A, B, C's...or X, M, O, T?

Wow, this little girl takes my breath away. In the random, every day, snapshots, I catch myself staring at her face, her hair, her sweetness, and I realize how in love with our Ashley that I am. She was sitting on the couch watching a Ranger's game with Blake Sunday afternoon in this shot. Seriously, she was. I tell you the truth when I tell you she will watch ANYTHING with Blake. If he likes it, she likes it. Not a peep, not a complaint, not a sign for Wonder Pets, or her verbal request for Myth Busters was even uttered. She was sooooo content to be with him watching baseball. This girl!


Here, I'm just going to show you. Look at her face! It never moves off the screen until a commercial comes and then she looks to him to "fix it" for her and put the game back on. So funny!


Anyway, this post isn't about any of that. Its about Ashley and all she has learned the last couple of weeks. Every single day her knowledge seems to be EXPLODING! Dave and I really believe its all because of her Ipad. Seriously, it is. Her world has opened up and she has come so far since she received it. One of the coolest things that has happened lately is on her last appointment in Shreveport one of her physicians shared with us that after he watched Ashley navigate her Ipad at a previous appointment he went and wrote a proposal for a grant to supply Ipads for children like Ash. He was amazed at how much she communicated and "played" with hers and came up with the idea to make this happen for others. I was so blessed to hear this. So blessed. It truly has made a difference in her life.

So the title of this post was something about her A, B, C's. For as long as I can remember Ashley has been interested in the alphabet, numbers, and shapes. I was told long ago that she would not be able to learn these things. That she wouldn't be ready for this type of learning until she mastered the whole stacking blocks nemesis of ours. Well...I never believed them. Not for a second. I know Ashley Kate. I see her in a way that so many others never do. I see her 24 hours a day, 7 days a week. I parent her. I play with her. I do soooo much more than evaluate her for a few minutes and then right an incorrect report based on that evaluation. The "standard" mean NOTHING to us. Really they don't. Its a bunch of bull. Each child is an individual and each child with disabilities learns at different rates, in different ways, and you can't fit then into your educational "box".

I just want to brag a little. One of Ashley's favorite things to do is drive. She loves to ride in the car. Loves to watch the world speed past her window. For years she has pointed out the signs as we pass them by. She looks and searches for items, letters, shapes, etc. that she recognizes. I watch her in my mirrors and I say aloud each thing I see her point too. Its a learning game. As I load her into the car she begins to sign and "tell me" where she would like to go and what she would like to see. For example, "fish" and lobster" are two of her signs she shows me every single time we get into the car. It means, "I want you to drive by red lobster so I can see the lobster and the fish". For years I never even knew there was a fish on the outside of red lobster. I always saw the obvious "red lobster" on their sign, but must have always looked past the fish. Its there. Its on their building. I would say, "Thats not a fish baby, but your right there is a lobster". She insisted there was a fish and so one day while stopped at the red light I looked closer. To my amazement she has spotted a fish at the top of their building too. She shows me the world in a new way every single day. Ash pays attention to the little details in life. Never missing a thing.

This would have been Ashley Kate's kindergarten year. She's missed it all. Just now we feel as though she is at a place where her teachers could come back into our home, but its the end of the year and so its over. She missed it and we hate that for her, but lately Ash has been spot on when it comes to her alphabet. Last week she showed me an ABC app on her ipad that I didn't even know was there. She would pull up a letter like X, then point to it and I would say, "X", and then she would SIGN it. Ok, blow me away. I have never worked on signing the alphabet with Ash. Its difficult to make your fingers do some of the letters, and so I assumed it would be too hard right now for her to learn it. Prove your momma wrong sweet girl. Please do, and so she did. Then next letter she pulled up was an M. She tapped it, looked at me, and signed it too. Then an O and a T. Then an A and a B! Not only did she do this, but she proceeded to pull up a W and then signed Watermelon telling me that it started with a W. Again, she did the same thing with H and horse. I was stunned! These are things I HAVE NOT TAUGHT HER. SHE IS TEACHING HERSELF! It is amazing. So amazing. I could go on and on and on about what she has shown me just last week. I won't, but I could.

Ash is doing so well. She really is. She looks amazing. She is amazing. Even with staph colonized inside of her line she is flourishing. Every day she learns more, plays more, smiles more, and lives more. I'm so captivated by her. We all are. Blake and Allie light up when they are with her. Their smiles, their eyes, their countenance shines when they hang out with her. She is the biggest blessing in our lives. The absolute biggest! We all love her so very much.

I try so hard to concentrate on the today's we are being given and to ignore her tomorrows. I have to. If I allow myself to think about the journey ahead then it steals so much of the joy I am being given today. We aren't naive. We are aware. Truly we are. Its just a choice to try and stop being consumed with the worry and the knowledge of what lies ahead so that it can't steal from us what we have now. My fears are still there. The hurt is real. The tears fall. But...I'm getting better at living in the moments with my beautiful girl. She's just so beautiful! Everything about her is lovely. Her smile, her face, the smell of her hair, the twinkle in her eye, the soft touch of her skin, the sound of giggles. How do you lay all of that down and give it away not knowing if you will ever have it given back to you? I don't know how to do that. Not yet I don't. I pray God will give me the peace inside when the time comes to take those steps. He will have too. I can't do this on my own. We know TOO much. We've seen TOO much. We've lost TOO much. Yet, we will have to do this all over again. The agony of that is palpable. Its physical. We feel it when we allow those images and the knowledge of past experience to seep into our thoughts. I don't want to do this today. I don't want to allow my heart to hurt. So instead I'm going to leave you with one of my favorite pictures of our big girl from this week. I look into that face and I'm so overwhelmed with love for her. She is a gift. A gift we didn't deserve, but I'm so glad was given.

