Making memories, memorizing the moments

This weekend Dave and Allie are in Dallas playing volleyball. I stayed in town to watch Blake play baseball. I received a phone call from Dave this afternoon. He asked if we were in a hurry to have them home or did they have time to make a memory. Instantly my heart was blessed. Blessed by the man I am married to because of the father he chooses to be to our kids. So he and Allie proceeded to spend the evening in downtown Dallas together doing nothing other than making memories that will last a life time in the heart of our daughter. I've received a few texts through the evening. Things like, "we are on the 38th floor and she's decided she'd like to be a window washer". You would have to know our Allie and would have to see the length of her "bucket list" to appreciate that she's added one more task to it. Window washing:) The next one was something like, "sitting on the roof top waiting for our dinner to be served and enjoying a plate of fried pickles together". Not really my thing(I'm terrified of heights and I don't care for pickles near as much as the two of them do) but so "Allie". Made me smile. '" On our way to the "big ball" just for the fun of it". She's wanted to go there "her whole life". So thankful he was willing to take the time to make sure she got to. The two of them are still in the big "D" and have yet to make it home.




This morning Blake and I ran to Kilgore to watch his Allison perform her solo at the dance competition. It was really beautiful! She is really beautiful. I really appreciate that sweet girl in his life. We spent the afternoon at the ball park as he played in the final game of this weeks tournament. I love the ball park for no other reason then the fact that he loves the ball park. I love to watch him play the game. I'm so proud of this kid. So proud. Tonight he and I went to the movies. Just the two of us. I love that. Its our thing. Movies that Dave and Allie would have no interest in, but Blake does and so I do. We've been doing it for years and the time invested with him doing nothing other than sitting in the theater next to him is something I know I'll never regret. Just memorizing the sound of his laughter and the smile that crosses his face. He is so grown up. Not much time left with him in our home. Its going by sooooo fast!



Ash spent the day playing in the play room and scooting around the house. Her nan took her on a long walk around the neighborhood and she enjoyed collecting leaves and sticks and listening to the birds sing. She was very, very smiley today.

Tonight Ashley Kate sits playing angry birds and hollering at me to hurry up and come back. She laughs so hard at those silly birds and she's getting pretty good at smashing pigs. She is the sweetest thing. As I go in to check on her she pats her bed and request for me to lay down next to her. We giggle together as she shows me how to make those birds fly across the screen. I love the moments when she asks for us to hold her, sit by her on play room floor, or snuggle in next to her on that tiny big girl bed of hers. My heart melts each and every time.

This life is precious. So precious. I'm savoring the moments, the running the kids here and there, the ball games, the hectic schedules, the late evening hours when we are all home together. There is nothing about this life that I am not loving at this moment. The moments that my heart hurts still come and go throughout the day and night, but I'm getting much better at concentrating on what we are being given at this time.

Its been a good, good day for us. A day full of blessing. Memories and moments I know we will appreciate forever.

Thriving

She looks incredible! She is incredible! Ashley Kate is absolutely thriving!

I would have never thought days like this would ever be a possibility for us again as I sat with her tiny, pain ridden body, that was so broken and so weak just a mere 8months back. I never dreamed our girl could continue to live a life so fully without her bowel. I am blown away at every single day we are given with her in it.

Ash is happy. So very happy. She is beautiful. She is so stable it scares us. Even with this fragile central line she continues to thrive. Even with an infection so frightening raging inside her head she continues to thrive. It doesn't make sense. None of her life really makes sense. Its one of those things you look at and say, "How? Why? What is making this work?" and then you answer, "God." Thats it. The only answer that can even begin to explain this child of ours.

We are busy living. So busy just living with our daughter. I have no time to devote to thoughts of tomorrow. No time to worry about the whens and wheres of transplant. No time to waste on the wondering of things I cannot change. I'm enjoying watching Ashley Kate be 5. I am enjoying her smile. Her laughter. Her hugs and kisses. Her antics. Her happiness.

Today Ash is thriving. Today is what we have. Today is where my focus lies. Today is enough.

Tomorrow things may be different. Tomorrow may not even come. Tomorrow I can't keep from happening what is supposed to happen. Tomorrow her life is capable of slipping away from us.

I'm allowing Ash to live for today and although we know her tomorrows are going to be rough, still we smile and give thanks for today.

Oh, how I love this little girl!

Pressing On

So much has been happening in our little part of the world and the place our family finds itself in as of late. Much has been wonderful and some has been laced with hurts and disappointments. Its such a tapestry of experiences being woven together that perhaps tells the story of just who exactly we are, this group of people who call themselves Adams.

I have found myself repeating to myself and to my children again and again a little phrase that I believe God laid on my heart during one of our biggest hurts. What happens today does not define who we are tomorrow. It does not. This is not the end of the story, but perhaps just a piece of it. Because our hopes and our dreams did not come to fruition(is that even a word?) does not mean that our future has been determined and our dreams have died. Today is just today and it is nothing more. We will continue, we will still dream, we will work hard, we will laugh, we will play, we will be better because of this. We will. How do I know that? Because I know us. I know this group of people who call themselves Adams and I know what God has placed inside of them. He made them out of some of the very best character traits around. They have what it takes to see past today and its struggle into what He has in store for their futures.

