Friday Here and Gone

Rebekah is continuing to not sleep very well. Last night, she woke up several times screaming. Once, she had thrown up. Not a lot, but enough that her bed had to be made and she wanted her nutrition stopped. Because her food was stopped, yesterday was the first day in a couple of weeks that she didn't get her RDA.

Today, she has wanted the food off most of the day. She will say that she wants her food connected up and once I start it, she immediately wants it stopped. I'm guessing that she is hungry and doesn't want to be confined to the IV Pole. We tried something new - bolus feeds. Instead of using the pump we connect up a syringe and use gravity to fill her stomach. I've given her 4 ounces (or 1/2 cup) four times today by bolus feed. She has seemed to tolerate it ok. Since her RDA is nearly 6 cups, that would take 12 bolus feeds at 4 ounces each. Or we need to use some pump at night. We'll need to see what happens over the next few days, but it may be a change for the better.

Rebekah has a diaper rash that has her pretty upset. It isn't terrible, but it sure seems to hurt whenever she poops (or gets cleaned up). She also has a cough that really hurts. Desitin and Benadryl are our friends this week.

Once again, she was pretty insistent on going outside. She wanted shoes, socks, coat and hat on so she could go. Mom helped her with those and then we walked out to the mailbox to get today's mail. She seemed to enjoy the walk even though it was a short one.

Both yesterday and today, she had her Dora outfit on and then off and then on and then off... She seemed to want it on when she was watching Dora on TV. It was kind of cute to watch... Sarah looked pretty cute with Dora's hair.

Hope you all have a good weekend!