September 25, Much to Report

I can’t believe how much time has passed since I last wrote. I am not even sure where I left off. My mistake and I will not let it happen again. A lot of people have been asking me to write something but it’s been a little hectic around here lately. Right now, we are at a constant battle against skin infections which can lead to fevers, which leads to time in a hospital. Needless to say we’ve been back on 5D and then home again. We’ve been forced to run to clinic to get blood cultures and get some IV antibiotics. So it’s been stressful to say the least. The Rituxan that Rafi received which so far has been quite effective in killing off the epstein barr virus, also wiped out her ability to kill off any kind of infection. Rituxan destroys the B cells which are part of the immune system which is responsible for fighting any type of infection. Rafi is a walking staph infection so we are constantly playing catch up against them. So, Rafi has had several courses of some pretty strong antibiotics lately. We believe the Rituxan, the antibiotics and her body trying to beat these infections has taken a toll on her skin. Her skin seems to be more fragile now than it has been in months. The same old places are getting affected and it sometimes feels like we are right back where we started. There are times when it is quite frustrating and upsetting. But then, we look at some other parts of her body and they look amazing. For instance, from her ankles to the top of her thighs look unbelievable. They really look like a normal child’s legs. A couple of other areas keep us thinking positively. But in thinking about our future plans, we’ve decided to extend our stay in Minneapolis an extra month to give her body more time to develop those really important B cells. The hospital here is so great in so many ways that it just makes sense for us to stay if there is a possibility we are going to continue to be a frequent flyer into the hospital.

So to add another complication into the mixture, bath and bandage changes have been incredibly difficult lately. Rafi is anticipating pain more now and she flies off the handle at the mere thought of changing a bandage. We’ve tried the pharmaceutical route and decided that we didn’t want to have a child on Valium constantly so we are trying a ton of different behavioral tricks. The past couple of bandage changes have been good so we hope our luck is changing. The nice thing is that most of her wounds are healing up nicely right now, so they probably don’t hurt as much as before. But in some of the past bandage changes this past month, we’ve had to apply pressure to keep her still at times. I mean we’ve pinned her down to stop her from squirming around. One such episode of hers caused a tremendous amount of damage to her left hip and buttocks. Of course these are areas that are very difficult to bandage. Anyway, before transplant, the amount of pressure I have used to keep her still would have been enough to cause some pretty horrific wounds on her. Turns out, nothing has happened so once again here is something to think positively about.

Rafi has become iphone obsessed as well. It is our fault but she really knows how to operate the device. It is really funny to see. Also her vocabulary has made a huge jump and she is conversing very well in full sentences. Of course, she has also embraced with all possible enthusiasm, the idea that she is almost three. Temper tantrums, time outs, explaining good from bad behavior is a normal daily activity. Oh what fun a three old with EB really is.

There is more to say but unfortunately our dinner is at the door and I have to go now. I promise to write more tomorrow. There is more to say.

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