Making the decision to have a child – it’s momentous. It is to decide forever to have your heart go walking around outside your body. ~ Elizabeth Stone

Monday, July 6, 2015


First let me say that I am so very grateful to be home. I am grateful for the diligent care that we received at CHLA. I am grateful for my husband and family and the incredible support that we got while at the hospital. I am grateful for all of the prayers and best wishes from everyone around the country. I am eternally grateful.

Elijah came home on Saturday. I think I expected him to adjust quickly and for things at home to normalize. That has not been the case. Elijah is traumatized. He won't allow anyone to look at his chest, let alone touch him. He wants to spend his entire day laying on top of either Dion or myself. He doesn't want to play or laugh. Noah is lost. Noah thought that once Elijah came home everything would go back to the way it was and Noah would have his playmate back. That has not been the case. Elijah has not wanted to play and my poor big boy has felt rejected. I try to explain to Noah that Elijah is still not quite feeling well and that he will play with Noah soon, but I don't think that is enough.

To add to that, Elijah is so incredibly weak. He sits on the floor and can't get up by himself. He is unable to climb on the couch by himself and he is very wobbly. I have to remind myself that he will get stronger. Elijah has spent almost a month in the hospital, two weeks of which he spent confined to a bed. It wasn't until he was fully stable, almost two weeks into our hospital stay, that he took his first walk. He has lost weight and continues to lose weight as he is restricted to a low fat/non fat diet. The poor kid doesn't even sleep peacefully. He wakes up continuously throughout the night.

I suppose this is all normal, but it wasn't what I expected. I expected a period of adjustment, but this is severe. My little guy has suffered more than any child should. And he is traumatized because of it. So again I remind myself that I am grateful, so very, very grateful. But I am also a little bit sad. I little sad for the innocence lost and the pain endured by such a little, sweet boy.

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