Disappointing

I have to say that Rebekah's weight check today was disappointing. For the first time in her struggle to grow, she actually lost weight this week. Not much - just an ounce and a half, but still it's not the way we want to go. So our dietitian is tweaking Rebekah's feeding plan again. We will have another weight check next Tuesday. We (Rebekah's doctors and Drew and I) are really working hard to find the right combination of feeding amounts/times/frequency that works for Rebekah. Too little and she doesn't grow; too much and she becomes overfed and refuses to eat at all. This is a very difficult and very frustrating hurdle for us to get over right now. Please pray with us that Rebekah will be able to gain some weight this week.

Rebekah "talking" to her brothers!

On a brighter note, Rebekah's endocrinologist had nothing but good things to say about Rebekah today. He was so pleased with how she was doing that he didn't see a need for labwork today. Rebekah will be seeing an infectious disease doctor in the next few weeks to follow her immune system, so we will be able to check her calcium and vitamin D levels during the labwork that the infectious disease doctor will require. Rebekah didn't know enough to be happy about getting out of the labwork, but it sure made my day! She is a hard stick and the last blood draw we had was rather rough.

Tomorrow we are heading to Charleston to change Rebekah's tube for a Mic-key button. It should be a quick in-office procedure, so hopefully we will be back tomorrow evening. We will try to update tomorrow night and let everyone know how things went.

Nancy