100 day biopsies coming up next week. 100 days is a big milestone to hit. If we had decided to not live here for a year, we would be planning our trip home now. It’s hard to imagine that after everything Rafi has been through that we would have the option of going back to NY. I am glad that we planned on staying here for the full year for many reasons. There are still several things that we need to work on with Rafi. She is still not eating solid food, although we are starting to get some formula into her. Slowly but surely, we will increase the amount of formula she ingests until we can stop relying on the TPN. It will take some time but we’ll get there.
We just cut her one of her blood pressure medications in half, so that’s nice. It’s our hope that in the next few weeks we will be able to discontinue the cyclosporine as well. That will lead to us cutting out two other blood pressure medications. We can’t wait. The less medication that goes into her, the better her stomach will become. However, speaking of drugs, we switched from prilosec to protonix and we think this has really helped her reflux. She has been vomiting less and we can only attribute that to the change in the drug. Of course, to this point, insurance has denied the protonix even though we have documented evidence that when she uses another drug the PH level in her stomach changes. The funnies t part about it, is that the protonix is actually cheaper on a monthly basis than the prevacid they used to support.
Today we had another esophagram to see if the dilatation was successful. We saw that there is an area of her esophagus that is more narrow than the rest and it is pretty high up but a small stricture. The nice thing is that it hasn’t changed since after the dilatation. So while it could be wider, we are going to wait on getting another dilatation until a later date.
Rafi is just getting over several MRSA skin infections now. They drove her white blood count up to 24, which is pretty high. The nice thing is that she is healing very quickly from her wounds. She is probably healing faster than I do at this point. We have taken pictures of her right foot at each bath and bandage change and the healing progression has been quite impressive. When this particular wound appeared on the 15th of this month, it was a pretty nasty wound. Six days later, I would say it is close to 80% healed. Prior to the transplant, it would take almost a month to get to this point.
Her hair is growing back. I can’t wait to see her with hair again. It looks like it is coming in black as night. It will suit her face nicely. Other than that, Rafi has been in very good spirits. She is enjoying her time with her new nurses. She actually cried the other day when one of her nurses left for the day. I just wish we could get her around some other kids. It would be very nice for her to have some contact with kids her own age. It’s been a long time since she has been around other kids and it is going to be awhile before she has any real friends again. I hope it doesn’t affect her development in a negative way. We do have to get her strength up though, because if we were to send her to preschool now, she would get trampled over. These are not my words. Her physical therapist said it. So at least we will have some time to get her close to age appropriate before we send her into the jungle.
Time to sleep and get some rest.