Spring Time!

So as spring arrives, we are having a lot less trouble with Kaesyn. He has crackly breathing sometime, and he still wheezes at times as well. But all in all he is doing good, and his oxygen stays up to. Infact after his sleep study, we are sending his oxygen tanks back. We went to the GI doctor, and he pretty much such of course he has acid reflux and of course its going to bother him with the TBM he has. So we are going to continue the 30mgs a day of prevacid, and we go back to see him in the next 5-6 months! We also went to see Dr. Escobar, and he is confident Kaesyn will be just fine, which we all knew, and wants us back in 5-6 months as well. It kinda saddened me in a weird way that we wont be seeing Dr. Escobar for that long..lol. He is one amazing Doc!
We talked a bit about him going to phildelphia (CHOP) and Dr. Rosa will be sending everything they need so that they can see if there is anything they can do for Kaesyn. Im kind of stuck and not sure what they CAN do because right now he is doing pretty good, but if he got sick again lets say next winter, we couldnt just send him there immediatley it takes a lot of time to get him in. But I guess we will see what they say and go from there. I just dont know what next winter will bring, and I dont want him to have to go through all that again, I dont know if I can handle that again, and it was hard on Gabby as well. I want to say that hes in the clear until cold/flu season comes again, but it is also allergy time, I really hope we dont run into problems with that.
I hate constantly being on my toes, if he feels warm, or has a slight fever, I automatically freak out. If he coughs or pulls on his ears, I automatically assume the worse. I know people think that I over react, but thats what Im used to, a month ago he had an ear infection and it put him in the hospital. So of course Im going to over react and Im going to think the worst. I try to stay positive, but its not easy. I really think that as time goes on with him being better, I'll be better at that.
We had a great time in Oklahoma, and it was SOO good to see everybody. I cant wait til I get to see everybody again in July, although that seems FOREVER away. Im so excited for summer time, and for Gabby to be home with us all day! ( I say that now:D)