My kiddos are incredible people. My older two, my teenagers(how did that even happen?) are amazing young people who have been transformed into the people they are through the struggle of our youngest. They have seen her triumph over great adversity and because of those experiences they too have learned to press on through the adversity that is set before them. I love who they are. I admire their character. I trust their character even in the most hurtful of situations and its because of that trust in who they are I know they will overcome. This does not define their future. Today does not tell the whole story. It does not. It will not.

In this life as I, as we, face some of the most painful of experiences I find myself grateful to have this home and this incredible group of people assembled together inside of it. God in His wisdom formed this family and gave us to each other for times just as this and we "got each other's backs" so to say. In all of the struggles and victories this life has to offer, the five of us are pressing on together reaching for the goal, dreaming the dreams, and striving to be the very best at all we endeavor to do. Together.

Today those thoughts bring great comfort to me and a smile has even come to my face. So...bring it on...we got this.

The best is yet to come

Wow! My sweet, amazing, beautiful, talented, funny, precious girl turned 13 this morning. Oh, how I love this child!

Our Allie is beyond description. She is so much more than words on this page will ever describe. She brings fun to our home, to our family, to our lives. This girl is one of the best kids I have ever known. The other two happen to be her siblings:) I can say that because I'm her mom, but I can say that even more because she lives a life that tells that to all she meets. I'm so proud of her. So grateful to know her. So happy she is ours.

A day doesn't go by that we are not laughing at what this girl has to share with us. She has that part of her daddy inside of her. The part that finds the humor in life and the ability to make others around her happy. What a joy this little girl has been to us.

My beautiful girl,

You are exactly that. BEAUTIFUL! How proud you make us all. You are a gift from our Father who created you to be all that you are and all that you are becoming right before our eyes.

Your smile and your laughter is contagious. We love you Allison Brooke! Daddy and I look forward to every day as we watch you grow and mature and live your amazing life.

How do I express to you what you mean to me? You are the baby who put a sparkle in your daddy's eye from the very day we found out your were you. You are the baby whom he named on the drive home from the ultrasound! You are the baby who stole his heart that year. You are the baby who made Blake a big brother. One of the very best parts of him! You did that! Wow, Al you came into our lives and changed this family like it had never been changed before. The day you were born you should have seen the looks on the those two boys faces. They were in love. In love with a daughter and a baby sister and they have never been the same since that day. You are the baby who prayed again and again, night after night for us to "go get you" a baby sister. Your desire was to be a big sister and Allie I have the privilege of watching you be that big sister every single day. Nothing touches my heart more than to witness you love on your baby sister. Its breathtaking!

Your zest for living is inspiring. You are FEARLESS! How I wish I could be more like you in that way. You grab on to the fun and the adventure this life has to offer and you never look back. No fear resides inside of you! I'm so proud to be your mom. So proud!

My prayer for you is that you will always see the value when you look at your reflection that daddy and I see when we look at you. You are a priceless treasure created to do and be great things for the Father. Never allow anyone to make you doubt who you are in Christ and who you are in this life. There will be many who seek you, but my sweet girl keep your eyes on the prize that God has set aside for you and don't ever settle for less than His best. I'm praying for you daily. I'm cheering you on from the sidelines. I'm loving you with my whole heart for everyday of life that God gives us.

Happy 13th birthday baby girl! You are the one God gave to us and the one we will treasure forever. The best parts of your life are yet to come. The Father has a plan for you Allison Brooke and I'm so excited to be a small part of that. I love you Al. I love you to the moon and back again. MOM.

The world we live in

I don't know what to say. There are days when living in the world of small bowel transplant hurts so deeply that I don't know what to share. My heart aches this morning. It is painful to watch one of ours prepare to lose a child whom they have sacrificed their all to give a childhood to. I hate this part of our life. I hate the part that woke us up to the pain, the suffering, the heartache of childhood illness and death. I'm sad today. Hurt. Confused. Angry.

Life before Ashley Kate was simple. It was so easy to wake up every day in our perfect little world, with our perfect little family and live. Still, life with her in it is has become richer, sweeter, and more precious than it ever was before her. What a mixture of heartache and joy. Such a bitter pill to swallow that has allowed us to love like never before and to live with such purpose. My perfect little world was shattered the day she was born and my eyes became more focused on another world. The one that we will eventually call home.

Still that knowledge doesn't ease the pain of watching them leave our home's and running into the arms of Jesus. We ache and we hurt and we grieve the losses we feel while we are left behind.

Today, my world is still in tact. My sweet girl laughs, and breathes, and giggles, and plays although her body is broken and her prognosis is poor. So for today I avoid the grief and I concentrate on the moments in front of me. Still able to ignore the pain the future holds for us. In other homes of our precious transplant community the grief is knocking at the door and the parents are preparing to face a future without their sweet child in it.

Its a tough day in our community. We are all hurting as we stand by an can do nothing but offer our words of support, comfort, and prayers. We are all praying for a miracle. Still holding out hope that some way these miracle children will have another one in them.

Praise!!!

Just wanted to report and give thanks for Omegaven. It has made SUCH a difference in Ashely Kate's lab numbers.

