Ashley's Story

She will leave fingerprints all over your heart



She's happy again. Look at that smile and those eyes. NOTHING else matters to us. NOTHING.

This is what we have spent her life fighting for. This is why we will keep fighting. Through virus, rejection, explant, liver disease, re-eval, organ waiting list, re-transplant, and whatever that brings with it.

Our sweet Ashley Kate is here today, she's home, and she's happy. She loves her home, her family, her life, and her "dinosaur"(don't tell her its a dragon, she's convinced its her dinosaur). If Dave and I accomplish nothing else in this life it will be enough for us to know that she was happy and that we were able to see to it that her days at home afforded her that much. We love her so, so much. So much more than words have the ability to say. I hold her each day, I listen to her giggles, I kiss those cheeks, and I thank God for another day with Ash. He is good, and we are so blessed.

We are still waiting for financial approval from the insurance company before our evaluation can be scheduled. The main goal of eval this time around is completing another vascular study above her diaphragm. Looking for possible central line access in order to transplant her again. Then we will be told if the team will try again. If she were to be listed this week on the waiting list she would have a PELD score of 32. Its a pretty high number meaning she would be closer to the top of the list. The good news about this time around is she's bigger and her O+blood type is a common one so the possible donor organs that would fit into her body and that would be a match for her could be easier to come by. The bad news is that she's bigger and her blood type is O+ meaning that there could be a lot more candidates waiting for those same organs. UGH! Its all so frustrating.

This morning I was reading and came across Peter's words that reminded us all that a day is like a thousand days and thousand days is like a day with the Lord. His time table is not the same as ours and for some reason it gave me hope. What may seem like a long wait for us if she is ever re-listed may in actuality not be so long. Its in HIS time, not ours and that tells me it will be perfect timing. Its stuck with me all day long as I watched her play and then watched her rest. He's got it under control even if He decided not to share all the details with me. That makes it all ok. Not easy, but ok.

So for today, while we wait, she's happy again and that makes this mommy and daddy happy too. Goodnight and God bless. Trish


1 down, 4 to go

I have officially finished Ashley Kate's Christmas tree, and it looks amazing sitting in the corner of the therapy room. Its so sweet, so beautiful, so twinkly. It makes us both happy. Last night I walked in to find her turned toward it, watching all the sparkles, and smiling the tiniest of smiles. So glad I started with her tree first.

Its tradition in our home to have all trees up and decorated by November 1st. We choose not to acknowledge and absolutely not celebrate Halloween in any way in our family and so we take this time to prepare for what we all love so very much...Christmas. Its a wonderful way to ignore all the ugly and evil that surrounds this time of year. Anyway, its just what we do and what we love. I will not be here Thursday evening, Friday, Saturday, or Sunday(girls weekend and soccer tournament) so that leaves me today, tomorrow, and half of Thursday to finish the rest of the trees. Wow! I've got my work cut out for me. I'm so looking forward to walking in the house Sunday evening and being surrounded by the sights, sounds, and smells of Christmas. What peace! It brings the most amazing sense of peace to our home when its done. The boys can't wait for it to be finished, but make no mistakes about it they don't do ANY of the decorating. One of Blake's favorite things to do is sit back and enjoy watching it take place. He loves the house when its full of the holidays. He doesn't love decorating and neither does Dave so us girls handle it with the happiest of hearts. Blake's friends think I'm crazy, but no worries they've been around enough years to just smile and shake their heads without actually voicing how insane his mom is. Makes me smile just thinking of the looks they've given me in the car the last week or so as the carols play. Oh, makes us happy.

So today I hope to get the family room trees assembled and arranged. It requires some moving of the furniture and some muscle so I hope my mom knows what she's in for this afternoon. She's busy trying to get the sheers sewn and finished for the dining room windows(I've lived here for over a year and am just now finishing out the bay window and seating area). Things are busy around here and we like it that way. Allie has soccer practice every night this week for the three teams she's playing for right now and a tournament this weekend. She hit her head pretty hard during Saturday's game and is still not feeling well. We aren't sure she's actually going to make all those practices, but she's determined to play this weekend. The basketball list is being announced today too and so practice starts tomorrow. She is hoping to find her name on that list this morning even though I kept her home from school yesterday morning(didn't make the coach too happy when she showed up for the afternoon classes but she looked pretty bad yesterday morning so I kept her home against her wishes). Blake's tournaments keep getting cancelled due to the crazy weather and if he doesn't get to play soon I'm afraid we aren't going to be able to live with him! There are a lot of possibilities for this weekend so hopefully something will come through for him. My sisters are meeting me in Canton for their birthday weekend Thursday evening and we are all so excited about a weekend with just the three of us. I think thats about all that is happening around here. Maybe a few surprises thrown in here and there, but not much more.

