So, now what?

The most common question is....what happens next?
   I have come home with a million pieces of paper.  CHOP donators were kind enough to give me a binder to put all of these papers in.  Yet they remain exactly where I keep them, on the kitchen counter.  I use two main documents when calculating Cavan's meal plan.  The first is the Keto Manual I got way back when.  Seriously, if I ever lose it, I'll be screwed.  The second is the list of exchanges that the dietitians created for Cavan.  They calculated everything down to the midday snacks and the before bedtime snacks for me.
  I am documenting everything.  And I mean EVERYTHING!  I have to document his blood ketones, his blood glucose, his urine ketones, his urine PH, his blood in is urine, his bowel movements, his eating percentage for every meal, his seizure activity, his hunger level, and there is probably more but my brain hurts just thinking about it.  Why am I doing this? It helps his Keto team decide where to go next.
 At the two week meeting that we will have on October 7, the Keto team will look at what and how he is eating to decide if we are going to change his ratio.  Right now Cavan is at a 2.5:1 diet.  This means he eats two and a half fats to every carb/protein.  The Keto team would like to see Cavan get to 4:1. His body couldn't handle that in the beginning so we have started here.  They will more than likely gradually increase as time goes on.
  Cavan is still on his meds.  The Keto team wants to give him at least three months of being on the diet before they even think about weaning him off.  They want to make sure his numbers are stable before messing with his brain.  Happy to say that Cavan has been seizure free since coming home! It's so hard to say if that's the diet though because he was seizure free going into the hospital.  I guess we will see what happens when they start weaning the meds.
  So how are we adjusting you are probably wondering...
 I am freaking exhausted.  The kids go to bed around 7/7:30 and from 8-10 PM I am in the kitchen.  I have to meal plan (which is so much math!!!) and then I try and prep for the next day.  If I have enough time, I'll cook in advance.  So tonight I made three days worth of pancakes for breakfast.  You have to understand.  There's shit in these recipes that I have never even heard of! I am so not a baker.  So when the recipe calls for whipping eggs into stiff peaks, I needed to google what the hell stiff  peaks were first.  So things have taken a bit of time.  But I'm trying.  And I'm trying to find things that Cavan would like.  I also try to find things that are similar to what we are eating so it doesn't make him sad.
  How is he doing with eating?
He's a rockstar.  Seriously.  What kid takes three different meds, eats a breakfast of fat and very little carb and then bam! Takes about 16 grams of oil.  It is so freaking gross.  He has labeled it in his mind.  He doesn't mind his bicitra med.  That's "the good one." The oil is okay because he likes to watch the bubble float to the top of the syringe.  The cream he just can't stomach.  Our dietitian said that was okay because the oil is a better fat anyway.  It's healthier.
  How is Cavan mentally?
We have great moments and we have really really bad moments.  Like when he goes into my pantry and cries for like a half an hour because he wants goldfish.  And he can have like two (no joke) and only at snack time.  Not when he wants.  Or when he goes into the fridge and gets a yo baby squeezy and I have to tell him that it's not good for his brain.  He is getting smarter and saying things like, mommy can you check your list for me? Or maybe can I have that at snack time? Little things and statements like that give me hope.  It's not easy and it'll be a long road but if we can remain seizure free when we come off the meds, that's all I can ask for!