Jonah is doing great with his new diet! He eats it wonderfully. Things he never used to eat like macadamia nuts he even enjoys enjoys and asks for now. Macadamia nuts are on his free foods list. He is allowed one free food each day if he is really hungry. So if he gets really hungry we are allowed to give him 1 macadamia nut, 3 black olives, 25 grams of lettuce or 3 filbert nuts.
It has been a huge gift from God that Barb and Jim have taken on the huge task of preparing Jonah's meals. It really is not an easy task. It can take hours to make a few days worth of food. The fine tuning process like how much raw ground beef will it take to make one small hamburger patty that needs to weigh 27 grams.
We are really thankful to all who have stepped in and blessed us as we try to heal Jonah's brain. Thank you to all of you who continue to lift Jonah and our family up in prayer, we feel it. Thank you to my mom who has been coming over EVERY weekday to help out. Thank you to everyone that has donated supplies. We are using every single one, from the pack it to the small containers to the tiny spatulas. Thank you for the meals you had given the rest of our family as we are still trying to figure out how to feed Jonah his "magic" food and then also provide a decent meal for the rest of the kids at the same time. Thank you for monitary gifts for the medical bills that are pilling up faster than we can pay them. We are turley blessed.
So, the question of the night you guys are probably wanting I know is....
1. Has the diet helped? In short, yes, I think so. Usually if he has a seizure now it is usually trigger provoked. For instance, if he is very upset and crying. I am comfortable with him not wearing his helmet.
2. Is Jonah still having seizures? Yes, but I would say less. The only way to know for sure would be another EEG. At the hospital they said he was having 3-6 an hour, which of those we would only see maybe 2-3 per day. Today he didn't have any!
3. Is he producing ketones like he should? The first 2 weeks have really been all over the place. One time I will get a negative reading and the next small and the next moderate. So it has really been changing a lot. His dietition has already increased his ratio from a 1:1 to 1.5:1. Today though he had very large ketones all day. He haven't had that high of ketones since we left the hospital. So that is great, hopefully they will stay up so we don't have to increase the ratio again. Every time we have to increase the ratio he gets less carbs( fruits/ veggies) and more fats.
4. Does he get hungry with limited calories? Yes, we are working on that. It is really hard when he is crying because he's hungry and it's not time for the next meal yet.
Jonah eating his veggies at grandmas
This is his favorite meal. He asks for eggs everyday. Bacon 5g, egg 30g, cheese 5g, butter 10g, fruit 80g, veggie 80g, cream 55g