Thankful Hearts

Its been a beautiful week.

  Our hearts are so very thankful to have Ashley Kate home with the family even in the midst of some new/but familiar struggles.  This marked her 3rd thanksgiving here since ex plant.  I can remember how the first year Dave and I would wake each morning and breathe a sigh of relief to find her still with us, still breathing, still resting along side our bed.  Those were hard, hard days not knowing if survival were a real possibility of not, but hanging on to the hope that she would indeed spend another holiday season with us.

She is feeling ok.  Not as good as we like her to, but still good enough to enjoy her days playing and resting and staying here.  We don't see as many smiles or hear as much laughter as we have grown used to, but there are smiles and there is laughter.  I'm grateful for that.

I've been so blessed to have my brother and his family here with us for the holiday.  We've laughed a lot and played a lot of games the last few days.  The kids shoot hoops, play pool, and run around while the adults sit and visit, play dominoes and sequence and just enjoy the down time.   I catch myself staring into the playroom watching my niece run circles around Ashley Kate.  Ash is content to just be there in the midst of all Katelyn's antics.  Its fun to watch them interact.  Its fun to listen to Katelyn talk to Ashley and even more fun to watch Ashley talk to Katelyn and tell her what she wants her to do next.  I can't help but secretly wish for Ash to be standing next to Katie Bug on that swing and jumping off right next to her.  I think normal is something I'll always long for, but it doesn't take away one little bit of my gratitude for all that Ash can do and is learning to do.

I am overwhelmed daily at the goodness of our God and at His blessings that are bestowed upon us.  My heart is full.  My favorite time of the day are the moments where I find myself in the family room, under the glow of the lights, and my heart recounts all I've been blessed with in that day.  Life is such a precious, precious gift.  Even in the midst of struggle, and there are struggles, but intentionally striving to focus on the beautiful keeps my heart thankful.

I have no idea what tomorrow holds, but I've often heard say that I know Who holds tomorrow.  How very true at this time in my life.  I pray your holiday season is blessed and that your hearts are overwhelmed by His goodness and  His blessings.  Take care my precious friends.

Pink Feet

I'm finding myself so very thankful for these little feet.  Even though they don't walk, or run, and may never do either, I'm so very grateful for the little person they belong too.  Sweet, sweet girl.  This is one of mine and Allie's very favorite pictures we've taken as of late.  Not sure if its the jeans or the little pink shoes or what, but we both agree it makes us smile so deep inside we can't help but let it spread to our outsides.

I remember snapping this pick and the tears that were shed that afternoon because I needed her to stand on those little feet while I picked up something I had dropped while hefting her into the house from the car.  I leaned her up against a tree in the front yard and I'm sure the neighbors thought something horrible was happening to her based on the cries she put forth.  Seriously, though I couldn't handle  putting her all the way down on the grass and then picking her up with all that I was managing.  It was physically impossible for me to do that day.  Anyway, as I listened to her fussing at me I caught a glimpse of those precious feet and couldn't resist snapping a photo since she was already standing there and all.

  She has grown SO much this year.  She is 4ft. tall and weighs a solid 66lbs.  I never dreamed she would grow so much.  She is wearing a size 8-10 now!  Our little preemie wears big girl clothes.  Unbelievable!

She is beautiful and happy and so much fun.  Not many a day goes by that I don't find myself just pausing and listening to the joy and laughter spill out of her.  She is a precious, precious blessing to our family and we are so thankful to have her here in our lives.

Its been one of those days

I woke up crying several times last night.  Just couldn't seem to escape nightmares of the PICU.  I have no idea why I can't shake them this past week.

I've been plagued with nightmare several times during Ash's life and this journey we are on.  Its an area that I have not a lot of control over. I close my eyes and there we are.

Anyway, last night was a very long, very emotional battle as I slept.  I remember Dave waking at one point and trying to help as I whaled and threw my sleeping self around the bed.  This morning he asked what was happening as I slept and all I could get out was "PICU" before I began to cry again.

He came in for lunch this afternoon and I think I spent most of it crying.  Over nothing!  She's here.  She's in our home.  She's in the playroom for goodness sake!  Why, why, why am I so emotional?

So I say its been one of those days.  Emotions run raw and my eyes continue filling with tears.  I'm so, so tired because I spend every night battling for her life along side of her and as much as I want to just find rest I can't seem to get rid of the images I'm fighting.

