I know a lot of you have been worried about both Alex and I and I am sorry I haven't updated.
I'll start with Alex....Today he has been fever free all day. Praise God! He is still pretty puny, but he is talking a little more and his personality is back. I am so glad to see his little smile again. We will still be here a little while. We need to get him off oxygen, restart feeds, try a new seizure med and get his strength back before we can come home. I am thinking the end of next week.
Emotionally he is doing okay as well. Yesterday morning, Dr. Koenig, Stacy (child life), Glenda (chaplain) and me all came to talk to Alex together. I told him that Samuel had gone to heaven to be with Jesus. I asked him if he understood and he said that Samuel was playing and eating ice cream. Dr. Koenig talked to him about their differences adn why he doesn't have to worry. Later he told me that he didn't think Samuel needed oxygen anymore. I told him he also didn't need his port or tubes. Alex told me when he goes to heaven he still wants his tubes. Today he is asking more questions heaven and processing through his thoughts. Glenda and I have both talked to him and he seems pretty good. He also did some art for Lauren.
I am doing okay as well. I am surrounded by love and support. This is a great place for me to be. The staff here is like family to us. We have laughed and grieved together. We have shared hugs and tears. We have told stories about Samuel and comforted each other. I have spoken to Missy and her family and been a go between for many people. I appreciate all the messages, emails, texts, calls, etc. Please forgive me for not returning them all. I am emotionally exhausted.
Please continue to keep the Knights in your prayers. Lauren could especially use some extra thoughts. We all miss Samuel, but are so happy he is finally free of all his tubes and hurt, free to play and eat all day.