Waiting on results

We got to get the little Empress out in the wagon today. She had been asking all morning!

We have been given the thumbs up with neurology so now it is just up to her heart doctors to say when we can go. We have 2 more IV's gone as of today. So down to just the one in her right hand. She had lots of awake time today! She is very on edge, Ivy is usually the star patient. most cooperative little patient you can ever imagine! Well today she pitched a hissy fit like we have NEVER seen. She was pounding her tiny fist and shouting at the top of her munchkin lungs, "I NOT GONNA LAY DOWN FOR MY ECHO! I DONT WANT ECHO! I NOT! I NOT DO IT MOMMY!!!!!!" She hates tape. She has had her skin pulled way too many times and she is terrified of getting tape taken off. Well, she had an IV on her groin and another in her foot and that was a lot of tape to come off. She'd had enough and when the echo tech came, she was DONE! It made me feel so relieved to see her fight come out for reasons other than getting through near death experiences. Seeing her use it to protect herself, to own up, to be heard, made me proud. I want her to be herself. I want her to know that she has every right to tell these people she is NOT HAPPY about this! Tonight is going much better. No tests left to do, no tape to pull, just hanging with her daddy tonight while mommy is at the hotel with the other 2. Waiting on pins and needles for the results from todays Echo.