How is She?

In one word...Beautiful.

Ashley Kate is doing ok. Considering that her body is broken, I think she's doing pretty well. Running some low grade temps in the afternoons and requiring some extra sleep. She can't seem to wake up before noon each day for some reason. Her liver numbers are high, but I think that may be becoming our norm. The liver tends to get tired when its functioning without a bowel. A "traffic jam" is the way things have always been explained to us. Not a whole lot we can do about it until she is re-transplanted.

I included this next picture to show you her drain bag. I usually work hard to keep this hidden in most photographs, but I wanted to ask the other parents out there if this was what life post ex-plant is like for everyone or if its just us. You can see the bag full of bile that drains out of Ashley's stomach through her g-tube. I leave it open to drainage 24 hours a day. The contents can be anywhere from this dark color of bile to a neon "anti freeze" color. We empty about three of these bags in a 24 hour period(some days more). Approximately 1500ccs of bile a day is what she loses into the bag. We infuse 1700ccs of TPN a day into her. So with all the loses of bilous fluids we have to run IV fluids at night to keep her from becoming dehydrated. Still with this draining, she vomits the exact same contents all day long. Her teeth have been damaged beyond any repair from the constant vomiting. I can't imagine what her esophagus looks like. She puts out basically nothing into her osotomy bag. Maybe once every two or three weeks she might have a flow of output from the the 3 inches of remaining bowel, but not often. It seems to us that her stomach basically has no ability to empty into that tiny piece of bowel. I assume it is blocked.

Ashley is happy. Joyful. So smiley and sweet. We love her sooooo much and are enjoying our days here at home with her. She has an appointment Wednesday with her Shreveport team to get the all clear for travel before we leave on our trip. This is a huge undertaking for us to get her there and details are still being worked out. I'm feeling a little stressed out by the situation since we've been working on it for weeks and weeks and still exactly one week before we leave its not all finalized. UGH! If for some reason our medical supplies and meds can't get out of the country then neither can we:( I'm trying not to worry about it because its worth every single phone call to give her this opportunity and to show our big kids that overcoming adversity in life is what you do.

So this is a busy week for us as we prepare to pack it up and experience a little family time away from the daily grind. So excited about what adventures lie ahead for us.

Believe it or not once we return from our trip we will begin finalizing plans for Ashley's 6th birthday! Living one day at a time and at the end of the day looking back on it with a grateful heart that our tiny girl was given another. So...to our friends and family I'll say to you...Save the Date...Saturday, August 6th at 6pm. We are planning to pull off the carnival party we designed for her last summer that she missed. I know it may seem like its a ways off, but trust me the days slip away faster than I can keep up with. Its just a little over 2 months away!

One of those days

Ash isn't up to much of anything today. She didn't want to get out of her bed until after 12 today. I got her up and dressed and she sat on Dave's lap until he went back in to the office. Now she is lying in the recliner not making a peep. Just kind of lethargic I guess. She's watched Oceans, a few minutes of Tinkerbell, and is now staring at Mickey Mouse Clubhouse with a very confused look on her face(she's never been interested in it before so I think she might not be feeling that well).

I looked over her labs from yesterday and noticed her liver function numbers are all elevated. Just not looking right. I don't know how I missed that yesterday, but i wonder if its all related. I haven't heard a word from Transplant(in almost a month now). I'd be surprised if they called concerned. They don't really have much to do with us at this point since Ash is not active on the waiting list. I've heard nothing about their decision. Still have no idea if they will or will not agree to re-transplant and to be honest I think I don't really want to know. If I did I would have called them by now. I'm not ready for concrete answers. I think all of this has something to do with the struggle I've had over the last couple of weeks. They now have every piece of information to make a decision regarding her future and yet we have not been told what it is.

I don't think Ash is sick, she's just not as animated as she normally is. She's laughing a little, smiling some, but not really in the mood to be too active. Just different than most days. She hasn't asked to play in the water yet today so thats a big indicator to me that maybe she just needs to rest a little bit.

There are so many things I need to be doing for our trip, but instead I'm hanging out in the family room with Ash and doing not much more than laundry. I guess its just one of those days. A day to slow down, catch up on some rest, and take it easy with the gherkin.

