So I have been meaning to write an update, but I just haven’t really had much good to say. And I usually try to put a positive spin on things, and I am not really sure how to do that right now.
Maddie is still on the ketogenic diet. We have seen no improvement whatsoever. Seizures are a little different, but she has seizure activity a larger percentage of the day than before the diet. So that isn’t good. But the hardest part is that she has also regressed on the diet. We are not seeing that improved clarity that we once thought we were seeing and that so many parents love the diet for. So things are just not good here. It has been three months so I am in the process of trying to make a decision whether or not to continue the diet.
The positives are: that Brandon is okay, but is very busy. We are approaching the halfway point of his deployment, so that is exciting.
Another good thing is that Maddie and I have actually been living in our house in Camp Lejeune and enjoying getting to have our own home again. It means that I am very busy with the food preparation and other household chores which are difficult with a child who has seizures all day and wants to be on my hip all day (or all night) long. She currently has day and night confused again, so that is a joy too.
And another positive, Maddie and I were just in Charlotte for her monthly oncology appointment and her bloodwork looked good. So we believe her leukemia is still in remission. Hooray for that!
And somehow I just managed to sound positive…..not sure how that always happens. Please keep Maddie in your prayers. She desperately needs them.
I will try to update more frequently, but I’m not making any promises……
Love to everyone,