Thursday, July 17, 2008


Ellie had her first clinic appointment since March today and that was the common comment from every single doctor, nurse, and specialist that saw her or discussed her progress. Every single person that we met said this to us like we had won something or that we were at the end of something which seemed a bit weird to me. I wanted to stop and tell them that we aren't even close to the finish line even though she looks so good and is so happy and healthy.

The numbers:
  • 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.
What's next:
  • 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.
So the take home message is keep doing what we are doing and bring her back in a month or so to see about progressing towards more TPN-free nights.

I think that they just like seeing her dance down the hallway.


Kate said...

Excellent news. I'd like to second the "dancing down the hallway" characterization. Some blog readers may think that's just Gib being metaphorical. Well, the girl just spent about 10 days at my house (jealous?), and I can tell you that she's the only kid I've ever met who never walks. She dances, she spins, she prances, she hops. She's like a curly-headed Fred Astaire with an internal soundtrack. What a girl.

Anonymous said...

Great news! I hope you get your manometry study done this summer. We are getting one done as well- also hoping for good enough results to reconnect the ostomy sometime around Christmas.

Ellie seems to be doing SO well- I hope to hear that you are losing even more TPN soon!!!!