January 6, 2011

We have had waves of up and downs in Grayson's condition. We saw the first signs of engraftment over the last two days and his white cell counts seem to be recovering which is very exciting. His mucositis seems to be getting better which we can tell because he is starting to be vocal again and put things (toys and/or medical supplies) in his mouth. He is sitting up and though he is not moving much he is starting to interact with us again. Smiles here and there, pointing to things, saying dada and mama. We are thrilled to see this and even though we are not seeing it consistently yet, it is such a joy to see him return to his former self every once in a while. He still sleeps for most of the day and night and is still having a lot of nausea when he is awake but all in all his mucositis is headed in the right direction. I caught one of his better moments on video and wanted to share it with you all. Tom's friend sent Grayson a care package with some books and duck feet. So adorable!

http://www.youtube.com/watch?v=D6iSQi3Envk

His liver on the other hand is also showing signs of engraftment. However, these signs need to be watched closely because they can also be signs of VOD and/or Graft Versus Host Disease (GVHD). The doctors are funny because they say a little GVHD is good but not a lot. They would like to see a skin rash but no problems with the liver or digestive tract.

He still has a lot of nausea and they aren't sure why and he is still not interested in breastfeeding or any other food at this point. He is also having nose bleeds despite the numerous platelet transfusions. Because he won't eat he is still on IV nutrition and that adds additional stress to the liver. There are two specific prayer requests and that is for Grayson to start eating again (breastfeeding) and for a very healthy liver.

I also wanted to share that God is continuing to work in my life during this time. I had begun a Bible study not long before Grayson was diagnosed and one of the things we had to do during the study was to write some spiritual goals for this upcoming year. My main goal was to be bolder in sharing my faith. It is not something that comes easily to me. I get in situations where I feel like there may be an opportunity to witness and I cower because of self-doubt and fear of embarrassment. It is amazing how routinely I am able to share it now with the people on this floor. God is bringing me the opportunities and I am no longer stifling the Holy Spirit's desire to shine but embracing and praying that God will give me the words to plant a seed. It is amazing how the God will create moments and a prompting in me to talk about my faith or just simply share the gospel message. I feel like I am playing volleyball and He is just setting the ball up in the air and waiting for me to spike it! (My brothers are probably laughing at that analogy because I never was able to do that when we played beach volleyball on vacation). I am just really thankful for these opportunities. Please pray for my nurses on this floor Amanda, Alex, Kasey, Sam K. and Sam S. I have really enjoyed getting to know these girls and each are such a gift to me and Grayson.

My family is so blessed with a wonderful church family and I wanted to take time to acknowledge Uniontown Bible Church for their loving kindness towards my family. Thank you for your cards and letters, your gifts, your meals, and most importantly your prayers. We love you and are so thankful to be involved in a church family such as this.