We went to Children’s Memorial today to meet Dr. Burton. When we first got Livia’s diagnosis, the MPS society had recommended we see her. After the Disney conference, Jake and I decided that we needed to go see her because we are Livia’s only advocates and we have to do what is best for her. We need to be on a course. Dr. Burton has mapped out a course that we feel good about. We didn’t really learn anything new, but we do feel like we are a part of a team that is going to get things done.
I can’t help but be really sad right now. I had such a positive attitude this morning about our appointment. I had a feeling that we were going to go see her and she was going to give us something new or by some miracle tell us that Livia was OK and some horrible mistake was made. I now think about that feeling and realize how silly I was to think that way. I’m not in denial about this diagnosis, its just that I want so bad to take it away.
Livia is such a trooper. Our apt. was at 1pm, nap time. She was a little grumpy with Dr. Burton, she just didn’t want her belly poked. Dr. Burton kept telling Livia how pretty she was and that she LOVED her hair. I really like Dr. Burton. She was very positive and had a great southern accent! She answered our questions and mapped out a course that Jake and I feel good about.
Finley is also a little trooper. She was so good and slept comfortably in her daddy’s arms while we talked with the Dr. I hope one day she knows just how important she is in all of this. We are so lucky to have her, she really is a miracle. I have to figure out how to keep life “normal” for her. I have to make sure she feels special and important. We are going to have so many issues to deal with with Liv. I pray that Finley is patient. I pray that she is happy and loves her life.
It’s not often that I want the day to end. My grandma once said to me that she thought the days were long for me. They aren’t. The days go by so fast, and I often dread the night and dread going to sleep. Not today. I’m ready for tomorrow to be here. I’m ready to start a new day with the hope that I can find it within myself that positive person I desire to be. I need to get on that treadmill and run this pain away. I hope tomorrow I find inspiration and strength. I take it just one day at a time, tomorrow will be a good day…………that is my goal.