It was quite nice to spend Mother’s Day home as a family. Yes, we are still home and Rafi continues to do very well. I apologize for not updating sooner, but as it turns out, I am getting older by the second and need more sleep than I ever have before. Getting older sure does stink. Anyway, over the weekend we were given a two day pass away from clinic. It was almost like old times when we didn’t have any doctor appointments. We have an appointment today to check her cyclosporine levels and general blood work. Today we also started up our daily nursing so Rafi will have to get used to having someone else in the house with whom to play. So far, by the sound of it, Rafi does not appreciate it. We always said she needs to have her coffee in the morning before she becomes a nice child.

We no longer vent her gtube all day and all night. This is a welcomed change. Her vomiting episodes have decreased, now just two times a day, going to sleep and waking up. I want to get her off the antiemetic, zofran, because I don’t think it does any good at all. We give it at eight o’clock and she throws up at nine. I also think it is good to just get her off as many medications as possible. Speaking of that, we no longer use hydroxyzine or neurontin, and we very rarely use any pain medication, including tylenol. Although we still have supplies of all of them in case.

Now we are trying to get her to eat some food. This has been difficult at best. She needs to start augmenting the TPN with her own caloric intake. We are starting to put some formula in her stomach every couple of hours and attempting to get her to eat regular food as well. She will say “I’m hungy” and then not want to eat what we put in front of her. Right now the only thing she will eat is the smoothie I make for her. I blend up strawberries, blueberries, bananas and orange juice and add in some baby oatmeal for some additional calories. She doesn’t eat much but it is a start. She did eat a quarter of a popsicle yesterday though, so some headway has been made.

I know everyone wants to know if she is blistering less or is seem to be getting better in any real way. Jackie and I just commented yesterday how we seem to have to lance fewer blisters. so that’s something. She does still tear herself up a little, so I can’t say her skin is any more durable than before, but she seems to heal more quickly. This is not scientific in the slightest, but this is what it seems to be now.

I promise to post a video or two tonight or tomorrow. I really have to catch up on some work and some bills today. This will be a week long process if that is any indication at all. Between clinic visits and bath and bandage changes, I am going to be a busy boy. but I will post one or two.

Until tomorrow…………