we're down to two!

well, i took e to the hemotologist on thursday morning for a factor level draw before i infused him. it was actually pretty cool, the nurse had me flush his picc line and draw his blood. never in my wildest dreams did i ever think this would be something i would do (or be sort of excited about) but it was sort of empowering. it's strange that these sort of milestones make me feel like i am helping evan and sort of defeating this disease.

anyway, his level came back at 51% after 8.5 hours between infusions, so the doctor said he could go to being infused once every 12 hours for the next week. we will go back for another early morning factor draw this coming thursday and if his levels look good we can hopefully go to once a day infusions. selfishly i am hoping for this because my husband and i are going out for our christmas date this coming saturday night and it would be nice to not have to be home by 9. although my mom, who will be babysitting, said that she would infuse evan...i think i would feel better if she didnt have to. only because its the night infusion and i do it while he is laying in his crib and its dark. well, i use a flashlight but whatever.

you know, this whole ordeal has really put a spin on me. i have noticed that i still have trouble eating. my stomach hurts a lot and my mind is always going. i am having trouble sleeping too. but evan can hardly even tell that something so scary happened to him. and he doesn't even really try to play with his picc line. he is one seriously amazing child.