to what has proven to be one of the hardest and yet one of the best years of her life. Its time to let this year go and all the struggles, heart aches, and hurts that it included for her and for us. Still I want to hold close to my heart the triumphs that came out it, the lessons that were learned from it, and the knowledge of His presence that we were reminded of during it.

We started this year with such hope for our baby gherkin. We were so ready to put an end to her struggle and see just how far she could go, how much she could learn, and all she would accomplish. It didn't take long for us to be reminded once again of her frailty as we faced the prospect of losing her early on in the year. She hung on and fought one of the toughest fights of her little life and once again proved to us that God was not quite finished using her to impact her little corner of the world.

Once home she took off. All the things we had hoped we would see from her began to sprout as her strength renewed and she began to grow. We celebrated much this year. We saw such progress in her development. We found ourselves encouraged that this could actually be the year for her to learn to crawl, to stand, to walk. How excited we were by her accomplishments. What seemed small to some was so big to us. I'll never forget the night we first saw her scoot. It was a mere 2 inches, but had you been present to hear the cheers and celebration inside of our home that night you would have thought it were 2 miles. Each of us had such high hopes. Blake and Allie spent their summer working with her, encouraging her, and cheering her on. We surely believed this would be the year.

It proved not to actually happen for her. Once she became sick in early October she lost most if not all that she had learned and accomplished. As disappointing as it has been to see her decline in those areas she had worked so hard in we still celebrate the fact that she is battling back once again. She is still with us. Living, breathing, playing, laughing.

In the end, as I look back over this year what truly matters to us is what has always mattered where Ashley Kate is concerned. Dave and I prayed for two things for this child. We asked God to allow her to be happy. We asked God that she have the ability to give and receive love. That was our hearts desire. He has answered those two prayers. She lives life with a joy that only He could have given, and she loves. Oh my goodness does she ever love us back. In her eyes, her smile, her touches, her hugs, her "xmo's". She knows what it is to feel love and she knows how to return that love back to us. If she never walks, never talks, never does any thing other than what she does now we will still say that "God is good". For He truly is. He has created this amazing child and He has given her to us to love and to be loved back by her. When I look back over 2008 what shines the brightest is the smile on her face, the twinkle in her eyes, and the giggle from her heart.

Honestly, it has been a blessed year. So here's to 2009. May she learn and grow and love and accomplish all that He has in store for her. In the end nothing else will matter. My prayer for my child tonight is that He make her into exactly what He desires for her to be, and that He place inside of my heart an acceptance of that no matter what it is or isn't.

Happy New Year from our hospital room in Omaha, Nebraska. May the new year return us to our home and reunite the 5 of us once again. Goodnight and God bless you. Trish

I just finished a post that I started earlier in the day and now they are posting out of order. Sorry for the confusion. Be sure and look back to see how good she looked and how happy she was on the second day of our trip. Take Care. Trish

By the end of Christmas Day we had soaked up as much of the Magic as we possibly could. I can't even describe how very happy we were. It was supposed to be their busiest day of the year with the most crowds. Everything I had read told about how miserable the crowds would be, but I didn't even notice. Honestly, we were just soooo happy we didn't even notice. I'm not sure if we were so happy it made us stupid or if the little things like that don't really get to us anymore. Either way it was an amazing experience to be their with our children and see how Blake and Allison's excitement grew and grew as they had the opportunity to show Ash more and more and more. As a parent I can't think of anything more satisfying than to see your children express genuine love and appreciation for the each other. What a Christmas!



Ashley Kate's very favorite thing of this entire day was the Spectro Magic Parade. It absolutely captivated her. She loved it so much and I couldn't help but love it because of her face. It was too dark to get a picture, but we did video her reaction and it was priceless! Each and every float and character was covered in lights. The music was fun and whimsical and everything was just so perfect. Ash couldn't take her eyes off all that paraded in front of her.


It was during this parade that my son and I sat on each side of Ashley Kate and had a heart to heart. He sobbed in the dark over her broken body and all that he just doesn't understand. I could not help but cry along with him because if I don't get it how can I expect him and Allie to get it? There is no good explanation for the way her life is. There is no explanation for why she hurts so much and has to fight so hard. All I could do was assure him that I knew God had a plan to use her in this world and even though I don't get why this is the way He has chosen to accomplish it that I still trust Him and that he needed to also. Our conversation ended with this statement from him, "Mom, she's just so happy now. I want her to stay that way. I don't want her to be sick anymore." Something about watching our tiny baby girl have the time of her life brought him to tears. I don't know what it was that triggered it all, but I am grateful to have been there with him when it happened. 3 long years of hurt, misunderstanding, stress, and frustration. It is a very heavy burden those kids of ours are carrying.


