I can’t say I am happy or upset, I am just at least resolved with the fact that we have somewhat of a plan. Somewhat. Today while we waited for Daniel’s last physical therapy appointment to start (we wait in the special BMT isolation waiting room) our BMT nurse came in to tell us the magic CMV number we were waiting for to determine if Daniel was going to be readmitted tomorrow to the hospital or if he would get to wait until Monday. She unlocked the door (believe it or not, we are locked in and only certain people with keys can unlock the isolation room to enter) came in and gave Daniel a suspicious look. She then said with a sideways look “Daniel, who did you pay off to throw the results?” Of course I was confused. She explained that the test which is only done twice a week was unreadable. Something went wrong and hey will have to wait until the next read date to be able to try again….hmmm, very curious, how that happened to Daniel’s advantage. No, actually I am so okay with this turn of events. Now I at least know that things will be how they are through the weekend while I go to Toronto and Daniel will have a good time here at home with Rob without me. G-d knows he will have enough of me once we are back together again 24/7 in the hospital starting Monday. Just in case today I spent time packing for the hospital so we are ready to go Monday morning. And I don’t need to worry about this over the weekend either. I got a little time today to go get a mani/pedi which I haven’t done in a very long time and am almost ready to go and have my weekend away. A nice treat was coming home and making lunch for the two boys together (Matthew didn’t have school today). My girlfriend asked if I was going to be able to enjoy myself this weekend and I said that I was determined to. I said if not for me then for my sister. My sister deserves to have her family come together with friends and to have a beautiful celebration of life. I will hope to not be overwhelmed with anyone focusing any attention on me or Daniel and focusing all energy on my niece. I can’t say I will worry about Daniel, I know he knows how to take care of himself and his own needs. He doesn’t but he can, and he will because he will have to and Rob will make sure he does. Everything is laid out and a schedule if made. I just need to remember to make a couple (dozen) reminder calls to keep him on track. As far as his eating restrictions and social allowances, he knows his limitations and the consequences he can cause to himself. He is very good about what he can and can’t do and will surely keep Rob educated on them. He knows what he can and can’t do. What he can and can’t eat and where he can and can’t go, how far he pushes will be interesting to see. My guess is he will sit and play his video games all week. Finish watching Game of Thrones and the eating thing is my only question. When I get home we will play some catch up and deal with what needs cleaning up, but we will be moving right back into the hospital and we will go from there.
This is a picture of Daniel doing a running test at his last day of physical therapy. He has been going twice a week for months. Knowing how hard physical activity still is for him as he works on reconditioning and that it is estimated that he is probably still only at about 30-40% of his origional physical fitness level, I think he is doing great. It is hard to watch him struggle so much to just balance or support his own weight (wait, what is my excuse not able to do these things), but when I think of how far he has come in his relationship with Kristin his physical therapist that is really the biggest stride he may have made. For those of you that have followed all these months you may remember that Daniel hasn't always lets say 'liked' Kristen. In fact, he used to call her the Devil's spawn and worse. I know this was only because how hard PT has always been, but it just goes to show that the harder you work the sweeter the reward and I know Kristin feels very rewarded from the relationship they built together. I know Daniel has even grown to like Kristin, even though he still may not enjoy PT time (because it is so difficult) I know it is not because of Kristin. That girl has one thick skin and her persistance paid off in spades. Thank you Kristin.
This is a picture of Daniel doing a running test at his last day of physical therapy. He has been going twice a week for months. Knowing how hard physical activity still is for him as he works on reconditioning and that it is estimated that he is probably still only at about 30-40% of his origional physical fitness level, I think he is doing great. It is hard to watch him struggle so much to just balance or support his own weight (wait, what is my excuse not able to do these things), but when I think of how far he has come in his relationship with Kristin his physical therapist that is really the biggest stride he may have made. For those of you that have followed all these months you may remember that Daniel hasn't always lets say 'liked' Kristen. In fact, he used to call her the Devil's spawn and worse. I know this was only because how hard PT has always been, but it just goes to show that the harder you work the sweeter the reward and I know Kristin feels very rewarded from the relationship they built together. I know Daniel has even grown to like Kristin, even though he still may not enjoy PT time (because it is so difficult) I know it is not because of Kristin. That girl has one thick skin and her persistance paid off in spades. Thank you Kristin.