We had another sleepless night. Ash doesn't rest unless I am holding her. She will not allow me to lay her down at all. She fusses and cries, "My maaama, maaaama" unless I am holding her. I really don't mind except for the fact that I can't seem to get a shower. I guess the fussiness is just part of it. They tell me the high dose of steroid is making her so grumpy and miserable. I just keep telling her that its a good thing I love her so much or she would have to lay there and cry. I don't think she understands what I am saying.
Morning rounds didn't include too much. Outside of the cancer Ashley looks really great. Her organs are functioning, she is tolerating her feeds, she is infection free. She would be out of here if the tumors hadn't shown up. The main concern while she goes through her chemo is keeping her infection free. We are keeping her as isolated as possible and limiting the number of people who have access to her. I am now taking vital signs so that the techs aren't an extra set of hands touching her. The docs don't even enter her room in the mornings in an attempt to keep more germs from being introduced to her. I am making a poster for her door requesting that she have no visitors and that all who must enter are gowned, gloved, and masked. We just can't risk her picking up anything right now. My hope and prayer would be that as we take her immunity all the way down that she stay well and not be exposed to any bugs, but I realize it would have to be an act of God to keep her from getting sick during this time. Its my prayer, but its not my expectation.
The good thing about all of this is the time I get to spend rocking and cuddling my little one. She is so beautiful and I spend hours and hours just staring at her little face and all of its features. I hold her hands and marvel at how amazing God is. The intricate details of her person amaze me daily. He has created such a special little girl and He has allowed me to be her mommy. I know I am blessed. I will not complain. I am honored to be in the place that I am. She is so worth all of this and I pray that she is given the chance to come home and grow up in our home with our family. I am learning many, many things about myself during this time and I believe He had to reveal these things to me in order for me to be the mommy He needs me to be for her.
Dave called and told me how excited my Allie was about her birthday today. He took a cookie cake to her class this morning and had flowers delivered to her from me(purple of course!). She was so happy. He is going back to the school to have lunch with her on her special day. I told him to try and be cool and not dorky and he said, " I don't have to try and be cool. I just am." I sure hope she thinks so. Tonight is the big date and I bought her a new outfit complete with matching shoes, purse, and jewelry. I can't wait to see the pictures of her in it. I know they will have a great time just the two of them. She sure loves her daddy and it blesses me to know they will be spending this very special day together. Blake was just as excited about Al's birthday arriving as she was. He is the most incredible big brother a girl could ever have. He is just so happy she gets to celebrate a day that makes her feel so special. He spent his own money on her gift and he was so proud to buy her something she really wanted. I love that kid. I guess he will be hanging with the grandparents since none of them were invited to go on the date night.
As sad as I am about missing her special day, my heart is blessed by those around her who want to make it extra special. We have an amazing extended family and I know I can count on them to put smiles on her face and joy in her heart. 9 years ago today God blessed me with my oldest daughter and my heart has never been the same. It truly is a good life that I am living.
Thank you for loving my Ashley today. Those of you who have hung on and continue to travel this journey with us have a permanent place in our hearts. We love you for caring so much. I hope to bring her home someday and I hope you all have the opportunity to watch her grow up to do big things for the One who gave her life. Take care today and may He bless you. Trish