenal of snacks!!! One of our followers asked about donating blood in Brady's honor...LOVE THAT IDEA! I actually have thought about organizing a blood drive in Brady's name sometime in the future. Blood transfusions are a common part of a cancer patient's treatment.
Still no word from Sloan about a potential appointment. I keep calling our oncologist, but she hasn't heard from them.
As far as physical therapy for Brady, we found out some great news today! Our county Early Intervention Program will pay for Brady's physical therapy even if we go to Rochester for it. We are looking into an outpatient clinic that focuses on children, they even have aquatic therapy. It will mean driving there 2-3 times a week, but we are totally willing to do that! Our insurance would have covered 30 visits, but with a $40 copay. To have this expense out of our mind is a huge blessing!
Please pray for our safe travel tomorrow. Please continue to pray for Brady's healing. Other parents of NB children have been on my mind lately too. There are SO many children suffering with this disease, many of whom have Stage IV with a much more bleak prognosis than Brady. Please say a prayer for those who are suffering far more than we are.