I want to thank everyone for all the love and support. Know that Jackie and I appreciate it and draw strength from it. Right now Rafi is fighting. Progress is measured in baby steps right now. It’s difficult to have no answers, but getting no bad news is great news. So far, we have gotten no bad news, and that is very encouraging. We have been told that things are moving in the right direction and that days from now, she may be significantly better. The waiting is difficult and it is incredibly taxing seeing Rafi lying there, motionless, with a breathing tube in her mouth. Her tiny body rhythmically wiggling to the pace of the oscillator. We are told by several doctors that things are going well. We have the utmost faith in them.

Doing a bandage change is tricky at best. It now takes five people to bath Rafi and change the bandages on her trunk, chest and back. It takes two people to lift her, one to man her breathing tube, and two others to change out sheets and remove bandages. It’s a timely and carefully orchestrated production. The key is to make sure Rafi tolerates the movement and the procedure. She was a champ today. She can’t tell us if she is uncomfortable so we have to watch some of her stats on a screen. If her heart rate or respirations increase we know she is not happy. Today that did not happen. I will never be able to comprehend how tough this little girl really is. I’ve said it before, she is the toughest person I know.

We’ve gotten the results from the endoscopy and the sigmoidoscopy and they are good. As of now, there is no GVHD. So that’s one less thing to worry about right now. There also seems to be some improvement in her lung function which is also incredibly encouraging. The thought now is that there is a bacterial infection that caused this pneumonia. Her fevers have come down, although still moderately high, so we hope this trend will continue.

Rafi did respond today to holding my hand. She squeezed my hand on several occasions and it warmed my heart. While we know she is not completely aware of her surroundings, I believe she knows when Jackie or I are holding her hand. She is on several medications to keep her comfortable and completely still. She is thankfully not lucid, but there is some awareness. Hopefully soon she will again ask us to pat her back, pick her up, read a book, or watch King Fu Panda. All indications point to the reality that this will happen, the question is just when. This is when you realize that patience is truly a virtue.

I wish I could explain the medical information here, but I am out of my comfort zone. I have a peripheral understanding of MAPS, and PEEPS and such but I can’t effectively communicate their importance right now. Maybe in the next day or two as I begin to truly gain an understanding of them and how those numbers relate to her situation, I will report it and try to explain it. For right now, she is doing as well as anyone could expect. She is getting better slowly. As they’ve told us on several occasions, days are the measuring stick. Patience, patience, patience.

Until tomorrow………