Guess I should get started. The big tree is calling my name:) Not sure if Ash and I will be here to enjoy it for long so getting it all up as soon as possible is really important to me. I want to make sure its all ready for Dave and the kids. Have a great day.


I smiled

This afternoon my smile was so big, so wide, so unexpected it couldn't be wiped from my face. I could feel how stupid it must have looked, but there was NO erasing it. I think it was probably the very first smile I have REALLY smiled in months.

I walked into the therapy/play room to find Ashley Kate about 2 feet from where I had left here. Dave was home for lunch and so I asked him if he had moved her, "No," he answered. Hmmm... I went and found my mom and and asked had she moved her, "No," she answered. Well...I know where I had set her on the rug and I could see she was no longer there so I lingered in the doorway and decided to just watch her and see if possibly I had lost my mind or just maybe she had moved herself. It only took a few minutes for that smile to cross my face. She in fact was moving! MOVING herself in the "Ashley" way that she once moved around our entire house. I was so in shock! I walked in and offered a few small toys. Once she reached out for them I purposely placed them about 4 or 5 feet away from her. Sure enough in a moment or two she took off. She didn't even look proud of herself. It was as if she were doing what she had always been able to do except for the fact that SHE HAS NOT HAD THE STRENGTH OR ABILITY to do it in months. However, today she did. She felt good enough, strong enough, and able enough to pick up where she left off in May. I was so blessed. So incredibly blessed in that moment. She moved another time or two and then she was finished. The moments passed and she didn't move for the rest of the day, but I don't even care about that. What I am rejoicing over is that my daughter is getting her life back. In the smallest of ways she is getting back to LIVING instead of dying. I don't have the words to even describe what that feels like.

So, I know that she is no longer standing, I know she can't take steps along the parallel bars anymore, I know that she doesn't walk in her walker, BUT she can move when she wants to and to this momma's heart that is HUGE. Its miraculous. Its encouraging. Its a blessing. Its gives me hope that someday the other skills she has lost will return to her as well.

Oh, how I needed something good to happen. I really needed something to touch my heart in the way her tiny scoots touched me this afternoon. Its been a long road to where I am at this time and the road ahead seems so long and so difficult and so unmanageable. Today, I rejoiced. I really did. It was so amazing it earned a knuckle bump from her daddy to her mommy and it spread smiles across our faces in a way that little else has.

Just thought I would share. Goodnight and God bless. Trish



I'm tired. Tired of being afraid. Tired of being scared. Tired of crying. Tired of wondering. Tired of worrying. Tired of questioning. I'm just so very tired.

Ashley Kate is facing another transplant and months and months in the PICU. Emerson has been in the PICU in Denver for a month. Kylie was flown out to the PICU in Omaha last night. My heart hurts and its tired.

My sweet girl and her precious friends are the sweetest, most amazing, most beautiful and strong little girls you will ever meet. They fight for every day of normal life they can get and on the in between times of those few normal days they are given they fight for their lives. Their mommies are fighting too. We are all fighting to find a way to give them what every little one deserves. A childhood. Whether it be in the small rooms of a PICU or in their own rooms in their own homes between PICU stays. I'll say this for all of us, we are exhausted, and yet we will keep fighting because there has never been a more valiant cause worth fighting for. Childhood for our daughters. Its worth it. We get up every single day and face whatever we have to in order to keep going because our little ones keep on going.

I'm tired. I am really, really tired.

Erika and Joan, I'm standing along side of you my precious friends and loving you both all the way from Texas. As tired as we all are I will say it again, we are so blessed. We are the lucky ones because we get to be their moms. Praying for you girls tonight. God bless our baby girls as they keep fighting.


Around the House

Nothing blesses my heart more than to see this tiny girl just hanging out around the house. Our house. What a blessing!

I LOVE being home with her. LOVE it.

Ready to Go

Its not quite 10am and Ash has been ready to go since her eyes opened two hours ago. She is sitting in the middle of the room yelling, pointing to the IV pole, signing for me to load those pumps in her backpack, and then "car, bye-bye, car bye-bye please". We do have a doctors appointment in Shreveport today that I have been looking forward to all week just because I will have an actual destination in mind while I drive her there. It will take an hour to get there and an hour home so my hope is that by the time we get back she will have gotten her little "fill" of the car for the day. I'm being hopeful.

Last night we enjoyed a quiet night, let me start over, we enjoyed a night(it wasn't too quiet) of watching our Texas Rangers whip up on the Yankees. I looked around the room and felt so blessed to be in it with all my kids and Dave doing something so normal. It was amazing. The game and the moments spent here at home. We made chili frito pies for dinner and all sat in the family room eating, talking, and watching baseball. It couldn't get any better than that. I love my son and I love listening to his commentary on the games. His favorite team playing his all time LEAST favorite team. Its been great to be home during this time.

