Apparently, Rafi has a pretty bad case of mucositis. The doctors, nurses, residents, and fellows all say so. We know it’s there, it’s obvious, but I don’t know how much worse it gets, or if it gets worse, at this point. I really have to be more diligent about putting the caphosol in her mouth. Nobody is really able to discuss severity of her case with me because it affects kids differently, with various levels of severity, depending on a million factors. They’ll look at her mouth and you can see it in their eyes and they say things like, “How’s her pain level now?” or “ooooh yeah, I see the mucositis has set in.” Here’s what I do know for sure, she is handling it very well. Yes she gets IV pain medications round the clock, but her strength and toughness is evident. Our nurse tonight was very surprised that Rafi was still putting food into her mouth, let alone dancing on the bed this evening. Rafi was so funny as some 70′s disco music was playing in the background. She was holding onto the hand rails of her crib and dancing up a storm. I am not sure i have seen her dance so well before. We can now add she has rhythm to her long list of traits. We were laughing and Rafi was just enjoying herself. It was great.

I took some video of the dancing but I am not sure I am going to post it. Rafi is pretty beat up right now. In other words, the EB has really decided to rear its ugly head and leave it’s mark on her forehead, face and neck. I knew she was beat up, aka has more of her body affected, it’s plain to see, but I really didn’t know how bad until I started watching some of the videos we have posted on the site. It’s a marked difference. Her skin really has taken a beating lately. She has always had a good amount of superficial wounds but now areas that haven’t been affected lately, are. Thank goodness she is on the pain medication.

We actually had part of the day when she didn’t have a fever. We gave her Tylenol and Celebrex and that seemed to do the trick. We also increased the amount of fentanyl she gets on an hourly basis as well as the amount we give her when she needs a short term bump. She also is getting a blood pressure medicine added to her list of dailies. Time to head off to sleep.