I was an unexpected basketcase today after we got Paxton's DOC band fitted. More on that later. First, let me say that Pax did really awesome. He has tolerated the band extremely well so far. He seems to fall asleep ok in it, and it is not causing skin irritation as of yet. Staying asleep is another story, but I'm sure that will improve. I have to take it off every few hours to check his skin until Thursday at which point he will wear it 23 hours per day. The one hour off is for bath time, cleaning the band time, and lots of smooching.
Everett was a perfect big brother today. He had an innate sense to protect and care for Paxton more than usual today. It was remarkable. You can see this love in the pictures below. During his appointment, Everett put his arm around Paxton in a protective way, and once we were home, he spent extra time caring for him. I was really amazed, but not necessarily surprised by this brotherly connection because I feel like I share this intimate bond with my own sister as well.
Also, let me say "Peaceful Pax" has been amazing through this process. Through several evaluations, measurements, pictures, putting a sock over his head for a 3D image, etc...he hasn't fussed once. Of course, we did not go with the facility that would have used plaster to make an image. I'm not confident that he would have remained calm through that.
Now for the basketcase component. *sigh* A few days ago I was really excited about getting this band, and I still am. It was a hard decision to make, but once made it brought relief. We are glad to have this technology available to help reshape his head and prevent any potential future problems. We are extremely lucky to have this small and fixable problem when so many people have much larger problems. We are also EXTREMELY (seriously, EXTREMELY) lucky to be doing the majority of treatment before it gets hot. It started being over 100 degrees everyday in May last year. Sweat and overheating are big problems in these things, and we will have to stay inside if it gets too hot. Despite all of these positives, I broke down when I felt the cold, hard plastic in that perfect space between my shoulder, neck, and face where his soft, sweet-smelling head used to be. He also tends to look down a lot with it on, and the band comes really close to his eyes, so I felt really sad to not be able to see his face. I'm looking forward to getting a few more days under my belt and getting more comfortable with it in general. Oh and stay tuned for the pictures of it decorated in a week or two! That should be fun. :)