A New Old Trick

Monday and Tuesday have been better, but we're still struggling at night with vomit and teething. And then there's the one hour one way commute that has been a bear in the rain that we're having this week. The boys however are really doing well. Cameron has REALLY grasped the requirement that he must accept and swallow the food offered on the spoon before he can have his toys back to play. Evan is much more stubborn but also is grasping the concept well so that he's now opening his mouth willingly three out of ten times. But it's still very slow going and requires at least two people to feed one kid with this protocol. We would like to see the boys increase the volume consumed per spoon (they take about a half a spoon each bite) and the number of bites they take to where they are consuming at least 80% of one smooth food item before we move on to more difficult textures.

One amazing new trick that I did not know the boys would do is take medicine by mouth. They have not been able to tolerate this since before they got their feeding tubes. Today the nurse told me that she decided to try it and see what would happen if she used the feeding protocol to administer .3mls of Erythromiacn and that it's worked every day for a week. I was stunned that it's working. In my mind the last test of getting off the feeding tubes would not just be that the boys could show they were getting enough nutrition by mouth for up to two or three months before removal of the tubes, but that they would also have to tolerate taking all their medicines by mouth as well. Erythromiacn is a very smooth medication that is bubblegum flavored so that's part of the reason that the boys are able to take it. If it were Prevacid they would have more of an issue with it because it's a difficult medication to administer since it's a soluble tablet which is something the boys can't tolerate, and if we were to dissolve it the granules would be too much texture for them and they would gag and likely vomit because of the gag reflex. We used to give Prevacid by mouth when they were very tiny so I'm very well versed in all the ways you could possibly administer this medication and I'm pretty certain that we are a ways off from giving that by mouth. But it's very promising that they are willing to take the Erythromiacn by mouth.