Her newest prescription: being held 30 minutes 3 times a day.
Tomorrow she has a stealth MRI to map out Friday's surgery. There is no way to know what will happen after surgery, so we just have to wait and see.
Last night, I drove home by myself for the first time. I haven't been alone since Scarlett was first hospitalized on December 17. I have been too scared to be alone with my thoughts. Being alone means I am not distracted by conversation, and my brain takes off into the "what ifs". The long drive (about an hour in traffic last night) is too much for me sometimes, but it is worth it to go home and rest. The hospital is not at all restful. Even if I sleep, I don't relax.
I tried to go to the grocery store to find something to eat before I got home. I walked around the entire store, too distracted by the possibility of running into someone I knew. I have been so isolated I haven't had to really talk about Scarlett to anyone who isn't intimately familiar with her condition. Even casually at the hospital cafeteria, when someone asks "How are you?" and I am at a loss as to how to answer. It's too complicated to explain everything, so I just lie and say I'm doing well. Facing the looks of sympathy and consolation from close friends is much more difficult.
I left the store with nothing, and stopped for fast food instead...I'm eating like a kid of vacation lately, not taking the time to make healthy choices, but eating whatever sounds best at the moment. It's bad for my milk supply, which I am determined to keep up in some capacity. It is a huge struggle to pump regularly in the hospital, but I keep at it because I know breast milk is best for her, especially as her immune system is weakened and her little brain has so much work to do. We keep storing it in the freezer so that when she's ready, there is plenty. I don't foresee nursing working too well, though the occupational therapist wants me to try. It was always a struggle for us, so I don't know if Scarlett will have the patience to work at it.
I would like to THANK YOU to everyone who has sent Scarlett or us a gift. We have gotten some lovely gifts that are greatly appreciated. I don't know always who they are from, but I wanted to say how wonderful it is to receive them. We are so grateful to all the love and support being sent our way. We are photographing everything for Scarlett to see one day how loved she was throughout her treatment.