Final

Needed to take a break from the "heavy" and just have some fun for a moment. So I threw in a jumbled mess of photos from our last days on the ship. The last port was Ketchikan and we had a great time. Dave, Blake and I all went snorkeling. In ALASKA! So cool! So fun! So cold! You won't find any of the photos from that excursion because trust me when I say FULL BODY WET SUITS are not photo flattering! You wouldn't want to see them. Still as foolish as we felt it was an experience we will never forget. Surrounded by snow capped mountains exploring a world below with bald eagles flying overhead. Unbelievable experience.

The photos really are just a glimpse into what has been one of our favorite trips ever. As a family we stepped out of our world into a make believe world for just a week and I can't wait to have the opportunity to do it again some day.

The last afternoon on the ship Ashley Kate had an invitation delivered to her. It invited her and her guests to a private meeting with the ships characters. Wow! is about all I can come up with. We, with about dozen other guests were welcomed into Studio Sea to visit, laugh, dance, and take photos with all the Disney favorites. This was so unexpected. It was a magical evening that made our hearts smile as Ash got the opportunity to see them all up close and spend a few personal moments with them. Tears did spring to my eyes when Cinderella asked a friend to pull out her own camera to get a picture of her with our sweet Ashley. That doesn't happen too often when the main attraction wants a photo with the guest. Its normally the other way around. What a blessing. Apparently Ash had caught the eye of the character manager and she sent the invitation to her.

So...I promise no more long, boring slide shows of our family vacation. Thanks for humoring me. Its been so fun to sort through the pictures and share them with our family. Back to the daily grind for me:)

Heavy

That pretty much explains how it all feels tonight. The weight of our world is crushing me.

I spent most of today in Shreveport with Ashley Kate. 9hours to be exact from start to finish. That in itself is exhausting. When you add to that the heaviness of all the discussions and decisions it totally exhausted me. I'm emotionally spent at this time. My nerves are shot. I live on edge most of the time these days. Its been a rough few days since speaking with transplant. Really rough as I realize that my world is crashing down around me. All that I love and treasure and fight so hard to protect is being shaken as I stare into the face of this situation. Ashley's body is broken and it is going to wear out. The infections she currently has are ugly ones. Very, very difficult to clear. We are being pushed closer and closer to listing her for transplant. A very risky transplant that I'm not confident she will survive. That shakes me to my core. Knowing that the risk of this operation is so high scares me so very much.

If you asked me last summer, immediately after ex-plant, when I wanted her listed I would have said,”As soon as possible.” Obviously, Dr. G was right when she told me to take some time, talk over the pros and cons, don’t jump into that decision. If you asked me today when I wanted Ashley Kate to be listed for transplant my answer would be very different. I want Ashley Kate to go to transplant when all of her good days have run out. I’m don’t want to give up even one day that she could spend at home laughing, playing, and living. The tricky part is knowing when the timing is right. We can’t allow her to get too sick that she is unable to be listed. I wish I knew when this was going to take place. We have no idea how long it will take to get the call that organs are available once she is listed. If I knew it would be months then I’d list. My fear is that they could become available before I’m ready to go.

There are more reasons than I can count as to why I’m not ready. Mainly, the possibility of losing her. It is very, very high. Another one is her lack of understanding. I can’t bare the thought of her feeling betrayed, hurt, trapped, confused by it all. I also struggle knowing the physical pain my daughter will have to experience. I’ve made it my job to spare her from as much of it as I can for as long as I can remember. Regrets. I want her to experience the world, have a childhood, laugh until there are no more laughs to come, and LIVE. When you add all of those reasons to the idea of abandoning my two teenagers for months and months and leaving them without a mom the emotions overwhelm me. Honestly, I can’t come to a decision at this time. I feel as though circumstances are forcing us into a corner where ultimately our only way of getting out of it will be to hand her over for transplant. If I get really honest with everyone I can say that I’m afraid of the blame game entering into our lives. We are on different pages with this and if we don’t go and its too late I don’t think Dave or the kids will ever forgive me. Bigger than that I won’t be able to forgive myself. Being left to forever blame myself and carry the guilt for not trying. If we do go and she is lost or has to suffer and then is lost I am afraid I will blame Dave for wanting us to go. This has been the hardest thing we have ever had to face together and we have had to go through some very hard things before. We are very united as parents. Always together. Almost always agreeing which way we approach parenting. This issue is tearing us apart. Its not easy to talk about. Not easy to agree on. Not easy. Neither of us want to lose our daughter. We are unable to envision a world without Ashley in it. Maybe the time will come when resign ourselves to those thoughts, but that time is NOT now. We SO desperately want her.

