Ashley's Story

She will leave fingerprints all over your heart


Christmas, Fevers, Infections, and Labs

I want to start this post with a few(ok, several) pictures of Christmas in our home this past week.  We were so blessed to have all three of our children together for another year.  Having Ashley home this Christmas has once again solidified in our hearts that we are making the best decisions for her that we possibly can at this time.  I truly believe had we jumped back into transplant early on as we once thought we would that she would not have been here with us celebrating yet another holiday.  This years holiday pictures are bitter sweet.  I think I use that phrase a lot when describing life with Ash, but its the best I can come up with to describe how very sweet it is to have her in our lives and yet how very bitter it is that her little body is so broken.  Its becoming more and more evident in her photos that her skin has turned yellow, she is swollen, and her the whites of her eyes are now gone.

On Christmas Eve we took Ash for a drive to see Christmas lights.  We've done this several nights the last few weeks.  She is happiest when riding in the car and as we drive through the light display she always signs "more, more, please" as we approach the end.  Of course we take another turn right back through it again.  Some nights as many as three or four times.  She was feeling pretty good on Christmas Eve.

Since Ash was having a good evening we decided to come back to the house and open gifts rather than waiting for Christmas morning.  Our big kids were happy to oblige and had no complaints about our little plan.  We don't usually open gifts on Christmas Eve but we decided to go with it since we didn't know how she would be feeling Christmas morning.  I'm so glad we spent the evening doing this.  

 Ash was very happy to finally be opening the gifts she'd been trying to get into for days.  She smiled a lot and enjoyed the whole process.  We stayed up late into the night playing with her toys and I don't think she actually settled down for bed  until after 1am.  Sweet memories.

Blake and Allie were so very thankful for their gifts.  They never ask for much and so Christmas is always a little bit of a struggle trying to figure out how to bless them in the best way.  The smile on his face and the

tears in her eyes were enough to let me know we had done our job well.

By Christmas morning things with Ash began to take a little turn.  She wasn't feeling very well and did not want anything to do with Christmas stockings or gifts for a while.

The look on her face pretty much sums up how awful she was feeling that morning.  Not a lot of joy or happiness to be found.

Ash just felt crummy for the first few hours.  Eventually she did begin to perk up and enjoy her self some.  

Looking through her stocking with Daddy.

Finally tearing into her packages.  Slowly, sweetly, with little tiny, "yeahs" as the contents were revealed.  Precious holiday memories I was making mental notes of with our tiny girl.

Surrounded by race tracks and cars she was a happy girl.  Despite her fevers and feeling crummy she did her best to play all afternoon.  

By evening we were all in for a magical surprise when snowflakes began to fall in TEXAS!  It was so beautiful.  Very fun and a perfect way to end my favorite holiday.

This is one of my favorite photos of Christmas 2012.  Our sweet girl, snowflakes still in her hair, warming up by the fire.  Something about the image makes me smile inside my heart.  Yellowed skin, swollen face, broken body...I still find her beauty breathtaking.

By late evening Ash began having fevers.  She was feeling crummy and wanted to be in her bed.  Her fevers are concerning since she is on and has been on some very strong IV antibiotics.  She continues to battle two very ugly bacteria in her central line.  One of them is a gram negative and the other is a gram positive bug.  The fever lasted all through the night and for the entire day yesterday.  She spent most of yesterday sleeping through them.  They did break for a little while through the night, but by this morning they had spiked again.  Along with the line infections and the need for antibiotics her liver numbers have gotten significantly worse.  The lives is struggling to process the drugs needed to clear the bacteria from her line.  We have watched what little progress she was making in her liver disease over the last two weeks slip away as we read over her latest set of labs.  My heart hurts over this, but I am hopeful that once she is off the antibiotics she will once again show us some improvement.  Any level of improvement is cause for a celebration at this point.

In light of her illness, her struggling liver, line infections, and fevers I feel so very blessed that she remained stable enough to spend Christmas at home.  We have a very good local team of professionals who do everything they can to keep Ashley at home where she is happiest and most comfortable.  I can't thank them enough for coming on board with us to give her the best quality of life that she can possibly have.

I would have to say it was a very Merry Christmas and we are so blessed.  I thank you for your prayers for our little one, for our family, and for clear direction as continue to navigate our way through this very messy time in Ashley's health.  Your presence in this place along beside us is felt every single day.  Thank you for loving us.


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