One week in

We are now one week past Reuben's g-tube surgery. His g-tube site is healing well and he is able to move around without wincing every time his abdomen tightens!

Getting used to the new diet is tough on Reuben and is a bit of a challenge for Andrea and me to juggle to make sure we are keeping all of his intakes balanced and getting him enough additional water. Not to mention having to figure out which feed pump is beeping and needing attention. Is that Mira or Reuben?

Everything related to Reuben's eating is far more regimented than it used to be. The first few days we had trouble with Reuben vomiting. Our guess is that this was most likely due to him having a very small stomach and us trying to get more volume into him than he is used to and it all being far fattier than his normal diet. So we backed way off after that and have been gradually working up to where we are supposed to be.

The last few days we have gotten all of his meals and all of his extra water completed and he has tolerated it OK. We do a combination of ketogenic formula and water through his g-tube and some meals by mouth. However, yesterday at lunch we had pancakes and today at supper we had pizza and Reuben was really bummed that he was not able to have those things as well. He was just sobbing when he couldn't have pancakes. Tonight at pizza time, he was upset for a few minutes and then was willing to settle for some bread with LOTS of peanut butter followed by some heavy whipping cream!

The main reason for switching to the ketogenic diet was to try to get some control over Reuben's seizures that do not respond well to anti-epileptic drugs. We had heard from other parents of kids with R20 that this diet can have good results, but it is not easy to implement. Thus we had not, as of yet, tried it with Reuben. Needless to say, the past month-and-a-half made it pretty clear that we needed to try something different.

So far, we think we may have seen some absence type seizures from Reuben on Thursday in the afternoon/evening, but we are not certain. Aside from that, we have not seen any seizure activity since the day after his surgery. So far so good. Hopefully he should be able to return to school next week, now that we are getting his feeding figured out and we have the necessary doctor's orders for him to be tube fed at school.

Reuben was even feeling good enough this morning to join a number of the rest of us for a few trips down the hill! There's even room on there for me at the back, but someone had to get off to take the photo.