Day +70: Miracle Milestone

Sorry, it's been a few days. My excuses are lame, so I'm not even going to try to explain. :) Enough about me, lets talk about Daylon! Today especially has been packed full. Let's go over the good and the bad.
 The Bad:
 Daylon's body has sprouted a rash this evening. I took pictures and sent them to Dr. Tolar, so we'll know more in the morning. The fear is 'Graft Verses Host Disease' or GVHD.  It's where Caleb's cells attack Daylon's body because it recognizes it as foreign. It happens in 30% of BMT and is usually noticed around day +30.  We're a ways out from there, but it could still happen. I'm not really sure what to think. Daylon and Caleb were identical matches, Daylon's a baby, and Caleb is older than Daylon but not old, all work in his favor to not get the disease. We'll see.
 The other bad thing is that tonight when Daylon started to fuss, I went to get him out of his crib and I bumped his head on the monitor's probe. Yeah, Mother of the Year, right here. It took off several layers of skin and bled. Now it's this shinny, fleshy spot. I feel awful. It happens, I know; Still, I hate causing him pain. He's in enough already. I was so concerned about watching his IV lines (his hickman isn't sutured and on the verge of coming out) that I forgot about his head. Well, it gets worse. I sat with him on my bed, examining his wound and I forgot to watch his g-tube (it started to come out earlier today).  The next thing I know, my legs all wet and when I look down, I see his g/j tube is on the bed. The. Whole. Thing. I know. From there, I spent the next hour applying pressure to the open hole, waiting for the resident to find a grown up who knows something about EB and g-tubes. Sorry, that was a little harsh. This girl had two modes though: slow and stop,  and is just in her second week of BMT residency. Anyway, they ended up sticking a urine catheter in his g-tube site to keep it from closing (the hole closes super fast and he can't go under for surgery without being intubated again and Dr. Tolar isn't budging on that one. Daylon will not have surgery if he can help it). He has an IR appointment tomorrow to have it replaced, while he's conscious.

The GOOD:

Our son is back!!!!!!!! I have no clue what happened but he woke up post dialysis a new man baby! He's been smiling at everyone, waving "hi" and "bye", reaching. Get this, out of no where, he suddenly has coordination in his left arm and hand! He's grasping no problem, he even helped Andy, the RT hold his mask for his nebulizer treatment! He's cooing and babbling and I got him to say "hi" and "mama" again! He's done the short little yell a few times like he used to, to object and started shaking his head "no". He's not 100% his old self, but he definitely seems like a baby. He's happy! Do you know how long I've been waiting to see him happy?  :)  It was so hard at times to see him just stare blankly, or to pick him up and talk to him and know that nothing was registering with him. We knew he was in there, but he was so far away. You know that story of Helen Keller? The little girl who was born blind and unable to speak? The story that is so full of hope and miracles? At the cost of sounding un-American...I hate that story. I always have. It's a wonderful story, but the thought of not being trapped in your own mind....she can understand, but not speak or even sign because she can not see. As a kid, I read the story and felt sick. One month ago, Brian and I sat down with doctors and were told we would likely have a "Helen Keller" of our own. A little "Helen Keller" who would not be able to move his right side, more than likely be mentally retarded and have EB (for at the very least, the next several years). The thought is more than I can bare. I cried and obsessed over it for a few days, but then I knew that if I were going to help Daylon get through this, I would need to be stronger than I was acting. I pushed the thought from my mind, and everyday, every minute sometimes, reminded myself that all things are possible through Him. We needed to trust in God and nothing else. Today is a miracle. I have a testimony that God lives and he loves us. He may not always answer our prayers with the answer we want, but he does answer them. Daylon has a horrible disease that no person should ever have, but because he does people all over the world know who he is and love him. Everyday we are all united in prayer for him and the other EB children and we are able to witness miracles and God's love. We are closer to our faith and perhaps, closer to our families. Thank you for following Daylon's journey. You have helped us through our darkest days and I'm so happy to see the sun shine. We love you. Sweet dreams.