Committed

Two weeks from today we will be doing something we haven't done since the birth of Ashley Kate. Two weeks from today we are going on vacation. Get on a plane, leave town, travel thousands of miles, enjoy some days away, make memories with our kids, and relax. At least we are going to attempt to relax.

I can't believe we are going through with this. It was kind of just a passing thought, a dream of sorts, and then we went for it. We jumped. Committed to living a full life with Ashley Kate in spite of the difficulties and all the hoops that have to be jumped through. By the end of this next two weeks I may have to be committed somewhere:)

There are a thousand reasons we could come up with why we shouldn't go. There is only one we can come up with as to why we should go.

LIVE.

Thats the one reason that trumps all those reasons why we shouldn't.

I took this journey almost 6 years ago to do a couple of things. Serve God and bless our family. Those are my goals in life. Do what He calls me to do and be a blessing in the lives of Dave, Blake, Allison, and now our sweet Ashley. Outside of those two things the rest of my world gets blurry and becomes a little distant.

We have been on a long and winding journey that has taken us to extreme heights and to extreme lows. We have gotten up each and every morning of this journey committed to live life fully and intentionally and whole. Ashley has come through some incredibly scary moments and manages to live life with no thought or concern about those things she has lost. She wakes up happy and smiling and full of joy ready to experience life to full extent of her ability. Its because of her way of life that we take this little journey.

So as the school year winds to a close this week, I am busy, busy, busy still trying to make arrangements for all the "extras" that accompany our Ashley as we take this little trip. I'm nervous about making it work on a four hour flight. Not sure how to keep our fellow passengers happy with us as the bile starts coming up and the alarms start beeping and the everyday moments of life with Ash become public, but its going to be an adventure none the less and one that I'm willing to take to give her the opportunity to experience her life fully.

I'm committed. I'm crazy. I'm super excited!

Snapped

Just a few of my favorite moments of Ash snapped on my camera this weekend. I try and take a photo of her everyday. I don't want to forget a moment of her life.

There's just something about this little girl of ours that evokes such emotion in my heart. I love her so very much. She is so, so sweet.

After a very emotional week, a struggle between my head and my heart, fighting the urge to look to tomorrow but realizing if I did I would miss out on her todays, and lots of tears, the weekend had an intentional slowed pace to it and I loved every moment of it. Ashley Kate is a very loved little girl, and the best part about our life is that she loves us back. With every part of her almost 6 year old heart. I love that about her. I love being loved by her. I love her.

Hang On

"On the hardest day of your life go to the deepest thing you know about God...and Hang on"

I've struggled for a little over a week now. Battling things inside of my head, my heart. Knowing that real life underneath the life we are intentionally choosing to live as good for today is really not that good. Ashley's unsure future looms heavily as a cloud above me, and I can make it for days on end with little thought of transplant, suffering, and survival. But...at the end of my days its there. I know it didn't disappear as clouds do. It did not dissipate above me. When I open my eyes the next day I am forced to cover my head, my heart, my home with an umbrella of sorts to keep on living the good parts of our life. Because, my friends, make no mistake that the good parts, the good days, the absolute blessing showered on us with every breath she takes has not gone unnoticed.

This morning I listened to a testimony of a mother and father who lost a child a while back. I listened to their story for 45 minutes straight and I came away with this one statement he made. It put into words what I attempt to live on this journey of Ashely Kate's. I'm going to have it put on something to take with us when we journey back to transplant in hopes that it will remind me of what I know to be true, because I will share with you that in those long days of battle in the PICU its easy to lose sight of what you know you is truth.

"On the hardest day of your life go to the deepest thing you KNOW about God and hang on."

Instantly what came to my mind is this, God IS good. That is my deep thing. Its the only thing that keeps me going in those moments when I so desperately cry out for understanding. He is good. He is good. He is still good. I hang on with all that I am to that truth. Even in the midst of great pain and confusion I have always know that He is good.

I've lived some hard days. Watching Ashley teeter between this life and Heaven and not knowing which one she will open her eyes in are hard days. Still, I know that harder days are coming. I hurt with that knowledge. I hurt a lot because of it.

