Its been awhile since I've

Its been awhile since I've written. There is not much new to report. We are taking things day by day and finding that is very hard to do. Its frustrating waiting for Simons eating to improve and waiting for his skin to clear up again. He has not had a skin rash in months and months and the last two weeks I've watched him itch and scratch and blister up with red, what almost looks like hives. Its disheartening to us to think the cells he does have of Marrianas are not enough. We go through the days, laugh, try to have fun but you feel that underlying stress of not knowing if you son has enough immune system to fight off the big infection. Its a bit scary. We've switched some meds around, are trying to increase calories in Simons G-tube feedings and knowing thereis no end in site for that and no view of seeing him enjoy food for a long time coming. Its hard to think I'll be getting up for the next year or more adding formula to a bag to keep our son growing. But you do what you have to do. Okay on a lighter note. We had a very nice 4th of July. The girls turned 4 and the weather was awesome. We really just enjoyed the day with parades and bbq, a little swimming and of course, the fireworks that are put on just for the girls. Even Simon sat and stared up at the dazzling sky. It just felt good to be together. Keep Simon in your prayers. He still needs his miracle. God Bless you all. I have some great photos I will be posting when I have the time and energy to do it so check back for that and a cell dance this weekend wouldn't hurt, we get vntrs on monday. Ciao.