Good night, again

How frustrating! I typed a very long message and then it just disappeared from the screen. I have no idea what happened, but I will attempt to re-do a little of it.

Ash is now awake and fussy, but earlier as I was typing she had just drifted off to sleep after we had given all of her 9:oo meds. It takes close to an hour to prepare and give them all. So far she has been still enough to hold them all down, but now she is stirring and I am praying that she does not begin to lose them. Tonight I counted her list of meds for the kids and there 15 scheduled meds and 6 as needed on her list of daily medications. This is so unreal! It is so hard to believe that her tiny body can take so much. The immuno suppresive drug is the hardest for Ash. Within minutes she begins to whine and get cranky and start feeling miserable. This is also the drug that causes her to lose her hair. It amazes me how this one drug can be so vital to her survival but yet it is also so devastating. (O.k. maybe losing your hair isn't considered to be devastating, but when you are attempting to raise a princess good hair is pretty important.) I am just glad we have a large supply of those big hair bows. Theres not too much a good hair bow can't cover up!

My heart was so blessed as I talked with Blake and Allison tonight. They are thrilled at the possibility of Ash being released from the hospital. Dave told me they actually had tears in their eyes as he shared with them the potential good news. They were genuinely excited. In my opinion the two of them are carrying this load pretty well, and they have never one time complained about me being gone. They just want so badly for Ash to be well and to be allowed to move home. My heart is smiling at the possibility of seeing all 3 of the kids tucked in around the tree in their Christmas jammies. I know Blake is cringing at that sentence but he loves me enough to put up with it for my pictures.

As we think about the potential of leaving the hospital in the near future, I can't help but to think of all of our new friends. Please remember to pray for Chloe, Skyler, Caroline, Davian, Timothy and Mariah. Each of these precious children are struggling and succeeding at different places along their transplant path. One thing they have in common is the impact they have made on my heart. I will never be the same after knowing them and loving them. Transplant has bonded each one of these to my sweet Ashley and to my memory for a lifetime. God has truly used Ash's illness and transplant as a gift in our lives. It has opened our hearts to children and families who we would have never known without it. It may be difficult to believe me when I say this, but I am truly thankful for the journey we have taken with Ashley's transplant. We would not be the people we are today if we were not traveling this path. He has used it to shape our faith and to inspire us to live a life worthy of Ashley's gift. How can we be silent about the goodness of the Lord? As we watch Ash struggle, then become strong, then struggle, then become strong we see His hand on our daughter's life. He is molding each of us by writing her story on our hearts.

Tonight as I lay my head on the pillow and I listen to my little one sleep, I am so excited and a little frightened about the future. If we are allowed to leave this place and start our new life in our new apartment, it will be thrilling and it will be intimidating. Once again He is growing me and showing me the strength I can find in Him. Ash and I will become independent girls, figuring out how to get around in a strange new place and figuring how to live life after transplant. I know we will face many challenges, and the probability of us returning to the hospital is very, very real, but I also know that we will never be alone. He will be with us every minute of every day and somehow it makes it all seem "doable" to me.

I am going to go lay down for an hour before it is time to start the midnight medications. I want to tell each one of you who continue to be a part of Ashley's story on a daily basis, that you are loved and appreciated. I am glad you are still with us and I am thankful that you will be with us as the Father begins to write another chapter in her story. I hope this next chapter begins with the sentence, " We made it out." Good night and may the God of all creation (including transplants) make Himself known in your life too. Love Trish and Ash