October 1st evening

Well, we made it. We made it through one day without horrible, shocking, make-us-break-down-and-cry news. I just sang Emerson her good night songs and I am waiting for the chaplain to bless her good night before trying to sleep.

I cannot believe we have been here one week. I get sick to my stomach as I am haunted by the memory of last Saturday and Sunday. We had no idea what a sick little girl we had; no idea she would have to fight for her life at such a young age; no idea that we could lose her and no idea- and still no idea- what caused it. But we also had no idea how very lucky we are. We are so lucky to have her, and if we are so lucky to be able to bring our little girl home, I will never take for granted again how lucky we are- even in the middle of the night when she won't sleep, and we are sick and she is pulling my hair and we have work in the morning. Even when I wonder how I am going to keep my eyes open because she refuses to slow down, let alone nap. Even if she ever decides to start throwing fits, or throwing food or stealing cars or whatever, I will smother her and spoil her whenever I get the chance. I am glad to hear that many people who have emailed have said that is exactly what they are doing: enjoying, appreciating, loving their kids right now because that is what I would be doing if I could.

We also didn't know how tremendously lucky we are to have such amazing friends and family and community. I am so touched by how loved and supported Emmy has been. I don't know how I am ever going to be able to show our gratitude.

Emerson has not had a seizure in 24 hours. Her respiration has shown great improvement and she has remained strong even as we take her off of more and more fluids. I am most excited, though, about the activity we see on her E.G.G.- it almost looks normal. No promises and lots of waiting to see how accurate it is, but encouraging. Also, we have been reading to Emmy and I did not realize that as I read with one hand, I held hers with the other and played with it quite a bit. Now the swelling in that hand is practically gone. We almost have a hand back! So I need to keep working on the other and the legs where I can,too. No news about the urine output. We'll know more about the kidneys in the morning.

As I try to calm down and sleep next to Emmy tonight, I am hopeful for a good day tomorrow and grateful for the good day today. I am grateful that she has shown so many improvements and grateful for the positive energy and thoughts and prayers and support that helped all of us make such strides over this past week.