Are you ready for this....drum roll... for the first time since ex-plant of her bowel and becoming TPN dependant in July of last year her liver function is COMPLETELY NORMAL!!!

Bilirubin-normal, direct and in direct, Liver enzymes-normal, all across the board!

She is not dying from liver failure which is the course we were headed down when we brought her very fragile body back home at the end of August. The Omegaven has turned it around and at this rate if only we had line access I can assure you we would wait a VERY LONG TIME before listing her on the transplant waiting list. Unfortunately, we don't have line access, and so the health and function of this one and only central line will determine our course for us. Currently its rocky, and has yet to declare itself and so we are still waiting to see what is going to happen with it.

I just wanted to share with you and encourage parents of TPN dependent children who may be experiencing choleostasis of the liver to push, to fight, to make calls, to not stop until they have Omegaven running into the veins of their child instead of the status quo lipid emulsion. Its worth the fight. It is so worth it.

Sensitive

Just received word from our physician that the two big gun antibiotics she has been on round the clock for the last week have not been the correct ones for this bug. Ugh!!!

Starting over with a new drug. Its toxic to the kidneys and so we will be checking drug levels every couple of days.

I can't remember a time in Ash's life that she has been on antibiotic coverage for this length of time. Its so disheartening. So concerning to us.

The wound has yet to seal shut and when I mentioned its continual draining our doctor said, "In this case that is a good thing since what we have been treating the abscess with has not been appropriate coverage."

So here we go...as soon as we receive the new delivery of meds we will begin at square one and start over again. I was grateful to have a full week of treatment behind us, but I suppose that was just too good to be true. I'm tired. I'm not going to lie. The interrupted sleep every single night for the last 5-6 weeks is catching up with me and I'm having a hard time catching up. Ash has had 5 days off of IV antibiotics since the placement of her central line on Dec. 28th. That means I've had 5 nights of normal sleep. As normal as beeping pumps, alarms, and bag changes can be, but at least I had adjusted to that. This? not so much. Not yet anyway.

I'll get there. I'm just really struggling today. Very thankful for the help my mom is giving at this time. Without her in the house I'm afraid it might just start to fall down around us.

Now that the sensitivities have shown themselves I am hopeful we will be able to rid her of this infection before it spreads to the areas we need to keep it out of. Particularly her brain and CNS.

One Week

Its hard for me to realize that it has been a whole week since we first discovered the lump of infection on the back of Ashley Kate's head. What a week it has been!

The range of emotion I have been through since the discovery is exhausting all in itself. My first thoughts were those of cancer. I know it may not seem logical for most to immediately have thoughts of cancer, but when you reside in a world like ours with Ash and when you know how at risk transplant children are of developing cancer then it makes perfect sense. I spent most of last Sunday in a panicked state of prayer for my girl and the newly discovered lump.

As her physician examined Ashley last Monday morning I knew immediately that something was wrong. His demeanor and urgency was different than in our past visits with him. Still I was unsure what we had discovered, but the immediate CT scan would show us soon enough.

As we viewed the images of her head with the radiologist Dave and I were once again thrown into the part of Ashley's world that causes us some of our greatest pain. I never view a CT of her brain without the feelings of anger and confusion and frustration entering my mind and my heart. It immediately puts me on the defensive and as complete strangers to me ask us questions about her development and her cognitive levels I become ready to defend and fight. Its crazy. Crazy because I know its coming and crazy because those feelings are so ridiculous. I don't have to defend Ash to anyone and I surely don't need to fight anyone. They are doing their job and making their observations. They aren't passing judgement on Ash.

Its almost humorous as we discuss the times in her life that I have felt ready to fight the whole world. If you knew me, you would know I don't like confrontation. You would also know that the last thing I'm going to actually do is fight anyone, but when it comes to your kid I think a false bravado comes over a momma. You think you are the biggest, baddest thing to ever walk the earth and fight you will if it comes to that. Its ridiculous, but its what us mommas do. There have been three times I can distinctively remember feeling as though someone was going to get slugged by me. The first came the day we entered the NICU and the neonatologist described our sweet Ashely as failure to thrive. Ready to fight. The second was the day I sat in the PICU in Omaha and one of the nurses informed me that Ashley was a chronic patient. I didn't know what that meant at the time, but moments later as it was described to me I was angry. What did she mean we would be a constant patient for the rest of her life? Ready to fight. The third happened last Monday as the man who read Ashely's CT scan with us, who had never met my daughter and had never seen her immediately looked at us and said, how severe are her delays and what are her other diagnosis'. I was angry. Ugh!!! not really at him, but at our world. How could he immediately know she wasn't "right"? What on that stupid screen of images let him make those judgements about my beautiful Ashley in a matter of seconds? What? I was so angry, so hurt, so injured by his words.

Honestly there was no time to dwell on that though, Dave and I viewed those scans and in those moments we knew there was trouble and it was the kind of trouble that would have to be dealt with soon. I drove home, unloaded Ash, walked into the house, and the phone rang with the instructions to get her to the hospital as soon as possible for a direct admit. She would be in surgery in a matter of two short hours. And she was. It was that fast.

