Daniel has had several good days with nothing very interesting to report. This is very good news. He even had a visit with his grandparents. Wait! Both Grandparents. My parents were in town for the weekend and then yesterday after a very, very long time not seeing Daniel, Rob’s parents came over to visit. We sat outside in the beautiful weather on the back deck and spent a short time just chatting. Daniel has been acting kind of strange around the idea of them visiting for a long time because he is so very afraid of getting sick. Rob's mom wants to get her hands on Daniel and hug him so bad it hurts but we keep enforcing the no contact rule. He is so serious about germs it is all consuming. It has so greatly affected the way we approach all situations. It makes everything unusually unnatural. It makes something as natural as visiting with the people we used to see almost daily impossible for so long that it is now uneasy.
Funny how this didn’t happen with his cousins when they came over last night for a short visit. Rikki is back from college for the week and hasn’t seen Daniel since before she left. Maybe before Daniel was sick but these four have spent more time than I can count together growing up. We have been to the other side of the world with them and miss spending time with them greatly. Daniel and Caleb don’t miss a beat texting and playing online games together daily but haven’t seen eachother. Time melted away when these four got together again. I sat back and watched them with tears in my eyes and marveled at how they are all growing up. Grateful that they will all get the chance too.
Again, it is another one of those sacrifices we have made for the greater good of health. We have let very little slide and almost no exceptions to rules have been made and for this I believe we have done so well. I am proud of us for this.
Once again Daniel’s CMV counts are down. This past week they dropped to 4,217 which is about halfish of what they were. This means a couple more weeks to Q not Q or Qualitative not Quantitative. This means that levels are there to count in a blood test (under 1000) but not really enough to count or quantify. At this point Daniel will go to a maintenance level of meds for his virus and I will only have to administer his antiviral IV once a day (WOOT WOOT) plus hopefully we can stop his weekly antiviral in fusions. As soon as we can get this virus down and these antivirals off his queue then we hope his bone marrow will have a chance to start getting stronger on it’s own and can start rebuilding his immune system and we can get this show on the road.
Today, Daniel started seeing his arch nemesis once again. Kristin the Physical Therapist. Daniel will meet with Kristin twice a week to begin reconditioning. As great as Daniel looks it is astounding how out of shape he is. And when I mean out of shape I mean more than just hi s normal laziness. He isn’t just lazy. He has no muscle mass or strength, and no endurance. The mask that he has to wear for the entire year makes it terrible for him to go our=tside in the fresh air. He hates it and I don’t blame him. But the truth is he needs someone else to get him to exercise. He is barely able to complete walking around the block without breathing heavily and he is super slow on the elliptical in the house. He is not doing his stretches at home so therefore he needs to go back to the hospital for therapy and today proves that he is starting from ground zero and that it is hard. He has a long way to go to reconditioning but he needs to start somewhere and today was the day. He can’t go to a regular gym or a regular therapy office yet because that is too public yet, so as of now he is going to have to be back to Kristin. It is not like it used to be and he doesn’t call her the Devil’s Spawn anymore…at least to her face or that I know of. I hope that by month’s end we are in a routine and he is liking the feeling of getting stronger.
Funny how this didn’t happen with his cousins when they came over last night for a short visit. Rikki is back from college for the week and hasn’t seen Daniel since before she left. Maybe before Daniel was sick but these four have spent more time than I can count together growing up. We have been to the other side of the world with them and miss spending time with them greatly. Daniel and Caleb don’t miss a beat texting and playing online games together daily but haven’t seen eachother. Time melted away when these four got together again. I sat back and watched them with tears in my eyes and marveled at how they are all growing up. Grateful that they will all get the chance too.
Again, it is another one of those sacrifices we have made for the greater good of health. We have let very little slide and almost no exceptions to rules have been made and for this I believe we have done so well. I am proud of us for this.
Once again Daniel’s CMV counts are down. This past week they dropped to 4,217 which is about halfish of what they were. This means a couple more weeks to Q not Q or Qualitative not Quantitative. This means that levels are there to count in a blood test (under 1000) but not really enough to count or quantify. At this point Daniel will go to a maintenance level of meds for his virus and I will only have to administer his antiviral IV once a day (WOOT WOOT) plus hopefully we can stop his weekly antiviral in fusions. As soon as we can get this virus down and these antivirals off his queue then we hope his bone marrow will have a chance to start getting stronger on it’s own and can start rebuilding his immune system and we can get this show on the road.
Today, Daniel started seeing his arch nemesis once again. Kristin the Physical Therapist. Daniel will meet with Kristin twice a week to begin reconditioning. As great as Daniel looks it is astounding how out of shape he is. And when I mean out of shape I mean more than just hi s normal laziness. He isn’t just lazy. He has no muscle mass or strength, and no endurance. The mask that he has to wear for the entire year makes it terrible for him to go our=tside in the fresh air. He hates it and I don’t blame him. But the truth is he needs someone else to get him to exercise. He is barely able to complete walking around the block without breathing heavily and he is super slow on the elliptical in the house. He is not doing his stretches at home so therefore he needs to go back to the hospital for therapy and today proves that he is starting from ground zero and that it is hard. He has a long way to go to reconditioning but he needs to start somewhere and today was the day. He can’t go to a regular gym or a regular therapy office yet because that is too public yet, so as of now he is going to have to be back to Kristin. It is not like it used to be and he doesn’t call her the Devil’s Spawn anymore…at least to her face or that I know of. I hope that by month’s end we are in a routine and he is liking the feeling of getting stronger.