+881 Feeling Much Better

David is feeling much better. He was down in bed for two days. His legs were so weak he could not walk without me holding his hand. We thought he was recovering, then he ate and threw everything up again (I felt like we took a step back). I reported his condition to the doctor and he thought since David was eating and drinking, that it was not urgent. I was fine with that. He recovered but now has his sister's cold. He is still not feeling 100%. He does not want to play at the park, ride his bike, or play with friends. However, he had fun at the neighbor's house this week. He is also active with his sisters while they are in the house. I'm not sure what made him ill in the first place. It's really a mystery.

He went for Zenopax on Thursday.

The Protopic was approved by our insurance, but it is a less concentrated dose (.03% instead of the .1%). A 2ounce tube cost me $35. David has skin GVHD all over his body so the tube will not last long. Karen told me to apply a thin layer. I'm supposed to apply the hydrocortisone 1/day and the Protopic 1/day - at different times.

It's difficult for my heart to know how to feel. At times I feel David is not living a full life, is experiencing damage to his major organs from all the medications, and for the most part not happy. My heart aches because he is becoming more sensitive to his height (or lack thereof), and the many comments made by strangers every day (not just on his height, but his red face or him looking tired). I feel that if I am not hopeful of his recovery, that he will sense my feelings, and give up. But then I think, what could possibly be good about living a life in his bad state of health? He is in a bad state of health...there is no denying that! The doctors can try all they can to make it appear that he looks good from the outside by giving him more than ten medications, but the reality, the truth, is he is not doing fine and the medications are killing him! I really don't know how to feel. I know the reality of living with chronic skin GVHD. However, I receive mixed messages from the doctors that the skin GVHD could "burn itself out." Again, I do not know how to feel. We continue to pray and look forward to the time when there will be no more sickness, or death, or suffering.

We try to live a normal life. Here are some pictures of our snow trip to Yosemite, Angles Camp, and Calaveras Big Trees - December/January 2009.