This holiday week will be the 3rd one in a row we've been blessed to have her here at home.  I can't express how very grateful I am for that.  If I could have her anywhere in this entire world this week I would choose home!  My brother and his family are coming in tomorrow to celebrate with us, and we are really looking forward to spending time together.  We are very excited about the visit.

I seriously hope I can pull myself together this afternoon and be a little more stable when Dave comes home this evening.  I'm tired of crying.  Life is blessed, and I'm ready to guide my focus toward how very grateful my heart is.

Back Home

It was a whirlwind trip.  Very, very long drive with very, very little sleep.

We arrived back in Longview yesterday evening.

Ash is so tired.  The trip wore her out!  She was awake for 26 hours straight before she ever closed her eyes.  She had very little personality and not a whole lot to offer anyone in Omaha because she was just so tired.

The most important piece of information we gained from this trip was being told that the chief of transplant surgery instructed the team to not pressure us in any direction, but to be there to support our decisions no matter what they may be for however long needs be.  That was a huge blessing to us and one we needed to hear.

Ash is no better or no worse.  Ultra sound did not reveal any new information for us.  We are disappointed that there were no obvious answers.  Basically its been decided her liver is showing wear and tear as a result of the extended period of time its been processing TPN.  Outside of replacing the liver nothing can be done to fix or repair it.  We've known that since she was born.

We were in and out of Omaha in under 4 hours time.  They took blood, did an ultrasound, and spent 8 minutes talking to us at her clinic visit.  A very long trip for only 8 minutes, but its behind us now.  We have no plans on returning anytime soon and they agreed that barring any major illness, loss of central line, or severe decline in her quality of life we will remain here in our home with Ashley Kate.

I wish I had more information to share, but I really don't.  The decisions we've been facing for the last 2 years are still the decision we are facing today.  Ultimately Ashley will lose her life without another multi-organ transplant.  Still the statics of her surviving such a transplant again are not high in our favor.  Its a no win situation.  We will eventually face the day where we hand her over to her team of surgeons and ask them to do the very best that they can for her.   For today though we will stay the course. Focus on making memories.  Allow her to live her life with joy and laughter. Do our very best to spare her any pain or fear.  Above all...be grateful for each moment we are given...and never fail to whisper our thanksgiving to a heavenly Father who created her.  

Ash is still sleeping today.  Like I said, she's worn out.  This afternoon we will have pictures of the kids made for our Christmas cards.  I'm hopeful this rest is rejuvenating her little spirit and she might show us a few smiles.  Thank you so much for your prayers this week.  We made it there and back home.  Again its always a gift to pull into our drive way after such a long journey.

Its D Day for us

Today is the day we head out on our long drive(d day) to Omaha. 

Unbelievably so we have been battling with the insurance company all day trying to get what had already been approved as of 5pm last night re-approved.  They are requesting we just see our local primary doctor for this issue of acute rejection.  As of this morning they find it is unnecessary to travel such a distance to be seen by a doctor.  Hmmm...so glad they can make that determination.  Their other suggestion...delay the appointment until December 15th so they can review the case further.  Nice...she could be in ICU by Dec. 15th if we don't pursue treatment.  This is not a visit we are choosing to take...this is a visit we are being forced to take because of circumstance outside of our control. 

I've slept very little this week.  I can't deny that my nerves on are edge about the whole trip.  There is something about Omaha that makes me shake inside.  Something that causes me to be afraid every single time we arrive inside of that building.  Its so very hard to explain.  The very worst days of our lives were spent inside those walls and yet they were sprinkled with some of the most amazing, kind, and loving people we have ever met.  How I wish I could separate the horrible experiences from the people.  The people in Omaha, the nurses who not only loved our Ashley, but us too, the community, and the churches who reached out to a little family all the way from Texas and loved on us in a way I have rarely ever seen.  To be on the receiving end of that love was one of the biggest blessings in my life.

 Still, the memory of watching our sweet Ashley cling to life for months on end and seeing the pain and horror that she endured is something I can't ever forget.  I just can't put it out of my mind.  Nightmares of those days have returned each night as I fight to close my eyes just because I know we are going back. My head is hurting so bad from the battle that rages inside of it.  I know we aren't staying this week.  We will literally leave there in under 6 hours.  Its just a journey for a few tests.  Thats it.  She's coming home with us tomorrow afternoon.  She is.

