We had a great weekend. Got lots of keto cooking done, prepped some things for our own dinners this week and got to enjoy the beautiful and unseasonably warm fall weather. Saturday we had brunch with Uncle Bob and Uncle Brian at Ann Sather. Tobin was in sticky bun heaven and it was really nice to catch up with family who can always make us laugh. It rained quite a bit so we spent the rest of the morning watching a Diego movie and doing laundry. In the afternoon we went to a party at a friend’s house for Halloween. There were TONS of cute kids in costumes and Tobin had such a great time running around and playing. It was nice for the grown-ups to sit and talk and just have a relaxing afternoon away from medical discussions and obsessing about the diet and ways to make it better for Oliver. Oliver had a great physical therapy session and then he and Jason joined us at the party. He took a nice nap after therapy and then woke up to hang out with everyone and visit with his little buddy Nicolas, the younger sibling of Tobin’s friend from music class, Sofia.
Sunday we enjoyed going to TWO different parks and I spent about 4 hours on my feet in the kitchen cooking and prepping keto stuff for the week. It is a time consuming and labor intensive process. One of the women I know who also has a child on the diet said she likes to think of herself as “cooking to cure epilepsy, one meal at a time”. I try to think of it that way too and I hope it helps Oliver. I will do this as long as he needs me to.
Last night we had a really nice dinner. Oliver had eaten already and was just hanging out in his bouncy seat, then he dozed off with a belly full of cream, butter, sweet potato, and chicken. Jason, Tobin and I all sat down to eat and just talked about Halloween and costumes and the different ideas Tobin had for making his costumes even more fun. Kids have a way of making you forget your troubles when they get so excited over small things. It’s a good reminder of how magical and wonderful the world can be, where everyone can take the opportunity to pretend to be something else. I am really looking forward to taking the boys out this year. I haven’t taken Tobin trick or treating yet, and he’s nearly 4 years old!
We have our one month keto follow-up appointment at the hospital on Wednesday this week. We’re going to try and figure out why Oliver’s ketone levels are so inconsistent and try to figure out what tweaks and changes we can make to his diet to get it working better. I have a feeling we may end up on a 4:1 ratio, which means more butter, cream and oil in relation to the other carbs/protein he eats. It’ll take some adjusting but shouldn’t be too bad at all to print out a new set of recipes and go from there. I haven’t prepped any meals beyond Wednesday just in case they do change the ratio.
Oliver has been smiling a bit more lately. I hope that means the diet is doing some good things as we haven’t seen any other obvious changes. Seizure activity is about the same (but not markedly worse, so that’s good) and development is about the same as well. Hard to be patient when you read the stories about children who began holding their head up overnight after starting the diet. But we’ll take the additional smiles, because they are SO beautiful. Last night Oliver was pretty awake and alert after Tobin had gone to bed and I had a great time bouncing him up and down to make him smile. Then he promptly fell asleep as soon as I put him in his bed.
I hope they can figure out why his ketones aren't consistant! I read about how the keto diet cured kids overnight too and I was so hopeful. We are two months into it and he still has spasms daily. They just increased Jack's to 4.25:1 and we are seeing a little better control of seizures. But still no head control. Hang in there!
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