Today was a difficult day. We learned that patient #9, McKenzie, is not making new healthy cells. She has had two separate infusions of cord blood, from two different donors, and neither one has allowed her to create new healthy cells that are free of EB. In short, the transplants didn’t work. Our hearts go out to Missy and Greg, and of course to Kenzi. Both Jackie and I wish that there was something we could do, something that we could say that would ease the pain and sadness they are experiencing right now.

Yesterday, Rafi went back into the hospital to have her 100 day biopsies. We are hopeful that the five pieces of her skin they took from her will show increased levels of collagen VII production. After she was put under we took off all her bandages, the biopsies were collected, photographs were taken, and we wrapped her back up. We were home by the early afternoon. They also did the blister test, but we will repeat that because after 60 minutes, and no blister formation, we turned off the machine. It took me 47 minutes to form a blister, and it took Jackie 36 minutes, so we have reason to doubt that the reading on Rafi was accurate.

Rafi continues to have skin infections, but her wounds heal very quickly. There are some that are proving more difficult and her white blood count is still very high, so in order to be safe, we started a course of linezolid. It’s a very strong antibiotic that should help with her MRSA infections. Of course, insurance still has yet to approve the use of the drug, so if they deny it, and we lose the appeals, it will cost us $1,000. We didn’t want to wait for the insurance company to come to a decision and risk the MRSA becoming potentially very dangerous for Rafi. There are worse ways to spend a thousand dollars.

Tonight, we started feeding Rafi as she sleeps. This is the first time we have done this in over three months. We need to get more calories into her and while we wait for insurance to decide on approving feeding therapy, not to mention physical and occupational therapies as well, we moved forward with the formula feeds at night. These decisions seem like no brainers to me, but I am not an insurance company that is beholden to it’s shareholders. Rafi already gets IV feeds over night, but that only supplies approximately 63% of her daily caloric needs. We didn’t want to start this until we had her vomiting under control to a degree. We’ve been getting about two ounces of formula in a day in addition to some smoothie and puffed corn. So we are headed in the right direction, and this seems to have helped her vomiting some. So we hope by adding more, this will not only increase her caloric intake, increase her wound healing and growing, it will also decrease the vomiting. Only time will tell.

With all that being said, Rafi is in very good spirits. She is cruising around, talking up a storm and telling us that she’ll “be right back”. By the way, her new favorite story is Snow White, so all I can say to that is the more things change the more they stay the same.

I will get to uploading new pictures and videos, I promise.