I know how easy and tempting it is to say, “Trust God. “ “Where’s your faith?” “It will all be okay.” Many, many people share those words with us often. All of those are true statements and I understand what your saying. BUT…its not so simple. When you are thrust into an impossible situation like we are in, although our faith in God is strong, its just not easy.

Ultimately I KNOW it HIS choice and her days have already been recorded. Still, my heart aches and struggles with knowing when we should say, “Ok, lets go for it.”

Currently, Ashley has three different bugs growing. A gram positive and two gram negatives. One of the bugs causes us all to tremble inside knowing that it will be only by a true miracle that we can treat it effectively enough to kill it. Honestly, a miracle. We need one. If we can’t kill this bug it will kill her. With or without her central line. If we remove her line, which is the recommended and only for sure treatment, she will die from lack of nutrition a very slow and painful death. It also removes any hope of transplant from us without this central line. If we leave it in place and are unable to kill the bug then it will more than likely take her from us as we battle an ugly sepsis. Listening to all of this today while my daughter happily played angry birds and giggled in her chair as I sat in the exam room with her seemed so surreal. This isn’t really happening is it? She looks SO amazing. She appears to be winning this battle against her line infections. Appears to be. When you view her continued blood culture growths then you know in all reality she is not winning. We have taken a total of 6 blood cultures in a weeks time and ALL 6 have come back positive despite being on antibiotics for that whole week.

This leaves us with very few options. None of which are good. I came home with her and just kept keeping on. I started her new med schedule and here I am up again at 4am to run more meds. The schedule on the front of the fridge lays out an 11 hour a day infusion schedule. 11 out of 24 hours a day I am infusing antibiotics into her blood stream. The earliest hour starting at 4am and the latest one finishing at 12am. Something has to be started at 4, 5,7,10,12,1,3,8,9,10,11. This is in addition to her TPN that runs for 18 hours a day and her Omegaven that runs for 12 hours. The trickiest part being that her Omegaven cannot be run at the same time as any of the above meds for those 11 hours. It is literally an around the clock schedule that I am doing my very best with as I continue to parent Blake and Allie and have them where they need to be at the right times they need to be there. Life is very, very complicated for me this week.

With all of that said I realize that I would do this, have this schedule, a thousand times over as long as it means I am still Ashley Kate’s mommy. Nothing is too hard as long as that precious, beautiful little girl is sleeping soundly, feeling safe, without a care in her world, in the next room down the hall. That is truly all that matters.

Today

I'm taking this whole infection issue a day at a time. I have a tendency to allow panic and fear and past experience to creep into my heart. I am trying to balance that with an attitude Allie carries with her about her sister.

"They always say she can't do this or she cant do that. She's going to die or she's not going to ever be the same. They are always wrong. Ashley will be ok. She always has been and she will be this time too."

I smile when she so passionately shares her thoughts with me. She believes in her. I mean, REALLY believes in her. On the other hand I try not think about the other possibility. Denial? Instead I hope that this positive attitude and hope she carries with her will if nothing else always prove to be true.

Ash feels better. She really does. She looks HORRIBLE, but she is smiling and playing and entertaining herself. She's sleeping a lot too, but between those long naps she plays angry birds, watches Cars, flips through the pages of her favorite books, etc. She is so huge she can't sit herself up or lay herself down. She can't scoot or roll over. I'm not sure exactly how many extra pounds of fluid she has on her today but its in the neighborhood of 10-12. This morning she woke with a wet sounding cough. Her lungs are wet and she's coughing up some really thick mucous from her lungs. As a result of the "wet" sounds we began some IV lasix to help her get rid of some of the fluid. The problem is that until the infection gets under control(which in some ways it is and others it is not) she will continue to third space fluid into her tissues and out of her blood vessels. Its just how her body is reacting to infection these days. Her albumin is very low and usually we would explain that by saying that when she has an infection the walls of her bowel become weak and it spills albumin causing her level to get so low that fluid seeps from her vessels into her tissues. That theory doesn't really work anymore since she no longer has a bowel, so I can't tell you why her albumin tanks now. I just know that its because of the low level that she third spaces.

I say it is and isn't under control when referring to her infection. It is by way of temperature and feeling awful. Those are better. Normal almost. It is not by way of blood cultures that continue to come back and tell us the bugs are still in her blood stream. She remains on 3 different IV antibiotics. Add to that her TPN, Omegaven, and now lasix and its getting back to a schedule that allows for very little sleep if any at all.