Our Easter Sunday...In Picture Form

Our Sweet Ashley Kate

Blake, Ashley Kate, Allison

Costume Change for Ash...Ahem...Things don't always go as planned

Our big kids

A more realistic pic of our big kids

Again...a more realistic likeness of these two:)

Easter Baskets

I LOVE these kids! LOVE, LOVE, LOVE them! It was a good day. A blessed day. I hope your day was blessed, filled with fun, and focused on His resurrection. How blessed are we to know we serve a risen Saviour!

Good Friday

Because

He

Lives

We

Can Face

Tomorrow.

And whatever it holds for our sweet Ashley.

May you have a blessed Easter Weekend and may you know the risen Savior and feel His infinite love for you. Sunday is coming!

I pray you have time to enjoy your family, time to focus on the simpler things in life(like playing in the sprinklers:), and time to seek His face. God bless you my friends.

Conversations with Ashley

Tonight I knelt beside Ashley Kate's bed and I placed a thousand kisses on her tiny forehead. I whispered in her ear how very much she was loved. Choking back tears I shared with my sweet girl that, "Daddy loves Ashley and Mommy loves Ashley and Blake loves Ashley and Allie loves Ashley and Jesus loves Ashley. Everybody loves Ashley" I whispered to my girl tonight as I have hundreds of times before. I was overcome by emotion as I remembered the night she was ex-planted. I laid my head on the pillow next to my sweet girl in pre -op as we waited for her daddy's plane to land and I whispered those same words to her. I don't know why I thought of those moments in her room tonight, but the emotion came on hard and overwhelmed me. How grateful I am. How humbled I am. How in awe I am to be having this moment with my girl in her very own room tonight. Through it all He loves us still. He blesses us daily. He's given us so much more than I ever dreamed we could have.

Ashley and I began to talk. " I love you sweet girl. Good night."

"Horse" she signed.

"We can watch Tangled tomorrow. I promise."

"Swimming, Water" she signed.

"Tomorrow. In the morning." I answered.

"Birds?" she signed.

"Not tonight. No more. We will play in the morning."

"Walk. Now. Walk" she signed.

"Ashley, Nanny will take you for another walk tomorrow. Its too dark tonight."

"Deer" she signed.

"Bambi is already on Ash. You are watching Bambi and when its over you have to go to sleep, ok?"

"Baseball?" she asked.

"Ok, let me find bubba's ball for you." I located it at the foot of her bed.

She smiled ear to ear. I tucked her underneath her blankets baseball in her hand.

"Water" she signed.

"In a minute. I'll be back with some in a minute."

I gave her a drink of water and she snuggled deeper underneath her quilts.

"Dinosaur, mommy?" she asked with her hands.

"Yes, Ashley, I'll get your dinosaur and then we are going to sleep."

I kissed her forehead again after tucking dinosaur in too and breathed in the smell of her shampoo. Her skin was so soft against my lips and her hair smelled so good. The tears slipped from my eyes onto her cheeks. "I love you sweet girl. I really, really do. Do you have any idea how much I love you?"

I got to the door and turned around for one final look at my baby and in the darkness I saw her raise her finger to her mouth and she signed,

"Mater?" to which I giggled out loud and said, "Tomorrow, Ash. We will watch Cars tomorrow."


The sweetest moments in my life I am living right now with my Ashley. Time is more precious to me then it has ever been before. To "talk" with her tonight is a gift. To read her signs and answer her questions is something I will never grow tired of doing. Ash is living and she is adapting and she is so 5. I love that she is 5 years old. Doing everything in her power to stay up a little longer. To keep me in the room with her a little longer. To get the lights turned back on for just a little while longer.

I'm grateful tonight. Grateful to be here in our home. To have Ash in her own bed. Blake in his in the room next to hers and Allie in hers down the hall. Tears flow freely from my eyes tonight and I'll can say is that I am overcome with a grateful heart for this night. I love my kids and I love having them all here together.

Thank you Lord for all that I have been blessed with. Tonight and always.

Fire in the Hole!

As any fun loving, Myth Busters enthusiast would, my beautiful, sweet, Ashley Kate loves to hear those four words, "Fire in the hole!"

Add to that a good "3...2...1..." and she is smiling ear to ear and laughing so loud its contagious.

I don't know what it is about this show(Allie B. and I happen to HATE it), but our baby girl LOVES to watch crazy, exploding, busting of myths. I am convinced she loves it only because Dave and Blake happen to enjoy it(as well as Rangers baseball, Pawn Stars, and motor cycle racing). If you know anything about our Ashley then you know that if those two guys like it then she does too.

Dave and I were discussing at lunch how odd it us that her only verbal speech at this time relates to her request to watch Myth Busters. It is the only "word" she says. Absolutely one of the funniest things she does.