Night before last as my sweet girl hugged my neck so tight and giggled with delight as I "got"her, I said to myself or perhaps to God "If only we still had six." I want to still have six. Six is an important number. 6 is the number of central venous sites that each of us are born with. We don't have six anymore. We only have one and its been the home to this current catheter for several months now. It won't last forever and that makes me cry. I laid down next to Dave last night and said, "If we had still had 6 then I think we could have at least 6 more years. Can you picture our Ashley turning 12 years old?"

Oh, how I want 6 more years! I know that more hard days are in our future. I know that one of the hardest days will be the day they carry her down the hall to open her up once again. Much harder than any we have yet to experience. The first time I had no idea. This time I do. On that day I'll be hanging on to what I KNOW about my God. I know this...He is good.

I'm hanging on to that.

Starting Over

Ash is starting to learn to stand again. As soon as she does then we will start learning how to take steps all over again. Her tiny right foot still show signs of injury from the admission last summer. She can't seem to put any weight on her heel. She never places it flat on the ground, but she is getting braver and stronger each day. We are so proud of her ability to overcome again and again. So proud of this little girl. Tonight she stood leaned up at the couch for almost 10 minutes.

Baby steps. At just two months shy of 6 years old our girl is taking baby steps toward what comes so naturally, so easily, so effortlessly to all of us. My heart still aches at all she is unable to do, but it rejoices in all that she is able to do. Still such a tough place to live. Accepting her disabilities without allowing them to define her. In my heart of hearts, although I rarely talk about it anymore, I want my little girl to walk, to talk, to eat, to live like every other almost 6 year old little girl does. I never in my worst of dreams would have imagined that she could not.


Ugh! My heart hurts this week. Having a tough one.

How do I fight off the hurt, the anger, the frustration, the pain, the disappointment and learn to dwell in the good parts of her life? Every single day I fight that fight. Forcing myself to push away the pain, and focus on the blessing. While I watch her struggle and listen to her scream as we force her right foot flat on the ground all of those feeling well up inside of this mommy's heart. Such a pointless, careless, injury that she is still suffering from all these months later.

But...she is here. She is happy. She is living. She is not concerned for one moment that she is unable to walk, or talk, or eat, or run, or go to kindergarten. She is completely content and absolutely filled with joy. I'm striving to live a life like that. It just stings to see her struggle.

So instead of focusing on all of this I'm going to stare at this



This is the face of little girl who is teaching me to live a life like no other. I love her so very much!

Disappeared

The previous post was not deleted it just disappeared. Blogger sent out a message informing its users that the were experiencing some glitches but they would try and get back yesterdays posts. Not sure if it will ever reappear or not. I'm hopeful that it does. It was written as always, as a reminder, and insurance policy or sorts, of a precious time spent with our Ashley. For those of you who missed it and are frustrated by it I'm sorry. It should be coming back soon. If not I hope I never forget how it felt to sit in that threshold with my 5 year old and live those moments with her.

Through Ashley's Eyes

At the threshold of the storm

The world is a beautiful place through the eyes of our Ashley. She notices things, sees things, feels things, experiences things that I used to miss. I've learned how precious life is by viewing it through Ashley's eyes. I've been made of aware of the beauty that surrounds me through Ashley's eyes.

Last night a storm arrived outside our front door. Ashley had been sitting and playing quietly in the foyer. I noticed her "talking" about something, and when I turned around to acknowledge her I saw that she had moved over to the front door and was now lying down on the floor with her ear up next to the door. She was oohing and aahing and signing "rain, rain, rain". I opened the front door and her eyes lit up with excitement. She spent the first few moments excitedly "talking" about. Her excitement was so genuine and the joy on her face caused me to sit down on the threshold next to her and just enjoy the storm along with her. I wish I could put into words the moments we spent together sitting on the floor, but I can't seem to find words to describe those moments in my life. The storm was loud but no longer frightening. It was raining hard, but the harder and faster it came down the more beauty she seemed to find in it. The sky lit up with lightening and with each flash of light she would giggle with delight. I sat on the floor next to my daughter and I allowed myself to see the beauty that she saw and feel the storm as she was feeling it.

Inching closer to the storm. Now across the threshold and attempting to feel the rain.

After a few moments I stood up to grab my camera to capture this memory on film When I turned back around Ashley had moved out of the threshold and onto the front walk. I giggled as my girl reached out to touch the storm. Her little hands were stretched out in front of her to capture as many of the rain drops as she could.

