Okay, you win!

Sometimes as we move through life in our bubble of all is perfect in our world, Cystinosis gives us a kick, well maybe not a kick but more of a tap, as if to say "Hey! I'm here. Don't forget about me!" Landon has great days and seems to feel well most of the time. So it allows me to forget about precautions that we have to take. Some with Cystinosis do not sweat which results in overheating easily. Landon's nephrologist has asked me if I notice whether or not he sweats. My response is that I really haven't noticed but that he seems to handle the heat well. He does for the most part but we have to be very observant of when he is bit drinking a lot and when he is becoming overheated. I am realizing that he probably does not sweat and I really hoped that would not be the case. Today we went to Seven Springs for the Autumn Festival this afternoon on this almost 80 degree day. The sun was bright and there wasn't much of a breeze. Not long after we began walking around, with the boys in the stroller, Landon seemed tired and moody. He didn't get a nap so I didn't think much of it. I grew a bit concerned when he didn't want to eat and then had to be coaxed into drinking his water. My sister noticed at one point that he felt warm so took him inside and stood under a fan. He seemed to perk up. Jimmy and I walked both boys around soon after hoping that they would fall asleep for a bit- they didn't. Landon seemed ok but tired. We left around 4 and drove home. He fell asleep for a little while but when we got about 30 minutes from home he started to cry. Before we knew it, he threw up.. We pulled over on the highway and quickly changed him. When we got home he was crying over everything and didn't want to eat dinner. I asked him to use the potty and he cried that he didn't have to go. By this point, he hadn't gone in 2 hours which is unusual. We decided to try to get water in him through his G tube. He threw up.. Jimmy and I jumped into problem solving mode- getting him into the bath tub and cleaning up his vomit. We got Jordan ready and into bed and gave Landon cuddles on the couch. We were able to get Tylenol and Pedialyte in him so we are hoping to keep him hydrated throughout the night. Lesson learned for this mommy.. We have to be extra aware and extra cautious when we go on these outings and expose him to the heat. Cystinosis will not stop us but we have to allow it to slow us down sometimes, just a tiny bit!