Before the game I sat and watched Allie at soccer practice. She is guest playing for two teams this fall. One rec and one club. Last night was her first practice with the club team. Club teams are a little different. Very inclusive with each other, not so inclusive with new players. She played well but felt very unwelcomed by most of the girls. Not a big deal, she did her thing and thats what she was there for. We are allowing her to play with them just to see if she likes their style of play before trying out in January. Its an experiment. Not so much about the girls but more about the game. I enjoyed watching her work hard and play.

Before soccer practice I shot baskets with Blake and Allie. One of my very favorite things to do. Its no secret I have a passion for playing and coaching basketball. Its really hard knowing that the opportunity to coach is gone once again this year, but it makes the decision to do so last season all the sweeter. What a gift it was to have been given a full year of health with Ash so that I could feel confident enough to take on a team again. I don't regret the hours spent in the gym with Allison one little bit. I'll miss having that opportunity this year. So to get my fill I take coaching to the driveway and work with Allie. She's hoping to make one of the teams this week. There are a huge number of girls trying out. Close to 80! Things are so different in public school. I feel pretty confident she will make at least one of the teams, but she's hoping for the A team. Guess we will find out next week.

So life at home is as normal as can be. Taking care of Ash, running the kids here and there, Mainly to practice of some sort, cooking dinner, and soaking up the moments when we are all here together. I love the normal moments we are given. LOVE them. Its the mundane that I miss the most when we leave. Allie has a soccer game with her own team this Saturday and a tournament as a guest player next weekend. Blake has a big tournament this weekend at Craig Ranch. My sisters are coming in next weekend to spend some time in Canton for their birthdays. Girls weekend! So excited about that. Dave and I are taking occasional moments to spend alone talking, planning, and going over decisions that have to be made. I don't always enjoy what we are forced to talk about, but I do enjoy sitting next to him while we do it. Transplant is working on financial approval at this time with the insurance company before we can proceed any further. Its step one on the long stretch of this journey we have ahead of us. Once that is secured then a date for re-evaluation will be set. Other than that not much is happening. We are blessed with this time together and its never far from our thoughts that God is with us during it. Even on the days when I'm struggling I remind myself again and again that He is not absent, not silent, not too occupied else where. He is here and it is a gift from Him that we are together for now.

Hope you enjoy your day. I'm off to brush a 5 year olds hair(what she has left of it anyway:(. Take care. Trish


For Ashley

We watched Allie play in the final game of her very first volleyball season tonight. The girls won with impressive play. It was so fun. Dave and I love watching the kids play ball. It doesn't matter what type they are playing, we still love it. Allie was awesome and I was so proud to be her mom. Not just proud to be the mom of an amazing athlete, but proud to be the mom of an amazing kid. She is a blessing.

I tucked Al in bed tonight and as I lay next to her in that big bed of hers I told her how awesome she was. She smiled at me and said, "Its for Ashley." With that said my heart melted. I nodded and told her how much it blessed me to know that she gives it her all, no matter what sport she's playing, because she realizes how blessed she is to have a body that works.

As we chatted she asked me if I remembered when Ash was born and had her first surgery what she was worried about. I didn't remember the conversation until she reminded me of it. At that time Allie was into competitive cheer leading. When my 7 year old saw the incision across Ashley's tummy she was worried that Ashley would never be able to wear a cheer uniform. I told her Ash would wear one someday and she would be the only one tumbling across the floor wearing a tiny backpack. We giggled at the thought of how cute she would be when that day came. Tonight Al said, "Mom, she doesn't ever have to wear a cheer leading uniform with a backpack. Its not important to me anymore. I would be happy just to see her walk across the driveway with her backpack on." Tears formed in my eyes as she said, "All I care about is her living. Doesn't matter to me what she can and can't do. I just want to see her with her backpack. Thats all."

When I see Blake and Allie playing in their games I often find myself longing for Ash to have the ability to do the same. We talk often about how blessed they are of God to have what they have. Fully functioning minds and bodies that can perform the way they want them to. We no longer take it for granted. Its funny how my perspective has changed in the recent weeks. Just Saturday I watched 4 and 5 year old little girls run across the soccer fields in their pink and black uniforms and I found myself saying to myself, "I don't care if she ever plays soccer, I just hope she makes it till Christmas." Its the honest truth. Those were my thoughts as Allie jumped out of the car and made her way across the fields. As Dave and I sat across from each other that night at dinner I shared that with him and he had no words to say. Just tears forming in the corners of his eyes. I no longer want soccer games, I just want tomorrows.