Allowing the rain to fall on her. Experiencing the storm and all its wonder.

After a few moments she threw her had back, eyes up toward the sky, and opened her mouth to taste the storm. Such beauty I saw in that moment. She had a genuine appreciation for what was taking place all around her. The more she felt the rain, touched the rain, tasted the rain all around her the happier she became. I didn't dare move her back into the foyer. I allowed her to see the storm up close and personal because never in my 37 years have I ever met another who can find as much joy in such experiences as my Ashley. My heart swelled with thanksgiving for this little girl in my life and my eyes stung with tears. If only I could learn to live as my Ashley lives. Finding joy and appreciation in such things as the rain. Oh, I'm still learning from this child. Still growing.

As Dave pulled into the driveway with the older kids they all came running up as fast as they could to get out of the rain and it caused us to giggle when we realized how differently they were viewing the storm than Ashley was. They were trying to get out of it and trying to stay as dry as possible. Ashley was trying to get into it and trying to get as wet as she possibly could. So different! Its the world through Ashley's eyes that I want to experience. I want to enjoy the feel of the cold rain on my skin rather than hiding under my jacket trying not to allow one drop to fall on me.

We all spent the next little bit watching our sweet Ashley and enjoying her happiness. As Blake looked on at his little sister he said to me, "It looks like she's saying, Praise God for the rain, Thank you for this storm." Yes, with her arms outstretched toward the sky I just wonder if my little one was giving praise to her Creator. I'm sure He was finding joy as He watched one of His creation enjoying another aspect of what He had created.

The world through Ashley's eyes is amazing. It is exhilarating. It is precious. It is so simple, so basic, so sweet.

I know each of us will cherish the memory of watching Ashley Kate last night. As she enjoyed "her" storm each of us in our own way experienced it with her. Allie even grabbed her own camera to capture a video of her baby sister "catching" the rain in her tiny hands. It was one of the sweetest things I have witnessed in a long while.

Blake walked through the room on his way to bed last night and said to me, "I really love that little girl. I just do."

"Yes, Blake, I know you do. We all do." Thats all I could get out of my mouth as I choked back my tears. How will we ever take her back? How will we ever find the courage to do what had to be done? How will we ever survive if He chooses to take her out of our home and into His?

This morning as I walked Ashley past the front door and into her playroom her eyes looked at me and her little hands signed, "rain?".




Not today Ash, but I'll never forget what we were given last night. A glimpse of the world through your precious eyes. May I always remember the way you saw it.

Mothering 101

I dare say...yes...I'm going to say it...

You haven't REALLY parented until you have attempted to clean up bright, green bile (spewing from your 5 year olds mouth at an alarming rate) out of the toy bins in your playroom. Seriously, this is mothering at its best. Slimey, green covered, foam ABC's, plastic farm animals, mega blocks, and all forms of various plastic, rubber, and wooden sea life. Oh yeah, lets not forget the xylophone and remaining musical instruments such as maracca's and tamborines.

And... I dare say you have not mastered the art of play until you have learned to not miss a beat in your play as you search for the plastic sheep dog in said bins above all the while your stomach content is projectile style covering all toys in those bins and your mother is trying to catch it in a hand towel to the sounds of Akuna Matatta from the Lion King playing in the background.

Seriously...this is mothering at its best.

By the way, she just emerged from the play room to show me she found it. Plastic sheep dog is now in hand and she is happy.

I'm off to the laundry room for the 100th time today and its only 3pm. Some days I truly wish this girl had a bowel and a correctly functioning anatomy!

Happy parenting to you today:)

Big Girl

We've all noticed the past few days just how big our little gherkin has become. She is growing up before our eyes. Her appearance, her actions, her signs, her behaviors...all so very grown up. I'm amazed at how good life can be even when its really not all that good. Make any sense at all? Probably not, but in my world it makes perfect sense. Life is good today although I know her tomorrows aren't going to be and I'm grateful for today. For all the smiles, the giggles, the hugs, the kisses, the play, and the cuddles. It was a precious day at our house.

