Triple digits baby. Day 100 is a great milestone to hit. We are on the upswing as well, which is nice. Her infections seem to be going away thankfully. She is on enough antibiotics so one would have to assume this would be the case. We are getting more formula into her on a daily basis but we have a way to go. I think we are going to have to rely on TPN, aka IV nutrition, for a long time. In order to be free of the TPN we need to get her 10x the nutrition we are getting into her now. It’s a daunting task but we have time on our side. We are just getting Rafi’s GI tract working now, and while we are taking slow steps to increase her intake, I have a feeling that all of a sudden we will be able to double or triple intake in a short period of time. The real big step will be getting her to eat solid, or at least soft, foods. She just doesn’t want to eat many things, and the old standbys just don’t exist anymore. We’ll figure out something soon enough.

We tried not giving Rafi Ambien last night and that backfired. We even tried hydroxyzine but that did absolutely nothing. This kid is never going to sleep. It’s funny because she will not sleep well at night and then, out of nowhere, sleep until 9am. I’d give anything for her to sleep through the night and wake up at six in the morning.

During the day, Rafi is having a good time. That is when she is not being a typical 2 and a half year old. Fact is she is pretty amazing. I know I say that a lot but it is true. She’s smart, funny and loving, and she gets more so every day. She can even spell her name now, count to ten in spanish and hold conversations. She is opinionated, and that’s not really a surprise as she is Jackie and my child.

We are seeing changes in her skin. She is still blistering, but it seems to be less. She can still tear her skin, and she does. But her new skin is softer and the coloration is normal. The milia on her face is clearing up and her hair is growing in nicely. She does get some rashes on her body, but we think that is a combination of all the drugs she is on and a little heat rash. Then it clears up.

We are going to try and figure out some way to celebrate with Rafi tomorrow, that one more milestone has been hit. That we are one day closer to having a healthy child. That she is a great kid who is incredibly tough and one hell of a fighter.