As Ash was in surgery our pediatrician came to her room to check on Dave and I, and I had the images of her CT pulled up on the screen. We were joking a little as I shared with him my "anger" over the fact that a stranger could immediately tell somethings were wrong with Ash just by looking at the images. I announced that I did not really care for that man who read Ashely's CT results. He laughed a little at my description and then I said, "What? What is it that told him that in a matter of seconds? I want to know? Where is the flashing sign that says assume that?" He, still smiling at my reaction, patiently walked us through the images of her brain and showed me just exactly what it was that told the story.

When I say I have run through a wide range of emotion over the last week, this is just the beginning of it. I could write for days about the places God has taken me inside myself this last week. Ugly places and lovely places all mixed into one big mess. I'm exhausted. I'm grateful. Beyond thankful for the discovery and the quick actions that ultimately spared us more brain injury. I'm learning to accept the places we are in with Ash even though my heart desperately wants to stand up to them and the whole world and declare that she indeed will have a normal childhood and normal life span. I'm processing a lot at this time and God is working to bring me to the places that I have to get to as her mommy. Its not fun. Believe me its draining me, breaking me, and building me all at the same time. One of the most difficult parts for me came yesterday when I had to actually cut pieces of Ashley Kate's precious hair that we have been desperate to grow back since losing most of it this past year out of and away from her incision. My heart was devastated yesterday afternoon, but in order for her to heal I had to make that heart wrenching decision. It made me physically ill. I have NEVER cut Ash's hair. We have lost it many times over the course of her struggles and infections, but I have never intentionally put a pair of scissors to it.

How's Ash been through all of this? AMAZING. I can't describe her in any other way. She has amazed us all. Her incision and her ear are very, very sore. She is protective of it. Very protective when I try and go near it to dress or clean or examine, but other than that she is so great. She has played and laughed and continued on as if none of this happened. She amazes us all. Her parents and her physicians. This child is made of steel! Truly she must be.

So today brings me to one full week since discovery of the infection that could have stolen so much from us. It was silently residing in the spaces next to her precious brain that we have fought so hard to protect. It entered through a common ear infection that went unnoticed because our sweet girl is just that tough. She never made a peep, never a sound, never a symptom of a common childhood illness. The bug that invaded her is a monster of a bug and if not cleared from her system will in fact keep her from being a candidate for another transplant. We are working to complete treatment and with one week down and two weeks to go I am hopeful with each and every infusion I connect to her precious, fragile central line.

The beauty in this whole situation is my Ashley and the joy she continues to radiate throughout our home. She is precious and her laughter floods the rooms and the halls daily. More than that it floods our hearts as well. I don't have many pictures that I can really share since coming home with her. She looks really, really yucky. Her hair has not been shampooed since last Sunday, moments before I found the lump on the back of her head. Its sooooo gross! I have to wait until Wednesday before I can wash it again. The incision is still draining into it from where they removed the drain(it has yet to seal closed). She's not looking very pretty these days, but she is happy. I may load a video clip on here today and allow you to hear the sounds of her laughter. It was filmed late one night this week when she should have been asleep, but instead had turned on her ipad and was playing angry birds by herself in the dark. The quality of the image is awful, but its the sounds of her voice that I was attempting to capture. A sound I hope to never go silent. She was so, so funny and I stood outside her door praising God for my daughter and her spirit.

One week. Its been along one!

Knowing

I answered a call from transplant this afternoon. I'll be honest and admit that I don't always answer those calls. Sometimes I let the phone ring, listen to the message and see who it is and what they have to say before deciding if I'm up to calling them back. Its the truth. Today I was blessed and it was a good coordinator. The best in my opinion. The one whom I know truly cares about my baby and my family and who I have seen work very, very hard to get us back home. I breathed a sigh of relief when I heard her voice. She's just easier to talk to then some of the others. We aren't supposed to have favorites. I know that. They work as a team. The coordinators, the surgeons...we are told not to have favorites, but truth be told I've got them in both areas. Some days are just easier in the transplant world depending on who is on the other end of the phone line.

Anyway, the last time I spoke with them was Monday afternoon just moments after the doctor's office had called to tell me I had to get Ash admitted as soon as possible because they had to do emergency surgery that night. I was hurriedly throwing things into a bag when the phone rang. I gave a quick rundown of what was taking place to the best of my understanding and left them hanging as I ran out the door. So today was a follow up call to see how Ash was, if she were still in the hospital, and what the surgeon had seen. Then came the part where I got to tell them about the cultures showing that the infection was pseudomonas. Not my favorite part of the conversation, but it had to be done. Now its documented. They actually document all of our conversations. The surgeons now know. The four surgeons who have yet to decide of they will list Ashley Kate for another transplant or not. Yup, I had to let them know she has pseudomonas. Ugh!

I also had to inform them of the new issues with her central line. Not fun. Its documented now too.

Basically these things can keep her from being listed. Its the truth. It stinks, but its where we are and what we are dealing with currently.

I told the coordinator we still weren't ready. We didn't want to hear their answer yet and we weren't ready to have her listed just yet. "We are enjoying her. We are watching her live. We are listening to her laugh. We just can't give that all up just yet. Not yet." Although her new line developments may change our thought process depending on how things progress. The coordinator was very supportive. She said, "You know the truth. You know what can happen. You know what its going to be like. You know too much. Its ok that your not ready yet. I can understand that. Let us know when you are."