Oh how I love this child!

Question Answer

Robin,

So sorry you feel as though I have neglected to answer your question. I assure it is not intentional. I thought it was clear that Ashley's hepatic line had been switched out. That is what our trip to Nebraska at the end of December was for. While there the surgeon removed Ashley's hepatic line (that was in her liver) and placed a central line up above her diaphragm. This will make transplant possible. She will require a new liver as well as small bowel when she is re-transplanted.

The new line above her diaphragm was infected upon placement with staph and that is what we have been battling since December 28th. You are welcome to go back and read all about the placement starting on that date. I hope this was helpful. Thank you for following along her journey. Have a blessed day.

The Simple Life

Last Friday we finished up Ashley Kate's IV antibiotic infusions. Can I just say, "YEAH!"

We have returned to what I like to call "the simple life". Its just TPN prep, basic line care, dressing changes, g tube issues, and ostomy care. That my friends truly is "the simple life" and I am grateful for it.

I find it amazing what two nights in a row of uninterrupted sleep can do for a person. We were hooking up 7 medication infusions round the clock as well as TPN and Omegaven. That makes you a little sleep deprived and leaves you feeling like a shell of yourself. Ash has been fever free since Thursday of last week and we have seen no growth on her last set of line cultures. We continue placing vacomycin/heparin locks in her lumens and its hit or miss as to whether or not we get those to draw back out. Its an emotional up and down with this line that leaves me praying and pleading each time I attempt it. No blood return all day yesterday and then it suddenly appeared late last night. Not sure what today holds in that area, but Dave probably summed it up with a statement to me yesterday, "We may be coming to the end of the life span of this line." That left us both silent. The pit in my stomach got a little deeper. The worry in my mind a little greater.

I have plans in my heart that I hope to accomplish. Plans for our family over the next several months. If we can make it there then I will resign myself to listing Ash for transplant. As much as it grieves my heart, I suppose I will. Still there is no peace or clear direction, but we know we have been placed in an impossible situation that forces us to make a decision.

Ashley Kate is happy. She is silly and fun loving and carefree. She is exactly what she should be at 5 and 1/2 years old. I love her this way. I love watching her eyes light up and seeing her smile and listening to her giggle. Its the love I have for all of these things that make me hesitant to "go" and hesitant to "stay". What are we giving up when we go? What are we giving up if we don't go? Its all too much for my heart to dwell on and so instead of dwelling I try to ignore it all and just live.

We spent our weekend working around the house. Giving the exterior a little "face lift" and enjoying our time spent together. Hard work isn't that hard when you do it together. It actually becomes enjoyable and memory making. I think the boys would have been ok without the wasp stings they endured, but still it was a memory in the making. I have to admit that as hard as I tried not to giggle it was difficult when remembering the hollering, the running, and the FLINGING of paint that occurred when the wasps would attack. Just watching those big, tough, guys react to the wasps was a little bit humorous. The stings of course were not.

We have baseball, soccer, volleyball clinics, and a doctors appointment with Ash's Shreveport team on the schedule this week. Not too much. Just enough to keep us going. Busy is good. It means things are normal in our world. Other than that I'll be sitting out back watching Ash play in the water and not doing too much of anything else.

No Return

Last night we lost blood return in both of Ashley's lumens. So disappointed. They are infusing and for that we are thankful, but our hearts are heavy and concerned as to why we continue to lose the return flow. We desperately need for her line to continue working. Its not an option at this point for us to lose this line.

We have not attempted to draw back on them yet today. We had a long night of restless sleep. I would wake to whisper prayers all through the night that somehow He would make a way for this to work.

I have no idea what the protocol is for use of TPA. I'm not sure how often it can be pushed into her line. We did a week ago this past Wednesday. Then again last Thursday. I don't know if we can use it again this soon.

Happiness Is...

Listening to Allie and her BFF sing Taylor Swift at the top of their lungs, never missing a word, with absolutely no reservations. Just loud and proud. Love them!

Watching Blake and his teammates give fist bumps after each run scored. Love that he is part of something bigger than himself:)

Lunch on the patio with my mom and Ashley Kate on a beautiful spring day.

The splish and splash of the water as Ashley Kate sits on the steps of the pool and kicks her feet in the warm water.

Freshly planted flower beds.

A little girls laughter seeping around the corners of our home from her playroom.

Chats with a close friend while I drive the road toward whatever baseball field Blake is playing at.

Holding hands with Dave.

24 hours fever free with no antibiotics:)

Baby birds chirping from the nest that their momma built in our garage. It has been amazing to watch her take care of those four precious lives each day.

Saturday afternoons at home, the smell of freshly cut grass, and steaks on the grill.

Palm trees and the joy they bring to our Ashley. We bought her one to enjoy right here at home this week so I don't have to sit in the parking lots of the local Whataburgers anymore:)

Shopping with Allie.

Hugging Dave in the front yard in front of God and everybody.

Home.

Being present in each moment I'm living. Absorbing the time. Burning the memories. Making the most of it.

In the midst of all the unknowns, the uncertainty, the hurt, the tears, the late nights, the prognosis', the doctors visits, the infections, etc., I'm still finding happiness. Its the littlest things in my life that bring me true joy.

