Ashley's Story

She will leave fingerprints all over your heart



I think we spend most of her little life waiting on lab results!  I can't remember a time in her life when I wasn't waiting on a lab sheet.  This mornings its more of the same.

She looks much better this morning than she did Saturday.  I wasn't here to see her Saturday, but if Dave says she didn't look good I KNOW she must have really not looked good.

She seems to be happy this so far today.  Not complaining about anything or telling me anything hurts.  She's just playing on her Ipad.

Last week the transplant team wanted me to get Ash in for some liver biopsies.  I got that call moments before I got the call about my dad.  Obviously something had to wait and so the biopsies were not scheduled until I knew if my dad was going to stabilize.  He has done very, very well.  The recovery is not easy and he is in a lot of pain, but I'm so proud of him.  He's working so hard at everything he is being asked to do.  Working through the pain.  It does not look like discharge will happen tomorrow like originally we had planned.  There are a few issues that have come up and need to be worked out.  Heart rate, kidney, etc.  Normal post surgery stuff.  I know he is ready to get home to begin his recovery.

I will begin making phone calls as soon as I get Ashley's lab results.  We will plan to keep her near home and have them done in Shreveport rather than Omaha.  I dread the whole idea of liver biopsies and if there is any other option then believe me we will pursue it for her.  I also dread a course of IV steroids and the hospital stay they bring along with them. Getting her out of the hospital is never simple.  Physicians like normal lab results.  NONE of Ashley Kate's lab results are normal anymore.  As disease progression begins we begin to realize they may never be again.  You have to be willing to accept that her body is broken and those labs are never really normalized.   Ash has grown up a lot since her last days in the hospital and keeping her occupied and content will not be an easy thing to do.  Unfortunately her liver is sick again.  I've seen it get sick and then get better a few times in her life so I'm hopeful that one day soon that lab sheet I'm waiting on will begin to show a turn around.  Explainable or not, I just want it to stabilize and give us the opportunity to keep living the life she enjoys so much.

As the world I reside in gets a little rocky I can't express how much I love the people who reside in it along with me.  My dad is precious to me.  My Ashley is so very precious to me.  To watch anyone whom you love so dearly struggle is a very difficult thing to do.  Let me encourage you to love on your kiddos today.  If they have strong and healthy bodies whisper an extra word of gratitude for that blessing in your life.  Tell your parents how much you love them.  You only have one mom and dad.  I'm so very thankful for mine.


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