Philip had an appointment with his epileptologist on Tuesday and since there had been no move back into strong ketosis, she okay'd a change in his diet. This time we decided to lower his calories slightly since we are having a very hard time getting all of his meals down him since his surgery. Lowering the calories would obviously slightly lessen the amount of food at each meal and put him back into ketosis hopefully. I received the new menu plans on Thursday evening. I already had all of his meals made for Thursday so I made the change for Friday's breakfast.
Unfortunately, it still wasn't easy to get it down. We're not sure if he is just tired of eating these things and therefore refusing to chew and swallow or if he is having trouble with these functions now. It's hard to tell what his comprehension level is now. He will have a barium swallow study done soon to make sure he is swallowing safely. His doctor explained that aspirating on the keto diet is a little more dangerous due to the fat content in his meals. Pneumonia is bad news at this stage of the game.
When he came home from school on Friday, I sat him down for lunch and started trying to get his food into him. He got about a quarter of the food eaten and began vomiting. He lost the lunch he had eaten and most of that morning's breakfast. That is the exact same procedure that happened three to four weeks ago. So, after a lot of cleanup and some more vomiting and more clean up, he went to sleep on the couch for a nap. I thought, 'Okay, we are going back into ketosis. This is good." He vomited a little throughout the afternoon. When he woke up, he seemed to feel much better. He didn't throw up after his nap and hasn't since. We've slowly added foods back in and have always been able to get fluids in this time, even if it was pieces of ice. This time it wasn't as drastic for sure. Last time it took two-three days to get back to food before and a trip to the ER for an IV. The only thing that is different is we are still seeing some seizures and tremoring. The other times after we have experienced the vomiting, etc, he has been seizure free. We just may not be at the strongest levels yet and that's okay. We are definitely seeing less seizures and we also see the clarity or focus in his eyes that we noticed three weeks ago. Even maintaining this stage will be helpful. He is still using more words. His speech and occupational therapists were very pleased with his sessions this week and said they thought he was doing better.
I think the unknown is yet again what is so taxing-mentally, emotionally, even spiritually. We keep crossing bridges we have never come to before. My problem is I keep trying to cross them before I get to them and most of the time it's not even the same bridge when I do get to it. In the words of a good song, "It's hard to rest within His will. It's hard to trust and just be still. It's hard to simply wait until it's all made plain." However, the song goes on to say, [He] works in all things, In great and small things, For His own glory and our best good." It's so hard to trust right now, but the peace is still there because He is still there walking the journey with us. I do trust He will receive the glory but it's hardest to see our best good right now. We think we know what that is and He reminds us, "So, are my ways higher than your ways, and my thoughts than your thoughts."
Please pray for our family. We need to know how to observe, how to decide, how to listen, how to trust. Thank you!