The last I posted...Dillon had lost two pounds. Then started to put them back on. Yay. But now...he is losing again.
There are good days and bad days. I learned quickly to take each day for what it is and try to make the bad days happier for him. Like letting him eat what he wants. If he wants a donut...so be it..he needs the cals.
He has started popping in his joints more and more. His back pops everytime we pick him up. His hands and feet pop when he plays. It's got me worried. Doing research usually only serves to stress me out more. Right now he is running around in just sweat pants....and looking at him breaks my heart. I don't want to count his ribs and his back bone. I don't want to see his belly stick out.
The last week he peed decently. And had diarrhea. But yay no enemas. *counts small blessings* Today wasn't as good..nor yesterday. His only urine was over flow that I can't really feel on his diaper...but you sure can smell it. It's SO strong. He didn't stool much today. So the diarrhea has started to fade away.
I keep kicking myself everytime I let him see me worry. Every tear he notices. Every tight hug I give him...he knows.
Another few weeks and we get to go to Urodynamics in Arkansas Childrens Hospital. I pray they will put him out for his test...but from what I know..he needs to be awake for it. He is having a Electromyography. It will be his second cath...and second time something was up his bum via doctors. I just know he will fight like crazy. He's so strong.
My little man is so smart...he's so amazing. He brightens up everyones day. I never want to see that light fade. I fear what could happen...damnit I can't think about that. I WON'T think about that.