I didn’t realize it had been so long since my last post. So here is all the news.

As of yesterday, we only have to go to clinic once a week for blood tests and we see doctors every other week. We can stop one of the antibiotics she is on. Plus, we got the go ahead to wean Rafi off her immunosuppressant, aka gengraf. It takes 8 weeks to stop taking this drug. Once we are off this drug, we should be able to get her off her last blood pressure medicine. In 5 days, we finish the course of one other antibiotic as well. Slowly but surely, we are getting rid of the drugs.

After 100 days, Rafi is still 100% engrafted. That means the cells floating around in her blood are of donor origin. This is great news, as the odds of her rejecting the transplant are now pretty low. Hence the reason we can wean off the gengraf. Furthermore, the biopsy results showed that 30% of the cells in the skin they took are of donor origin. That is also great news. What i can say is that area of her body used to be a trouble area. Now the skin looks great in that area. Her feet and calves were a source of many wounds and blisters before the transplant. Her calves have been amazing for awhile now, free of wounds and blisters for some time. Her right foot has had a blister, that we lanced, and two days later the foot looked absolutely normal, as if there was no blister. This never happened before transplant. Another example is on May 15th, Rafi had a pretty terrible wound right at the crux of her foot and calf. On May 17th, it was significantly better. By the 23rd, it was healed. Before the transplant, this wound would have taken a month to heal. Her hands also look great. She’s getting better, slowly but surely.

We are still working on the eating, and on increasing the amount of formula she gets on a daily basis. So far, we’ve been giving her feeds overnight, and we are increasing the volume methodically. We do this to make sure her stomach can handle to volume and the sugar. So far so good. We have a way to go but I hope to be able to increase our volume adjustments significantly within the next week.

Rafi’s spirits have never been better. She is talking up a storm, loves to paint, play zingo (bailey I think I hate you for that one) and not listen. She’s turning out to be a very smart little girl, so I am quite interested to see her in twenty years. I better start saving for college, she’s going to an Ivy league.