Well, last week was interesting too. I have tried anything I can think of with cream, including whipping it, coloring it, freezing it, adding it to diet soda and a bunch of other stuff. It's going to take a while for Cole to get used to it. If we offer him nothing but cream then he will have no choice. He is taking oil pretty well when I mix it with applesauce or eggs. Plus, we found he likes Iceberg lettuce! Here I have been trying to get him to fancy lettuce and he wants the cheap kind that makes me sick :) This kid keeps me guessing.
We do however, have an announcement....
At this time, we will not be starting the official diet next week. We have decided after talking with a bunch of our friends who have started the diet here, that we are just going to wait and take Cole to Johns Hopkins in Baltimore. Dr Kossoff, the head of the ketogenic team is so responsive and has already e-mailed us multiple times. The problem we are having is with our insurance. We called them and they were not even aware that we were planning on going to Primary next week. Good thing we made that call, because they said that the diet would not be covered! If it's not covered at an in-network hospital, we know that there are going to have to be some miracles involved to get them to cover part of Johns Hopkins.
Brian and I know that this is going to be more expensive, and that we are going to have to put off starting the diet until July. We feel that it is the right thing to do for Cole. Plus, if we do end up moving back East in the fall, we will be close to Johns Hopkins. It may be that we have been prompted to make this career move specifically for our little boy.
Things can always change again, but we feel good about moving forward and trying to get to Baltimore. Maybe Grandma Tweet can ask a special favor?
Subscribe to:
Post Comments (Atom)
Hi Niki,
ReplyDeleteAppeal, appeal, appeal with that insurance company. Don't rest until they give in. I have been down that road and they will give in. Please let me know if I can help by drafting a letter or something else. Insurance companies will make you fight for your baby, but thank goodness you are an epilepsy warrior, right?
Ashley
You are definitely warriors. I can't even imagine. I am praying hard for all of you.
ReplyDeleteI agree with Ashley, appeal. I've had to appeal so many times, it is super frustrating. I always get a full medical history printed up(big bucks) and have Emma's doctor write a letter. Usually having both of those sent in helps. Maybe waiting until July will give you a better transition to the diet.
ReplyDeleteMy insurance wouldn't cover cole's either...especially since we didn't try the medications first. so paula sent a ton of info to them and they ended up covering it 3 days after they appealed it. of course after they said that...3 months later...we are still trying to get them to cover it, they haven't denied it...but we will see how much they end up paying :) it's fun huh?
ReplyDelete