We ended our day with a fireworks show and photo in front of the biggest Christmas tree I have ever seen. All three of our children. Together. On Christmas Day. God is really, really good!

Each morning Ashley Kate began our day by looking over the map of the park and pointing out what she knew. She recognized and signed every tree, bush, body of water and color on those silly things. She would spend the bus rides pointing and signing and pointing and signing which obviously brought attention from onlookers, but we adjusted and realized how cute it must be to see this tiny girl communicate with us by sign.




Day 2 brought us to Hollywood Studios. We had such a good time. Ash was having a great day and the smiles on her face on this day were some of the best we had seen from her in a very, very long time. She was just soooo happy! This next series of photos shows her mood on this day. They were just too cute to choose only one, so I'm sharing a few. More than anything I love the way she would point to something and then look at us like,




"why aren't you getting that for me?" It's like she truly believes her daddy can do anything. Like pull birds out of the sky, convince Disney Characters to come over and be her personal playmates, etc. etc. If she saw something she liked then she asked for it. It was so, so cute!



What I wouldn't do to put a smile on this child's face! It melts my heart when I see her feeling good, living life, being a little girl, and so, so happy. I love her and I couldn't trade the time we spent with her in Florida for anything. Even if it had only been one day it would have been worth it to see her eyes sparkling and shining the way the did. God blessed us with not one day, but 2 and 1/2. I can't complain. It was so much more than I thought we were going to have with her.


Ashley Kate's favorite ride on this day was the Toy Story Midway Mania. She loved the vibrant colors and giant toys that made up this attraction. It was so easy for her to get on and off of this ride in her chair that it made it one of our favorites also. The kids(all "3" of them) loved playing the midway game and trying to outscore each other, but most of all they loved seeing her enjoy this so, so much. It quickly became a favorite for all of us.





This was the face I saw as soon as I unloaded her chair from the ride. I think its easy to see that she enjoyed it and had a really good time.



Dinner just arrived some I'm going to take a little break. I'll pick back up later on. Hope your enjoying New Year's Eve. Ash and I are going to kick back and watch a movie and eat a little popcorn. Doing our best to make the most out of it. I sure wish we were back home with Dave and the kids so we could celebrate. Talk to ya'll later. Trish

Dreams do come true. They may not always be exactly what you thought you were dreaming of, but it does happen. At least for us it did. I dreamt of Ashley Kate for years. I loved her long before she was conceived. For so long I had pictured this baby that would be in our arms, and then once she was I realized that she wasn't exactly what I had been dreaming of. She was so much MORE. More than I could have ever wished for. More than I had asked for.

Our trip to the "castle" began as a dream in the heart of Allison Brooke. Since Ash was born she has dreamed of taking her to the castle. I wasn't sure if we would ever really take her and then one day this fall we decided we wanted to have no regrets. We planned our trip, paid for it, and then began to count down the days. When she became sick the first week of October I thought the dream had ended. With a broken heart I kind of gave up on the dream. As we peeked into our stockings Christmas morning I realized that Dave had not given it up. He had chosen a gift for Ash and myself that told me he believed all along that she would make it there. Our princess would go to the castle we had all dreamed of taking her to. I am now wearing a tiny silver tiara on a chain around my neck as a reminder that dreams really do come true.



For most of the trip Ashley Kate sat wide eyed in amazement of all that she saw and heard. The park was covered in beautiful holiday decorations and lights and you could hear Christmas carols playing along main street. It was the perfect time to take her there.



After lunch and her nap we took her on her favorite ride of the entire trip. The many adventure of Winnie the Pooh. She loved this ride and we loved watching her on it. Her eyes were busy scanning from side to side as we rode through the scenes of the story book. I think Dave's favorite part of this vacation was seeing Ash be a normal kid and ride the rides. A kid at Disney World riding rides, watching parades, and having photos taken with characters. It felt so good to have her out there during such a normal family activity.



This was the face we saw once we got off the ride. She was one happy girl traveling through the pages of that giant story book!

When it came down to actually meeting the characters face to face her smiles become a little less enthusiastic. It was one thing to marvel at them in the parades and shows from a safe distance, but sit her next to a giant mouse and ask her to smile was going a little too far. I took the pictures anyway because I wanted to have them to share with her one day, but I warn you she looks a little worried in most of them. She ended up meeting Mickey and Minnie(twice. Once early in the day and again at dinner that night in the Wilderness Lodge.), Goofy, and Scrooge McDuck. We didn't wait in any long lines with her for her safety and also because I knew that we had a Princess Storybook dinner scheduled for Monday evening where I would have the opportunity to have pictures made with them all. I'm kicking myself now because I had no idea we would no longer be there to make it to that dinner. So she has NO other character pictures and NO pictures with the princesses. I am really disappointed about that part of our trip.




