First clinic visit

Blaise had her first CAIR (Center for Advanced Intestinal Rehabilitation) clinic visit today. The clinic model is that we show up and have a quick blitz of visits with her various doctors and then we decide what changes, if any, to make. It's a check-in and an update kind of thing. I was only half joking in my last post about not getting readmitted. I couldn't think of any reason they would, but you never know. Fortunately, Blaise has worked out that we can go visit our friends at Children's and not stay overnight. We are home and she is sleeping nicely.

The overall vibe is that they're very pleased with how she's doing. She's gained more weight and is up to 11 lbs, 1 oz (5.035 kg). She's clearly thriving on feeds alone, which everyone is happy about. We've been impressed with how well she's been doing, so we weren't really surprised that they were, too. The part we really weren't expecting was the updated plan. We thought we'd stay on the same schedule and just bump up her volume a little. Um...

Blaise will now only be on tube feeds 12 hours overnight. The rest of the time, she can have as much as she wants by mouth whenever she wants it. As Ben put it, they're prescribing 12 hours of normal. (Although to help with the bleeding, they also prescribed steroid enemas every other day, so normal is a relative thing.) The idea is to get her used to the cycle of hunger and eating like a normal kid. Blaise has never had to demand food. She's either tube-fed or bottle-fed on a schedule. When she has been hungry, it's because we've had to stop feeding her entirely. We're sure she'll learn how to request food pretty quickly, but we're taking it slowly in terms of how much she gets at a time. Just because the doctors are allowing 3 or 4 ounces at a go doesn't mean we're going to jump straight there.

They also replaced her g-tube with a g-button. The difference is that the button lies flat against her skin while the other has about 6 inches of tubing that hangs off even when she's not attached to the pump. So when she's not being fed through it, you won't even be able to tell that the tube is there and she won't have a nice length of tubing to tug on. Today, for the first time, I held her with nothing hanging off of her at all. Not just untethered; properly cordless. Tomorrow, she'll be that way for 12 hours. How awesome is that?