For two weeks, Lucas has been on the Flovent, Nexium, and food elimination (wheat, eggs, and corn). Tomorrow, we remove the Flovent once again. I'm hoping for the best. He's had 2 episodes and those seem to be when he's sleeping. Again, I didn't hear him cough in the middle of the night to know when he's doing it. I only know because his sheets/covers/PJs are covered in dried up vomit.
The diet seems to be going well. It isn't easy but it's getting better and more manageable. I have let Lucas help make some of his food and he's been helping pack his lunch for school. We've talked to him about wheat, eggs, and corn and what those types of food do to him. He does get disappointed when he can't have something but I'm doing good about highlighting what he CAN have.
We went out to dinner a few days ago. I ordered Lucas grilled chicken and fries. For the first time that I can remember, he DIDN'T cough during the meal. It was refreshing and gave me some reassurance. It's a moment that I will hold on to. Just like when he rolled over for the first time or took his first steps. I know he has a long road ahead of him so I'm enjoying these small victories.
My hope for the next two weeks is that he continues to do good with the Nexium and elimination diet. I check back in with the nurse at that point. I'm a little nervous about removing the Flovent again but it's the only way for now to know how he's truly doing.
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