She just didn't trust that mouse! He was so great with her though. He didn't push. Once he realized how unsure she was he stepped back and got down on her level so she could see he wasn't going to touch her. She has no idea how close Minnie actually was to her because she didn't take her eyes off of Mickey.




Their second meeting went a little better. By that evening she had adjusted to visiting with giant animals on a more personal basis. The photos of her with Goofy on our last day there with her are the best of all of them. She gave him "five" and has the cutest look on her face as she stares up at him.

Christmas Day at the Magic Kingdom was really a dream come true. The feeling was absolute magic. The lights on the castle were the one of the most beautiful sights I have ever seen. Ashley loved watching them change colors. It was so pretty.




After dinner Dave and Blake took Ash back to our room and Allison Brooke and I headed back to the Magic Kingdom. We just weren't ready for the day to end. How grateful I am for making that decision tonight as I sit 700 miles away from that beautiful little girl. I wouldn't trade those memories for anything. We did some window shopping along main street as the holiday music played. We rode the tea cups together and giggled out how sick I got once we were off of them. We laughed and ran through the streets from ride to ride like we were both little kids. We watched the show on the castle stage together and sang along. That night as the park was closing we made our way down main street and out of no where the snow began to fall. We walked hand in hand, smiles wide on our faces and our hearts, and she said to me, "Mommy, dreams still come true don't they." I nodded my head in agreement and soaked up the sights of all that surrounded us. It was a perfect end to a perfect day. I am so grateful. So very grateful.

I'm going to share just a little piece of the magic that our family was blessed to experience this Christmas holiday as we made our escape from real life and stepped into a fairytale. I was truly healing to each and every one of us as we enjoyed playing together for those few days. I will never forget our days spent together at the "castle" and all that made her little eyes sparkle. The funny thing is that when her eyes were sparkling you could see it spread to each of ours as we enjoyed seeing the "world" through her eyes.

We arrived on Christmas Eve and had the privilege of listening to the Christmas story being read by none other than Stephen Curtis Chapman at the candlelight processional at Epcot. It was an incredible experience that sent chills up and down my spine as I sat as still as I could and soaked in the beautiful words of His story and the music of the choirs. As I looked to my left and then to my right my eyes could no longer hold the tears that fell. On my left sat the tiniest, most beautiful pickle. To my right sat our gorgeous Allison Brooke, then their incredible big brother and finally the man that keeps us all going on the days that we think we can no longer do what we have been called to do. The gratitude that welled up in my soul during those moments cannot be described. It was an amazing way to spend Christmas Eve. All together. Finally.




After waking early and peeking into our stockings we spent Christmas Day at the Magic Kingdom for none other than our sweet Ashley. It is basically designed to make the eyes of little ones shine and it did not disappointment. There were a few things that I wanted to be sure and see her experience and then we concentrated on allowing the "3" big kids to do each and everything their hearts desired. The one and only thing I wanted to do was sit back and enjoy watching. My heart could not have been happier. The trip alone was more than I imagined could happen for her just a few weeks ago and so having her with us was the biggest gift I have ever received.



Our first stop for Ashley Kate was the Dumbo ride. This was only one of the two times we transferred her out of her chair the entire time we were there. I quickly learned that her chair was her safe place and it not only comforted her it also protected her tiny body. It was difficult at first for Blake and Allison to adjust to the handicap tag that was placed on her chair, to the wheel chair lifts on the bus, and to the over all looks that came our way as we managed pumps, tubes, masks, meds, etc., but it didn't take long for them to see that this is the way life just happens to be for her at this time and that it doesn't change who she is to us. They were so very protective of her and handled themselves beautifully with others curiosity. They are so grown up and so amazing.


Ashley Kate rode the Dumbo ride and then Cinderella's Carousel(which by the way she hated! I was so shocked, and then figured out she was remembering her riding therapy! She did not love the carousel horse and I have the pictures to prove it, but I don't want you to see her crying. This trip was supposed to be fun. Ha, ha.)




The parades were definitely one of her very favorite things and I just knew they would be. The music, the dancing, the bright colors were all very captivating to her. Dave and Blake did not love Mickey's Once Upon a Christmas Parade. We were on the verge of being trampled as those behind us continued to push and push as each person in the crowd attempted to get a better view. I think the boys could have done without this parade and this experience. Thankfully the girls were safely tucked on the very front row behind the rope and Ash was not in the mix of all the mess. I just giggled as I watched the guys get grumpier and grumpier as Ashley became happier and happier. After all the whole Magic Kingdom day was planned around her interests and we were going to enjoy it! As the crowd dispersed so did the grumpiness and all was right again.



The parade ended with a visit from none other than St. Nick. By this time in the afternoon Ashley Kate needed a little nap and the big kids needed a little lunch. We hopped into Pinocchio's Village to cool off and allow her to rest while we ate.


