Reminders

We will be having another scope of Ashley's bowel done this afternoon. Still trying to determine if, when, and to what degree the bowel has been affected by this "illness"(rejection/virus). No one really knows what has happened or what is going on. The important thing to me is that everyone is trying to figure it out. Ashley continues to show signs and symptoms of rejection of the small intestine. Things like high stool output (1700cc's or more in a 24 hour period) this is an indication of rejection as well as sluffing off of mucosa and tissue that was seen in her ostomy bag this morning. Obviously these things concern me and cause me to be a little frightened about the course of action that will be taken(including the prescribing of difficult drugs for Ashley). She no longer has fever, nausea, vomiting, episodes of rash or other indications of viral infection. She does have a nasty cough and is receiving CPT from respiratory therapy to help her with that. Although she is still struggling I am reminded of those things that have been resolved for now and I am thankful.

As her mommy of course I am emotional. Of course I struggle with things that are done to or for her. I want the best possible life for her. Of course I have questions and would like explanations. I think that any parent would feel the same way in this situation. This is not an easy path to walk. It is difficult at times, but it is also blessed. Even though I may struggle and disagree it does not mean that I have forgotten all the blessings that have been scattered across this path. I do believe we are in the right place for Ashley, but I also believe that a responsible parent would do everything in their power to be informed and to understand the course in which her recovery will go. It does not mean that because I question decisions made that I dislike our team of professionals. What it does mean is that we will talk it out, work on it, and come to an agreement of some type. Although it is not always easy to get to that point, we will work together for the best interest of Ashley Kate.


To be away from home again and to return to the very same room where we fought through so many uncertain days and nights is tough. I won't pretend that it is not. If that offends anyone out there reading this journal than I apologize, but I would remind you that no one is forcing you to read along. You of course are welcome, but if at some point you decide you don't want to be here anymore you certainly have that right and I would do nothing but thank you for your time and prayers spent here. I just get the feeling that some of our readers are very hostile towards me or us or our family and I thought those of you who are should know that we realize you disagree with our decisions, our emotions, and our life style.

On the other hand I am reminded that after a long night of struggling and searching that God is still with me while I am in Omaha and He knows all about each and every difficult day. Ashley and I are here for now and He knows exactly where we are. I can be assured that He is not scratching His head wondering what to do next. He knows what today and tomorrow hold for our family and for our daughter.

Again I am reminded of how many people love and pray for our daughter daily and it humbles me. You are more than loved and appreciated. Thank you again for choosing to be here today. I will let you know if I find out anything more about the rejection of her bowel. For now we continue to wait and pray. God bless you my friends. Trish