Ashley's Story

She will leave fingerprints all over your heart



Ashley Kate's very own Christmas Tree

October is FINALLY over and behind us and now we can all concentrate on celebrating the most amazing time of the year.  I'm always sooooooo excited come November 1st.  Nothing but happiness from now until the new year.  At least that is what I am hoping for.

I have finished almost all of our holiday decor.  I still have to work on the lollipop tree in Ashley Kate's bedroom, but once that is complete then we are ready for Christmas.

The lights are glowing in every room of the house tonight, and there is nothing I love more than sitting in the stillness of this room once everyone else has gone to bed and just being.  The sounds of traditional Christmas are playing and scent of Yankee's Christmas Cookie is burning.  My world is so close to right at this moment.  So close.

Ashley Kate lie sleeping in her tiny bed tonight.  That's the key to my world right there.  My tiny girl spending her days and nights here in our home.   I peek in at her and my heart aches with the burden of the unknown.  I can't help but feel the twinge of pain that shoots through me as I wonder how many more nights we will have here with her at home.  How I hope and pray she will be here for the holidays.

Her labs are still concerning to all who pay attention.  Her liver numbers are still showing signs that something is not right, but they are beginning to stabilize a little.  Her bilirubin has held its place for the last 3 sets of labs and her liver enzymes are improving with the last 3 sets as well.  Things aren't good, but they don't seem to be continuing to get worse.  I was so hoping for an amazing turn around that would put a halt to all talk of liver biopsy, but it looks as though that is not to be the case.  Tomorrow morning I will call and schedule the biopsy day and time.  My heart hurts so much just thinking about putting Ash through it.  My prayer would be that a change of heart would take place when the transplant team sees her numbers from today's labs, but I don't expect that to happen.

Ash is sick.  She doesn't really know it, but she is sick.  Dave and I both know there is something wrong inside of her tiny body and it is trying to fight against it.  There is an infection brewing, but we don't know exactly what it is or where it is coming from  Ash is holding her own though.  She is swollen and uncomfortable.  Her face is so huge.  So deformed from the swelling caused by her steroid treatment.  It looks so painful.  She has very few recognizable features right now.  I refuse to take her anywhere because I want to spare the kids from seeing the stares and hearing the comments that always come when people see her like this.  It breaks my heart.  Ash has always had severe side effects from steroids.  More so than so many other transplant kids I know.  She just struggles so very much when she is forced to be on them.  Her quality of life soars once the treatments are stopped.  Unfortunately this happens to be the only treatment or defense against rejection.  I keep telling myself this is temporary.  Just a short course to give her back the quality of life she is used to.

We took more blood cultures and lab work to the hospital today.  We are searching for answers.  I'm hoping something will show up so that we might put the whole issue of rejection behind us.  I dread the idea of putting her in the hospital for IV treatment of rejection.  I guess we just won't know anything definite though until we get the results from a biopsy.  I really hate to put her to sleep right now knowing that she's fighting a bug.  She's having some upper respiratory issues, ear aches, and a few other issues too.  Mixing all that with anesthesia scares me, but I think I don't have much of a choice.  If we are told we have to do the biopsy then we have to do it.

Anyway, at least for tonight I know she drifted off to sleep under the glow of the Christmas lights and to the sounds of Silent Night.  Precious, precious days we are living here in our home with that sweet little girl.  I can think of nothing that makes me happier than having all 3 of our children here at home each night.


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