I left the conversation thinking about her words. She nailed it. We KNOW too much. We aren't new at this. We've been through it before. We know what lies ahead for Ashley Kate. We also know that it won't be an easy road. Its going to so very hard on her. Physically and emotionally. Its going to test our faith and our spiritual walk all over again. It is. We know it is. Dave and I were talking Monday as she was in surgery and at one point he shared with me that Ashley's life and situation had helped his faith grow in tremendous ways and yet it had also tested his faith and made him question a lot of things he thought he knew. I completely got what he was saying. I'm there with him. Our faith has been put through the ringer and there are days when we are left hurt and confused and scrambling to hang on to all that we thought we knew and believed. I don't pretend to have it all figured out because I don't. I have far too many questions and so few answers.

We are in an impossible place and still aren't sure at which time it will be right to change directions. For now though our plan is to enjoy our daughter. We plan to allow her to be 5. To laugh, to play, to be carefree and to be pain free. We plan to give Blake and Allie time with her. We plan to give ourselves more time with her. In the end though we will have to take those steps back into transplant in order to have any chance at continuing those things. I just can't imagine putting her through it right now though. I can't. She is so sweet, so happy, so safe. How do I steal all that she depends on from her? How will I ever make her endure the fight again? How? I know that we will. In time. I know that the other option is death if we don't try and that is simply something that we can't live with. We have to try and give her a childhood. We just do. We have to fight for life. Anything else is so contrary to all that we promised to do as her parents. Oh, how I wish this was not happening. How I wish I could keep her from ever hurting again. My heart is so tormented. It truly is.

Knowing all to well what we are up against is making it soooooo much harder the second time around. In many ways I wish we could be naive again. Just naive enough to make it to the other side of re-transplant. I don't want to know all that I do. The knowledge is proving to be too much.

One more day

This day is coming to its end and I sit back and breathe deeply as I remind myself that we have made it through one more day.

For some reason I carried around a heavy sadness inside of my heart that I just couldn't shake. I fought back tears for most of it and tonight the sting of the tears in my eyes seems too difficult to hold in. I'm tired. Tired of the worry, the stress, the hurt. I can't explain why it has hit me so hard today. There is no particular reason. Its just been one of those really hard days.

Ashley Kate sits on the lap of the one she adores and shes giggling that sweet, uncontrollable giggle that comes from the joy inside of her heart. She is smiling so wide. She is safe. She is happy. She feels none of the sadness and carries none of the weight that my heart does tonight. I'm so grateful for these moments I'm witnessing. I'm so thankful she has a daddy that adores her as much as she does him. I don't want to feel sad. I want to embrace the happiness that our sweet girl feels at this moment, and yet its the image in front of me that makes me hurt so deeply knowing it won't last forever. Our time is short. Its running out. It is.

There are so many things I still want to do. So many things I hope for Ashley Kate. I'm not ready. I don't want her to have to endure transplant again. Not yet. I just want her to live like she is now. Truth is though her line is not looking good this week and the reality of our world is slapping us once again. My prayer is that the problems will resolve and that we will have the opportunity to keep living with her joy, her laughter, her carefree smile surrounding us day after day after day.

There is a very heavy weight on my heart tonight and oh how I wish I could remove it.

She's in Love :)

With yet another "dinosaur".

Its name is actually "Ashmore". It couldn't be more perfect for our girl.


Ashley Kate has a new love...of course she has not abandoned the old one...her heart has room for both.


To be loved by Ash is a wonderful, wonderful thing. The sweetest thing I have ever known.


She is home tonight. A little swollen. Bruised. Bleeding a little and draining a lot. The drain tube was pulled this morning. She has two rows of sutures from the top to the bottom of the back of her ear. If you pulled them out I imagine her entire ear would flap forward. It was literally cut all the way and laid over. So weird to look at. So weird. But...she's happy. So very happy. The moment we sat her down in the play room she gave a round of applause. So, so funny.

On the infection front the news is not so good. Its actually a pseudomonas infection. We will battle it the best we can with the meds that are available and we will take it a day at a time. At the completion of the antibiotics we will repeat a CT scan to check and see how well we have done. Praying it will be resolved.

We wanted to say "Thank You" for sending Ashmore. It was such a sweet blessing to watch her receive. :)

Before...


After...


First thing this morning...


A few minutes ago...



Again this morning both physicians stopped by and let us know just how severe things were. Its soooo hard to believe that an infection of such magnitude and severity is actually inside of her when I look at her. She looks fine! Honestly, the doctors still can't believe how good she is doing with all of this. They said she should have been miserable, screaming, crying, very, very sick. Instead she's playing, signing, giggling, and bossing us all around.

The surgeon shared with our pediatrician that it was absolutely awful inside of her. The bones were literally eaten away by the bacteria. Everyone is curious to see what bacteria it is and how in the world it has survived inside of her for so long without detection and without succumbing to the antibiotics she has been on since this central line was placed. We are all waiting to see what bug it is and hopeful that we can kill it as soon as possible. They expect her to be on a very long course of IV antibiotics.

