Looks like somewhere along the line I added a day in the count from transplant. Oh well. It’s day +65 on April 25, 2010.

We’ve had a couple of really great days. Rafi continues to improve pretty dramatically. Today she did not wear an oxygen mask all day. Right now as she sleeps, she is not wearing one either. This is quite an accomplishment at her stage of recovery. Another huge accomplishment is that Rafi has been out of bed and walking around. Now understand when I say she was walking around, she walked for about 60 feet. However, keep this in perspective, considering she was medically paralyzed for 8 days and kept unconscious for 2 more, that’s a pretty far stroll. She also stood for about 15 minutes with one of her physical therapists. The therapist was ecstatic.

Yesterday, the ICU attending came into our 5D room for a social visit. She was so happy to see Rafi sitting up and talking profusely. She said it “warmed her heart to see this”. She couldn’t believe how well Rafi was sitting up and talking. The doctor didn’t even put on a stethoscope. The fact that Dr. Parvin came for a social call is one of the things that sets this hospital apart from others. We really appreciated it that she came for a visit to see Rafi. Rafi, of course, didn’t care in the slightest.

Tomorrow Rafi will have a Barium Swallow test. The doctors here think it is still a possibility that the pneumonia was caused by an aspiration. Plus, after intubation for more than 48 hours, the body may develop a problem with swallowing that may lead to a tendency to aspirate. So, tomorrow we will get to see if Rafi has any issues with her esophagus or her throat. I have discussed the test with Rafi so she knows what to expect. She tells me she is scared, but after I explain it’s just drinking a good tasting drink and having some pictures taken of her throat, she seems to not mind going through it. There is a caveat however, I have to hold her hand.

Rafi is still having some withdrawal symptoms but they are lessening in severity and in frequency. Going to sleep still requires both dilaudid and versed, but it could be a lot worse. Before she went to sleep tonight, we called Jackie at home and while on the phone Rafi asked her to remember to bring her pink crocs back. Right before her second drug infusion, Rafi looked at me and said, “Mommy loves me”.

I do want to mention how good her skin looks. There is definitely a difference in the tone and quality of her skin. In some places it is quite dramatic. I can’t comment on the idea if she blisters more or not because her activity level is no where near where it was or where it will be, so to comment would be fruitless. What I can say is that her skin is soft and the coloration is completely normal. It’s truly amazing. She has completely healed from all the wounds she suffered from the chemotherapy and early transplant days. Looking back on those pictures now and comparing them to the current day is quite inspiring.

Until tomorrow…….