A Rough Patch

Last night's supper and this morning's breakfast have not gone very well. He did well eating most of the food, but then when we tried to give him his meds with some of it, it all came back up--all the food, all the meds. Since it can be dangerous to stop seizure meds suddenly, we had to try to get them in him again. We were mostly successful last night using sugar-free jello and some salt that he could lick in between bites (strange, I know, but it sort of worked). We are waiting a bit this morning and then we'll try again with the meds.

We don't know exactly why this is happening, but I suspect that it is the bitterness of the pills probably combined with all that fat. Since he can't use traditional medicine formulas, not even the sugar-free kinds because they have some carbs, we have been crushing the pills and putting them in other stuff. But it doesn't mask it enough and so he gags. It is so hard to see him like this. He slept most of the day yesterday because he is in ketosis (this is a good thing) and the with the vomiting it was just pathetic, poor baby! So we have to figure out how to get these meds in him and his food, and keep it all down. Maybe we'll try to have him swallow the pills without crushing. Or maybe we'll have to use a sugar-free formula that is calculated into his diet (it would mean that he would get  a bit less fruit/veg at meals).

This is all very frustrating. Our keto team (dietitian, epileptologist, nurse practitioner, social worker) says that we are the most prepared family they have ever worked with. And we did do our research going into this. We knew that all the things that have happened are possible and even probable as the diet begins. But no amount of read information can truly prepare you to see your child struggle, to have to force them to eat or take medicines when they can't, to see your usually active child spend the day sleeping even when you know that should pass.

We so very much want this to work! Many aspects will be easier once we're home. We now have a roommate, which is a bit stressful in such a small space with different family dynamics, and also, David and I are not really in control of Micah's menus or his schedule. We look forward to regaining more control over his environment.

We're all doing ok, but, wow, this is hard! We pray for a successful lunch meal, for patience and courage, and for this to get figured out so that we can come home tomorrow as planned.