The rest of the morning, he spent chilling out watching TV. He was very lethargic and rested for most of the afternoon as well.
Leeon and I were able to meet with the nutritionist and learn more about the diet. We were even able to help prepare a few meals. That was interesting. Measuring things to the gram - wow. I never knew that a drop of whipping cream could make a difference, but it does.
After his late afternoon lunch, he was able to get the leads off his head from the EEG. This is always the best moment for him. Then we were allowed to roam the hospital and made it to the indoor and outdoor playgrounds. It was thrilling to watch him running around playing WITHOUT his helmet! We haven't had any seizure activity since we've been here!!!! I can hardly believe those words. We are holding our breathe believing that this is just the beginning, but for months we've been on this rollercoaster that just won't stop. Part of me hesitates to celebrate because it will be so disappointing later if they return; but the reality is that I will be disappointed regardless, so let's celebrate the victory!
Ben just finished dinner. It was difficult because he wanted chick-fil-A nuggets. He cried and cried when I gave him his options. I reminded him why we are doing this and we talked about how fun it was to play without the helmet tonight. We talked about how good it feels when the seizures stay away and he eventually complied.
Tonight's dinner was 3 thin slices of a hot dog, 10 g and peanut butter and 10 g of butter melted together, and 30 ml's of cream. He wasn't thrilled about any of it, but with lots of praise and humor he eventually ate it all.
We are testing his urine each time he uses the restroom and he is officially in ketosis. The level is a little lower than they'd like, but it's official. We are also testing his blood sugar twice a day to make sure he doesn't get too low. His body is working hard to learn a new way to metabolize food.
We are thanking God that:
- Ben only vomited once.
- He has been willing to try the cream again despite the fact that it made him sick.
- He's been seizure free and God has been answering prayers for healing.
- Getting the leads off means that we can turn the lights off tonight as we sleep and we don't have to be videotaped 24/7! :)
- Friends and family are holding us up in prayer and helping in so many ways.
- That this is only the beginning of good things to come.
- That the high amount of fat in this diet will become easier on his tummy as well as more palatable.
- That Ben will be encouraged - I can't imagine what it feels like to him now.
- That Leeon and I can continue to encourage Ben and understand all of this information.