It's been a couple of weeks, so I thought I should post an update on Ben's health. But before I get to that, I'd rather start with some happy stuff. This past weekend Ben and I made it into the Magic Kingdom for a couple hours. He was very excited to be going, and he seemed to enjoy the fresh air and sunshine, but his stamina only held up for about two hours before he had to leave. While we were there, though, we did try out the new DAS system that has replaced the old GAC cards (more on our experience with that tomorrow), and Ben got to visit with Snow White for the first time at the new Princess Fairytale Hall. For a few minutes, at least, I got to see Ben happy and excited.
Ben meets Snow White for the first time at the new Princess Fairytale Hall
One very nice touch inside the new meet & greet is that they have prominently placed a Snow White storybook on a display table between the meeting spots for the two princesses in the room. I thought it was a great way to honor the location as a nod to Snow White's Scary Adventures. Ben liked the book a lot.
Ben points out the storybook that commemorates the former location of Snow White's Scary Adventures
As I said, as much as Ben enjoyed visiting the park he only lasted about two hours before he was ready to leave. That has very much been his standard mode since the last surgery. If you were to look at him at any given moment he seems perfectly fine, just happy and bubbly and his normal self. Then, after any short burst of energy, he is ready to sit down and take a break. Those pictures were taken on Friday evening, and not only did he sleep like a rock that night, but he spent all of Saturday being very low-energy and not wanting to leave the house. By Sunday he was raring to go out again, and we returned to the Magic Kingdom, but our visit consisted entirely of Ben walking into the park, sitting by the Teacups for a while listening to the music from Alice in Wonderland, and then walking right back out. Including a short visit to the Fantasia store at the Contemporary hotel, Ben was on Disney property for less than 90 minutes.
On Monday Ben tried going back to school for the first time in weeks. It would mark the fourth day of school that he has attended since his current illness started at the end of August, and I had high hopes for him. I really thought that he would have a great day at school, with plenty of engagement combined with plenty of opportunities to take breaks as needed and rest at his desk. Instead, he lasted only two hours before his teacher called and said he needed to go home. He had been trying to use the bathroom, and was crying and appeared to be nauseous. He still has that giant stone blocking his pancreatic duct, and even with the larger stent in place to allow the pancreatic fluids to drain it is clear that he is still significantly impaired by that stone.
He stayed home again from school again yesterday, and is attempting school today since it is a shorter day. We'll see how it goes. Hes next surgery should be in three weeks, and the doctor expects that the stone will finally be able to removed this time. I sincerely hope that Ben gets relief once the stone is gone, because if he doesn't then the next step is pretty grim. Even once this immediate medical situation is resolved, the presumption is that this is going to be an ongoing, lifelong battle for Ben. The Atypical Cystic Fibrosis is going to keep attacking his pancreas, and at some point he will almost certainly need surgery to completely remove it. It's not quite the fairytale story that we would hope for, but that's the reality.