But...today I'm trying to focus on the future. The near future that brings with it a birthday celebration for a very precious almost 6 year old. I'm looking for professional clowns in our area(striking out so far. I want the kind who are in full costume, including painted faces and all), face painters, and a magician. All are needed to pull off this years celebration. We have a lot of the prep work completed as far as props go from all the work we did last summer before she got so sick, but I've got lists and lists of rentals and other items that I still have to secure. I'm better when working on a project. It gives me something to focus on besides infection and transplant. So the invitations were ordered today and those of you who live anywhere close to us should be looking for them soon. We have friends and family attending from Oklahoma, Texas, and Louisiana. If any of our Nebraska friends would like an invitation all you have to do is send me an email. Hey, its only a 14 hour drive. Not that bad is it? I'm really looking forward to having everyone together again in celebration of the life our Father has blessed Ashley Kate with. Last year we had 85 guests attend her party all the way in Omaha! It was an amazing day. We were surrounded by such love and support. I'm just so excited about it.

So that how things are happening around our house today. A very swollen little girl and a very tired mommy. Add to that workout schedules for both the big kids, soccer camp, and another baseball tournament this weekend and that about sums it up. Oh yeah, the birthday planning makes it complete. I hope to make a couple more slide shows from our trip and complete that part of the journal soon too. Maybe tonight while I wait on her meds to finish up.

Plus and MInus

Late last night it was confirmed in our latest set of cultures that we have both positive and negative bugs growing in Ashley's central line and blood stream. The positive bug is our nemesis...staph. Just part of our life the last 6months. The negative is identified as some kind of "ICU bug" which is odd since Ashley hasn't been in the ICU in a long, long time. Most concerning is that the cultures are still growing bugs even though she's been on antibiotics since Wednesday. Leaves us all wondering if in fact these bugs are becoming resistant to treatment.

Tonight I sat down in a restaurant with my son. Just the two of us. We talked about a lot of things. Heart issues mainly. The importance of Godly character. Choices in friends. Growing up. Maturing. Baseball. His baby sister, and a few other things sprinkled in the mix of conversation.

At one point in our conversation he looked at me and said, "Everyday I wake up with the knowledge that today my little sister may die. Still I try to keep being positive. I stay happy. I just don't lose it, even though I know I could at any time."

My heart was pierced by his words. Literally I felt a pain so sharp shoot through me. Its not often that we talk about things this serious. Blake is a happy kid. Laid back. Loves life. Plays ball. Laughs a lot. He's just so much fun. I try to keep it light with him. Always telling him the truth, but trying not to burden his heart with too many details.

He was standing in the on deck circle late last night chatting with me through the fence when I got the call that we now had a positive bug to go along with a negative bug in Ashley's blood. He looked over at me and said, "Ahhh, you know, nothing that serious. Just life and death." Then he stepped up to the plate and tried to do his job. Seriously, I don't know how my big kids do this. I mean, it brings me to my knees some days, paralyzes me with fear on others, and breaks my heart almost every day.

Blake and I talked about what we've learned from Ash and her life. Mainly coming away with the statement that life is good and not to take any of its moments for granted. There's not much that ruffles our feathers anymore. Silly, petty, not important issues that surround most teenagers just don't get to him. He's a little more grounded than that, and I know its because of his sister.

I shared with him how proud I was of the way he and Allie loved Ash. I truly am proud of how much they adore her. "Why, mom? Why would you be proud of that? Its so easy to love her. Its not hard for us."

I let him know that I'm proud of the way they love her because they love her without condition. They take such care with her. Show such understanding and kindness. For example it takes three of us to change dressings on Ash now. That third spot has become Blake's. He so tenderly holds that tiny girl down and talks her through it as I work as fast as I can because not only do I know it is painful for Ashley Kate, but its painful for her big brother who has to be a part of hurting her.

This kid is going to make an incredible man some day. Simply incredible.

So on this day of not his best baseball performance ever(don't mistake my words he made some awesome plays things just didn't go his way at the plate this weekend), my son once again proved to be one of my favorite people on this planet. We laughed together, we hurt together, we sang at the top of our lungs to some really cheesy country songs together, and we walked into our home a few moments ago, kissed a tiny girl's sweet forehead and told her goodnight together.