Christmas Day was nothing short of amazing. We had such a wonderful time. Ash loved being there and had so much to look at and enjoy. There is no way I can show you all that she saw and experienced, but trust me when I tell you her daddy and I will not soon forget watching her take it all in.

This was our first time actually taking her out into the real world. It was an experience all in itself. Even though there were many stares and question to face there were also many, many smiles, compliments, and joy in strangers eyes as they watched our tiny little one enjoy the magic on this day.

I can see that this post is going to have to be done in parts. I have been working on it for almost 2 hours now and I'm going to take a little break. As I have attempted to put the slide show together I have figured out it needs to take place in parts also. There are just too many pictures to place in one show. I'm still working on it.

We survived the night with little to no sleep but none the less have survived. This morning around 6am Ashley Kate's bowel locked up from the scope yesterday and began to cause her some pretty severe cramping. This is not surprising to us because it usually happens since she developed the hernia around her stoma. It seems as though a loop of bowel slips into the herniated area as the scope is being removed causing things to lock up until the bowel returns to its normal position. The surgeon came in and placed her fingers inside the holes of her stoma in an attempt to get things moving once again. We won't know for a couple of hours if it was successful or not, but she was able to cause 40cc of stool to flow out. Thats a good sign. If it doesn't work then she is scheduled for a procedure at 2pm to slip a catheter into her bowel and insert some type of something to hopefully open it back up. This procedure is new to us. We've never had it done to her and we have been in this position several, several times before. They are using dilottid(?) and Lortab to control her discomfort.

The news from the biopsy is that her distal bowel shows no signs of rejection. It looks good according to pathology. The proximal bowel doesn't look near as good, but still they can't rule that is is ongoing rejection. There are signs of healing. Its just very, very slow healing and they are considering stopping the use of Rapimune(one the new drugs they added in October for immunosuppresion) because it is hindering the recovery of the bowel. I asked what our plan was and they said they don't have one yet. They aren't sure what to do and the surgeon will be looking over the slides along with the pathologist this afternoon before determining what course to take. So at this time we don't know much of anything except that it appears the bowel is trying to recover from the last 3 months of rejection. That is good news. How long it will take is anyone's guess. There is truly no way to tell.

In other news, we will be allowed to move to the floor. My head is hurting so bad from the lack of sleep since Friday evening that I'm having a lot of trouble keeping things together. I'm trying so hard not to be grumpy and disagreeable, but honestly I have never had a headache this bad. Ever. I was in tears as I begged our surgeon to please move us up to the floor so we could get some rest. She nodded her head and said, "They can go to the floor". Thank you, thank you, thank you. I can't wait to get to take a nap this afternoon. Ashley Kate has currently checked out on her pain medications and has beat me to it. So in the next couple of hours we should be moving to "our" room upstairs. You have no idea what a blessing it will be to get there.

Ash is back on TPN and no feeds. Starting over again. We're getting pretty good at it.

It has been a very tough fall season for us in the whole bowel department, but it has also been a very blessed season for our family. God continues to bring blessings our way and two of the hugest that stare me in the face are the holidays. I realize they were short lived times in our home, but they were quality times and you can't put a price on that. We were given Thanksgiving and Christmas and Ash and I were blessed to spend half of our trip with Dave and the kids. As I look back to how those events unfolded there is no denying that God's hand was directly involved. We enjoyed our time together in Florida and I have so much to share. There are literally over a thousand pictures that were taken and although I am working through them to share it is proving to be really difficult because I just haven't had any sleep in so many days. I promise to share a couple and write about some of our trip sometime tonight once I get some rest. Just looking at the pictures has flooded my heart with memories that bring smiles and tears to my face. It was a wonderful, wonderful experience to share with our kids. I am so grateful to have had that opportunity.

Dave and the kids just called to let me know they must have taken the wrong bus. They are on their way to the airport and aren't too happy about it. That made me giggle. Dave said the side of the bus said it was a magical express but as they pulled away from the resort it didn't feel very magical to them. They had such a wonderful trip. I look forward to the day when Ash and I will join them back in our little house in Texas.

I'm going to slip down and grab some soup while Ash is sleeping and then I'm hoping to hear that we are moving. Thanks for checking on us today. God bless. Trish

After 3 years of living this way there comes a time when enough is enough. Honestly, we've just about had it. To those of you who don't want to read me blow off some long over due steam that is stemming from complete and utter exhaustion then turn off your computers now. The tone of this post won't be pretty.

