A week later we went to see our favorite neurologist. She explained to me that this is what we wanted. This is exactly what we were hoping for. She looked at me and was like Mom... are you ready for this? I looked right at her and said. NO! She laughed and told me I said the same thing when we were supposed to wean him off his medications. I am not a huge fan of change. I despise it and am scared of it. I hate new beginnings. She then again looked right at me and said- He’s ready Erin. Sigh. She’s right. He overcame having 22 seizures per day! We busted our asses to make food for him for THREE years! He is perfect. And yet I am so terrified. Like what if he starts seizing again after we take him off the diet? What if his ADHD flairs when we remove the diet. She had answers for everything of course. I mean, she’s a freaking brain doctor. Of course she does. I just needed to trust in everyone. The diet, the plan, Cavan, her, God! Okay- time to wean.
Our goal is to have him completely off the diet by the end of October. Holy shit. That’s fast. But they wean him .25 down every two weeks. Since his diet is low to begin with, then it wouldn’t take long to wean him. We have started and are about half way through. He is now getting so much kore food then he is used to. He actually ate chicken parm tonight! No joke- I mean, I had to weigh everything but he ate it! He is loving getting more carbs- we are trying to be really careful about how much sugar he is getting etc. I just want him to be okay, you know? Like we’ve been good for three years. But he isn’t growing. He’s way behind on the charts on that. He needs to have his bones scanned a lot because this diet isn’t great for long periods of time. And I know that. I just need to trust in the Lord (and the docs!) that this is what is right for him. Because ready or not- we have begun to descend. I’m just hoping for no turbulence along the way 😉