All in all I think today was filled with a few different plus and minus'. Ashley's blood did make it up to a level of 50,000 platelets which allowed her to avoid a blood transfusion. So even though the positive cultures are a negative, the additional platelets where a positive. Blake's team lost in the championship game in Waco tonight and that was a negative, but he is still an amazing player and an even more amazing young man and that is a positive!

Our week has been rocky, but our life is still blessed. Ashley Kate is sick, but she's asleep in her own bed. The drive home was a long one tonight, but we are safely back home. I'm grateful for these things and so much more as I close out this day. Goodnight my friends. Thank you so very much for loving us and praying for our Ashley.

New, yet familiar territory

Ashley Kate's platelets dropped another 9,000 over night. We are waiting for a call from her physician to let us know things are underway for her admission. Our hope is that she goes in for her transfusion and is then released home tonight. We live a few miles, literally just 3 or 4 from our hospital and getting her there quickly if need be is not a problem.

I say this is new territory for us, but yet we've been here before. Many, many years ago. Ashley's life from age 6months to 14 months was spent being transfused every few weeks due to a decline in her platelets. Its been a long time since we have faced this issue, but we have seen it before. It was before transplant, before she was given a healthy liver, but it has happened. I guess its most concerning to us because its an indication that her liver is becoming sicker and sicker with each infection she battles. It causes a deep pit to form in my stomach. Watching the progression of her condition each time she battles an infection is what we knew would eventually happen, but had hoped that she could just keep going and going and going the way that she has lately. She is SO happy. Feels SO safe. Is SO content to be home and not living in a hospital.

Life inside the walls of a hospital is not living. It is not quality of life. It is merely existing. I am willing to help her endure those days if it means that she has a chance of regaining her quality of life, but I am not willing to give up even one good day. I can't do that to the little girl whose eyes sparkle and shine with joy as she takes in the world around her. She can't see the world from inside those walls. I will push and I will fight and I will do whatever it takes to bring her home. I will never stop fighting for a life for our Ashley outside of the hospital. Its the only way I know how to parent her.

I say all of these things to express the place we find ourselves in today. Fighting for life for our daughter and stopping at nothing to provide that for her, but always at the forefront of our minds knowing we may ultimately lose precious, irreplaceable time with her once we "pull the trigger" toward transplant. There are NO easy answers. There is no advice to be given. My heart is breaking daily as I watch her express such joy knowing all along that her joy will be short lived because of what lies ahead. Ashley will have no understanding of why?or what? we are having her go through. Her mind does not comprehend bowel transplant. It does however comprehend pain and fear. This is what torments me the most. I can't help her understand why she will have so many ouchies. God did not create her with the ability to understand that. She will understand that I am not keeping her from it and from those who seem to be causing it.

The call from transplant yesterday has caused my world to begin spinning out of control once again. It is spinning so fast that I can't hold on.

I can't see myself taking her back at this time. She has SO MUCH left to do, to experience, to enjoy. She is just so happy here at home. Although I can't see it happening now, I see that our hands are being forced by circumstance and we may have to go soon.

This infection is not good, but Ashley's vital signs are rock solid. She is not dying today. She is battling an awful infection and holding her own. She needs platelets. Her body is gobbling them up and she's not able to compensate quick enough by herself. She looks like a monster. I won't hide that fact. Her face is not recognizable. Its scary to watch what this is doing to her. Still, I know she is in there and even though her eyes are unable to open up from the swelling she still giggles and asks us to make animal sounds in her ears. She still wraps her arms around my neck and places those precious hands on my face as I whisper those sounds into her ears. Oh, how I LOVE my daughter. More than I can express. I want the best for Ashley. Only the best. Unfortunately the road to achieve her best possible life is a long, scary, rough one and its all to familiar.

Look at this face and...

tell me how.

How?

How am I supposed to explain to her why?

How am I supposed to help her understand?

How am I supposed to put her life on the line?

How am I supposed to do this?

I don't know HOW.

Transplant called today. Ashley's lab values were called into them on a alert status basis. Her platelets plunged again today. From 250,00 to 49,ooo. If they drop again tomorrow she has to be admitted for transfusion. Why are her platelets under attack? Who knows. The best answer we get is "infection", "part of the process", "results of a liver that is declining and struggling with each new infection".

So the question on every one's mind is this, "Are you ready to list her for transplant?"

My answer today, "No". No I'm not ready to take the little girl in that photograph above and send her down the hall not knowing if she will ever wake up to be that little girl above ever again. How am I supposed to EVER be ready for this?

The next question is this, "At what point will these infection take their toll on her body to the point that she won't be able to be listed." When is the "time" up? NO one knows.

