Things are rolling along on a day to day basis. This morning I drew Daniel’s blood and we have bets going as to what his viral count will come in at tomoroow night. This is how bored we are getting. Let me describe our situation. The weather outside is absolutely gorgeous but even though Daniel has never been much of a summer heat type of kid, this summer is bound to be worse. He needs to keep his mask on at all times outside of the house and he can’t stand this because he says it is hard to breathe in it. Plus the sun is not good for him. He is at a heightened risk for secondary skin cancer now as if the pastey white skin wasn’t enough of a problem his whole life. He needs to keep a hat on too all the time which doesn’t help the heat factor. Still we try to get out and walk around the block once or twice aday and get outside in the shade and kick or throw a ball around. He is trying to increase his difficulty level on the elliptical machine which is hard work for him. Hopefully now going to physical ther and apy twice a week will start helping him recondition himself. Ok so all this physical activity accounts for 10 minutes a day, what about the rest of it. ARGH!!!! I know we are supposed to limit our children’s screen time but omg, I am finding this impossible these days. With his new school routine he is doing 5 hours a week wih his teacher and THAT IS IT. Nothing else, no other extra curricular time. He is managing to get all of his work done in this time and not needing to do homework and yes I am stopping nagging him. I am trying to encourage him to try and watch some new series or movies but he is very stuck playing his video games. Between meds and trying to eat and clean and exercise and trying to get him to take a shower which takes forever, a craft seems out of the question and baking isn’t up his alley anymore since he has no interest in eating. It is all very frustrating more than anything all comes down to me sounding like I am nagging him a lot. Oh what a surprise. The good news is he feels good, even though the Gancyclovir has caught up with his system and he can barely keep his ANC over 100. He now needs to get GCSF every day. This will help boost his ANC or at least hold it. Again this is a circumstance of the CMV which we will hope to whip in the next weeks for good. We are so close. Once this virus hits the road we are back in business to building back his immune system. When they told me his ANC today, I could not believe it. He looks and feels so good and all the rest of his numbers are great. You would ecpext him to be tired and weak, but no such thing. He is 100% full of energy and attitude. Which is why we are just homebound and bored. We have turned to bored games (yes I know I spelled that wrong). We have a 1000 piece Chihuly puzzle going that is making me crossseyed, and we are trying to make due. If anyone has any bright ideas, please send them our way, we are desperate.