Quick Update

Alex and I are doing better. Although despite my best negotiating skills it looks as if we will be here through the week. Alex has been fever free since Sunday. His labs have looked better since being back on antiobiotics which all support that he had an infection. The problem is we never found a source. So every one is in agreement that we are treating something we just don't know what. Because of that reason the doctors feel it is too risky to send us home on antibiotics. We started feeds yesterday at 5 cc/hr and will SLOWLY advance them until we reach 45 cc/hr, but I expect we will be home before we reach our goal. His poor little belly is still pretty distended, but he isn't in as much pain. In other medical news he is still sitting right on the verge of a transfusion. He also had a CT scan done this morning to look at his abdomen/reimage his DVT (blood clot) that was found in December. We are supposed to be stopping his lovenox injections in April and they wanted to reimage around that time so we decided to get it done while we are here.
In the meantime, Alex has been busy playing and enjoying music and has created a hide out in our room.

Alex has long loved the rooms that have these big windows sills. He often calls them his playrooms. One of his girls suggested hanging a sheet to make it a hideout. It has made for some good fun. I wish we had thought of it sooner.

I appreciate all the prayers and thoughts that had been sent our way over the last weeks. It means so much to me. I am sorry that I can't always respond to each one of you. I hope you realize how much the messages, texts, cards, calls and emails help me survive day to day.

Ali