So far today has been a great day. The girls and I were able to meet friends at a splash park (something we really have not done all summer) due in part thanks to Dale who came to hang out with Simon through Ryno Kids Care, thank you so much. It was so great to see the girls having fun with their friends like summers should be yet so hard to leave Simon home due to the heat and fact that there was a water park there. He was saying no mama I come to anderson too. I almost cried walking out. But he had fun and managed to forget us quickly. We also got a call from Kim, I love her and her bubbly voice when she has good news and our counts are stable at 96%. So we are happy and are continuing to drop the cyclosporine level this week with the goal of having it totally gone by end of OCtober so we can see what his new immune system will do. Please pray the donor cells continue to stay stable so we can move on to other issues like lack of sweating. I talked with the NFED (NFED.org) and they are trying to send us out a used cooling vest for simon to use for now to relieve some of the issues associated with not sweating and being outside in 90 degree heat with 100% humidity. So we are waiting for that to arrive. That will be the next step to focus on for simons well being. He also is sprouting a few new shark teeth. I keep hoping they will be big enough to cap or do implants someday. For now he is adorable and happy and healthy. Thank you God. Simon has to have a mole removed in October that has been evolving on his leg and we just want to get it off before it causes us any further worries so pray that is clear and nothing for him.
So we will wind down the summer with dad being off a few days and us trying to do a few fun things with everyone with caution of course and then its the start of full day kindergarden for the girls. BIttersweet feelings there. It will be the first time in the girls lives they will not be together and that is hard for all of us. Well enjoy the weekend. Simon