In less that 4 hours we will head out on the road.  Dave cracks me up! He has made a bed in the back of our  vehicle.  Mattress, sheets, quilts, pillows.  You name it, its there.  Its like a rolling hotel headed down the highway.  As a little surprise for him I've thrown in my sleep mask to keep the lights out of his eyes while he rests.  He's going to be pumped about that!  Our overnight bags are packed.  TPN supplies are being assembled this afternoon.  I've taken a power converter and am hoping to be able to use my hair iron in the morning from right inside the car.  We are going to be the saddest looking family walking into that clinic tomorrow morning.  No showers, changing clothes in the back of our car and brushing our teeth in the bathrooms outside the doors, but we seriously have no other choice but to drive it overnight.  Dave had to work today and I couldn't make the upcoming decisions alone.  He needs to be at this appointment with us.  There is no time to get a hotel.  We will be arriving with about an hour to spare before her first appointment. 

D day is here.  We are headed back to Omaha.  Words I had hoped to never, ever type again...and yet I've always known they will be a constant in this accounting of our journey.  Omaha will forever be a constant in her life.  I'm just trying to put together as many days as possible between our visits there.  You can't blame a mom for trying. 

Wish us luck:) 

There are SO many things...

I could choose to write about. 

 I thought about sharing our holiday decorations with those of you who have asked about seeing pics of what it all looks like this year.  Our house is most homey around the holidays and we all enjoy sitting around the family room under the glow of the lights each evening.

I could write for days and days about our beautiful Allie and all that is happening in her world. 

I SO love this young lady.  Her sweet heart is as beautiful as her outside appearance.  As I watched her getting ready for a banquet last night I wondered to myself where the years had gone and how did they pass me by so quickly.  I could picture my 4 year old Allie sitting in front of the mirror spreading lip gloss on everything BUT her actual lips.  The memory made me smile as I stood across the room and watched her add one last layer of gloss to that smile before she ran out the door. 

I wish I had the words to share with you guys all about this young man who lives in our home.  So many exciting things are beginning to take shape in his life.  The dream of college baseball is so close its almost scary.  As I read the emails, receive phone calls, and open letters I have to pinch myself.  He is no longer our little guy swinging with all his might to knock that ball of the tee.  The years and year of practices are starting to all come together. We spend a lot of our weekends this fall traveling to this showcase and that letting as many coaches see him play as possible.  There is so little time left I can hardly believe it. 

I know God is working is his life and I can't wait to see where He sends him.

 

 Then there is our Ashley.  What a mess!  I seriously have so much to share about the goings on in her life.  This week between club tryouts and baseball showcases for our big kids we will be squeezing in a trip to Omaha for our little one.  Its not really a trip we want to take, but we are indeed taking it.  How I wish I could travel to Omaha to visit all the sweet nurses who have become such precious friends to me or to catch up with those friends who have loved and ministered to us so well over the years.  I love them all so much!  Instead we will be traveling 30 hours round trip to spend less than 6 hours in Omaha!  Seriously unbelievable to me, but it is what is to take place.

Dave and I are leaving Longview tomorrow evening around 7 and driving straight through the night. We should pull up to the hospital around 9am.   Ash's first appointment is at 10am Thursday morning for an ultrasound.  It will be followed up with labs and a clinic visit at 1.  As soon as the visit is over we are loading Ash back up in the car to travel back home.  All in all we will be in the car for over 30 hours.  Its going to be a marathon!  Our plan is to be back home as soon as possible. 

The trip is going to be a long one!  There are many, many things we have to discuss while we are there.  No one really knows how we should proceed.  We of course are looking for quality of life for Ashley Kate.  That has always been our goal for her.  Give her as many days full of love and laughter are we can.  We know we are not prepared to yet list her for another transplant.  

Her liver function has improved a little over the past month, but it is no where near what it has been prior to the onset of this last round of illness.  We are all aware that its struggling and are hoping for a turn around for her.  We are not naive about the state of things.  We have not forgotten about her limited line access.  Nor have we ever forgotten that she is extremely fragile medically.  The goal at this point is to get everyone on the same page as we lay out the options and discuss plans for her future.  I'm not looking forward to these tough discussion or the decisions that we will be asked to make.  

I am however, looking forward to having many, many hours to spend with Dave.  Its not often that we have time to really slow down long enough to talk about the hard stuff.  I feel like we are doing just enough to keep our heads above water and survive most days.  

Other than needing a lot of extra hours to rest Ash is feeling fairly good.  She's been home for over a month and not gone out to any events at all.  She loves for us take her on drives in the car though.  Her daddy happily loads her up most evenings and takes her for a little ride through the neighborhoods.  Just enough to let her see the outside world and whats going on it.  

