Things are rolling along just fine and Daniel is another week in QNQ which again means his CMV is not detectable. We are gladly able to stay home from the hospital on home therapy and will hopefully have just one more week on two a days of IV treatment for the virus to be safe. I think next step is to get to a negative count of copies of the virus before we can safely remove IV treatment alltogether. THEN we will wait for his own immune system to start kicking in.
Today we made a very exciting outing back to his school. We went and visited his grade at school. His group of kids he has mostly been with since Kindergarten, some since preschool. I feel like I have missed them as much as Daniel this past year but seeing as though they are teenagers I am positive they do not feel the same way about me. We went to hear about the Israel trip they will all take next year as a class. We are unsure that Daniel will be able to go. In fact we are pretty sure he will be unable to go, but Daniel wanted to make sure that they all knew that he wants to be involved and as much a part of their class as he can be, whether it be in spirit or not. I am not sure if it is at all possible for Daniel to make this trip but if there is any way I want to make it happen for him. There is disagreement among doctors and many differing opinions and it is just to far away from now to determine Daniel’s health at this time. If it wasn’t for this stupid virus lingering so long or ever happening at all it would have been a very, very different scenario, but we have to just go with what we got and see what we can. It is time to start planning for next year’s school already and there are just too many unknown factors still to forsee. School and travel require immunizations and Daniel can’t start these until he is virus free and has a strong enough immune system to handle his baby shots. As of his transplant in November he had a newborn system and reight now it is still in limbo, so he still has to go through a series of baby and childhood vaccinations before he is ready to handle most typical situations. Hence the isolation, the mask …..I know I have probably explained all of that a thousand times but it probably bares repeating because I am asked it over and over again if he will be starting school in the fall. This ALL DEPENDS ON THIS STINKING VIRUS. So let’s keep fingers crossed for next week being negative for CMV all together and we can move on to a summer of immune boosting and school readiness. Who knows what else may lay ahead after that?!?!!?!? I know right now it is leading to an afternoon nap since the meeting at the school is the earliest morning Daniel and I have had in a long time.
Today we made a very exciting outing back to his school. We went and visited his grade at school. His group of kids he has mostly been with since Kindergarten, some since preschool. I feel like I have missed them as much as Daniel this past year but seeing as though they are teenagers I am positive they do not feel the same way about me. We went to hear about the Israel trip they will all take next year as a class. We are unsure that Daniel will be able to go. In fact we are pretty sure he will be unable to go, but Daniel wanted to make sure that they all knew that he wants to be involved and as much a part of their class as he can be, whether it be in spirit or not. I am not sure if it is at all possible for Daniel to make this trip but if there is any way I want to make it happen for him. There is disagreement among doctors and many differing opinions and it is just to far away from now to determine Daniel’s health at this time. If it wasn’t for this stupid virus lingering so long or ever happening at all it would have been a very, very different scenario, but we have to just go with what we got and see what we can. It is time to start planning for next year’s school already and there are just too many unknown factors still to forsee. School and travel require immunizations and Daniel can’t start these until he is virus free and has a strong enough immune system to handle his baby shots. As of his transplant in November he had a newborn system and reight now it is still in limbo, so he still has to go through a series of baby and childhood vaccinations before he is ready to handle most typical situations. Hence the isolation, the mask …..I know I have probably explained all of that a thousand times but it probably bares repeating because I am asked it over and over again if he will be starting school in the fall. This ALL DEPENDS ON THIS STINKING VIRUS. So let’s keep fingers crossed for next week being negative for CMV all together and we can move on to a summer of immune boosting and school readiness. Who knows what else may lay ahead after that?!?!!?!? I know right now it is leading to an afternoon nap since the meeting at the school is the earliest morning Daniel and I have had in a long time.