It has been a bit since I have posted anything. I have started working and it is great to be out of the house. I am too busy at work to think about the world of problems, therapies, medications, ect. I miss my sweet little girl while I am gone, but she is well taken care of and I know this is what will make me a better mom for now.
Molly has a g-button now, it is already yucky and we are on ABX to try to get it back in good shape. She still is not taking as much as they would like, but it is way more than she was and she is gaining a bit. What is most important is that she is happy. It is all that we really care about anymore.
I have started to notice that her hips are starting to click. I am guessing that her hips are starting to come out of their socket. We were told that this would happen and were referred to Scottish Rite. I got the call this morning that they will not see her. She is basically too bad for them and they have limited resources and don't want to waste them on a child like Molly. They want to work on kids that have a better outlook. So now we will be looking for an ortho doc that is not with them and hope that they can help.
On a happy note, Molly is doing well in Therapy. She is sitting up more and has some head control. She is still having seizures, but no bad ones this week.
Brighton is doing great also. He is almost done with school and then I will have a middle schooler!