Either way I'm gambling with her life. I'm not a gambler. I'm a mom. A mom that wants to protect her from ever suffering again. A mom that wants to give her the best quality of life possible this side of heaven. A mom that is TERRIFIED of going back to a place that is so familiar and yet so different.

Why can't she just be allowed to grow up? WHY? WHY? WHY?

My heart hurts tonight. It hurts so deeply. My head hurts from the pressure I'm under. My eyes burn from the tears that fall. I love my daughter. I don't want to watch her suffer. With or without a transplant. I only want the very best life for her.

Look at this face and make it all go away. That is what my heart hopes and yet its so far out of my reach. I can't help my baby. I can't do anything. I'm helpless and as a parent it is the WORST feeling in the world. The stress, turmoil, emotions, and pressure are building and building and building inside of me. I hurt so much I can't function today. Going through the motions, trying to hide my tears.

Part 7

I just wanted to take a break from the madness of line infections and put some more "happy" on the journal. Just a reprieve from the med schedule for a moment.

The day we spent in Junea was one I know Dave and the kids will never forget. It was life changing! So beautiful. So Exciting. So amazing. So cool. This was one excursion I didn't go on because of my fear of heights and helicopters. Just don't think I could pull this one off so Dave and the kids went. I spent time on the ship with Ash and grandma just enjoying the ship.

Ashley made acquaintances easily on board. Like I said previously I think every one "knew" her. One family in particular was especially kind and taken with her. Always speaking directly to her, always complimenting her outfit, always taking notice of Ash and communicating with her. Such kindness! They had little girls Ashley's age who were very interested in how Ashley got dressed, how she got in her chair, what she ate, etc. etc. They had an extra set of of tickets to the very desired Princess Tea and offered them to us. We were thrilled. So Ash and I spent an afternoon enjoying tea with princess Ariel from The Little Mermaid. I LOVE the pics snapped this day. It made me so happy to have this experience with Ashley Kate.

As I watch Ash be sick and struggle today I'm even more grateful for the time we took to spend away with our family. It is so important to us to make the most out of Ash's life. To give her opportunities to enjoy the world around and experience life. I'll not live with regrets. I'll know that I did my very best to make her happy and give her the best life possible. I'll know that she lived and lived well despite the struggles. Deep in my heart I'll know that I did not waste one day I am given with her.

Negatives

The calls began coming in about 11:30 last night. The word on the cultures is gram negative. Negative is the feared word when dealing with central line infections. Add that to a central line infection that cannot be removed without taking her life from us and its a bad combination. I don't know, as I never do, where this infection will go or what it will lead to. I do know that we fight it. That is what we do. We fight back against it and defy it to take her from us!

Ashley is home. Sleeping in her own bed. She in all honesty is better than she was yesterday morning at this time. No fever, no trembling, very little vomiting, and she slept soundly all night. I am grateful for all of those things in spite of the gram negative cocci and bacillus that has invaded her. She is beginning to third space. I hate that. Her eyes are swollen shut this morning and she's tired. Refusing to wake up. Just rolling over, pulling her blankets up over her, and shaking her head no each time I tend to her. I plan on letting her sleep as long as she needs to.

Her vitals are all strong. Really strong. I'm amazed at how "good" she looks. Things in the gram negative world can change quickly and we know that. Usually children are admitted immediately with a gram negative, but with Ash its different. She wants to be at home. She needs to be home. We've done this before. Lots of times. She's better at home. Heals quicker. Rests better. As long as we have the means and the ability to safely care for her here then that is the plan and our physicians all understand that plan. We are keeping a close eye on her. Watching her respiratory status closely. Monitoring her every hour.

So once again we slip from our happy place to our not so happy place. As long as we can slip right back over then I'll be alright. There are just no other alternatives for our family. She will recover. We will get her well again. She will laugh again. Your prayers are appreciated. I'll keep you updated on her status as the days progress.

Home

Its always the goal. As many days at home as we can possibly squeeze out of Ashley's life. Our amazing pediatrician has once again come through for us. IV meds are being called in and should be delivered to us by this afternoon. I'm just so thankful for a team of professionals who want her to be comfortable in her own home it is at all possible.

For now its possible. We all suspect a line infection, but growth doesn't happen right away and sensitivities don't either. So we are using the combination of meds that stopped the staph in its tracts last time. He recommended we go ahead and use her repaired lumen so that we can treat each one since we don't know which one or if both of them has the bug.