So...like I said...there are SO many things I could write about and would love to share, but time just hasn't allowed it this week as we prepare to head out to Omaha.  Your prayers for us as we travel on the roads, prayers for our teenagers safety as they stay behind for school, and prayers for our tiny girl's future as we sit down with some of the most brilliant transplant surgeons in the country to develop a plan would be greatly appreciated. 

  

We anticipate returning in the early morning hours of Friday of this week.  I am then looking forward to staring straight ahead into a wonderful holiday season spent with our children here in our home.  God Bless you guys this week. Love you all.  Trish

Almost Done

The house is filled with the holidays and everything I wanted to accomplish is almost done.  All the large trees have been decorated.  Mantles, bookshelves, and center pieces are complete.  I have just a few more things to finish up.  The lights on the house were started last weekend, and the wreaths need to be hung on the windows.  Other than finishing up the eaves on the roof and arranging the patio table center piece we can officially call it all decorated.  That makes me smile.

I attempted to make new stockings to hang on the mantle using some of the burlap left over from Ash's birthday party, but it was miserable failed attempt.  I have no idea why it turned out to be so difficult, but after fighting it for a few days I decided this wasn't the year to have new stockings.  Not important enough for me to stress over.  They would have been the little extra touch I think the family room needs, but again not willing to be frustrated over why I can't seem to sew an even stocking.

After being out for most of yesterday, I decided today would be our day in.  We've spent most of it doing the laundry that didn't get done yesterday.  There's something oddly comforting to me about the laundry.  I mean it is a never ending task and not really my favorite responsibility of being a stay at home mom, but still I find a peace and contentment inside those loads.  Its representative of being here.  I'm so,so grateful to be here in our home.  As I fold Ashley Kate's linens its a reminder that she slept in her own bed last night and for at least today she will be safely tucked back there tonight.  I smile while I make her bed up and ready it for her to find rest again.

Things are different here today.  I think knowing that we will soon be leaving brings a sadness to our home as I attempt to place things in order.  I've found myself near tears for most of today, and talking to anyone about it is completely out of the question because then the tears fall and don't seem to stop. I've ignored phone calls today knowing I'm an emotional mess and not really up to pretending that I'm not.  I sat in the family room for a while last night and just allowed myself to cry.  Not the ugly cry, but a very, very sad cry.  In the stillness of the room I tried to be still myself.  Once I joined Dave for bed last night I couldn't stop wondering aloud about this or that and how we would ever figure things out and he gently reminded me that I couldn't add one inch to my stature by worrying.  I laughed and reminded him I wasn't worried about getting taller!  In times like this I really appreciate having him to guide me.  Even though it feels so very lonely, I know I'm not alone.  He hurts too and he feels the sadness too.  He doesn't worry quite like I do and I'm grateful for that.  He knows God is in control of this situation and he finds rest in that.  I know it too, but for some reason I don't rest.  I still worry myself over things I cannot change.

In the grand scheme of Ashley's life what we are looking at today is really nothing.  She's faced much worse situations and survived despite predictions of failure.  This is merely a beginning to a process we had hoped would never start.  Knowing all along that it was inevitable, but still hopeful to be given as much time as possible before any of it began again.  Still, I can say, I'm not afraid.  I am sad at the knowledge of change, but I'm not scared for her today.  She is as happy and silly as she is most everyday.  I love her joy filled spirit and the way God created her so very much.  Ash is a mess, but she is a happy mess and after all that is what we had prayed most for.  I think the saying is true that you can't buy happiness. You either have it or you don't.  Its an attitude that I believe comes from a spirit of gratitude and contentment.  My sweet Ashley doesn't know any different.  For that I am truly grateful for His wisdom and the way He chose to create her.

Again, I say to so many of you who love Ashley Kate, thank you for being here with us.  You are a blessing. Your presence in this "place" that we hold so precious to our hearts is never taken for granted.

No Idea

I've sat in dozens of doctor's offices over the last 7 years.  Waited for countless hours on them.  Listened to their advice, followed their treatment plans, and done all that they were asking of me.  I can navigate my way around a hospital.  I can live the life for extended periods of time.  I've learned who I need to get to know better than others and who has the power in difficult situations to make our life with Ashley a little easier or make it the most difficult.  Its a skill I've gained over the last several years and one that if anyone had asked I would have gladly passed on needing to have. 

