S l o w l y, but surely, she is getting better. No more pain killers. She’s still having her mystery pain at night. Thankfully, we are headed to GI tomorrow. I’m hoping she’ll have some ideas for us.
We continue to struggle with nursing coverage. Ugh. Very tiring, physically and emotionally.
It’s funny the things you think about in the middle of the night. Just some random thoughts:
Bella really likes light touch right now. To give some back ground on that. For the first year after she was discharged from the hospital, if you touched Bella it had to be with firm touch – no stroking, no light touch. It totally set her on edge and she would freak out. We did intense sensory work for ever! Now at three and a half years old, she wants light touch. She wants to be stroked. She wants you to brush your fingernails up and down her skin. When she wakes up in the middle of the night with her mystery pain, she grabs my hands and I start to stroke her skin. While I’m sad she is in so much pain, I see how far she has come. For that I am grateful!
Bella is starting to sing. She has this little breathy low voice. (The low part surprised me!) I have been trying to catch it on video – hopefully this week! I love to sing. Our family is always singing. So this is another one of those things we didn’t think she’d be able to do with her trach that she is doing! Wahoo baby!
Poor Bella is so easily over stimulated! It might just be her personality. She is a quiet little person, but she is also ornery and mischievous. :) She has spent so much time in her room with nurses that maybe she just isn’t used to the noise. But she lives in this house – this house with nine people, plus nurses, therapists, RTs, delivery people, the kid’s friends, and constant activity. When she is with the family, and we all start laughing, she panics and starts crying. I’m not sure if it’s something she’ll ever get over or not. Yesterday we went as a family to see Brave and left her at home with the nurse. There is no way she could go to a crowded theater with laughing and talking and then add in the movie itself. Will she always be like this? Don’t know. We will just have to see.
Love ya babe!