So last night we were admitted to the PICU not the floor. Why? Somebody please tell me! She is stable. Beautiful vitals. No respiratory issues. Nothing different than what we have been coming to Omaha for over the last 3 months. Being placed in the PICU was a little over zealous at this time and now it seems as though we are stuck here. At least today we have been and tonight we will be spending our 3rd sleepless night in a row. PICU status means assessments EVERY 2 hours through the entire night. To check vitals, breath sounds, pupils, etc. etc. etc. That means coming into the room, turning on the lights, waking a sleeping baby, shining flash lights in their eyes(although I was asked if I wanted to refuse that portion and I said, "sure, right it down that I refuse"), putting cold stethoscopes on their chests, taking blood pressures, and temperatures. Ok, I get the importance of that in many, many, many situation, but at this time, thank God, this is just not necessary to care for Ashley Kate. She is probably the most stable PICU patient in this entire state. The reason for not moving us to the floor today? They wanted to make sure she didn't swell up and get an ilius after her biopsy. Even though our last 5 scopes over the last 3 months were done by the same doctors in this same hospital and we lived on the floor not the PICU. Explanation? There is none. Well, that was hours and hours ago and her bowel is making strong sounds, stooling, and she is not uncomfortable. Can we please go to the floor where she will be allowed to rest and heal? Nope. Not happening. OK, I'll do my best to deal with this situation, but honestly I'm extremely grumpy and having not one nurse tonight but two entering our room every two hours to wake us is not sitting too well with me tonight. Nothing personal, I like the nurses, but I don't like hospital life and this is exact situation is why.

Unless you have lived or are currently living in a hospital and have experienced this first hand then I'm pretty sure you are thinking, "What's her problem?" I warned you this post wasn't pretty. On top of all of this I'm not a parent who is fond of having strangers given the right to wake up our baby and place there hands all over my kid. Sorry, but its about the most frustrating loss of control I have ever experienced.

Ash and I are beyond tired. I'm not feeling very cooperative tonight. If I could lock the door on this room then I promise you I would. Its just where I'm at during this moment. I'm so sorry for venting but its better I do it here than open it up on some innocent person who is just here trying to do their job.

So my puffy, pig tail, pink clad, baby girl is sitting in the middle of a huge hospital bed with Frosty the Snowman playing on her little DVD player and Blue playing on the large TV. I know she's wondering what in the world I was thinking choosing this place over Disney World. Somebody please wake me up from this nightmare. I'm beginning to wonder about that myself. She remain fever free, no indications of being ill other than high stool output and low sodium and albumin levels.

How did I know to take her in to the hospital? All I can say is that I know her well. I can look in her eyes and now that somethings not right. I could tell her energy was dwindling and I needed a set of lab work to see what was going on. An ER was our only option. We also knew that once we "pulled the trigger" our vacation would be over and we would be on a flight to Omaha. What do you do? Even though nothing is being done to treat Ashley's rejection yet, and even though she would have been fine to finish the last two days of our trip once she was given some sodium and an albumin bolus, and even though we would have happily boarded a plane Tuesday afternoon to Omaha instead of Texas, the moment we entered that hospital we knew our decision making power would be taken away and we would be on that plane. That is why we are here. We knew all along, as did every one involved in her care, that she was still healing from ongoing rejection. It is no surprise to us or to them that we are back in Omaha. Last Saturday when being discharged it was left "open ended" as to whether or not she would need to return.

Why does she keep rejecting or why can't they get it under control? That seems to be the million dollar question. Basically medicine is a guessing game. You guess as to what you think will work and if it does then yeah for you, but when it doesn't they guess again and again and again and hopefully something that you try works. So far nothing has done the trick this fall and winter. She is in rejection. I don't have to read the pathology report to know that. Her scope showed some "ugly" areas of tissue and some "healing" areas of tissue. Exactly what the last 4 have shown us. What are we going to do? I haven't been let in on that piece of the puzzle just yet. Perhaps tomorrow? Anyway, I'm starting to feel a little more under control. I suppose I will attempt a shower tonight( each time I have tried today there has been a line) and then make myself a pallet on the floor of this room in the PICU(even though its officially against the rules. If you haven't noticed I just don't care about hospital policy these days) and try not to cry myself to sleep. I'm already missing Dave, missing my kids and missing our home. It hasn't even been 24 hours yet and who knows how long we'll be here this time. Hopefully tomorrow will take us back to the floor to the room we were "living" in a week ago(where I am told still smells like us. I love that!) and to a private bathroom, shower, the ability to sleep in pjs, lay down on a pull out couch, play on our rug, and make the best of our hospital life while being surrounded by friendly faces who truly want for Ash to get well and be on her way home. Thats my prayer tonight. Please get us to the floor where we can try and make some sort of "normal life" out of our crazy one again.

I promise a slide show is on the way. I'm just having a hard time putting it together. Thanks for listening to me rant. Tomorrow's got to be a better day. I hope.

