Taking Stock

It has been 64 days since Zane entered the hospital to initiate the Ketogenic Diet. Just a little over two months ago he had his first Keto meal which consisted of chicken breast, butter, applesauce and heavy whipping cream. Since then he has consumed 3 gallons of heavy whipping cream, 4.5 pounds of butter, 1.5 quarts of oil and a Sam's Club sized bag of macadamia nuts. I have been buying fresh strawberries twice a week despite them costing twice as much now as they do at their peak. They are his favorite and they are a low carb fruit which means he gets more of them as compared to other fruits. For example if he has strawberries with his meal it usually amounts to 2-3 medium strawberries. If he wanted to have oranges instead it would amount to about a third of one wedge. Vegetables go a lot further when it comes to carbs. So far he has really only showed interest in green beans and broccoli. But they are higher in protein so he loses some of his already small portion of meat.

I would say breakfast has been the biggest challenge for us. I have recently been making french toast for him with the low carb bread I ordered from Ohio. It amounts to a slice about 2x3 inches. For a while he wanted a strawberry "pancake" daily. That is made with oil, egg white, half a strawberry, diced (so he can eat the other half by itself) and lots of ground up macadamia nuts. Mix, fry and top with lots of butter and fake syrup. That meal would have a small portion of cheese to complete the protein requirement and heavy whipping cream to drink. The last time he had this meal for breakfast it took him literally one hour to consume it. For now the french toast is going down much faster.

The main reason his meals take a long time to consume is because of the cream. Each meal the cream amounts to approximately 1/4 cup but it also has some oil mixed in it. That doesn't sound like a lot, but it can easily take him 30 minutes to sip it down. Recently he has been gagging a lot on it and in some cases it comes back up. I am really hoping that it's related to the virus he had last week and is hopefully over now. We also determined that freezing the cream (always with oil mixed in it) was easier for him to get down. We had been sending "ice cream" with his lunches for school since that was the best way to transport the cream. Now I am making ice cream ahead of time to go with every meal because his face just lights up when he sees he doesn't have to drink any cream with his food. That's not as easy as it sounds though. Each meal is different depending on what the items are. Each meal has to be calculated. So each meal can have a different amount of cream and oil. So to have ice cream available means planning ahead a few days in advance and doesn't give us much flexibility with his food. And even though he prefers the ice cream to drinking the cream we still have to spoon feed it to him.

We are also letting him sit on the couch and watch TV while we feed the ice cream to him. Before now we have always been a "the TV stays off while we eat at the table" kind of family. But for a while there the kitchen table felt more like a battlefield. It was us against him. None of us were ourselves. It was a constant struggle getting him to eat everything. We would walk away feeling guilty for raising our voices at him because we know how bad the meals have to be for him but at the same time feeling like we have no choice because it is helping him. We have explained the "magic" diet to him time and time again but does a 4 year old really understand that this yucky food is helping his seizures go away when he can't possibly understand what a seizure really is? So for now having the TV as a distraction is making mealtime much more pleasant for the entire family. Once the ice cream is gone he goes to the table to eat the rest of his food, the not so yucky stuff.

Where has all this sacrificing gotten him? He hasn't had a grand mal seizure in 7 weeks. He has gone from having as many as 30 seizures in one day to 0-3 seizures in a day. He had 7 seizures total for the week both last week and the one before. On paper it is a vast improvement, I know. But each time he has a seizure I question the diet. I have to constantly remind myself that he would be in far worse shape without the diet and current medication. I am still hopeful that he will become completely seizure free but I also have to accept the fact that this could be as good as it gets. We have been told all along that one in three on the diet don't see any improvement, one in three see some improvement and one in three eventually become seizure free.

A lot of you have asked how Abe and I are holding up. I think we are doing pretty well all things considered. We are trying to cope with our own sacrifices, as well. At times I find myself sobbing about something Zane can't eat or a restaurant we can't visit because it would just be too cruel. If he is 4 years old and handling it fine (not begging for food he can't have) why can't I handle it at the age of 31?!?! I think what it boils down to is that I feel like we are missing out on memories. Think about how much of our lives revolve around food. Gone are the days of pulling into Sonic for an ice cream treat. No more playing at the McDonald's playland after enjoying a happy meal. There will be none of Nana's homemade apple pie after Thanksgiving dinner. He won't be able to eat any candy on Halloween or Easter. He can't even come home from school and have a package of fruit snacks. The list goes on and on. How much will this impact him down the road? Will he really look back at his life and say "I missed out on so much from the time I was 4-6". I seriously doubt it. I know he will appreciate his magic diet when he is old enough to understand it. And I certainly appreciate it now. I guess I just need more time to embrace it. In the meantime we will continue to find ways to create memories without centering them around food.

The diet is also very time consuming. I easily spend an hour and a half a day just preparing Zane's meals. And since it takes him so long to eat, Abe and/or I spend a good chunk of the day monitoring his eating. So after feeding Brody and cooking for Abe and I it is very easy for me to get burned out on being in the kitchen. I have never experienced that feeling before. Abe is doing a lot to pick up the slack in other areas of the household. But he is about to get pretty busy with work, so I know that will change despite his best intentions. Abe has been my rock through this all. I can't imagine juggling everything without his support and encouragement. Brody is still a good, easy baby. I would be lying though if I said he is never neglected because of meal calculation and prep that must be done. I try to keep him close by so I can at least talk to him and he can watch me work. We are lucky to have such a patient and tolerant 6 month old.

I've said it before but I can't say it enough. We greatly appreciate all the love and support we have gotten from our friends and family. It means so much to us having you all pulling for our little Zane. Words just cannot express our gratitude. And if you made it through this VERY long post, you deserve an extra special pat on the back.