Ash had a rough morning. She looked pretty bad, but has perked up a little this afternoon and is quietly watching Pooh bear in the play room. I expect she will spend a good part of today sleeping since she got almost none last night. Her temp has gone as high as 102.6 but currently is about 100.

We will keep Ash home as long as she remains stable. We have the means to check blood pressure, oxygen sats, heart rate, and temp all here in her room. We also have oxygen next to her bed if its needed. I don't expect it to be, but its here if it is. I'm hopeful this passes as quickly as it came on, but if it doesn't at least she feels safe and comfortable in her own spaces. I'm grateful. Extremely grateful.

Long Night

Wow, its been a long night. I stayed on the floor next to Ash's bed jumping up every time she moved, made a sound, or began to vomit. Just for the record I feel like I'm in my eighties this morning rather than my thirties!

Blood cultures and labs have been sent early this morning. Now I'm readying Ash to go see her local doc at 9:30 this morning. Not sure that anything will be done until we see growth, but its the way you play the game. Take them in so they know somethings up in hopes of getting IV meds going earlier rather than later.

Just wanted to say thank you for those of you praying for us through the night. I'll keep you posted.

Hope to Escape It

Its been a week to the day since our Ashley's central line ruptured in the early morning hours. It is once again the early morning hours and although I had hoped against all hope that we would escape such a dangerous situation without a line infection I knew it wasn't probable.

This morning Ash is running a temperature, a little trembly, and vomiting differently than her norm. All signs and symptoms are pointing toward the line infection I had hoped to escape. Nothing is for confirmed as of yet, but I've been in this place with her many times before. We will be sending cultures to the lab in just a few hours. She has an appointment in Shreveport at 9 in the morning, but I think I'll reschedule it for next week and make an appointment with her pediatrician instead. He can get things going such as IV meds at home quicker than can be done from Shreveport. I'm hoping to get into his office as soon as it opens. Ash is just not feeling well enough to make the drive to Shreveport.

She had a great day. Happy, playing, smiling. Not signs of illness. About 11:30 Dave notified me he thought Ash wasn't feeling well and asked me to check on her. I've been sitting by her bed ever since. It still amazes me just how quickly things can change. Literally from one hour to the next.

I feel slammed by reality. Our reality. Transplant reality. Infection, hospital admissions, deaths. It surrounds us in this crazy world. My heart is heavy. Its hurting. I sit by her bed praying to our Father knowing He is the only One Who can make sense of any of this and wishing for once that I would be given some wisdom or insight into the meaning of it all. My mind has been consumed with thoughts of transplant all day long. It dawned on me this morning that there are so few of us left. I mean, so few of the children in our "group" of transplant children still living. Just shy of 5 years into this world and only 6 children including my Ashley that we know and love are still here on this earth. Only 4 of those six do I know personally. When I allow my heart to remember the faces of the tiny souls we have lost over the last 5 years I can't keep the tears from falling from my eyes. In the back of my wallet resides an old slip of paper. On that slip of paper I record the names of those precious lives whom I have had the honor of loving on this journey as I hear of their entrance into eternity. Much to my horror my list gets longer and longer and longer. I never want to forget the impact that each life has made on mine.

I'm praying my Ashley turns a corner tonight for the better and that she is able to stay here in her home to battle whatever has invaded her tiny, broken body.

Part 6

Ok, seriously guys, this is a long one. I would like to say that I am almost through the files of pictures from our trip...but I'm not. I know you've got to be completely bored and what I thought would only take up a few days space in the journal is taking a whole lot more than that. I really want to include this trip in Ashley's journal so please forgive me for having to come back time and time again only to find another slide show of our trip. One day it will be over. I promise.

These are just a group of shots from character meet and greets, to activities like vegetable car racing, and a little in between all of that. We really enjoyed ourselves on this trip. The goal was to make memories spending time together and we did. We played bingo, trivia, shuffleboard, ping pong, putt putt, foose ball, you name it we did it. All together. Hanging out as a family and laughing until our sides hurt. The guys enjoyed a little room service(or maybe a lot of room service). We ordered mickey bars for a late night treat every single night. It was so great!

Ashley was the star of the ship. So precious. So sweet. 99% of the people we encountered enjoyed her and loved on our sweet girl. Theres always going to be a few who have little patience for things we can't control but would if we could. For the most part we were oblivious to those few and concentrated on our family and making the most of our time together.

As I work through the pictures I am so, so thankful for this time we were given together. I smile remembering the moments and whisper prayers of thanksgiving for the opportunity. I love my kids. If I could spend time with ANYONE in the entire world it would be this group of people I get to call mine. I am SO blessed.

