White blood count = .6
Absolute Neutrophil Count = .2

Isn’t that a nice way to start off an update? The numbers are climbing and we couldn’t be happier about it. Now we just want those new cells to do their respective jobs and jump start the healing process. There is a good amount of healing to do and we can’t wait to start seeing the benefits of those climbing numbers. How nice it will be when we are able to just put her in a bathtub and let her play with some silly toys. We can’t wait to see her splash around and make a complete and utter mess. Maybe one day soon (a year or two perhaps) we will be able to see that little wish come true.

For every step forward there is going to be some backwards motion. We expect that and today was no different from our expectations. She is still running pretty high fevers and retaining a good amount of fluids. Right now Rafi is approximately two and a half pounds heavier than she was when we were admitted. You can tell how bloated she is pretty easily but the real test is how fast your arms fall asleep when you hold her for long periods of time. When those fevers spike, she wants and needs to be held. And held, and held, and held. During those times at least you can say that you have a hot compress keeping those muscles relaxed.

There are probably several reasons why she continues to have these fevers. She could have an infection somewhere and her body is responding the way it should except there are not enough white cells to kill the infection. They could be due to the amount of inflammation in her body. It’s hard work for the body to produce all these new cells and that could cause the fevers. They could also be the side effect of all the drugs she is on. Or it can be “E”, all of the above, or “F” for that matter, none of the above. Right now nobody is overly concerned about the fact Rafi has fevers, only that they tend to be very high. Tylenol with Celebrex and an icepack usually do the trick over time.

I say that there is some backwards motion because today she wasn’t very active. She just didn’t feel well and decided to play that “I’m sick card”. For good reason mind you. But she is an impressive fighter and after I left the hospital this evening, she apparently woke up in a great mood. Jackie even got her to try on the mask she will have to wear when we leave the hospital. This was a huge accomplishment. Rafi even asked to brush her teeth. That’s another huge step forward. Before the transplant, Rafi loved to brush her teeth. Actually, she loved holding the tooth brush and sucking the strawberry flavored tooth paste from the bristles and then dunking the brush into a cup of water and making a mess. She did brush a little but that was only a means to get the strawberry flavor. So tonight, she asked to brush her teeth and I can’t help but crack a smile.

There is another small issue arising now. Up to this point, she has been really great about getting her blood pressure, and her vitals in general, taken. We would ask her which arm she wanted to use for the “arm hug”. She was getting very used to it and a real champ about getting it done. However, now it hurts her arm. The amount of times she gets her blood pressure taken would be enough to make any arm kind of sore. So we started on the calf. Now that hurts. I guess we’ll figure something out. Also, even though we coat the thermometer with aquafor, it is starting to leave a mark under her arms. Eventually she’ll build up some scar tissue under there and we are concerned that the temperature readings will no longer be accurate. As it is now, each underarm will give us different temperatures. One will show a reading of 2 degrees less than the other. The small things are what get you in the end.

It’s ten o’clock now and I still have to do some work. Thank you to everyone for all the encouragement and support. It has been more helpful than I can put words to. Still, and it’s important to understand, the best way to help Rafaella and all the other people who suffer from Epidermolysis Bullosa, and those that will suffer from this horrible disorder, is to spread the word about it. Let’s increase the institutional knowledge about EB. Let’s pressure our politicians to force insurance companies to pay for the bandages that these people need. There are insurance companies that put a $1,500 yearly cap on these special bandages. We use about $5,000 a month. Spread the word. Remember, motion creates action. Action creates funding and funding creates services for those that need them and helps to create treatments and hopefully a cure. Jackie, Rafaella and I are lucky. I’ve always believed that luck is the intersection of preparation and opportunity. But, I have come to learn that there are other factors at play. If we spread the word about EB we can increase those other factors as well as the opportunities that exist. Now go to it.

Tomorrow is March 6 and it is Jackie’s and my anniversary. We’ve been married for six years now. There is no way I could have survived these past two years without her. While we don’t cherish the idea of spending the day in a hospital, we are really looking forward to a year of health and happiness.