I say all of that to also say that never, for one moment, in any way, shape, or form has it been easy.  Parenting Ashley Kate and having the "buck stop" with me and my decisions for her health care has been and continues to be the hardest thing I've ever done.

As I stood in his office this morning crying my eyes out right in front of him, the one thought that continued to come to mind was this, "He has NO IDEA".  None of them do.  I left his office crying, drove home crying, and sit here now crying.  He, along with his colleagues, will go home to his healthy children tonight.  He, nor will they, ever know or ever have any idea what it feels like to be us.  We are stuck in the middle of a nightmare that we will never wake from. 

I've said it before and its true once again, there are  no easy decisions left to make.  Each and every decision weighs  heavy with serious consequences.  I simply don't know what to do anymore. 

I wish for one moment they could feel the weight that we feel.  I wish for one moment they could imagine being on our end and know how desperately we need for them to be supportive.  Its hard enough not knowing if we are making the right decisions without feeling abandoned by those whom you placed trust.  When you add that into the mix all I can do is sit here and cry as I try and figure out what comes next. 

If I could heal her and make her whole I would do so...in an instant...in a heartbeat.  I would have never chosen this path for her.  Never.

I'm struggling today.  Waiting for a phone call that will decide where we are headed and what lies in store.  I used to say that I would never want for anyone else to go through what we do each day, but I think I've changed my mind.  I wish ALL her teams of doctors could experience it for at least one day.  I think then their level of compassion and care might increase just a little.  At least I hope that it would.

My heart is sad.  Very, very sad because of what I know lies ahead of us.  How I hope to have kind, loving, compassionate, and understanding people in our path.  I think I'm too tired to be who I still need to be if they are not.  I'm so very tired.

Just a Feeling

Dave and I have been going through all the possible scenarios for days and something told us to check.  I don't know what to say other than it was just a feeling we had. 

Late yesterday evening, over 48 hours since we dropped off a set of line cultures, we got the call.  Ash does have a line infection.  We wondered if she might have one.  Wondered if even without her usual symptoms that alert us to an infection if she just might be fighting something. 

An infection can cause her liver numbers to become elevated.  We usually account the changes in her liver to it having to process the antibiotics we use to treat the infections, but the infection itself can indeed cause her liver to struggle.  Now we can't say for sure that this is all that is happening inside of her, but we can at least try and eliminate the infection and help her feel a little better.

At some point you become desperate as you search for answers, possible causes, anything to explain why her body is struggling.  I think in an odd way we were hoping for positive cultures this time.  Hoping an infection was there so we could treat it and hopefully make her liver not look quite so ill. 

We began treatment this morning.  We don't have an ID or sensitivities but we put a broad spectrum antibiotic on board to begin an attempt at helping her feel better.  Our local teams are amazing.  Each and every time we call them they are so kind, so quick to help, and so willing to help us help Ashley Kate.  My heart is so thankful for our pediatrician and our pharmacy.  Our pharmacist comes in on weekends if we need him to to mix her meds and delivers them to us as quickly as possible.  Our pediatrician gave us his personal cell number years ago and never makes us feel as though we have inconvenienced him in the least.  When God surrounds you with good people it makes the road we travel a little easier. 

Ash is sleeping more and more each day.  I know she's struggling when she begins requiring long naps to make it through her days.  When she's awake though she smiles and giggles.  Her face is so swollen that you can barely see her eyes.  In addition to the swelling from the steroids she has third spaced a tremendous amount of fluid the last couple of days.  Anytime she battles a big infection her vessel walls become weak and she leaks fluid into her tissues.  She is requiring large amounts of IV fluids to attempt to keep her kidneys from struggling during this mess.  At one point her BUN had climbed to 44!  That is with extra fluids infusing 24 hours a day.  Her albumin is very, very low.  We may request an infusion at some point this week.  She has an appointment with her pedi surg team in Shreveport early Monday morning.  Lots and lots to talk about.  Decisions to make. 

Overall, I'm encouraged to figure out she's got this infection. Maybe, just maybe, this could be the problem.   She is still happy.  It is hard to be afraid when she's laughing and enjoying life.  I know she must be confused as to why her body has swollen so large.  I can see its harder and harder for her to move around on her own.  Its harder and harder for us to lift her.  Dave had to give her bath for me yesterday.  I simply couldn't manage her on my own safely. 

I feel like were going to get her through this mess.  I can't explain it.  Its just a feeling I have.  I told the transplant coordinators last week that I'm not scared yet.  I've been scared before and although I'm very concerned about her, I'm not afraid for her. 