Basketball season starts tomorrow. My Allie will be trying out this week. She's hoping to make the team. Not so much for her mom, not even for just herself, but more for her baby sister who will never have the opportunity to try out. She's playing ball with a bigger purpose on her mind and on her heart. She's playing for two. Giving it her all because she loves a little girl who doesn't have the opportunity to do the same.

I love my girls. Love them both with all my heart. I am so grateful to have had the opportunity to be here during this volleyball season and share the experience with my 7th grader. I'm holding my breath that God has a basketball season in store for us to share too before we leave home again.

"We keep trying"

Yesterday was a rough day. It hit me hard that life is not what it was and that it may never be that again. I cried big tears and had big questions about how we are supposed to live this life. I hate that Blake was in the car to witness my broken heart, but there are times when it sneaks up on me when I don't expect it.

We had a great plan yesterday afternoon. A plan to spend a normal afternoon with our kids doing something families do on a yearly basis. I was excited for Ash that she was home and I just knew she was going to love this. She didn't love it. She couldn't enjoy it and it broke my heart.

Ashley wants to be in the car 24 hours a day. Its her new thing. She wants to see the world, even if it passes by her window at 70 miles an hour. It makes her happy. It has become her only happy place the last two or three weeks. We take a lot of drives. Long drives during the week just so she can get out and watch the world go by her window. She smiles, signs for the music to be turned up, and turns to look out the window. Every morning she wakes up, points to the IV pole, signs for her back pack, and then signs "car, bye-bye". If we don't go then the crying begins and it doesn't stop. She can cry for 3 hours straight giving the same signs over and over and over again. Nothing makes her happy unless we take her to the car. It doesn't matter where we drive to as long as we are driving.

So yesterday I thought I could combine some of the things she loves on our Sunday drive(yes, we now have Sunday drives just to keep her content). I thought since she loves her wagon, loves being outside, loves pumpkins, and loves to drive that a drive to the pumpkin patch would make for a wonderful day for Ash and our family. My big kids were "thrilled" as I'm sure you can imagine about the idea of taking family photos, but in all honesty they were excited for Ash. Only it didn't go well. It wasn't what I had hoped. In fact it was miserable and she was miserable and it hurt. It broke our hearts to see the little ones running around picking pumpkins, playing with the farm animals, jumping on the back of the trailer for the hayride, etc. Our Ashley couldn't enjoy the experience. She just couldn't. She cried and signed to be back in the car driving. She hated every single normal thing she should have the ability to enjoy. It was heartbreaking. She screamed, she cried, she vomited, she was miserable. After spending mere minutes witnessing her reaction we put her back in the car and tried to salvage what we could of the over inflated price of entrance. The big kids grabbed our pumpkins from the patch, posed for pictures to try and ease the disappointment of their mom, and made the most out of what they had long outgrown. This trip was for their sister and since she couldn't enjoy it, they tried to.

I cried. I tried to hold it in, but once inside the car and seeing the joy on her face as the world passed by her window I just couldn't help it. I tried to make sense of her desire to merely watch the world pass her by since she couldn't participate in it and it broke me. I asked Dave, "What are we supposed to do?"

"I just want her to experience life, to have the ability to enjoy the world, to live in it. I don't know what we are going to do. This should of been wonderful and it wasn't."

His answer..."We keep trying. We just keep trying and we don't stop trying to give her all the experiences we can. We never stop trying."

It seems silly that a field full of pumpkins could break my heart the way they did, but it was so much more than a field full of pumpkins. It was a part of the world that my daughter is missing out on and I wanted to give it to her. It was tradition, and memory making, and all of what I've built our little family on. It was a day specifically chosen and designed around the things she loves and yet her body, her mind, her abilities could not allow her to embrace it. A year ago she could have, yesterday she could not. It was a day that I realized the cold, hard facts of what we have lost and it slapped me in my face.

I will try again. In a different setting to get some pictures that might capture even the smallest of smiles, a little bit of joy, a sense of who she is, as she sits next to a pile of pumpkins this fall. Maybe on a different day, when she feels more like being happy, it might work. Yesterday was just a rough one. We witnessed her tiny body not work the way it was designed to and we saw up close once again what she was robbed of at birth. It hurt, but today is a new day to find some joy in whatever we can for her. If it can only be found in the backseat of my explorer than so be it. Guess I'll be driving around after I fill the tank back up!

There are signs that her body is not functioning well, and then there are signs that other things are getting better. Life is very complicated right now and the decisions looming weigh on our hearts heavier and heavier each day. Time is short anyway and as the days on the calendar turn from one to the next it feels as though what I'm carrying is getting to a point that I'm not so sure I can keep doing it. Do we go back as fast as we can or do we give her a few more weeks here in her home? I'm so confused. I hate this. I hate knowing that once I take her there are no guarantees that I will bring her back. The thought of going with her and coming back alone haunt me every single day. Why can't she just live without a bowel? I ask Dave over and over again "why can't she just stay alive like this?" Why? He goes through the medical jargon with me over and over again trying to get me to see that some organs are vital for life and others are not. A bowel? A liver? Unfortunately, these two are. You can't survive for long without them. I don't want to do this to her again and yet I am witnessing that she can't keep going unless we give them back to her.

