I think I forgot to write a blog while we have been at the hospital. Time is flying and going so well I haven’t had much time for sitting and writing. Even though there has been nothing eventful, it is always busy, busy, busy. Whether it be cleaning up or getting food or doing and activity I am always running doing something. We also try to walk as much as possible. Most importantly Tuesday night we got Daniel’s test results back letting us know that the new treatment drug Foscarnate is working and Daniel is now NEGATIVE for CMV (virus). This has been the goal all along, and gladly he has had no negative side effects from the treatment. His kidneys are strong and flushing it all through. This was our greatest fear which we have bypassed thank G-d. He is now moved from three a day treatments to twice a day treatments. And if we get another negative result next Tuesday we should be able to go home with once a day treatments. I tried to bribe the docs to let me take him home for twice a day treatments but it was a no go. They are still needing to monitor his levels of electolytes and every imaginable everything many times a day. His potassium and calcium and magnesium is fluctuating all day and they adjust for it as often.
Yesterday was a great day and he had lots of extra time (we have lots of this) for a visit from best buddy Gilly. They actually worked on their summer math packet together which was so cute, and then disappeared to play their favorite computer game in the family area. They are both a little obsessed with this game they play all the time but have never had a chance to actually play it physically in the same room.
Another highlight was a find from Target. One thing on the dreaded restriction list is Slurpees. One of the things Daniels misses most is Slurpees. It is because of the machine and the germs that accumulate in them. But I found a cup that makes virtually the same thing. Score one for mom!!! The only downside is the cup needs to freeze first and refreeze in between servings. So no big gulp size servings, but nevertheless it is a yummy treat a few times a day. It keeps me running back and forth to the freezer in the family room at the other end of the hall that is for sure. I get my exercise steps in and he is a happy boy with brain freeze. WIN-WIN!
Yesterday was a great day and he had lots of extra time (we have lots of this) for a visit from best buddy Gilly. They actually worked on their summer math packet together which was so cute, and then disappeared to play their favorite computer game in the family area. They are both a little obsessed with this game they play all the time but have never had a chance to actually play it physically in the same room.
Another highlight was a find from Target. One thing on the dreaded restriction list is Slurpees. One of the things Daniels misses most is Slurpees. It is because of the machine and the germs that accumulate in them. But I found a cup that makes virtually the same thing. Score one for mom!!! The only downside is the cup needs to freeze first and refreeze in between servings. So no big gulp size servings, but nevertheless it is a yummy treat a few times a day. It keeps me running back and forth to the freezer in the family room at the other end of the hall that is for sure. I get my exercise steps in and he is a happy boy with brain freeze. WIN-WIN!