(disclaimer: these pics have nothing to do with this post...just couldn't think of another reason to post pics of the kids brushing their teeth and who wants a post without pics....so it was a match made in the bathroom heaven)
So, first Benjamin: He gained no weight in the last 6 weeks (despite Boost shakes and calorie boosting). He is 26lbs14oz and 35 inches tall. So, we are going to try two things with Ben this month. 1. An appetite booster and 2. For him to drink three Boost shakes a day (the concern was that even with the extra calories he did not gain at all....so lets see what happens if he is getting over 1000 calories straight from the shakes with no portion size etc to worry about...just drink. She wants me sure that absorption is not an issue (he has had several labs done to test absorption all came back normal, so this is just one last check).
And Annabella: She gained a good solid pound despite having a rough month (colds, tube issues, pump issues, etc). Kind of lessons the heartbreak of dealing with that tube! She now weighs enough to qualify for the feeding therapy program at CHOP. Most likely she will start therapy in July (apparently there is a 2yr wait list for this program and kids are accepted into the program based on need....so Anna was accepted immediately pending the weight requirement) or August.
There is now some talk about switching Anna from an NG tube to a G tube. If they offered to admit her today to do that I would have jumped at it. The G tube involves a small surgical procedure to place a port in her stomach and then the pump can be attached directly to her stomach. Definitely higher up on the gory scale, but never again would we have to worry about her tube coming out and all involved with the care of her tube that causes her quite a bit of suffering. Also it would LOOK much better. No more big piece of tape across her beautiful face and the tape tends to get all cruddy with food, dirt from playing outside, boogys etc etc. So anyway, this is just being discussed, but I hope that they recommend it.
We go back in four weeks for another round of weigh-ins etc.
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