The current plan is to biopsy Ashley Kate around 2:30 this afternoon. I'm not in complete agreement with this because I don't expect that we will get any different results than we have had in the last 6 scopes. I know she is rejecting her bowel. WE all know she is rejecting her bowel, but they just want to look at it again. So...I signed the consent even though my preference would be not put her through intubation and sedation and yet another biopsy. I would like to begin treatment today. Immediately, but that will not be the case. So we will prepare for biopsy and then begin waiting on pathology once again.

She is very, very dry(meaning her hydration) and her kidneys are not peeing. She has had no urine out in the last 14 hours. Her albumin is spilling through the walls of this bowel and so all the fluids we are pumping into her are third spacing(meaning they aren't holding inside the vessels but seeping into the tissues) and she is very, very puffy. All of this makes the whole intubation issue trickier and makes me nervous. Outside of all of this she actually looks pretty good. I mean she's puffy, but her color is beautiful and her hair is messy and her grin is oh so sweet. She doesn't feel that bad and for this I am so, so thankful. Once treatment begins I know things will become much harder on her so I'm appreciating the steadiness of her current condition. She remains fever free and nothing has come back positive in any of her blood or stool cultures yet.

Dave and the kids have a very full and exciting day planned. I spoke with them early this morning and they continue to be enjoying their vacation. My heart is blessed each time I think back to all the fun we had together this last few days. If you had searched the world over you would not have found a happier couple in all the earth. We truly enjoyed our children and our time together. I am working on a slide show of some of what Ash was able to see and experience. It may take me the rest of the day to sort it all out. There are things that she missed out on like her storybook princess dinner that was scheduled for tonight(so I have no pictures of her with any of them) and getting to wear her mickey ears(I had them all embroidered and they weren't going to be ready to pick up until Friday afternoon which was when the ambulance had to be called). I'll just have to fake those pictures once we get home or something, but the joy in her eyes of all that she did behold was amazing. Again, my heart is disappointed but yet still so grateful.

Thanks for still being here with us. I know its hard to understand all the ups and downs of transplant life( especially if your not living it), but it is life and I wouldn't trade a moment of hers. She is the sweetest thing we have ever held and one of the happiest little people you could ever meet. Your continued presence on this journey is a blessing to me and I love you guys so much. I'll let you know whats going on after her biopsy. Take care. Trish

...and tonight our princess rests not in the glow of the castle and all of its magic, but under the glow from the lines on the monitor once again. Its just not much fun coming back to reality, but the magic and memories we have made will be cherished for a lifetime.

We're here. The flight was a little longer than it usually is. I guess Florida is farther away from Nebraska than Texas. Anyway, it was a good trip. Ash and I are really exhausted. We've had little to no sleep(except for the naps we took on the flight) for the last couple of days. She is currently in PICU, but we are hoping for a quick transfer to the floor. Tonight or in the morning? She looks good and is laying in bed crying for her, "bu, bu, bu, bubba". More labs have been sent and cultures drawn. We'll just have to wait and see what the next few days will look like. If she is septic(which currently she doesn't present that way) then it could get really ugly. I'm praying its not the case.

Dave and the kids had an amazing day. We decided to keep things on schedule and just allow Ash and I to have our trip interrupted. I'm so glad we did this. Although they are concerned for Ashley Kate they managed to continue having a wonderful time and nothing made my heart happier than to listen to them ramble on and on about all they were experiencing. I love them so, so much and this is not what we had hoped would happen, but it is our reality. Its just the way life works for our family and we are rolling with it the best that we can. They have another day and 1/2 left in Florida and then will be arriving to our home in Texas sometime in the late evening hours on Tuesday. Seizing the opportunity to make more memories with the kids is exactly what Dave is doing and I wouldn't have it any other way. He promised to make some more magic with them and I know he will. I'm so thankful they have him when I'm forced to be away.

I'm just to tired to think much tonight. Omaha. Its not my favorite place, but it is familiar. Much more comforting than the halls of the hospital in Orlando where I knew no one and had no support. There were some amazing nurses and I'm thankful for the job they did, but knowing we have friends here in our hospital makes life more "doable" for me. Tomorrow we will start on the path to healing and recovery again. I'm hoping we can do a little better job of it this time and perhaps have the opportunity to make it home for a long while.

I'm going to settle in to the familiarity of my recliner and try to grab a few moments of sleep. Your prayers are greatly appreciated. Good night my friends.

...even if only for a day.

Ashley Kate and I spent the night in an Orlando Children's hospital. We are now awaiting our flight crews arrival to take us back to Omaha.

