I wish you all could see Macy right now playing as happy as can be in her exersaucer.....not a care in the world. And that's how it should be for a child. I have been thinking, and I am going to try to make an effort to only do research, and think about Macy's disease 1 day a week (Monday's). I don't want to become completely consumed right now which could be easy to do. I want to be happy (as much as I can be) and just spend time with her laughing and playing. I also have too many other things to focus on (healthwise) with her right now. Other things caused by her disease like her kidney issues, planning her thumb surgeries, her eating issues, and of course fighting the insurance company about things they are supposed to cover but don't want to (fun!).
I will probably update this blog on Monday's and when she has appointments. The other days I just want to try to forget about it for now. I won't be able to completely because it is always there now hovering around in my brain; even when I am asleep it is on my mind, but I am still going to try. I might not always follow my 1 day a week rule but I will still give it a shot. I will still have good days and bad days but hopefully I can put off my bad days for Monday's.
Here is Macy rolling around on the floor the other night in her Sponge Bob PJ's! She is always so happy even with that uncomfortable feeding tube taped to her face and going down her nose. FYI: I am taking her tube out tonight and am going to give her a few days without it to see how she does.