After months and months of delay and absolute denial I have finally placed our developmental packet in an envelope and addressed it to our transplant team. Tomorrow, God willing, I will place it in the mailbox and then it will truly be out of our hands. I'm not ready for answers. Not ready for finality. Not ready for what they have to say. I've come to the conclusion that I will never be ready for any of this. We've been home with Ash for 9 months now. 9 months that I never knew we would be given. In the last 9 months I have cried a river of tears, shared a load of burden, prayed myself out of words, and finally I am at a place that I just am. I wake up every day and I live this life with our gherkin and I keep keeping on despite the uncertainty. I busy myself taking care of her, playing with her, and loving on her. Its a good life. A life I never want to change.

Ashley Kate is growing up to be a big girl. We are growing up together on this journey, and I love her so, so much. Every day a little more than I ever thought possible.

Mother's Day

It seems as though I remember Ashley's life, her journey, her struggles, and triumphs in dates. I associate each part of her story according to what the calendar said at that time. I'm not sure why my mind works this way, but it does. So today...Mother's day 2011...reminded me of Mother's day 2o10...because it was the week following that my Ashley's latest chapter began to be written. A cloud of memories, sadness, and hurts seemed to hang over my head for the day. So ugly. I wanted to shake it, and managed to for hours at a time only to have it reappear to haunt me when I wasn't concentrating on allowing it not too.

Up until the Wednesday after Mothers day 2o1o we had been living Ashley's best life to that date. Almost an entire year hospital admission, illness, and struggle free. It was a fairy tale of sorts for us. We had known such uncertainty with mere months of normal in between. Dave and I were relaxed. We began to breathe. We made plans. We felt confident. How were we to know that a stomach virus, would come upon her. A hospital visit would be in order. She would recover for one short week only to have it re occur with the same vengeance. Ultimately it would lead us to the place we are in know. A stomach bug? Seriously? Out of no where? Lead to explant? Uncertainty? Near death? Re-listing? Living all the while knowing time was not on our side, on her side? Wow. Its been a struggle today. Really, I have struggled.

Still...I was surrounded with the most amazing children I've ever known. Go figure...they are mine! How blessed I am! I listened to Ashley Kate giggle uncontrollably. I watched Blake smile so wide at his baby sister as he announced, "Do you have any idea how much I love this little girl?" I stared in silence as I couldn't take my eyes off of Allie B. and her natural beauty as she walked through the room. I had a feeling of joy deep in my heart because I am their mom, and yet it was in a battle with the memory of this date from a year ago. Ugh!

Honestly I feel as though I am constantly at war with the calendar and its dates. The days, the numbers on the page, the memory each one holds.

Its 2 something a.m. the day after Mother's day 2011 and my heart is full. I have 3 children asleep in their beds unaware that their mom peeks into their rooms each night, each time I wake to care for the youngest, and whispers a prayer over the threshold. I tip toe close enough to touch their beds, breathe in the their sweet smell, and thank the Father for making me not just a mom, but making me their mom.

I imagine I'll continue to battle the dates and the pages of the calendar for the rest of this journey. I don't see it coming to an end anytime soon. My prayer is that I'll be able to overcome the memories of struggle and replace them with the preciousness of the moments we are currently living.

In the end I think I can say that I enjoyed today. Despite the date and the remembering of what this week last year started. I really did see the beauty surrounding me in the faces of our three children. Joy in their eyes. Smiles on their faces. Conversation spilling off the tips of their tongues. It was a blessed day. We didn't "do" anything other than what we do every other day. We lived. We played. We visited. We were still. We spent it together. I can't imagine doing anything more enjoyable than that.

Love this Little Girl

I love her so, so much. The joy on her face, twinkle in her eye, contagious smile, and sound of her giggles. It all wells up inside of me and I feel such love for her. She is amazing. So beautiful and so fun and so sweet!



Her new game is playing beach ball. She learned to catch it a couple of weeks ago and then learned to pass it like a volleyball. She LOVES to play. She WANTS to play is ALL DAY LONG. Thats not a realistic way to live, but its what is taking place in our house at this time. No matter who comes into her rooms she signs "ball" and if you don't play with her then the water works start. Its so sad and so funny all at the same time. She can turn on the tears!


Her smile is so huge as she anticipates the return of the ball. Hands ready and giggles galore. She cracks us up. Such a funny girl. I wish I could sit and play ball all day long, but if I do then NOTHING else is getting done around here. She doesn't understand that if I sit and play then the laundry sits around too.


