A New Chapter

So we went to CHOP this morning. I had to wake up at 5 AM just to get our stuff together. It was brutal. Cavan woke up at 6:15 (thank God) because we had to be out the door by 6:30. He got dressed, hair spiked and took his meds and we walked out at 6:29! Granted I don't think he brushed his teeth but hey- beggars can't be choosers. 

  We got to CHOP at 7:30. We checked in, he got weighed (he grew a quarter of an inch and gained over a pound!) and then they took us in the back. Our first appointment is with the Keto team. They go over his bloodwork, check his pee stick numbers and go over his blood sugar. They ask me questions like how is he behaving? Do we notice a Big difference etc... This part takes 2.2 seconds because we are lucky enough to be able to say he has been seizure free for four months now. We tell them all about the good things we see and how well he is doing in school. They seem surprised and say- wow! We love appointments like this and it makes me realize how lucky we are. Not to get all sappy and stuff but we really are so lucky he is responding to this diet. 

  After the Keto team leaves, we then meet with our dietitian. I actually had a lot to talk to her about. Cavan hasn't really been finishing his meals.   He fights me and he fights his teacher about eating. It's frustrating as hell. I feel like I am force feeding him a lot and I am lucky he's not gagging it all up. She decided to change his numbers a bit and lower his calories to see if that makes him hungrier for meals. Hopefully then he will be devouring food instead of looking at me like I am crazy when I am trying to spoon feed him. She also gave me some tips on how to incorporate fats better. He hasn't  been doing so well with the squirters (syringes of oil and cream). I don't know if you know this but I have been driving to school everyday just to feed him his squirters. Yeah, not so much fun when school is 12 minutes away and you have two babies who are very close to naptime that are in the car with you! So I am going to try and use some of her ideas and see if they work. 

  After we meet with the dietitian, we can finally meet with our neurologist. She seriously kicks ass and if it were up to me we would be drinking together on weekends. I was very honest with her and told her my fears and concerns and pretty much said that I didn't want him to seize all over the place again. She was very confident that Cavan was doing well enough that we could begin to wean the Onfi. GAH! So so excited and yet it's like shit! Now I have to watch him 24/7 again and see how he does. Hopefully the diet does it's job and just replaces his med. we took him off of his midday dose. It's going to be a really slow wean. Brain drugs aren't to be messed with. So after a while with him not on the midday dose, we will talk again about removing another dose. Verrrrrry slowly. I am okay with that.  So today was day one of no Onfi in the afternoon! Crazy. But in the right direction! 

  Cavan was so done after all of these appointments. Poor Dr. D got to see the ugly side of Cavan as he screamed in her face telling her not to touch him. So we left quickly and definitely not quietly as he spilled my full mug of coffee all over the neurology floor. Awesome. 

  But we made it out alive. And I was able to go to Winter Theme day at school with him. He was so excited! We have been toying with the idea of holding him back a year in school. But let me tell you- I was so impressed with how well he did today in the classroom setting that I'm not sure that would be the right choice. More on that later! I'll leave you with a pic from winter day at preschool. I made snowflake ice creams for everyone in the class today! He was so happy he got to share his snack! One of the boys liked it so much he asked to take all of the leftovers home. I call that success. Hell, I guess the whole day was successful. And now- wine!