She looks...great. Her lab work...does not. It appears as though her gut continues to be in rejection and is spilling albumin and sodium by the bucket fulls. Her white count is elevated and the word "sepsis" is being thrown around pretty freely. She has no fever, is breathing well, shows no real signs of being ill. She's not exactly herself(a little puffy from all the fluids they are pumping and a tiny bit grumpy from needles and such), but all in all she looks to be pretty stable. The main issue is what Dave and I have suspected all along... ongoing rejection. Her bowel has yet to heal from the episode that began in early October.

So all though my eyes have shed many tears from frustration, disappointment and exhaustion, my heart is MORE than grateful to have had this few days here at the castle with our children. Dave and I would do it the exact same way a thousand time over to have made the memories we have this week. In our opinion, the Lord pulled a "fast one" on everyone and made this last week possible for us by giving Ashley Kate the needed numbers for our discharge last Saturday in time to take this trip together. They could find no reason to keep her in the hospital and sent us on vacation with their blessing. She is still not well, and we all know that.

Dave has kept the kids busy at the parks. They are sad, but still happy. They each wrote us a note and thats what caused my tired self to fall apart this afternoon. The words and pure appreciation that came from the hearts of my children as they shared with me that they had no regrets about bringing Ash to Disney touched my heart. They sent their love, their prayers, and their precious, precious appreciation for each day they spend with their baby sister. They were truly grateful to have had her with them the last few days and to allow her to experience a little bit of magic. I wish you could have seen her eyes light up moment after moment after moment. I will never forget this experience. There have been some tough moments and some touching moments this week. I sat next to my son on main street and cried with him as he watched Ash enjoy the lights and music of Spectro Magic. His heart is broken over her broken body and how I wish I could take the hurt away from each of them.

Sorry, the crew just arrived. I'll share more later once we get settled.

...we welcome you and wish you a very Merry Christmas. Take a peek inside, grab a jacket, its a little chilly here this morning. Thank you for coming. We love you and are thinking of you this holiday season. Enjoy.

At this early hour I found a moment to check on two of our very special, very sick transplant friends. They each received their transplant in Omaha just as Ashely Kate. Oh, how precious these little girls are to my heart. As I type this morning they are each very, very sick and will be spending Christmas in the PICU. One in Omaha, one in Shreveport desperately hoping not to have to return to Omaha. I love them both so much and my heart is breaking as I read the words of their mommy's hearts.

Once again I come to you my friends because I have "seen" you on your knees before our Father before and I have felt the impact of your prayers and I ask you to take a moment and pray for our friends. You have prayed for our friend Kylie before and now I ask you again. You have also prayed for our other precious friend before and I will not post her name because I have not spoken to her mommy to get permission to do so. Although I know she would covet your prayers this morning for her little girl. Please, please pray for them. My fear of Christmas in the hospital is their reality this year. Unfortunately it is always some one's reality as they sit next to the beds of their very sick children in PICU's all across this country.

I do not pretend to understand any of this. This life of ups and downs. Last night my heart was broken as I said to Dave, "It is unbelievable to me that all we wanted for our little girls was for them to live and in doing so we have had to allow them to be made so very weak." Their little lives are gifts. The most precious gifts we have ever held close to our hearts. As I love my sweet Ashley and would do anything to make her life sweet, my dear friends love their baby girls as much. They too would trade places in a heartbeat with their girls to give them a full, happy, pain free life.

I know you are busy with family, holiday plans, and travel. I sincerely ask if I might have a few of your moments. These three little girls mean the world to us, just as your precious children do to you. If you would lift them before His throne this holiday week I would forever be grateful to you. Hug your babies closer this Christmas. Sit back and absorb each smile, each giggle, each twinkle in their eyes. I promise you they are there. Be still long enough to find the gift you have been given and just praise our God that He has blessed you. We are all so blessed. I love you guys and I thank you in advance for your prayers. I know you will be on your knees. Trish

We're home. We traveled over two days breaking the trip up and stopping to visit with family, hug their necks, wish them Merry Christmas and allow them to peek at our princess. Dave and I enjoyed our drive with Ashley Kate yesterday. We were probably the happiest two people you've ever seen traveling down the highway. We smiled and smiled and smiled as we watched our baby girl play in the rear view mirror. She truly is a gift. A gift that can't be topped.

Today we headed out with our explorer packed to the top and full of children. All three of ours with us and all of our stuff traveling down the highway once again. We laughed, sang Christmas carols along with the radio, stopped about 30 times for this one or that one to use the bathroom, readjust, or change places, and enjoyed every single minute of the 6 hour drive into Texas and up our little street. We pulled into the drive about 7pm and jumped out of the car to plug in the lights, turn on the music, and light the candles. Then I slipped out for a little while to finish up some last minute items I didn't have a chance to complete before heading out to Omaha and Dave and the kids played board games and got our pickle all tucked into bed.