I don't want to talk about this anymore. I just can't. My posts are few and far between because its ugly in this place that I find myself and I don't want anyone to know this is where I am. I hate being sad and scared and unsure. I hate all of this. I just wish we could have done something to save her bowel. I wish with everything in me that she would have come out on the other side of rejection like she did the other times and that we were home doing nothing more than working to advance her feeds. I just thought that was hard! Who was I kidding? This is hard. Starting over is hard. Hoping to be given another chance and not knowing if she will is hard.



Truly Beautiful

Sweet girl you are the most beautiful thing my eyes have ever seen, my hands have ever held, my arms have ever hugged, my lips have ever kissed, my heart has ever loved. I love you so very much today, tomorrow, and forever.


My Heart

Its so hard to sit and share. It is becoming very difficult to find the words to express how we are doing, how Ash is, and what is going on in our lives. I've been writing in this journal for over 4 years now. It contains a lot of stuff. Stuff that spilled over onto the "pages" from my heart. Its just that at this time in my life I find that my heart is experiencing something that I've never known before. I have a hard time explaining my emotional state to myself let alone the world.

My heart is heavy, its hurting, and yet it still experiences happiness. I can hurt so deeply and yet still feel a twinge of happiness as I steal a glance as one of the children bend down to whisper precious words to their sister. I can't explain it. A feeling of great pain pierces my heart for fear of them not having much more time to minister to her, but then a warm feeling of happiness covers me as I witness the love they shower her with in those moments.

I can rock that little girl on my lap and cry huge tears as I try so desperately to imprint the moments in my heart permanently and as I begin to slow I feel her little body rocking me back and forth urging me to continue and then the tears turn to tears of joy at her insistence.

As I change her dressings my heart breaks at the screams that come from her, and then as I finish up I witness her tiny hands signing to me "all done, finished, hold me please". Such forgiveness from her in those moments after we are done reminding me that although she doesn't understand the pain she knows their is love behind it all.

At this time in my life I find myself spinning in circles. Literally I spin in circles around the house. What do I want to accomplish in these days. How do I spend this time. Do I really want to prepare the closets, the dressers, the rooms? No...that is time wasted. I need to spend it holding, rocking, playing, walking, talking, listening, watching, car pooling. Those are the moments that are going to matter, and still the other things need to be done, should be accomplished so that when the time comes the house will run smoother for them all.

There are days when I am numb. I sit and will myself to move, to do, to accomplish. It doesn't happen. Strength does not come. I hope to be an example to the children and yet my own heart hurts so deeply and wonders about questions so large that their are no answers to and I fail to do what I am supposed to be doing.

I'm tired of wondering. I hurt deeply from worrying. I don't know how to mend their hearts or how to dry their tears. In the late night hours, as exhaustion takes hold of Blake and Allie, I see the cracks and the tears begin to flow. When they are the most tired is when it happens. As I dig to try and figure out where the tears are coming from the answer I am always given without fail is "Ashley". They can't get anything else out. As soon as they say her name they begin to sob and I do my very best to make sense of this all for all of us. Its like they are happy, holding themselves together, behaving like normal kids and then without warning it happens. I get it. I completely understand. The same thing happens to me. I cry the most at night as I lay my head down.

I wish there were a plan we we could follow. A book with instructions? An answer key to look at? There is none. No one can tell me how to live this life. No one can help me mend the breaking hearts of my children. No one can change the course we find ourselves on.

It kills me that I run through this scenario then that. Trying to prepare for each. The holidays? Where will she be? What should we do? Do we snatch our children and run to spend time together doing something amazing and making a memory of that or do we plan a quiet, peaceful, tradition filled holiday here in our home? I want to do both. Just in case its our last. I hate that thought. In case its her last. Who has to think on these things? What parent should ever have to plan Christmas as if it may be the last one their 5 year old ever has? I find myself scrambling to get things in order in case we aren't here. It disgusts me that I have actually bought things in preparation for her Christmas in case its spent in a hospital room. There is something so wrong about having a box of items purchased and set aside to bring magic to my daughter just in case she has been listed and the call comes in before Christmas day.

See why I hesitate to share? To write? To journal? The thoughts in my heart are painful. They are hard. They don't make sense to most and I get that. Its ok. This is so unreal. We know we are being watched by many. I keep things like this to myself because I know that unless you are living it or have lived it that it may seem like we are planning not to receive another miracle. That is simply not true. Its not, but this life hurts. It just does.

