- She is still growing well 75th percentile for height and weight. her wardrobe of outgrown clothes told us this a long time ago but it is nice to hear it officially.
- She has progressed on her formula and solid food eating . Right now her pump is set to 37 ml/hour and all told she gets just about a liter (1000 ml) of elecare each day. On top of that she eats three good meals a day and some snacks. This was all great news to the nutritionist and got a solid wow when reviewed Ellie's diet with us.
- All of this means that we are losing a night of TPN next week and we are back to 4 nights a week of TPN and three of dextrose. We are keeping the increased volume in there for the summer to keep her hydrated but the calories will continue to be pared down.
- Her labs all look good which means that her nutrition is good and she is well balanced. We like a well balanced kid.
- We are still waiting for the bowel motility study that was cancelled in May when Ellie got admitted with the gut bug. The Dr. who does the study is very busy and we got sent to the back of the line when she cancelled. We are going to push to get this done and gets some kind of an answer about why it takes glycerin to make her poop.
- If all goes well witht he study (called manometry) we will probably think about reconnection sometime this fall. Yeah, yeah. heard that one before. No hurry here to get it done. we'd rather wait than rush into it and have to reverse course. We're getting good at ostomy changes anyway.
I think that they just like seeing her dance down the hallway.