Update

Jack has been having a very rough summer. He has had a lot of over heating issues. He was hit or mis for summer program due to the heat and pain. He has been very unstable and waking at night often with tetany episodes.

He starts kindergarten soon. I am very unsure about it. It is full day and I don't think he will be able to handle a whole day. Jack being Jack, he will make it. He will then come home and be a wreak. Then end up napping at 3 or 4 and having a terrible night. I know my son. At his meeting for kindergarten, they wanted to try the full day so I agreed. You got to love it when people think they know what your child can handle better then you. Is it that or that they don't want to modify there teaching schedules. Regardless, we will try and see. I have so many concerns. The chairwomen for the cpse is retiring. Please pray the new one is as good as she was. She always made sure that Jacks preschool rooms had ac units. His kindergarten room is suppose to as well. I have a insider who has told me as of today his classroom still has no ac unit. Over heating for Jack can mean the ER and can be very dangerous. I hope this matter is taken care of. I will have to be the advocate for my son as I always am. He may look okay one minute but in seconds he can go from good to the ER.
I am also concerned about the change and the noticing of being different that he will have to go through this year. There is just no way around it due to his heath and safety.

Please keep Jacks start of kindergarten in your prayers. There are so many things to be concerned about. I have to pray and put Jack in Gods hands. Pray that God puts caring understanding people in his path. It is hard enough to send your child off to school. It is a whole other ball game to send your ill child with a rare condition off to school. It is hard when many do not understand or know of his disease. It is hard when Jack can appear fairly normal one minute and crash in the next. I just have to remember that even when I am not by Jack's side God is.