The long and short of our situation is that even if we were ready to tell our transplant team to list Ash they would not. She has had one infection after another since the line was placed at the end of December, and she would have been removed each and every time until she completed the course. So I guess its a good thing we aren't quite ready because its an emotional roller coaster when you have them pulled off and put on and pulled off again. I would be a mess!

Ash looks great. She really does. Sitting here all week is going to get challenging. For us all.

Again I just want to say how GRATEFUL we are for how well things have gone and how quickly she was taken care of. Its just so unbelievable to be sitting in the hospital this morning after an emergency surgery last night. What a crazy life!

Stunned

I'm trying to sleep. Dave sent me home to get a few hours of rest tonight. I'm having a hard time though. Ash isn't down the hall and he's not next to me. On top of that I'm just stunned that today even took place.

The last thing I expected to have happen today was all that did happen.

Ash came out of recovery a little before 9:00. She was confused, upset , and signing for us to take her home NOW. She was hurting. But before I came home she was asleep.

The surgeon shared with us that the bacteria had eaten completely through the bone in one area and two more areas had holes the diameter of the end of his pinky. Really insane! It's so shocking. We are all stunned. The physicians included. Ashley Kate was laughing and playing in pre op. No indications of the massive infection that is raging inside her.

We expect her to stay In the hospital at least until Thursday. We really want to id the bug so it can be treated and attacked aggressively.

I have so many thoughts and emotions swirling through my head but for now I'm just trying to process it on my own. Our pediatrician feared the infection had gone into her brain. As he stopped by late tonight he shared that he had kept that from us today in his office. The surgeon said we were only days away from having what could have easily been multiple brain surgeries trying to battle this infection. We are stunned to say the least.

Our hope is for healing. For resolution of the infection. For proper id of the bug so that it can be killed with the right antibiotic.

Thank you for praying for our miracle girl today. It looks as though the hand of our God kept her covered and protected once again.

Surgery update

Ash is in surgery now. She has a massive infection in the bone behind her right ear. It has eaten into the bone and they are cutting behind the ear, drilling into the bone, and placing a drain tube leaving the incision open.

There are obvious risks but we had no other options. We are hoping they can stop the infection from spreading into the brain. The physicians shared with us that they have only seen an infection like this two times in the last fifteen years.

Currently there is a small sliver of bone left protecting the brain. The ct showed that it had not yet spread to her brain. We had approximately 48 hours to treat this.

It's been so quick and so confusing. Ashley looks amazing. Has no symptoms of illness or infection. To be told we are so close to disaster was almost unbelievable. It's just so crazy!

I'm so grateful I noticed the changes in her appearance as I combed her hair yesterday. I'm so grateful for the wisdom God has given my husband to know when to react quickly. I'm so grateful for our local physician and his wisdom. I'm so grateful for the long standing relationship my husband has with the imaging center. We did not have three days to waste while waiting for insurance approval on her ct scan. I'm so grateful that everyone has acted so quickly on ashleys behalf today.

We are in Longview. Surgeons and anesthesiologists who have never met our daughter are working on her at this moment. She is intubated. They plan on sending a piece of the bone to culture and try and identify what has invaded her tiny body.

Thank you for your prayers. Welcome to the world of severely immunosuppressed patients. It's the world we live in.

Prayers Needed

Good news... its not a tumor which is what our biggest fear was.

Bad news...she is on her way to the hospital and is expected to be in surgery tonight.

Pray for Ash, pray for me, pray for this new doctor who has never met my daughter, knows nothing about her, and is about to cut into her skull, behind her ear, and remove as much of the trouble as he can.

I'll explain more later as I can. Just pray for her at this time if you can.

Sinking Feeling

Its not often that Dave looks concerned. He is definitely the more positive of the pair and always seems to see our life as the glass half full rather than empty. He does an amazing job of maintaining this attitude and outlook where Ashley Kate is concerned.

There is a small issue concerning Ashley's right ear that I have been keeping an eye on for the better part of last week(you may remember that it bled for quite sometime following the placement of this line). Something I wasn't that worried about, but have been watching it closely. Today as I inspected it I noticed a pretty big change in its appearance. Today a very large, swollen and discolored, hard knot has developed behind this ear. The ear is very, very sore and is actually discharging an alarming amount of fluids. I called Dave in to look at it. I trust Dave. Trust him more than anyone I know and I greatly value his opinion. Especially when it comes to the kids and their health. The look on his face and the tone of his voice told me something more than what I had been suspecting may in fact be going on. "There is something not right." He looked me in the eye and said to call first thing in the morning, he wanted her to be seen as soon as possible, and thinks we may in fact need to schedule an MRI.

My heart sank. I don't want to disclose too much about what I'm fearing at this time in case its absolutely nothing other than the "norm". I'm talking about the real "norm" not an Ashley Kate kind of "norm". It is in fact exactly what I am hoping to be told. Its just that somewhere deep inside me when I saw what I saw this evening, and then when I heard his voice and saw the look on his face, my heart sank.

