Wow. What a crazy busy, laughter filled weekend. The kids made so many memories. Randy and I got some time to sit back and enjoy the moment without rushing from one medical appointment to another. We got to just sit with friends enjoy the moment and watch the kids. And it was amazing. Addyson had so many moments of laughter and fun.
Today we had to do another bag change. She doesn’t like them but she is getting better with each one. Today she took 90% of the old wafer off by herself. Then she helped me clean the area before putting the new wafer on.
Because of all the swimming we had to change her bag Friday night, Sunday morning and tonight. I am confident though that this one should be good till at least Wednesday evening. Maybe even Thursday.
We have decided on a bag for her and I’m working with her surgical team to get the supplies ordered.
I appreciate the moms who helped us this weekend. Those who helped with bag changes, skinned knees, upset stomachs and playing/talking to Ethen if we were busy dealing with addyson. It’s great when everyone just jumps in to help. I love that we have so many families who don’t even pay attention to addysons ostomy and when she wants to snuggle they let her with open arms. It’s just such a great feeling.
I felt bad tonight changing her bag as she was crying that it burned. She says the barrier prep stings really bad. She then requested the heat pack. I will ask the team about the burning. But besides that…all weekend she never complained about her stomach. In the moment of her change it’s so easy to get lost in this isn’t fair or why us but then she gets up and makes feel better cards for other kids. She has a huge heart. She has grit. She has a kind spirit. She really wants others to feel better.
Beaming with hope 