Part 5

Our first stop in Alaska was Skagway. A very neat little town. We took Ashley off the ship and allowed her to enjoy the scenery. She LOVED it! Her eyes sparkled the entire time as she took in all the sights. We did a little shopping, some walking, and took some photos before returning to the ship to get ready for our excursion.

Most excursions offered were not wheel chair accessible, but we decided that was ok since Ash isn't that adventurous anyway. So we allowed the big kids(all 3 of them) to choose something they would enjoy. We did things we've never done before and I'll make slide shows of each of them so you can see just how amazing Alaska truly was. The first one was Allie's choice(much to my dismay. I swear I thought I was going to die!). Ziplining through the canopy of Alaska's rain forest. Amazing views, and if I could have ever gotten past the tears enough to enjoy it I would have agreed with the family that it felt amazing zipping above the waterfalls and river. I have to admit I'm glad I did it, and forevermore my kids WILL hear and be reminded how brave I was, ha!ha!

Breaking Hearts

Tonight as we learn of another loss of one of our own in the bowel transplant community our hearts are breaking. Again. It hurts so very much. Please remember this family in your prayers.

We fight so hard for our children. We battle the unthinkable and live like there is no tomorrow. Why? Because in our worlds there literally may not be a tomorrow. As parents we will them to stay, will them to fight, will them to win the battle, and yet at the time God chooses to take them unto Himself we can do nothing but surrender our most precious children unto Him.

Every day I question myself, question my decisions, my choices at this time for our Ashley and I am left with no clear answers or direction. All I do know is that for this night she is resting safely in her bed and within arms reach. I can touch her skin, smell her hair, kiss her cheeks, and hold her close. I don't know what tomorrow will hold or when she will enter back into the battle for her life, but today I listened to her giggle, and I watched her smile, and I breathed a sigh of relief as I tucked her into her bed knowing that we made it one more day. Thank God for one more day.

I'm tired of watching children whom I love die. I'm tired of our hearts breaking. I'm tired.

So much more

I've got SOOOOO much more to share, but for now this photo will have to do. We are on our way out of town to watch Blake play ball. Be back on Sunday, plan to share more on Monday. Have a great weekend.

Part 4

Here are some of the images captured from our day in Tracy Arm. It was breathtaking! It was cold, requiring blankets, jackets, and hoodies, but sooooo enjoyable. We loved the cool air. Ashley so enjoyed this day. We spent hours out on the decks just taking in the views. The majesty of God was reflected all around. Every place you turned you saw His creation and there simply are no words to describe the views.

The kids insanely spent an hour or so in the pools and the hot tubs. They joined us for a few games of shuffle board. We basically had the deck to ourselves because most passengers crowded onto the top two decks. We walked out onto deck 4 and spent the afternoon with just a few other passengers. It was perfect. Perfect for Ash to enjoy. I think this was definitely one of our very favorite days of the trip. A very slow pace. No going ashore. Just sailing into the fjord and enjoying what God designed and placed here for us to see.

Sweet Ashley played and giggled and entertained us all as we spotted otters and seals around lounging around on the ice. I'm so very thankful for the memories made on this day. It was just so perfect.

If your getting tired of these slide shows please feel free to check back in a few days once I've finished showing them. I have no idea how many there will actually be, but I understand it can get a little boring looking through someone else's albums:) For us its an opportunity to show Ashley's aunts, uncles, cousins, and grandparents all she saw and did while away. Dave's mom went on the trip with us to sit with Ash while we went on excursions with the older kids. It was such a blessing to be able to know Ash was back in the room napping or roaming the ships with grandma riding elevators(which happened to be her favorite activity of the whole week!) and not having to worry about wearing her out too much.

Part 3

Formal night was definitely one of my favorites. Its not often that we get all dressed up and go out. Our life is a little more mundane than all of that. So of course it was fun for me to see the kids and Dave all dressed up.

As I scroll through the pictures from the trip I'm just so overwhelmed. I love these people so, so much. The children are amazing, and I know they got all of those amazing qualities from their dad. Seriously, they are simply amazing people. My sweet, sweet Ashley is the most precious thing you've ever seen. She lit up the room on this night. Strangers were taken in by her sweet spirit and they never failed to share their joy with us as they watched her throughout the week.