Flow

Her lines are sluggish, but they are returning blood.

Last night was Thursday which allowed me to "tag" Dave, announce "no tag backs", and then retire to sleep for a full night! I'm thankful for Thursdays:)

I'm also thankful for good physicians, and good friends, who can make things happen when we need for them to happen. Having these people placed in our lives so many years ago was a God thing and only He could have known what a blessing they would become in the care of Ashley Kate.

Thanks so much for praying. We are hopeful they will continue to work.

Today

Today, Ash spent her morning and afternoon splashing and playing on the front walk. This evening she is sitting in the ER waiting to see if her line is going to draw back. Dave is with her and I stayed at the house. Not an easy thing for me to do. Him either. We aren't very good at role reversal. Although, this visit doesn't cause her any discomfort. I think that makes it a little easier. She was nervous, but is now laughing and playing with her daddy as the TPA sits inside her line. It worked last week and we are hopeful it will work once again. We are also hopeful it will last a little longer than just a week.

The clotting of the line could mean a few different things. It could simply have a small clot of blood blocking return flow out of the catheter. It could also have a fibron sheath formed at the end of the catheter making infusing possible because it pushes the sheath open, but drawing not possible because it draws the sheath closed at the end of the catheter. It could be that the line has slipped out of its intended place. Or it could be that its just getting old and not working like it was intended. On the screen last week in IR we watched dye flow through it and could see the placement was still where it needed to be. We also could did not see a fibron sheath on the end of the catheter. So...we aren't sure why it continues to act up. We just aren't sure. The only thing we are sure of is that this line is ESSENTIAL to Ash's life. Once its lost, then we too have lost. Lost opportunity to re transplant and lost her battle.

The smile on that face pictured above is something we just aren't willing to lose. Thank you for your prayers.

Needed

Ashley Kate's large lumen stopped returning blood flow yesterday afternoon. It did the same thing last Tuesday and so we had to go to interventional radiology last Wednesday in Shreveport. I'm discouraged to see it has once again stopped. Its really very important that it work correctly. Once is stops doing its job then red flags begin to appear. We NEED it to work. We NEED it to function. We DON'T have any other options.

I'm trying not to panic. I am thankful that it is still infusing. I am thankful that the smaller port is drawing and infusing. Its just a little frightening to watch it start to act up.

Not sure what we are going to do about it. We may try to get the ER to use TPA for us here in Longview, but the last attempt at that we were given a HUGE run around and sent to another hospital. I have another appointment in Shreveport next Wednesday, but waiting an entire week isn't the best option. Using TPA is a "no brainer". Its done all the time and has been used with Ashley more times than I can count. I just wish our little town didn't freak out every time we took our 5 year old in to have it done. Sometimes I wonder if she is the only pediatric patient in this town with a central line? Surely, she can't be.

I guess what I'm saying this morning is that we NEED it to work and we NEED your prayers that it will. I am unable to use a vanc or heparin lock in the line since I am unable to get it to return. Flushing into her blood stream isn't the design of either of those locks.

Thumbs Up

Today we made it 24 hours with NO GROWTH on Ashley's blood cultures. Woohoo!
I think that deserves a thumbs up!

If we make make it 72 hours then the scheduled stop date for our current IV antibiotics is Friday. That means we will have our first night of full rest in 31 days. Woohoo! I think that deserves a thumbs up as well!


Ashley's echo cardiogram showed no vegetation on her heart valves. Woohoo! I think that is another thumbs up.


We aren't naive enough to think that the infection is clear. It is more than likely just being held "at bay" from the high amounts of antibiotics we are running through the line, but its a start. We are hopeful that it won't surface again, but it very well may. She is running some low grade fevers in the afternoons and that is not what we had hoped for.

We have discussed running a continual drip of vanc into one of her lumens in order to keep her infection free and in theory it sounds good. Problem is that it comes with some big potential issues. It could possibly provide us more time with the lines life span, but it may very well just allow her staph to develop a resistance to vancomycin. In additions to the vanc we are running Rafamphin. We are using vanc locks in the lumens when we aren't infusing through them and we are also alternating the lumens with the different medications since we aren't sure exactly what areas the staph is stuck too.


I'm not sure what the future holds for us. For Ash. I just know that today I'm grateful for the smiles and the laughter and the time we had together. Just a day at a time. A day at a time. No looking ahead. Concentrating on today and not missing out on it. Its just too sweet to let it pass us by while worrying about things we can't change. I think that deserves a thumbs up, don't you?

Mutual

"I'm gonna miss this"

She loves him like she loves no other. There truly are NO words to describe how this little girl feels about her daddy. I can't write about the emotion that wells up inside of us when she reaches out to hug her dad. No words exist in our language. Only an Almighty, All knowing, Loving Father in Heaven could have orchestrated such a thing. Of that I have no doubt.

Give us more time. Father in Heaven, please grant us more days. We are pleading.

We are cracking me Up

Today I'm going to share a little realization I came to about what has become of "us". You know the "us" that Dave and I used to be? The youngest in our Sunday School classes to have actual children? The coolest people we knew? The ones who loved a night out together? The people who loved to travel without a plan and just pack up the kids on a whim to spend a weekend at the beach? Yeah, that "us".

