After 85 days in the hospital we left and came home. When we got into the apartment, Rafi became a completely different child. In the hospital, she wouldn’t walk without holding a hand. This afternoon everything was “by myself”. She walked all over the place, threw balls around and dared us to get the ball before she could. She was happy to be home. She even started to eat some food, something she would not do in the hospital. But the greatest thing was when we walked into the door, put Rafi down on the ground and she uttered one of those lines only a two and a half year old would say. Upon entering the apartment, Rafi said, “Mommy, where’s my broom? You need to clean”.

She has a point. Our place is quite messy to say the least. Our dining room table is a repository for mail, papers from the hospital, baseball hats, batteries, etc. The kitchen island is littered with syringes and medicine bottles, directions and cards from people who sent us food and gifts. But it could be worse, we could still be in the hospital.

I have a couple of very funny videos I will post tomorrow or over the weekend. One of them is of Rafi strumming her new Dora guitar that my parents sent to her. She is literally strumming this toy guitar and bopping her head to and fro. It’s great.

We also got some test results back today from her sixty day biopsies. Rafi is fully engrafted. In other words, 100% of the cells floating around her body are from the donor. This is the same result as we got from the day thirty biopsies but it’s nice to know the number has not decreased. Also, from the small area of her left thigh where they biopsied, 11% of the cells in the skin are donor cells. We are still waiting to see if she is producing more collagen 7 but we should know that in the next week. We are told not to expect any increase in collagen 7 production until day 100 but we are hopeful.

Now the key is to stay out of the hospital. Keep your fingers crossed, we like it here.

Until tomorrow……