So today I bought the kids yearly Christmas ornaments, and I planned the theme for Ashley Kate's tree. I may even start decorating it by the weekend. I have a lot to get done and I want to make sure it happens for my family no matter what else is going on in our lives. This mom's heart wants to bring peace to my home and to my family and what comes to mind is Christmas. The warmth, the feeling, the tradition, the music, the lights, the smells, the everything. Our home is full of happiness during the holidays and that is exactly what we so desperately need at this time. So...I'm going to bed. The Christmas music is already playing because its what Ashley chose to listen to a week or so ago. It makes her happy as she tucks her tiny hands under her cheek and snuggles underneath her quilt. It makes me happy too as I stare at her till my eyes can no longer see through the tears. Oh, how I love this girl.



I get asked almost daily this question. I guess I don't have the answer because I always hesitate to answer it. The truth is I just don't know when. We don't know and there is no one who can tell us when.

When we will go back for transplant?

If I could have things my way I would say "never!". That is my want. I don't desire to do this again. I don't look forward to seeing her teeter between life and death. I don't want to have to be concerned on a moment by moment basis if she will ever wake up and breathe on her own or if she will ever make it back on that plane headed toward home again.

We have so many questions. Questions that no one is willing to answer for us. Not yet anyway. I suppose my best guess is that maybe in November or December we will go to Omaha for an evaluation process. This trip means nothing more than that. Evaluation. They will have Dave and I meet with financial counselors, psychological counselors, social work, nutritional counselors, and surgeons. They will run tests on Ashley Kate. She will be examined by a neurologist(not my favorite person in this whole equation!), by surgeons, by interventional radiology, and by vascular surgery. This process is different than her first one. Its obvious she needs the organs. That is not the issue. Our biggest hurdle to overcome in order to be listed on the organ transplant waiting list is line access. She can't be transplanted with a hepatic central line. They will be removing the liver and replacing it with another one. That means that once they take it out there is no support site to keep her alive during the operation. The only way she can be transplanted is if they can find access above her diaphragm. Currently its all blocked, but they are going to evaluate to see if they can "break" through one of those blockages to make a way to insert a central line. Its really scary. Not only for the operation, but also for the post operative period of healing. If history repeats itself, transplant children battle multiple rounds of sepsis from infected central lines in the post operative healing phase. If this happens and the "hopeful" line has to be removed where will they place another one to support and keep her alive? There is not another place to go. Not only does Ash need to survive transplant she needs to come out of it and not get ANY infections in her line or blood stream. This will take a miracle like you have never seen. Dave and I know this and the knowledge we have from experiencing it with her once before is crippling. If you haven't been with us long, you are welcome to go back to the early days and read the ups and downs of healing from bowel transplant. Its not an easy read, but will give you an understanding of what our Ashley is facing. The biggest factor in deciding if she is a candidate for being re-listed for transplant is line access. We believe the team will agree to try if they can establish access. Its just not going to be easy.

So...once she is listed what happens? We wait. It could be days, weeks, months, or years. There is no time table to measure it by. Dave and I suspect that it may take longer to receive organs this time. Just because of her age. She was transplanted at 14 months the first time and weighed about 12lbs. The donor must be 20% smaller than the recipient so that pretty much meant it was a newborn donor. This time she is 5 years old. You can figure out where I'm going without me needing to say it. Our first time on the list was only 20 days. Because of this we are in a hurry to be re-listed because the waiting may prove to be difficult depending on the status of her current liver. She may or may not survive the waiting period.

On the other hand we are in no hurry. No hurry to leave again, to separate our family, to watch her endure such pain. We do not wish to go through this again. If she had multiple access sites left then I can tell you that we would wait. We would give her more time at home to grow up and be a little girl before taking her back to the hospital. There is no question in my mind that I would not be in a hurry to repeat this nightmare. The fact that she is living with this one and only line site is dangerous. At any given time we could lose this line to infection. Add to that the fact that her liver is very, very sick and won't hold on indefinitely and we don't have much time. How much time? Only God knows. Truly, there is nothing more than a guess that can be made by any mortal man.

Our only hope at having the opportunity to watch Ashley Kate grow up is survival of yet another transplant. I hate knowing that it is really our only option. The other choice is not acceptable for us. We do not wish to watch her die a slow, painful death from liver disease.

This is the best answer I can give at this time. Its confusing and complicated and not really an answer at all. These are the things that I push out of my mind every single day and I desperately try not to dwell on them. I wake up and live life as normally as I can and "pretend" that all is well for us. We have been given this time together and a few months ago I didn't know that we would ever have another day to spend together as a family of five. I just keep doing the best that I can. Not much else I can do.