There were times that I ached so very much as I watched people stare at all the "extras" that accompanied my Ashley through out the week, but seriously it paled in comparison to the sweet expressions shared with us by our fellow passengers. As a mom I wanted so desperately for Ash to enjoy all that the ship had to offer children her age, but I can't change the circumstances that we have been given. The best I can do for my sweet Ashley is to allow her to live life to the full extent that she is able. So I wake up every day and push back the hurts and disappointments so that I can give to Ash all that she gives to me. She so deserves happiness, and this week she was definitely happy.

Part 2

We couldn't have asked for anything more! This trip was amazing. So fun for our family. We laughed and laughed for days. I can't say enough about how much we NEEDED this time together. Our big kids are simply two of the best kids around and they LOVE their baby sister. Dave and I loved watching all of the kids have days and days to spend together with no schedule. Ashley couldn't get enough of them. I feel so blessed to have been given this time together.

Several times during our trip my eyes would well up with tears. Just watching Ashley enjoy the world around her, seeing the world react to our Ashley, experiencing the kindness of strangers who met our sweet girl, watching Ashley make her very first friend(so emotional to be her mom and realize she's never even had a real friend) and being greeted with her name by every single cast member who encountered her anywhere on the ship. It was all too much to take in without the tears falling. Ashley had the time of her life, and to be honest we all did too. I am SO glad we jumped head first into this trip. The memories made were worth every bit of effort it took to get us there. Living her life to the fullest is of the utmost importance to me. Every day I feel more and more pressed to allow her to live. If not then what have we done all of this for? Why endure the nightmare of it all if not to enjoy the world surrounding her?

I have so much to share. So many pictures, stories, emotions. There are simply not enough hours in the day.

Part 1

Just a quick opening glance to our trip. I'm pretty slow at this making slide show, loading photo thing, but if your patient I promise I'll keep putting parts up as I get them finished.

This is more for my family than anything because they are all waiting to see how it went. Please don't feel you have to watch them.

We did have an amazing time and in the process we were able to check off three more things on Allison's bucket list. So fun! Enjoy.

By the way...if you scroll over the photo you can read the text underneath it. Not sure why it works that way, but its the best I can do. Have a great day.

The time of her life!

We are home! I think its pretty evident by the look on her face that Ashley Kate has had the time of her life while away. This smile was a very common sight each day on our adventure. Ashley Kate thoroughly enjoyed herself, and we enjoyed witnessing the spirit she exudes for life. We are exhausted and buried deep within the mounds of laundry I am unpacking. The children are actually still sleeping at this noon hour. It was a long day of travel yesterday!

I don't have time to share all about our adventures at this time, but I will work on a slide show and a post to show just how amazing the time away was. Its nice to escape from the reality of our lives for a few days. We were quickly snapped back into our real world about 3:30am yesterday morning when Ashleys line ruptured while she slept. Just four hours before leaving for our flight home! Life is so fragile, and we were reminded of her frailty in those moments. Dave and I worked together in the early morning hours to use a repair kit on the lumen and we will be seeing her surgeons sometime this week to have them observe our work. I can honestly say that this has NEVER happened to us in almost 6 years of living with central line catheters. So SCARY! I was sooooo thankful we had a repair kit with us "just in case" NEVER dreaming that we would ever need to use it.

Anyway, the pictures are amazing. Priceless images that reflect the joy experienced by each member of our family as we made memories to store in our hearts for a lifetime. I hope to share them all with you(well maybe not ALL of them since there are more than 1500:), but some of the best ones). God bless and thank you all for your prayers for our family while we were away.

Traveling

Yup, you guessed it. We are traveling. In just a few hours we will have all of our phones turned off for the next 8 days. So excited about all this week holds for our family!

Ashley Kate has been such a joy all morning long. We had to be at the airport with her and all her "extras" at 5 this morning. We've now made it through the screening process and the ice chest and medical bags have all been cleared. Even "dinosaur" has been given the all clear to board.

Dave and I are so enjoying our children. We have laughed into the early morning hours with our girls as their big brother did his best to block out all of our nonsense and sleep.

As we enter into this adventure with our family I can't help but feel blessed. What a dream we are living. Just to have them all three together all these months later after some very tough days in ashleys life this last ten months. There were so many days I feared we had lost our littlest girl.

We are pressing forward in this life together as we push to live a life full of quality. Making every moment count as much as we can. From the mundane to the momentous. God has been good. He still is so very good to us. I know not what tomorrow holds for our sweet Ashley but I do know who holds tomorrow.

So until June 15 th I wish you all well. Take care and may God bless you. We are officially checking out of the real world and hoping to enjoy our escape from reality. Your prayers as always bless our hearts.