We had short bowel clinic this past Thursday, I guess they are calling it the CAIR(Center for Advanced Intestinal Rehabilitation) clinic now. They loved how she looks, and she put on a good show dancing up and down the halls like always. But, she hasn't gained as much weight as we had hoped. Last week she was almost 28.5 pounds on our scale at home, but on Thursday she was only 27.3 pounds, not enough to have lose a night of TPN like we hoped.
We credit the cold she has had for the past week for the weight loss. But, it still means that she isn't gaining as fast as she should. So we are going to go from 25 cal/ounce Elecare to 26 cal/ounce and continue trying to increase feeds. We are also going to look at pushing the solids a bit more. And we are going to start plugging the ostomy for a few hours each day to see what happens. We don't want to try too many things all at once, so we will try each new step over the next month.
Even though she isn't gaining she is still in the 70th percentile for weight and height, so things aren't too bad. But we would like to lose another night of TPN. Actually we would like to lose all the nights of TPN, but will settle for just one for now.
Of the short gut families that we know, there seem to be 2 trends that are going on.
- We know 5 mothers that are pregnant again. Oops I mean 4, welcome Aubry!
- We know 5 kids that are now off of their TPN and doing great!!!! Some of these kids started Omegaven or came to Boston because of Ellie's Blog.