Long Over due

Its been too long since my last update. I know, forgive me. We are in the process of switching computers at our house and it makes posting very difficult. Today is the first time I've had any internet in almost a week. is an overview of what has been happening around our house.

Our sweet girl is so wonderful. There are moments in our days when I allow myself to forget about the "truth" of where we are and just get lost in the amazing memories being made with our beautiful Ashley Kate. This picture was taken this afternoon. I think she looks AMAZING! Stare at this face and just try to picture where she's been this summer, what she has survived, and how far she has come. Wow. It gives me chills when I remember.

I share the beauty of these moments with you because I'm exhausted with the ugliness of the others. I truly am. Not all of her days are like this. Not even all day long are her days like you see in this picture, but there are moments of them that are as sweet as what you are looking at.

Each and every day we go outside. The weather has changed and with its changing God has granted us some of the most beautiful memories we've ever shared with our Ashley. She loves to take walks. LONG ONES. She wants to go, go, go. So...we do. We take turns. Me, my mom, and Dave. It gets exhausting to keep going and going and going so we tag-team it. She doesn't care who is pulling that wagon as long as that wagon keeps on trucking.
Ash is still sleeping a lot more than she used to. I mean A LOT more than before she lost the bowel. She used to sleep this much before she was transplanted. Its the whole liver disease issue. Its exhausting for her. Her energy level gets depleted very, very quickly. Her liver numbers are still elevated. Its still struggling to survive. We are still no closer to obtaining Omegavin than we were months ago. It is heartbreaking to know there is help out there and yet it remains outside our reach.

Other than her liver disease and the need for a new one, oh and the need for a bowel too, she mainly struggles with retching and vomiting. Its daily. All day long. As soon as she goes from a lying down position to a seated one it begins. She begs for water. Constantly, and yet she can not tolerate even the smallest of sips. As soon as it goes in the vomiting begins. There is almost no flow into the remaining few inches of bowel. Its as if it sits in the stomach until it reaches capacity and then all comes up. The constant laundry is exhausting. Without my mom's help I'm not sure I could survive the mounds and mounds of it.

Her meds have been weaned again. She only remains on 12 mics of fentanyl and we hope to remove it next week. Each week we witness the life in her eyes coming back to us as we watch the drugs disappear from her system. Her liver function is also better without the struggle to metabolize the narcotics. Her indirect and direct bilirubin remains around 12, but that is down from the previous weeks of 14 and 17. We are grateful for any changes in the right direction.

In all honesty if I could keep her here and NEVER put her through the pain and uncertainty of transplant I would. I try not to think of the day that we will leave our home. I try not to think of the struggle that lies ahead of Ashley Kate. I hope in the deepest part of my heart that this line will hold up for years and years and that this sick liver would repair itself so that my girl could just stay home. Stay home and live. Live for a long, long time. I know its unrealistic but the knowledge that we are starting over is so painful for me that it cripples me if I think on it. It makes me want to hide and never open my eyes again.

So...I'm trying not to think about it. Instead I am soaking up the days we have here together. My mom is a huge help. Her presence allows me the opportunity to be there with and for Blake and Allie's activities. I am LOVING this time.

Allie's volleyball and soccer seasons are in full swing. It is so fun to watch our girl play ball. She is such an incredible athlete. What joy it brings to our hearts to see her on the court and on the field. Allie doesn't play anything just a little. Its all or nothing for her.

She has picked up the game of volleyball as if she's been playing it her whole life. She is having so much fun with her team, her coaches, and all of her friends. School has been amazing for her this first 6 weeks. She LOVES it. I worried and worried over the change in schools for her, but so far its been a huge blessing. I am afraid of leaving her. She is at an age where moms are important and in all honesty there have been tears shed over a few things before bed on a few nights. Growing up is not easy and you kind of need a mom to share broken hearts with. Dads just don't get the whole "boy" thing. According to Dave and Blake, Allie is free to be interested in boys at the age of 30 and not a day sooner. Blake has already taken it upon himself to text some of them (without her permission) and warn them to stay away from her. She could have died! Lots of tears of this one! Although I understood her being upset I kind of smiled on the inside knowing Blake has told this one kid, "I'm your worst nightmare". How could I not laugh about that?

She is still playing for the Texas Pride. This will probably be her last year in rec soccer. She needs to go club. She has fought it for years not wanting all the travel, but she's ready now for a little more. She has the opportunity to play as a guest for a club team in a tournament this November. That will be a great "test run" for her before tryouts in January.

Blake is great. Loving his life. Loving baseball. Loving high school. Loving his sisters. Not really loving his drivers ed class that starts at 6:50am causing him to be in the gym by 6 every morning so that he and Dave can get their work out in, but the pay off will be worth it. In a few weeks he will get his permit.

