Last night Ashley Kate gave me my first hug. It was the sweetest moment of my life. I watch her hug and squeeze her daddy over and over again and it warms my heart, but to have those tiny arms squeeze me with all the love she can muster was so very sweet. I thought my heart would burst! My eyes filled with tears as I told her over and over how very much she is loved.
Things went very well today. I was so scared about the removing of her central line. When Ash was in the NICU we watched as the doctor removed a central line in one of her roommates and it was brutal. It was the only experience we had to draw on and it was very frightening to think that Ash would have to endure that today. Her experience was nothing like we had witnessed. It was quick. It went smoothly. It was better than I could have hoped for. For the first time in two years I did not have to care for her line before tucking her into bed.
Our clinic visit went very well. Ashely is no longer taking ANY steroids! YEAH!!! We were able to stop three more of her medications and by the end of September she will only be taking her anti-rejection. We have gone from a list of 15 to 1! We are so excited for her! We will also be down to taking only one set of labs a month. This was such good news to us. That means that Ash will only have to be stuck for blood draws one time each month. This makes me smile. I really did not expect them to say yes when I asked, but when they did I smiled inside. We discussed the possibility of using horses in Ashley's physical therapy and the answer was no. They said that she has been immunosuppressed for so long that it would not be safe for her right now. Their answer was no for now but not no forever. We will re-visit the idea in a year. As we were leaving they said to us, "We would like to see you back in clinic a year from now." Can you believe that? A year from now? YEAH ASH!!! We will consider the possibility of her take down surgery next spring but we really have no idea if we will be ready to go through it at that time. We will just wait and see.
Its been such a positive visit. We met with friends each day and enjoyed their company so very much. How blessed we are to have met them all. Most of the people we came into contact with while in Omaha were absolutely wonderful and I believe with all my heart that it was not an accident that we came here. We will forever be changed by the friendships we made.
Well, we have decided to begin our drive tonight. We are going to lay down for an hour or two and then get up and drive as far as Oklahoma. We hope to be on the road by midnight. I am going to join Ash on the bed and close my eyes for a couple of minutes before heading out. I will visit with you all tomorrow. Goodnight and God Bless. Trish