Well...I realized last weekend that the "us" who we once were is GONE. It has changed and we are now the "us" that cracks me up.

This realization came to me as I watched Dave study how to place his newly purchased tomato plants into his even newer purchased "Upsy Downsy" pot. Seriously? This is who we are? He who went to walmart to INTENTIONALLY buy that pot, and I who went to INTENTIONALLY buy a 20lb bag of birdseed? What happened to "us"? We used to be SO cool!

As Dave tended his "garden" (yes he planted some vegetable things to grow on his own!), and I watched the birds fly toward the newly hung feeders I laughed out loud at "us". I cracked myself up. Well, we cracked me up. What is happening in our lives? What is going on around here?

I would like to pretend that we are still the "us" I have always known and loved, but truth is that over the last 5 years or so we have become very different people. We have aged. Quickly! I think our tiny 2lb gherkin had MUCH to do with that process taking place, but I'm realizing this spring more than ever that I kind of like the new "us". Yes, we are oddly behaving like our parents(I can't believe I have admitted to that), but more than this new behavior we are absorbing our at home moments and enjoying them. No desire to go out, run to the beach this weekend, or even sit in Sunday School. Its just a desire to be together with our kids, in our home, and thanking God for having these days to spend with them.

The presence of our sweet Ashley Kate in this family has brought the important things front and center and the rest of the "nonsense" in our world has faded into the background. Among all the struggle and hurts I'm truly grateful for that part of this journey. I mean it would be great to spend time at the beach with the kids, but its also great to spend time in the back yard sitting around our pool watching them hang out with their friends and placing Ashley's toes into the water so she can splash away. It would be great to be surrounded by a body of believers who were our close friends, but it hasn't been possible on this journey with Ash and so its enough to know that those friends who still surround us are the real deal. A night out is great every once in awhile, but having to get ready for it...not so great. We choose to stay in.

It doesn't take much for us to feel "cool" anymore. Just a glance at one of my kids is enough for me. They are cool enough for all of us. They are young. They have no interest in tending tomato plants or watching birds. They are living the life we once lived and there is something amazing about the whole process of just sitting back and enjoying their triumphs, competitions, and accomplishments and not feeling as though the two of us have to go out and conquer the world. We don't. We just have to conquer another transplant! Not the whole world:)

So...this morning as I wait for the birds to stop in for lunch I'm cracking up at us because Dave's tomato plant is twirling in the wind and Ashley Kate stares at me wondering what it is that I am finding so funny. Nothing really sweet girl, just your mommy and daddy and how incredibly not "us" we have become.

Life is good. It truly is.

Persisting

Ashley Kate's fevers persist.

I don't have much to say. Just that...I'm discouraged. I want so badly for her to be free of this infection and not fighting an uphill battle.

Weeks of antibiotic treatment have kept her comfortable, but have not cleared the bug. I guess we will continue treating. Thats all we can do.

Leaving It ALL

This weekend Allie B. is playing in the spring soccer tournament. She takes my breath away! Seriously, the girl can play the game.



I watch her from the sidelines and she inspires me. She inspires her mom to be great. To do great things. To give it my all.



Allie only knows how to play the game one way. She's an all or nothing girl. If she's gonna play, she's going to give it her all. She doesn't leave the field with one single ounce of energy left. She has learned to leave it all out there. Walk off that field knowing that she did everything she could to be great.




I have a lot to learn from this girl of ours. If I could figure out how to live my life in the way that she plays this game, I wonder who I would be. What kind of mom could I be? What kind of wife could I be? What kind of witness could I be?




Scrolling through the shots of today's game I realized that this is exactly how I want to live my life. Face the obstacles head on. Take one for the team. Use my all to make a difference on the field of life. Do and be something great because I refused to accept anything less of myself than my best offering.


Oh, Allie B., what a gift you are to me! You inspire me. You make me want to be more like you every single day. Thank you for being the player that you are. For being the young person that you are. For being my hero. I love you kid. Love you more than you will ever know. By the way, you were AMAZING out there today. Thanks for playing for more than yourself. Thanks for playing for the little girl who will never have the opportunity to play like her big sister. You do her proud! Your taking that field for two every single time you walk out there. I love you for that.

Arithmetic

Last night Dave and I sat at the top of the bleachers waiting to watch Allie run in the 1600. We were chatting about this and that. He asked me something(I don't remember what it was) to which I replied,

" I honestly don't remember anything that I don't have to know. If it doesn't involve Ashley's cares then I don't know it. I'm just a fraction of the person I used to be."

"Your not just a fraction of that person. Your a multiplication."

I love that guy. I really do.

DNR

I'm not sure how to even begin such a posting. Its weighed heavy on my heart since in the throws of the battle last week. Seriously we were "punched" in the gut by the mention of such a thing. It came out of no where. So unexpected. Nothing, and I repeat NOTHING that Ashley Kate has ever endured has brought those three letters into a conversation between her physicians and her daddy and myself. Just never heard them concerning our Ashley before last week.

So...I won't ask you to understand. I won't. I mean if your a parent then maybe I might ask you to imagine if you think you could what it might feel like to stand in the place that we do. It is such an impossible situation. So impossible.