He is playing on two different teams this fall before trying out in December for the high school baseball team. He's doing great. Playing some of the best ball of his career so far. I love watching him. I really get lost in soaking up each moment he's out on that field. One of my biggest hurts about leaving for transplant is knowing I will be missing out on his first high school baseball season. I try not to think about it because it does make me cry.

Blake turned 15 last Saturday. Wow. It amazes me that my son is 15 years old. I could not be prouder of this young man. I love him so, so much. He is a great kid. Truly he is. We celebrated his birthday with his girlfriend Allison who also turned 15 the very same day. It was a wonderful party with lots of fun and fellowship with their closest friends. I couldn't imagine celebrating it any other way than we did. They are both such great young people who make us so very proud. The also celebrated their 1 year anniversary that day. Crazy, I know, but he is blessed to have such a sweet, beautiful girl in his life. She is a blessing to him and that makes her a blessing to us too.

So...we are doing it. We are home. We are living life. We are enjoying our family. We are loving on all three of our kids. When you face days that make you unsure if you'll ever get to have them all together again it makes the reality of actually living them so precious. I can't describe to you how good it feels, among the pain, to just be here with our family. We still hurt. We still cry. We still question. We still wonder. We still pray. For help, for direction, for miracles, for organs, for another way, if only there could be another way made for us to keep her in our lives. We just do...but...we are surviving and soaking up the moments we have been blessed with.

Thank you for your continued prayers. For all your kind words of encouragement. Thank you for sticking around. Its a rough life, but its a blessed life. I think we can all agree on that. Good night and God bless you. Trish


She has good days...

...and bad. I'm learning not to count on one or the other at any given moment in time. Some days are wonderful. Like Tuesday. The weather was so beautiful and she looked so amazing she and I took her Amtryke out for a "walk". be truthful she rode and I walked. She of course can't pedal it herself, but she enjoyed being outside so very much. The moments were precious. Ones I will treasure in my heart forever.

Today? Not a good day. She's sick. Not right. We are concerned. More so than on a normal day. Yesterday we were at her doctors appointments in Shreveport and all was well. Labs ok. Liver is very ill, but the rest of them were all stable. Then today she has felt awful. Lots of vomiting. She vomits every single day, but tonight or actually just moments ago so I guess its now morning she got so sick. Luckily I was holding her up to my chest. Had she been sleeping or lying down it would have been extremely dangerous. No one really knows why she vomits so much. We thought perhaps a side effect from the many narcotics, but she is basically weaned from all but one and the incidents have increased rather than decreased. Its something we've experienced in her life before, but it is "new" again too. She spiked a fever for about an hour this evening, then it disappeared. She got very, very fussy. Still is. I guess what I'm saying is...her line...the hepatic one... the last one...has us frightened. If its infected we could potentially be in for a lot of trouble. I'm hoping since the fever was very low and lasted such a short period of time that its nothing to do with her line, but you have to check. In a child like Ashley Kate you have no choice but to find out. I almost wish we could ignore it because if something is wrong I really don't want to know. I just want to raise my daughter and stop living with the cloud of " not growing up" hanging over my head. I want to pretend that the world is right and our five year old is fine. I want to forget about transplants, and survival, and infections, and scary stuff. Unfortunately that is not the way life works. Especially in the situation we are living in. So...blood cultures...and we wait.

Outside of learning how to live in this new place we now reside, life is...ok. Overwhelming at times. Frightening at others. Blessed most of it. How can I feel so blessed when I know she's slipping closer and closer from us the longer we have to wait for new organs? I can't explain it. I guess its just that when I look on her face, and on the faces of her big brother and sister, and hold onto the hand of her daddy that I can't help but feel like I've been blessed more than most. Life is painful, but its also beautiful. Like bike rides on lovely fall afternoons with the most beautiful five year old girl around.

The blog design? Well...from what I can tell a lot of other blogs designed by the same designer
(years ago) are experiencing the exact same problems. Something expired or whatever. So...all we have had time to do was a hit a button and pull back up our original from the first few weeks we began journaling. It has lots of stuff that needs to be removed, but Dave didn't have time to figure out how.( We know the original web site listed doesn't exist anymore(well, it actually does in some archive that I have the address written down in some drawer in the kitchen). We also realize the hospital address is on there. Don't send anything there, we won't get it right now.) I don't really want to spend time figuring it out and so someday we may take someone up on the offer to help or we may figure something simple out on our own or we may do nothing. I just don't know yet. For those of you who said don't worry about it you aren't here for the blog design but instead for the content then I just wanted to say thank you for that. No pressure. That's what I need at this point in my life. I of course preferred the sweet picture of our Ashley's tiny hand in her daddy's the morning after transplant, but its gone for now. For now its pink, and plain, and boring, but its still ours.