Ashley's Story

She will leave fingerprints all over your heart


No regrets...We'd do it again...

...even if only for a day.

Ashley Kate and I spent the night in an Orlando Children's hospital. We are now awaiting our flight crews arrival to take us back to Omaha.

She looks...great. Her lab work...does not. It appears as though her gut continues to be in rejection and is spilling albumin and sodium by the bucket fulls. Her white count is elevated and the word "sepsis" is being thrown around pretty freely. She has no fever, is breathing well, shows no real signs of being ill. She's not exactly herself(a little puffy from all the fluids they are pumping and a tiny bit grumpy from needles and such), but all in all she looks to be pretty stable. The main issue is what Dave and I have suspected all along... ongoing rejection. Her bowel has yet to heal from the episode that began in early October.

So all though my eyes have shed many tears from frustration, disappointment and exhaustion, my heart is MORE than grateful to have had this few days here at the castle with our children. Dave and I would do it the exact same way a thousand time over to have made the memories we have this week. In our opinion, the Lord pulled a "fast one" on everyone and made this last week possible for us by giving Ashley Kate the needed numbers for our discharge last Saturday in time to take this trip together. They could find no reason to keep her in the hospital and sent us on vacation with their blessing. She is still not well, and we all know that.

Dave has kept the kids busy at the parks. They are sad, but still happy. They each wrote us a note and thats what caused my tired self to fall apart this afternoon. The words and pure appreciation that came from the hearts of my children as they shared with me that they had no regrets about bringing Ash to Disney touched my heart. They sent their love, their prayers, and their precious, precious appreciation for each day they spend with their baby sister. They were truly grateful to have had her with them the last few days and to allow her to experience a little bit of magic. I wish you could have seen her eyes light up moment after moment after moment. I will never forget this experience. There have been some tough moments and some touching moments this week. I sat next to my son on main street and cried with him as he watched Ash enjoy the lights and music of Spectro Magic. His heart is broken over her broken body and how I wish I could take the hurt away from each of them.

Sorry, the crew just arrived. I'll share more later once we get settled.


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