I'll be totally honest and throw this out there. I don't know if I can actually take much more. I just don't think I can. I am spent. Emotionally I battle each and every day to stay on top of our situation and I fight to not allow it to cause me to sink into a place that I won't make it back from.

I'll be calling in the morning in an attempt to have Ash seen as early as possible. My hope is that we are informed that there is absolutely nothing to worry about. That is what I want to hear. I'm not willing to be told anything else could be wrong with our Ashley. I'm just not going to be able to take another blow. Your prayers for this situation tonight and tomorrow would be greatly appreciated.

As far as how Ash is feeling about the whole thing? As long as I don't attempt to look too close, touch, or clean up the area then she is as happy as she's ever been. She knows something is wrong, and I catch her reacting to it every now and then, but for the most part if I leave her alone she is fine.

Beep, Beep, Beep

Look what I stumbled upon late last night as I tip toed in to check on Ashley Kate. Can you see what she is doing?

She took the stethoscope off of her IV pole and was lying there listening to the beat of her "dinosaurs" heart.

Much to her delight I bent down and kissed that dino on its nose and asked her if she would like to hear mommy's heart beat. As she placed it on my chest I made a "beep, beep, beep" sound which thrilled her soul.




We played for a few more minutes before I grabbed my camera and snapped this picture. Her beauty is captivating. Her smile, those eyes, that tiny nose and rosy cheeks melt this momma's heart. I love her so very much and my hope and my prayer is that she will be with us for a very long time.

There are days

There are days when the weight we carry is so, so heavy. There are days when the happiness we are surrounded with is clouded with the pain we know lies ahead. There are days when I honestly fall apart not knowing how we will ever begin all over again with our girl. There are days when it just hurts so very much.

Last night I lay my head on Dave's chest and wondered aloud, "how are we going to do this? how will we ever take her back?" Ashley Kate had an especially good day. She was so giggly and so happy it was contagious. You couldn't help but laugh as she belly laughed at the silliest things all day and all evening long. As I was readying her for bed she lay there watching me work on the pumps and tubing. If it became silent for a moment she would burst out laughing. Her laughter would cause me to laugh and before you knew it we were both laughing so hard at absolutely nothing. I would get quiet. She would get quiet. Then....the laughter from her tiny self would begin again. She laughed so hard you could see the empty space from the loss of her teeth which would cause me to laugh as I informed her that if she kept it up I would be investigating where to order a flipper. She had know idea what I was talking about, but we laughed and laughed together. The room became quiet again and my eyes filled with tears as I stared at my beautiful girl. She is so beautiful.

I look at my Ashley as she plays all day and I am tormented with the knowledge that I hold. Oh, Ash...what are we going to do?

Ashley is so innocent. She is so unaware that her body is not whole. She is oblivious to the pain and the struggle that she is facing. As her mommy I want so desperately to protect her and yet it is out of my hands. How will we ever live with the decisions we are making for her? If we continue waiting, and lose this window of opportunity, will we forgive ourselves? I wish I knew how long this window would be open. If we take her back, allow her to be laid down on that surgical table, and lose her in the end, will we ever live again?

Life today is so wonderful. Its precious. My sweet girl is so silly, so happy, so full of energy. She looks and feels so great. Its deceiving. It really is. Every once in a while even though we have thoroughly explained the place in which Ash is to the older kids one of them will say to us, "What do you mean she still has to go back? Why would we do that? She is doing so well?" Every time this happens it feels like I've been punched in the stomach. This so hard. So hard. We are living on borrowed time. Although the time is amazing, and all appears to be right, its not. Time will run out. It will. Dave and I know this. How much time do we have? Weeks? Months? A year? I don't know. I really don't know. Will she survive another transplant? Do I risk the quality of her life and gamble for the results we hope for? Can she keep going and going and going on this last central line? I am so conflicted.

My hope is that in some way God will direct this path for us. Its easy to say, but not always so easy to know what direction He is leading. At this time, we know we will transplant her if we are told that she is a candidate for listing, we just don't know when we will list her for transplant. We have no clear answers. We feel no clear direction. So we wait. Still we wait for answers, for a plan, for a prompting from the Holy Spirit. In the in between time we are living. Watching our 5 year old baby play and play and play her days away. So sweet. This time we are living in. I allow the worries of our world to fade away as I stare at the image before me. As I listen to the laughter in the air. As I kiss those cheeks. As I brush her hair. As I hold that sweet, sweet girl close to me.

There are days when it hurts so deeply I feel the cut of the pain that has pierced through my heart. There are days when the burden is so great I feel crushed underneath it. There are days when I wonder what we will do when the time comes to board that plane. There are days when it all becomes to much for my heart to bare and all I can do is cry. There are days when I think I would trade places with anyone, absolutely anyone to not feel the depth of these decisions that are trying to crush us. Then I realize I wouldn't trade a moment of this life I am living. I wouldn't. Trading it would mean that I missed it and at this time I'm not willing to miss a moment of this life I spend with Dave, with Blake, with Allie B., with our precious Ashley Kate. I am where I was created to be. I know that. I just wish we could be spared the struggle that is taking place in our lives all over again.

We have no other option than for our Ashley to survive another transplant. Anything other than her coming out on the other side is not acceptable. She has to make it. She has to live. She just has to. We can't imagine any other outcome.