Ashley looks so good. She is happier than ever. We have seen some low grade fevers in the past couple of days. We have also had an increase in vomiting of bile(I didn't think that was even possible with as many incidents we were having, but it was). Every few minutes she is gagging and spewing a green, watery bile. The rug in the play room is so far gone. I have tried EVERYTHING I can think of to clean the spots, but its not working. If you have any new ideas for removing bile stains I'd be grateful. Yesterday I used to full cans of spot shot if that gives you any idea of how many times she is vomiting. Its out of control! The connection between her stomach and the 3 inch piece of bowel that was left is obviously blocked and not allowing the flow of any of it out into her ostomy. Her ostomy bags are empty. Completely dry. I'm draining about 1500ccs of bile out of her g-tube a day in addition to the losses in her vomiting. Its so crazy!

I received a call from transplant yesterday. First time we have spoken with them in a month. Not much has changed. We are sending them some requested paperwork this week. We still have no idea if they are willing to list and re-transplant Ashley Kate. No decisions have been made. Looking at the pictures above I think you might understand why we are having a very difficult time agreeing to give that up. Life for Ash is really happy right now and returning to a life filled with struggle and pain is not that appealing to us. For now we have decided along with our transplant team to take Ash on our trip at the beginning of next month and then to talk again once we return.

With our trip only being 4 weeks away I'm beginning to think we were temporarily insane thinking we could travel. We are so committed to living and allowing Ash to live that we know we have to take this opportunity with her and the other kids, but as I attempt to put into place all the safe guards and compile all the documentation for flying out of the country with 14 bags of tpn, 14 bags of IV fluid, 14 glass bottles of a German made drug that is not FDA approved(the writing on the bottles is in German), and 14 bags of vancomycin, 4 IV pumps, multiple sets of syringes, tubes, etc., and a 300lb wheel chair in addition to our luggage I think we might be crazy. Oh, well. Call us crazy. We are all looking forward to the time away.

Ash saw her Shreveport team Monday and they were amazed at how good she looked. Made me smile to hear them say, "She looks great". She does. No explanation for it, she's just learning to live despite the struggles. Finding joy in the simplest of things. Smiling through it all. Showing me each day how blessed we truly are. I love this little girl. So, so much!

The Best Gift

Its been such great weekend. Such a great day.

My sisters and my nieces came in to celebrate my birthday. We laughed, we played, we caught up, and we went to Canton. It doesn't get much better than that. Its become our bi-annual retreat. In the fall for their birthdays and in the spring for mine. We meet in Canton, stay two or three nights in our RV and have the best time imaginable. I love those girls and they are two of the best things in my life. I am sooooo blessed.

I was gifted with many wonderful things from them, from my mom, and from Dave. I really was. All kinds of gifts that made me smile all weekend long, but this afternoon I was given the best gift of all. The laughter that filled Ashley's playroom overwhelmed my heart. I sat on the floor with my youngest daughter and my two big sisters and I watched them play with and love on my Ashley. She laughed so hard and smiled so big I couldn't help but become captivated with the sight and sound of her happiness. In those moments I realized that none of the gifts given could even compare to the gift that God gave me almost 6 years ago. That little girl and the joy she exudes is by far the the best gift I ever been given. Oh, how I love her. Oh, how I love watching my family have the opportunity to love on her. It was such a precious moment in my life and a memory I will never forget. As we played with Ash she reached out to me, pulled me close and squeezed me tight. She gave me a hug in the best way she knows how and it melted me. Ashley doesn't hug me. She never does. She always hugs her daddy, but she's never really hugged me around the neck. She likes to cuddle with me and she likes to lie down on me, but those amazing hugs are reserved for her daddy. Its something I've always kind of envied, but I know she loves me anyway(maybe not as much as she loves daddy, but she loves me:)

Today Ash gave me a gift for my birthday. That little hug and the love she shared with me is something I will never forget. It was the best gift of the whole weekend and by far the best of the day. Perhaps the best of my whole life. I'm just so grateful to have her in my life.

So happy birthday to me. It was one of the best days I've had in a long time. Just me and my family at home doing nothing that special to most, but making memories that will remain special to me for a life time.

I really love my life and the people in it.