Please look at the face of our Ashley. Look closely at those eyes, that smile, those rosy cheeks, and the glow of her skin(ignore the "fluorescent" bili glow and see the actual glow) and say to me "its time to think about putting a DNR in place". This picture was taken moments before I posted it tonight. This is our Ashley Kate tonight. This is how GOOD today was. She is a completely different child then the one we so desperately tried to comfort last week.

Dave and I realize we are living on borrowed time. We KNOW how fragile her life is, but more than that knowledge we KNOW how amazing her life is. We KNOW how good it can be and how precious she is to this family. We KNOW how very precious she is to her Creator. Not fighting for every single breath until HE CALLS her home is not an option for us. It has never been, is not now, and will never be. Her life has value and I see that value. I see it in every single breath that she takes. We will not be signing a DNR. We will not stand by and watch her die without trying everything humanly possible to save her. It will be the hand of God and only His hand that will remove her from our lives.

I refuse to stand before the God of the universe one day and not have the ability to answer Him when He asks me "What did you do with the gift that I gave to you?" I want to, with my whole heart, answer that "I did all I could do. I loved her well." I will not waste the precious life He entrusted to me. I will not give up. I will not give in. I am responsible to a Higher Power and I believe that with my whole heart.

We face an impossible choice. It is so impossible to know the right or wrong answer. I know that we are not willing to give up even ONE good day she could have here in her home to an uncertain path in our transplant hospital. I also know that by not attempting a transplant to enable her to have more of a life that we would never be able to forgive ourselves. We know both sides of the decision. We've lived them before. We know how hard transplant recovery is, but we also know how great life can be once she makes it back home. Its tricky trying to determine when her good days will be coming to an end before she is too sick, too broken, and too weak to endure the transplant. No one knows the right time. Well, I know that God knows and I'm having to trust that He will in some way make Himself known to us so that we will know it too without a doubt.

Today we spent in Shreveport. Ash had a doctors appointment there to go over all that she has been through since they had put eyes on her last. It was a LONG day. We actually had to make a visit to Interventional Radiology to work on one of the lumens of her central line(Praise God it was successful). We ran into my dear friend Joan and precious Kylie in the waiting room of the clinic. Such a sweet surprise. Such a blessing to hug her today. Kylie looks incredible. It is SOOOOOO deceiving to see our girls on their good days. You would never know they face an impossible battle ahead of them to regain their lives. Ashley did well on the drive. She did well with the many, many hours we spent there today. She went without her 4 hour nap and stayed awake for most of the day. At the end she succumbed to exhaustion and fell asleep sitting up. Needless to say she is sleeping hard at this moment and once her meds infuse I imagine I might get a 5 hour span of uninterrupted sleep. I don't think she's moved since I placed her in her bed.

We discussed hard things today. I think most of our discussions from this point on will consist of hard topics when we are at her appointments. She is in fact still battling staph in her line. We all expect her to battle it for some time. At this point it looks as though the antibiotics have it under control. She's not having fevers. She's recovering. The third spacing is improving although she is weighing in at 50lbs! I've had to go up an entire size in her clothing to accommodate the fluid she is carrying. The only sure treatment for clearing the staph is removal of the line. Removal of the line would sentence Ash to a miserable death. I can't even imagine such a horror. I won't.

Our current goal, as it always has been, is quality. We desire quality of life for Ashley Kate. I mean I desire a lot more than that for her, but at the top of the list remains quality. If I can't give her that then I have failed as her parent. I refuse to relent on this issue. She deserves nothing less.

We continue to be still. To wait. To seek. To not "jump" into a decision we can't take back. As we wait we aspire to live. To live a life full of joy and gratitude and to give our children the opportunities to make memories together. It means more to me than anything else at this time as we try and figure out our next move and when to make it.

For today I can say it was a good one. It was better than the one before, and the one before, and the one before that. She's still recovering, but she's much closer to her "normal" than she was last week and I am grateful. So very grateful. Thank you for your continued prayers. Its an up and down journey we are all taking together. Exhausting and emotional. I realize that. I also realize how much you have to endure as you continue loving our baby girl. I just wanted to thank you again. Sincerely, I thank you.

Two Words

Myth Busters...enough said:)

Doing it again

In true Ashley style I'd like to announce that my girl is doing it yet again.

She is battling back, fighting like a champ, and turning this whole mess around. I'm so, so proud of her and even higher than my level of pride is my level of gratitude.

Last night Dave and I sat on the playroom floor with our girl and watched her smile a few times, play a little, and enjoy her life. I looked at him and said, "She's doing it again." To which he replied, "I knew she would.".

Ash has a long way to go. Her energy runs out quickly. She takes 3-4 hour naps each day. She isn't as animated or as communicative as she normally is, but she's getting there. I did witness her lie herself down last night from a seated position. She was shaky and it was hard, but she did it by herself and that was encouraging. She has not yet moved across the floor, but I imagine as each day passes she will get stronger and stronger.

We have a HUGE amount of antibiotics running through her veins and I know that is the reason she is doing it again. The course from this point is unknown. We may in fact have to keep those meds running for a very long time. No one really has a plan yet.

The best news of all today? Are you ready? Her bilirubin is DOWN to 14! I'm so pumped about that! It is incredible! You can see as it gets lower and lower her energy level gets higher and higher. There is LIFE in her eyes again and its the best thing I've ever seen.

