Philip is having some good days while waiting. That's very good. Waiting is hard enough. Oddly enough, we haven't seen his bigger tonic seizure for a week and a half now. We did try the essential oil, frankincense, for a little while but stopped using it because it seemed to make Philip more aggressive and agitated. It may have had an effect on those seizures but that's not for sure. He is still having many, many smaller seizures every day so we still need to continue with our plans for the diet. The first few days in the hospital will be 24 hour video EEG so it will be interesting to see what seizure activity is recorded. When we researched frankincense before using it on him, we did find that it has ketones as part of its makeup so perhaps it's another indication the ketones produced through the diet will also be helpful.
Although he is having less meltdowns the last few days, he is still having trouble drinking, eating, and moving around. We changed his sippy cup to a sports bottle. He seems to be able to get water from it better now. He had trouble with that kind before but it works now since the water is more free-flowing and he doesn't have to suck as hard or keep that seal with his lips.
Ben has taken his second week of vacation this week so we are pretty much taking it easy, knowing life is getting ready to change drastically. We even found out this week, we will probably have to buy certain soaps, lotions, lip balm, baby wipes that don't have glucose in them. We didn't think that far but I guess the glucose is absorbed through the skin. Going anywhere will also include planning ahead every time. We can't just grab anything from a restaurant. But it will be worth it if it helps Philip get control of these seizures. A small price to pay to give him the chance for quality of life.
I am convinced more and more, even through this journey, especially through this journey that God is a sovereign God who is not only faithful but loving. He has provided so incredibly, not just material things although they are appreciated, but grace abounding. The Bible calls it manifold grace, multifaceted grace, grace for every situation. Of course, we are excited about the diet scheduled, but recently I have just felt the joy of the Lord in my spirit. It doesn't make any sense, even to me, that I would experience so much peace and calm and joy in such a time as this. It has to be the Lord! He is so good! The understanding that He doesn't give His grace for a situation until you need it is so much more real. No matter what happens, if the diet works or doesn't, I know that God will get the glory in this situation. Praise His Name!