Ashley's Story

She will leave fingerprints all over your heart


Tazmanian Devil?

Do you see what my princess is wearing on her hand? What happened to the pretty, pink Barbie band aids? I guess they figure you get to wear band aids that reflect your personality for the day. Guess what? She IS acting a little more like Taz than Barbie, but at least they could have found a pink one to go with her jammies don't you think?

Ash has just finished her 3rd dose of treatment and is very, very fussy and agitated. She has been growling and grunting and trying to crawl out of her own skin. There's not much that can be done to help her feel any better. We just have to wait it out. The plan is to do another biopsy on Wednesday and see if there has been any healing at all take place in her bowel. If there is any sign of of healthy tissue then we may begin a very low rate of feedings to help promote movement and more healing. Her bowel has to regenerate new villi(the little finger like things that are found attached to the insides of the lining that move the food through the gut). If we see no sign of healing then we will begin round 2 of treatment on Wednesday. There were lots and lots of questions asked this morning during rounds but absolutely no answers. We just really have no idea how she will do. Our hope and prayer is that she remain strong and not pick up any secondary issues like infection, sepsis, an ilius, a nuemotosis, etc. Any of those things will make recovery more dangerous and definitely life threatening. I asked if anyone had ever stayed "healthy" while in rejection and I was told that one or two children had. I'm shooting for Ashley Kate to be the "third". Her daddy and I agree that its time for something to come easy for her.

One of our nurses is making a run to Target for us tonight to pick up a large rug for the floor in Ashley's room. Dave and I don't want her to lose her ability to move so this was our solution. She has worked so hard this summer to figure out how to get around and she's been down for a week now and has already become weak and shaky. I think the rug will be the key to allowing her time to play on the floor as she does at home. I'm really excited about this. It will give Ashley time out of her bed and also give me a little time without my shoes on! I can't wait to get down and play with her tonight. I think she feels worse because she is stuck in the bed. I got her to stand for just a moment or two while holding on to the couch and I could see how hard it was for her. I'm just not willing to make things worse by getting lazy with her. She needs to be up and out of bed. She wants to be up and out of bed. The stronger she is the faster she will be able to beat this thing. I truly believe that. So tonight we will be sitting in the middle of our floor building blocks together.

I have had the opportunity to just hold her close to my chest while she struggled with her infusion today and I could feel her relax and sink into me. How precious the time we have together is when she is sick. She smells so sweet and feels so wonderful. I can't imagine our life without this child in it. My arms would ache from the emptiness.

I read something today that I can't seem to shake. The author shared this..."God has allowed something in His wisdom that He could have easily prevented with His power." I have never been able to find the words to answer those who ask me "How God could still be good when all of this bad has happened in our daughter's life?" I believe He gave me the answer this morning. God did not cause these things in Ashley's life. He is not the reason she has had to fight, but He did allow this battle that He could have easily prevented to be hers. Even though I find it hard to swallow, I believe it with all of my heart. He is wise. He does love her. He still, even 3 years into the struggle, has a plan for our baby gherkin. Yes, He could have spared her, but He has chosen not to. I must believe He is using His wisdom and has reasons that I cannot see.

Its been a lonely day. A long day. I look forward to the evening because I know it will end our second day of this admission and that means we will be 2 days closer to our home. I can't wait to take her back.


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