Ashley's Story

She will leave fingerprints all over your heart


Well....She LOVED him!

Ashley Kate knew what she wanted the very moment that toy catalog arrived. She kept that crumpled up piece of paper with her for 2 weeks and showed anyone who came by what she wanted for Christmas. I wasn't so sure she'd really love him, but I bought the hideous creature for her anyway. It was the first gift I bought this year. I think you can tell...she LOVED him! She would stop playing, look into his eyes, and then kiss him just like you see in this picture. She would hug him tight and then open and shut him mouth about a thousand times just so she could listen to him roar.

I wanted to buy her baby dolls and dress up clothes, but my girl would have none of that. Instead she received this ugly, orange t-rex, some cars, a farm, a race track, a Mater blanket, and a bunch of other nonsense that you would have thought had been bought for a 5 year old little boy rather than my sweet princess. Anyway, it was love at first sight and last night as she and I lay awake unable to sleep she blessed with a "concert" of about 5,000 versus of T- roars. It was lovely.

There has been no sleep for Ash or I through the night. She always knows when somethings up. She has cried, and fussed, and yelled, and stayed awake all night long and as morning came it continues. Ash is usually not any of these things. She sleeps all night. Loves to be tucked into her bed. Rarely cries unless hurting. Doesn't yell for anything other than a movie change, and is so rarely fussy I almost forgot she could be. Ashley Kate is happy. 99.9% of the time. I think she knows we are leaving.

I couldn't have slept even if she had. My stomach has been in knots for days. I lay awake Christmas Eve praying for a vein. Praying for ease. For comfort. For success without complication. For help. Last night, the same things. I can't find sleep or rest. I hate to fly. We will be doing that twice this week. I hate to go to UNMC. We will be there for 4 days this week. I hate surgeries, or procedures, or tests, or exams, or evaluations. We will be doing ALL of that to Ashley Kate this week. My beautiful, sweet, happy, silly girl will endure it all. Again. The last two occasions we had line attempts made my girl came out bruised and battered and in a lot of pain. I don't really expect it to go any different tomorrow. Its not "just" a line placement. Its a search. A "creation" of line placement. I assume she will be pretty torn up from it all. If things go the way we need them to and central line is successfully placed above the diaphragm. If not, then she will have wounds on her side from the removal and attempted replacement of her hepatic line. She has two abscesses on the sight and an open wound behind the exit sight now. Its so very sore, and fragile, and dangerous. Either way she will be a mess and I believe either way things go her daddy and I will be a mess too. I'm going to try so very hard to put on my happy face and be the person I need to be, but if I'm being honest I have to admit how scared I am going into this week, this year, this next transplant. Its not a happy face that comes easily to me at this time. Its more like a broken heart.

I wanted to say hello today before life got messy. I've got so much to get done today and I haven't even started packing. I'm trying to figure out how to fly with a weeks worth of TPN, Omegaven, and medical supplies, a car seat, a stroller(her chair is too heavy to for the plane), and then of course our clothes. Its going to take a miracle for me to get it all on that plane. I guess we don't have to take clothes and toiletries if there isn't room. We can always make a run to the store. The other things are non negotiable items in order to care of Ash through the week.

Not sure when I'll be back on. Hopefully tomorrow afternoon with good news. Have a great week.


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