A lazy day

Wow, Ash and I have basically slept the day away. What a lazy day for the two of us. We must have been tired. She has managed to sleep all afternoon even while the nurses and therapists came in to do their thing. Before falling asleep this afternoon we watched a Blues Clues for the first time since she became so sick again. It was so sweet to watch her wave her little hands to the music and shake her head yes or no when they would ask questions. Ashley has decided that the ventilator is just part of life and has actually done very well with it today. She learned to play around it with her toys and she can even play patty cake over the top of the tube. The one thing she is struggling with is trying to teeth on things as she is growing her new teeth. The tube just takes up to much room in her mouth, but she keeps trying.

Ashley looks so beautiful today. It just doesn't even look like she is sick. She has made a lot of progress on her vent settings throughout the day, but the sad part is that she will start all over on them tomorrow. How frustrating it is to watch her take one step forward and the two steps back. I am sure He is teaching me patience as I wait for her to recover. I am praying that things will go well for her tomorrow. They still do not have the right size "button" to fit her tiny body so they have decided to try and dialate the opening in her side and stomach to make it fit. I know this will make her uncomfortable so I am hoping she will be sedated well after her procedure. I am nervous about the procedure because of the difficulty of her anatomy. The good thing is that the doctor won't be surprised this time. He has a good idea of what it looks like and what needs to be done to get through it from the last attempt.

I have really enjoyed resting in Ashley's room with my chair pulled up next to her bed as we listened and sang Christmas carols today. I am very excited about the upcoming holiday because we will have an entire week here together as a family. I have no idea if we will be in the PICU or up on the floor, but the most important thing is that we will be together for the first time since the week of her transplant. The children have both decided to spend Thanksgiving with their cousins and aunts and uncles in Oklahoma and I know they will have a great time. This is probably the best decision. It is not much fun just staring at the walls in Ash's room. We try to make the best of it, but when you are 8 and 11 it gets pretty boring really quick. The kids have never complained about it, but I know it is not easy to be here.

Today I have been blessed with the opportunity to be Ashley's mom for another day. I have enjoyed watching her play to the best of her ability, and I have gained strength from her determination to have a good time. Regaurdless of Ash's situation He has given her a sweet spirit and an inner strength that I admire. I hope to have these qualities rub off on me! There are many, many days when I just don't feel like being sweet and I sure don't feel strong. She is inspires me to be a better mommy and a better person every day of her life. I will forever be grateful for being given this job. To be her mom is the best!