Thank you so very much for loving our girl.  Thank you for your prayers and your concern.  I know it is exhausting to follow along our journey. I can imagine it becomes discouraging for you guys to show up here day after day and read about her struggles.  Its been 6 years of documenting the journey and so many of you are so very faithful to come to this place with us again and again.  I have never forgotten how blessed we are that you love Ashley Kate.  I'm forever grateful.  

Prayers for Emerson

Please remember our friend Emerson and her family in your prayers tonight.  She is fighting to live in a PICU room in Denver.  My heart would be forever grateful if you would whisper her name to our heavenly Father. 

My burden is heavy tonight.  Little girls should not have to be so sick and fight so hard to be here.  My heart aches.  Thank you for loving us enough to love our precious friends too.

I wish it were easier...

but I'm afraid its never going to be.

After several conversations with our transplant team yesterday and today I was informed that they have decided they can't help us with Ashley Kate at this time unless we are willing to bring her to them so they can put their eyes on her.  Basically they have opted out on this one.  No direction or consulting any further at this time.  They will continue to follow her labs( I really have no idea why), but want her local team to make the decisions regarding her care.  This is basically what we have chosen to do anyway, but it was always nice to know they were there to give advice or offer suggestions.  After reviewing her case this morning I've been informed that since we aren't taking her to Omaha then they aren't comfortable following this current situation with her liver.

I'm not sure how I feel about this.  Conflicting emotions.  At first I felt as though I were being given an ultimatum by them, but I don't think that is the case.  I'm feeling a little abandoned by people whom I've trusted for more than 6 years of her life, but there isn't much that can be done to remedy the situation we are currently living with.  We are not willing or ready to have Ashley listed on an active transplant recipient list.  I think we are far from that.  Without taking her back for re-eval, then I don't guess there is anything they can assist us with any further. 

So we are left with many difficult decisions.  Decisions that make me sometimes feel as though I'm being backed into a corner.  I simply have a gut feeling about transplant and I'm going to follow my gut.  Its not time.  It just doesn't feel right at this time. I think there may come a time that if feels right, but that time is not now.

Ashley's liver isn't healthy.  We've known that for a long time.  For a couple of years now.  But...I've seen her liver be in a worse state than it is at this time.  So...I'm not afraid.  Not yet.  I think we have time.  Time for it to perhaps reverse whatever is going on. 

There are 3 or 4 possibilities going on in her liver.  The first that came to everyone's mind was a case of acute rejection.  With the rate of the changes this is a likely possibility and what we have been treating her for.  The second is disease progression.  Ash has been on TPN for more than 2 years now.  TPN is toxic to the liver.  This was the original cause of her native liver failure.  The third cause could be a blockage in her bile ducts.  We will be able to determine this with ultrasound.  Lastly the cause of the changes could be an infectious process somewhere inside of her.  Line infection is the most likely, but it could be a viral infection or something along those lines.  It sounds funny to say, but we are hoping for an infection to be discovered.  Something that we have a chance to treat and beat.

The earliest we can do anything at this time is Monday.  I have an appointment scheduled for her in Shreveport.  From then we will decide if we will continue with a liver biopsy or not.  I'm confident we will do an ultrasound.  The transplant team is deferring all decisions and case management at this time to our local team. 

Other than the extreme swelling of her face and the discomfort it brings I think she's doing really well considering whats going on inside of her. 

The decisions we face are unimaginable.  I truly have no peace or confidence in bowel transplantation for Ashley at this time in her life.  She still has an amazing quality of life and I am not willing to sacrifice that.  If she begins to lose that quality of life and we are forced to choose between watching her die or attempting another transplant then I know we will choose the glimmer of hope that new organs may provide.  I'm just not going to list her today. 

I haven't even discussed the complications of no line access in this post.  Things are more and more complicated every single day.  I could write for hours and hours and still not be able to share everything that goes into caring for Ashley Kate.  It is so very complex. 

If you could see her at a pep rally and watch the joy on her face as she dances along to the sounds of the drum line, or if you could lay in your bed at night and listen to the sounds of her laughter spill out into the hallways of your home then I think you might have a small understanding of how and why this is so very difficult.  I can't sentence her to living inside the walls of a hospital when she has so much living still to do on the outside of those walls. 

Answers don't come easy.  We lost that luxury the day we found out we had no more access and when her bowel was ex-planted.  From here on out we live everyday as if we were out of time and yet still try to keep from making decisions for her based out of a fear of losing her. 

I wish it were easier.