Transfer

It seems to be the new word in our house lately.

Ashley Kate is 5 and 1/2 years old. She is 43" tall and now weighs, thanks to her new life on TPN, 40lbs. When combining that 40lbs. with those loooong legs it makes lifting her, carrying her, and moving her several times a day very, very difficult. Its getting harder and harder the older she gets. So our new normal is transfer.

First thing each morning after playing with her dino in the bed as I ready her clothes and supplies she points to the corner of the room where her chair sits. When she's ready, she lets me know by signing for her chair. I sit her on the edge of her bed, dress her, pull back her remaining hair, and then say " are you ready? We are going to transfer." I move her long legs over to that chair and then away we go to the play room.

I'm thankful for the chairs that she has. Very thankful, but at the same time I so desperately wish that she could stand, take steps, and walk toward that playroom. Every morning I am reminded of her loss and I want so much to give to her the independence that other 5 year olds have. I just know that someday, some how she is going to be able to walk. I don't care if she uses her walker for assistance. I just want her to be able to walk. To assist. To move herself.
Last summer, before her ex-plant she was able to help us stand her up, push with her legs or hand on to our hands and take steps to the play room. I can't tell you how much easier it was to get her from point a to point b with that little bit of assistance. It made all the difference in the world. It really did. She was only 33lbs at that time.

The extra 7lbs she now has on her body since beginning full TPN in July is making it harder and harder to move her. The extra ___ lbs I have on my body over the last 5 years of her life is making it harder and harder on me to move her. I'm trying to lose some weight and become stronger because I have to be able to take care of Ash. I do it 99%of the time by myself and its getting harder and harder to do the older she gets.

So we continue to adjust to our new normal. In ways that so many people never even think about. The ex-plant and illness that Ash endured this past year has taken more than her bowel from her. It has taken so much more. I hope she can regain some of her accomplishments before we go back to transplant. I hope that some day she will be up and moving on her own two feet again. I really do.

Empty

This morning, Feb. 1st, 2011, I took down our 2010 Holiday decorations that I put up last October.

Let that sink in. I'm trying to. Its difficult. I know. Its probably more difficult for you to understand why I would find it difficult to put it away, but thats ok, as long as we all realize its difficult no matter what side of the difficulty you land on.

Dave came in for lunch. "Whhyyyyyy?" is what he said, and that is exactly the way he said it.

Blake walked in the house after having lunch with friends, made it half way across the family room and stopped in his tracks. "WHAT did you do? NOOOO. Why? I thought we all agreed to leave it up for the year?"

I picked up Allie from school and as we walked through the garage she wanted to know why it was messy. "We just cleaned this up. What happened?" Then a moment later she said, "You took it all down! Why?" In the most accusing voice you have ever heard.

As we packed away Ashley Kate's tree in the play room she sat in the middle of the room waving "bye-bye" to each and every ornament, ribbon, light, and bow on the tree.

So, this afternoon I sit in a family room that feels a little less "family" like without the trees, the lights, the garlands, the pines, the candles, the everything that gives us our favorite holiday family feelings. Blake said, "Just turn on the music, go to your happy place and put it all back. I'm serious mom. Just put it back." Honestly, I was tempted.

Our house is so empty. It really does look bare. Open. Airy. Odd.

Why has this been so difficult for us? What is our problem? What is wrong with this family? I can answer it for you. If you want the honest truth. I can.

Fear.

Fear of us having celebrated her last. Fear of next Christmas arriving and Ashley Kate not being home to enjoy it with us. Fear of what the next 10 months of in between is going to hold for our 5 year old. Fear that it will never be the same. Fear.

I'm not sure if anyone really understands or not. Its really ok if you don't. Its just that we so desperately want to hang on to our Ashley and keep our family a family of 5 that packing it all away for the next 10months frightens each and every one of us. We don't know if she will be with us when its time to pull it all out again. We didn't know if she was going to be with us for this past Christmas.

We don't talk about transplant every day anymore. We don't talk about it at all right now. We are living and choosing not to concentrate on matters that we have no control over. We have decided to take it a day at a time and for today our 5 year old is here. She is happy. She is stable. She is alive. I don't know that this is the right choice for everyone. I don't know that this is going to be the right choice for us for very long. I just know that its the right choice for this family today.

How do I know its right for us today? I know each time I watch a big brother lie on the floor next to a baby sister and laugh so hard neither of them can breathe. I know each time I witness the tender goodnight kiss of a big sister given to a little sister and the precious words that accompany it each and every night. I know each evening when a daddy marches into his home and makes his way to whatever room the light of his life is playing in. I know. I just do. For today its the right decision. As her laughter floats through the air at this very minute I know that we are doing what is right for today.

The day we decide to ask the team to list her is going to be a very hard day. The day the phone rings and we agree to accept waiting organs is going to be a harder day. The days we spend watching her fight to come back are going to be the hardest ones yet.

I keep looking around the room and reminding myself that I can bring it all back out in just 8 more months. Then I allow myself to wonder, what if she remained stable for those 8 months and we were still here, in Texas, in our home, in our happiest place? Wow, what a miracle that would be. Wow. I wonder. I really do.