Just a quick update and I will be back tomorrow to update about everything else in the past week. It was a busy and fun one. Rylee lost a bit of weight, not good. I knew this was going to be the case since we had a long spat of vomiting everything up. If we can keep her vomit free she should gain so here's to a vomit free month. At this point she may alos have CVS and dis-functional digestive tract. We will have to wait until she is a bit older and bigger to figure all that out. With in the next 3 weeks she will go back to ACH and have a mickey button put in. I will keep you updated on when that will be. Her weeks are filled with therapy, feeding tube and Dr's. We are doing our best to involve her in everyday activities. When the days are good they are really good and when they are bad they are really bad. The problem is you just never know what day it's going to be. She is looking great her face is full her hair is getting longer and she is trying to communicate. Keep praying for good days. I will update more about the rest of us tomorrow.
9 years ago