Its a busy, busy week around here. Soccer last night. Two baseball games in Nacodoches tonight. District track meet Thursday in Whitehouse. Two more baseball games Friday night. Soccer tournament begins Friday night too. Then two more Soccer games on Saturday that will determine if she plays again on Sunday.

I'm tired from the lack of sleep. My hair is falling out in huge clumps from all the stress. I'm never quite sure what each day is going to hold in my sweet Ashley's life. My hands are shaking most of the time from all of that but above all I KNOW I'm blessed. Three amazing, beautiful, talented, incredible young people that I get to call mine. I get emotional each time I sit and watch them be who they are. Whether thats on a baseball field, a soccer field, or on the floor of the playroom. They are amazing and I get to be their mom. How blessed am I? So undeserving to have such an amazing life!

I'm off to the fields in Nacodoches to watch Blake pitch. I hope you all have a blessed day. Ashley Kate is laughing ever so quietly in the other room, but she is laughing and I can honestly say its the sweetest sound I've ever heard.

I'll Try Again

I know this is all very confusing. I do understand that. It can get confusing for us too and we have been living it for over 5 years now. So many things to try and understand. The questions don't bother me. I just wish I was better at explaining it to you.

Repeatedly over the last few days we have been asked, "Why don't they just pull out this central line and replace it once the infection is treated?"

I'm not sure if I haven't explained it well enough or if perhaps there are new readers who haven't been with us long. Today though I'm going to try and explain it again.

Each of us has 6 central venous sites in our bodies. We have jugular veins(in the neck), subclavian veins(in the chest) and femoral veins(in the groin area). Each of the these 6 sites are referred to as central veins that lead back to our hearts. They are larger than a peripheral vein. When you have an anatomy that does not allow you to eat your food, digest it, and waste it then you are fed with a solution that is called TPN(it stands for Total Parenteral(in the vein) Nutrition). The TPN contains vitamins, nutrients, and calories necessary to sustain life. TPN is unable to be run into a peripheral vein. It requires a central vein.

Through the years, after multiple central line placements you can begin to lose access in your central venous sites. The fact that a catheter is placed inside of those veins causes scarring many times leading to the loss of that site. Blood clots and occlusions also have caused the loss of sites in Ashley Kate. As her larger, central veins have scarred down, occluded or developed blood clots, her body has compensated with the formation of hundreds of collateral(branching off from larger) veins throughout Ashley's body. The formation of these collateral veins is a blessing and a curse. A blessing in the fact that God created us in such a way that her body is compensating for the loss of blood flow and making a way for it to still occur inside of her body. A curse in such a way that it makes placement(the threading of the wire) to her main veins very, very difficult even for the most skilled of physicians. Ashley's body has literally hundreds of "spider like" branches of veins that have formed over the years. This makes the placing of even a PICC line(a temporary form of central line) near impossible in her. So a PICC line is not an option for us either.

For a transplant the magnitude of what Ashely Kate needs to be physically possible she must have a central line placed in a vein above her diaphragm. As they open her up they have to clamp off several veins in order to place the liver and bowel inside of her abdominal cavity and to keep her alive during that placement her central line has to be above her diaphragm.

Ashley's sites are all gone. They have been used up, collapsed, or damaged over the years. The site we currently have this infected line is was "created" using very, very difficult and non traditional methods. It was indeed miraculous the way it was done and we were told that it was more than likely not even possible for it to happen. But...it did. Grace of God? I think so.

A trans hepatic line(like the one she came out of ex plant with) is not an option for transplant since her liver(where the hepatic veins are located) is needing to be removed and replaced with another donor liver. It is not located above her diaphragm.

This all makes perfect sense to us because we have been living it for years and years as Ashely Kate's parents. I understand that my explanations may not make perfect sense.

Survival of small bowel transplantation with only one central line site is nearly impossible. Its technically possible, but it is not probable. Dave and I know this. Our transplant team knows this. Still we are all willing to attempt it since it is the only hope that Ashley has left.

It sounds simple to remove this line, treat her infection, and then put it back. EXCEPT that its not that simple anymore. We have run out of access, limiting our options for treatment of this line infection.

One of the biggest reasons we have not listed Ashley for transplant yet is that we don't know where we will "go" I mean where we will place a line in her if her current line becomes infected and her body is septic. A line is IMPERATIVE while recovering from transplant. It is needed for nutrition, medications, and fluids. Without access she will die.

So...its a very difficult place we find ourselves in at this time. Very, very difficult. Removing this line, her only chance for re transplantation, is an impossibility. Currently the infected line is all that is keeping her alive. Without it she would be unable to receive nutrition and she would die.

I feel the crushing of this burden in our lives every minute of every single day. It never gets lighter. NEVER.

Up and Down

Ashley's temperature was up again today.

Ashley's weight was down a little today, but still up about 8lbs.

Ashley's body continues to 3rd space fluids indicating her level of infection remains up.

Ashley's energy level remains down, but she was up a little more today.

