Back in the spring, we started making plans for a camping trip in our pastor's camper. The kids have been looking forward to it for so long, so after Nate's therapy appt on Tuesday afternoon, the chitlins and I packed up and headed north a couple of hours to spend the rest of the week with our pastor's wife and son at a campsite by the beach.The campsite was absolutely beautiful in a "roughing it" sort of beauty. Huge moss-covered live oaks draped over the palmetto lined roads. Signs were posted warning against feeding the alligators, cats (as in big forest cats), raccoons and possums. The nearly deserted beach within walking distance to the camper housed numerous orange nettings, each signaling a bed of sea turtle eggs. The entire scenario just screamed "Florida".
The kids instantly fell in love with the campsite the moment we arrived. All three spent the first couple of hours running up and down the bike paths and trails, chasing numerous armadillos and catching baby lizards. Nathan gathered sticks and rocks and ran around like crazy. I can't remember the last time I saw him so excited. He was in every boy's paradise, and he clearly didn't want to miss a thing (except of course when breaking from the adventure to play his beloved ipad).We spent a good portion of the time riding bikes around the campground. The girls had their bikes, and I rode the three-wheeled bike that belonged to Sister Sherri so that I could carry Nate on my lap. I literally fell in love with that bike...it was so comfortable and fun to ride. One morning, the kids (who wake up way before anyone really should) and I took an early ride to the beach to let John and Sherri sleep in peace a bit longer. We came upon a couple of park workers digging with their hands in the sand, searching for something. It was then that we saw the amazing flipper prints leading from the water to the spot where they were digging, signaling a sea turtle's assent to the shore to lay her eggs while we were all sleeping.
The trip was just about perfect...except for one thing. Poor Nafey boy has had a terrible time over the past few days with slowing stomach motility. He was barely eating when we left, but he was still doing amazing. I didn't think twice about going, as he had excellent energy and seemed to feel just great. However, he threw up whole undigested food Tuesday night...twice. After a nap the next day, he seemed to feel great and wanted to join his sisters who had been at the beach for some time. We went (hindsight is 20/20, as I now know that this was probably not the best idea), and he loved it. The kid truly does love being at the beach...jumping over the waves, trying with his might to kick the wave out of the way before it splashes him to pieces, sitting in mini-swimming pools that older kids make for him...he loves it. But really, they all love the beach, much to my beach-loving approval.But the beach seemed to do a number on Nate's already weakened system. He took a nap in my arms, but he was clearly struggling after a little bit of playing. He had a small fever when we returned to the camper and vomited whole blueberries that he had eaten numerous hours earlier. His stomach was just not moving much. The little guy drank enough that night to make to feel more confident in staying and just taking it easy the next day to help him regain some energy and hopefully get his stomach working again.However, the next day was worse. He couldn't walk without staggering, and he couldn't sit without support. But it was when he couldn't hold a popsicle and kept saying "It too heavy" when I realized that we needed to head home in case he needed some IV fluids to get him over this hump. Emma, clearly torn on whether she should stay or come home with me, decided to come with us after all. Abby, in search of more adventure of ghost crab catching, beach, and the water park, decided to stay.It was so hard to leave a couple of days earlier than planned, but I felt so much more comfortable with Nate being closer to our hospital. It still shocks me how quickly he can decompensate. Thankfully, the little guy rebounded a bit at home last night and was able to eat a small amount of food and keep it down. And today, he is doing great...tired and the crankiest little cuss I know, but he is hungry and eating some. This period of slower motility has left him almost 2 pounds lighter at 23 pounds, so I am hoping he can regain that nice cushion of weight rather quickly again.It was a short trip, but it was fun while it lasted. The unpredictability of this disease sometimes robs us of the moments we plan, so it sure does help to enjoy every little ounce we can squeeze out of these times.