Our disappointment over the recurrence of her fever kept me feeling down most of today, but overall I think things are looking up. I'm sure its just the presence of the antibiotics running through her veins, but still I think she's getting better. I just don't know if the infection will be cleared or just held at bay as long as we keep infusing them. The whole fever while having such a high level of antibiotics on board was not encouraging in the overall outlook.

Dave and I are trying to talk. We are trying to discuss what options we have left. Its not an easy thing for us to do. In talking about it all we are forced to stare at the reality of the situation. We want to remain positive and optimistic, but there are times when we feel as though we are just fooling ourselves. Not too long before the rejection of her small bowel last summer one of our physician's had filled out some paper work for us that we were needing. On the line that asked for her future prognosis I glanced at the word he chose to write and I felt so hurt. It read POOR. What? Had he not seen how amazing she was doing? We had been home for an entire year. She had been so "healthy" and was learning and growing and had even begun walking with her walker. What was he thinking? The word haunted me. For the next month I couldn't shake what he had written... And...then...it happened. He was right. He knew something we had refused to believe. I guess through it all, up until her ex plant, I always thought she would come out on top of this "game". I just always did. Since ex plant, I have struggled. There are good days and bad days. Days when I have a defiant confidence and I believe that once again she will beat the odds. Then there are days when I hurt so much as I stare at her face and I know what she's up against. I truly don't know what is going to happen to our Ashley. I just don't know. Its such an awful, awful place we find ourselves in. No idea what direction to go. No peace. No decisions made.

Tonight she sleeps in her own tiny bed with her big brother's baseball in one hand and her arms wrapped around her beloved dinosaur. She has an infected central line, the very last one they say her body will allow, a sick and struggling liver, and no small intestine. She is so unaware of the battle she is up against. She's just precious, and sweet, and so, so little. Tomorrow she will wake up in her own room with Blake's baseball close by and her dinosaur under her arm and she will live another day of her 5th year.




How do we fight this? How do we win? How do we do this? I just want her to keep waking up until she turns 6 then 7, then 8, then 9. Not only do I want her to wake up each morning of those years, but I want her to wake up in her own bed, in her own room, inside of her own home.

I'm up and I'm down. I'm encouraged and discouraged. All at the same time.

A little more each day

I think overall Ashley Kate is getting better a little more each day. She seems to have more time awake, more opinions, more interaction, and more energy as the days pass. She is still very, very weak and still sleeping a lot more than normal, but I am encouraged as I watch her get back to more of a baseline then what she had all of last week.

We drew labs yesterday morning and most everything was unchanged. We saw a small improvement in her bili and we are very grateful for it. It went down about 3 pts between Wednesday and Friday. It is still over 20(the acceptable normal being around 1),but its no longer 25 so thats good news. Her skin remains golden, the whites of her eyes very yellow, and her urine a fluorescent shade of orange as she excretes the bili from her system. Her mouth is slowly improving, but improving. I still pull strings of bili stained mucous off of her tongue and the roof of her mouth, but she seems to be able to swallow today.

We have a long way to go before returning to the Ashley we had just a couple of weeks ago, but I think we can get there. She encourages us so much each day with her ability to cope and come back time and time again from the unthinkable.

As far as fighting the infection in her line I don't know if we will be able to clear it or not. There are not enough hours in the day to actually infuse everything she is supposed to be receiving. Her IV meds take a total of about 7 hours a day to infuse(two antibiotics and IV lasix) and her TPN runs for 18, her IV fluids 24, and her Omegaven for 12. Add to that the vanc locks we want sitting in her lines and we simply don't have enough time. Since nothing is cleared as being compatible to run with the Omegaven then we have to disconnect her line for those 7 hours that the meds infuse and that leaves us 1 hour shy of the number of hours we need each day to finish the task. It is a constant setting of the alarms to lay out meds, infuse meds, flush off meds, and re start TPN. The schedule is so complicated that even when I try to write it out I get confused. It only seems to make sense inside of my head and I'm thankful it is clear there or I'd be losing my mind. Ashley is slowly reducing the weight that was placed on her last weekend as her body began to third space its fluid. She is now wearing her normal clothes more comfortably. As of Thursday morning she was down 5lbs with only 10 more to go. I'm pretty sure just by the way it feels as I pick her up that she's lost even more than that now.

I know Ash is more comfortable here in her home. You can see it on her face. You can read it in her eyes. You can hear it in the one or two giggles we have heard out of her in the last few days. I'm glad she's here.

We will be seeing our Shreveport team on Wednesday afternoon this week. I'm hopeful she will continue getting stronger a little more each day as we approach that drive.

Many, many thoughts run through our heads each day about the place we find ourselves in at this time. So much is dependent on how soon( if ever) we can clear her of this staph infection. I don't know what will happen from moment to moment so trying to formulate a plan for the next phase of her life is useless. I just keep going each day never taking for granted that she is in it. I know there may come a day that she is not. Its that very real threat that keeps me working so hard to enjoy each moment of my time with our Ashley. Words to pray are hard to come by at this time and to be honest we've just run out of what to say to Him. I'm so very grateful that so many of you are praying for us right now because we are tired and the best I can do some days is just to pray these words, "I don't know what to say anymore. You know it all. You know already." I'm left at His feet hoping to find more grace and more mercy. Its the best I can do.

Thank you so very much for asking about Ash, about our family, about us. Thank you. It means so very much.