Once I got home I baked cookies for Blake and sat in the floor with Allie and dumped out our "vacation fund" so that we could get it ready to take to the bank tomorrow. Her eyes lit up as she counted pile after pile of change. We keep a huge water bottle in our closet and toss all of our change into it throughout the entire year. The money inside of it becomes our spending money for vacation and then we don't have to take a chunk out of our bank accounts while we are gone. The kids love seeing it get full through the year and every once in a while you will see them searching the house for lost change to add to it. It makes me laugh to see how excited they get over the discovery of a quarter behind the couch or a pile of dimes and nickels found in the dryer. Anyway, Al is looking forward to taking it to the bank tomorrow so she can cash it in for larger bills.

It feels so good to be here again. I have no idea how long it will last for us this time, but walking through that front door is the best feeling in the world. Burdens are dropped on the front porch and not picked back up until we find ourselves heading back out for another stay in Omaha. The house is so warm, so beautiful with the glow from the lights on the tree, and so yummy smelling. The older kids are too excited to sleep and have decided to have Al sleep on the extra mattress in Blake's room so they can visit and listen to Adventures in Odessey tonight. There is much cleaning, packing, and planning to do tomorrow, but for tonight I think I'm going to go kiss the foreheads of my children and whisper to them how very much I love them and then snuggle up next to Dave. I can't tell you how grateful I am to be home with Ashley Kate. Coming home never gets old. Each time we are allowed to come back it feels better, and better and better. I'm just so thankful to be here again. I pray it will last for a long while. She needs a break and so does her mom.

Thanks for praying for us this week. It was a long one. She's still got a long way to go, but she's gonna get there. Someday. For today, she is happy and for that I'm thankful. God bless guys. Goodnight. Trish

Here we go...out the door...in the SNOW!!! Yeah, us!

Dave and I are so excited!!!

We will see you guys(or talk to you guys) soon.

Have a great day. Trish

I'm so excited and if I'm totally honest very nervous that I can't lay there and pretend to sleep any longer. I can't believe we are leaving today. Days like today are always hard for me to wrap my mind around.

Ash has done SO well over the last 3 days. It really is amazing and has left us all stunned by the progress her little body has made. Yet, this morning she is stooling a little higher than she has the past 3 and so of course it has my heart racing. I wonder if this will ever get easy? I wonder if I'll ever stop paying such close attention to the amount of stool she puts out? I wonder if I will ever just relax and concentrate on being her mom?

From looking at our grafts and records the best we can figure out is that Ashley's rejection had settled itself down and was on the road to healing until she the weekend she caught that little cold. A runny nose and cough sent her back the opposite way and her body slipped right back into rejecting her bowel. Once her immune system attempted to ramp up to fight off the cold it sent her body into overdrive and her organs became at risk. What a scary way to live! The smallest of colds can put us right back into trouble? I wouldn't even believe it if it hadn't happened to us.

Our room quickly changed back into a regular old hospital room last night as we carried out her tree, rolled up her rug, and took down her ornaments. Its incredible what a little bit of something special can do in here. Dave looked around last night and shared with me how much he appreciated all the little things I do for her while we are here. I listened to his words and tears instantly appeared in my eyes. I'm thankful it makes a difference. Not only a difference for Ashley Kate as she spend so many days away from our home, but also a difference for Dave, Blake, and Allie. I think it makes it a little easier on us all during these times to bring any amount of "something special" to the situation. So I sit this morning with lots and lots of clutter around my feet. Duffel bags and suit cases, stroller and car seat. Everything is pulled out into the center of the room just waiting on that rental car to pull up so we can pack our "lives" into the back of it and head home to the place we are supposed to be living them.

As excited as I am to be leaving, especially in time for Christmas, my stomach still churns with nerves. Each and every day is a new story with this transplanted organ. We have three, but its just the one(Praise God its only one) that gives us such trouble. Learning to live in the moment, taking nothing in her life for granted, and celebrating the simple things has been the biggest lesson of my life. How grateful I am for that tiny donor who gave up so much so that our Ashley Kate could live this life. Without that gift she would have been gone and our hearts would be left with such emptiness. I never want to know what that would be like. I pray God spares us that pain.

Well, its time to put this day in motion and take the first steps towards our magical holiday. How sweet it is knowing Dave and I will be traveling the next 9 hours with our tiniest in tow and on our way to retrieve our two oldest. By this evening we should be a group of 5 again, and I don't mind sharing with you that 5 is my favorite number. Its SO much more than 4.

Thank you from the bottom of our hearts for your prayers. We love you guys and wish the merriest of Christmas'. Make them special. No matter what is or isn't under that tree. Take from me, its the people around it and the time you are given with them that makes the best gifts. Talk to you soon. Trish

This morning the surgeon looked at us and said, "Lets top her off," and the he began to kick his foot. I couldn't help but smile at him because although he didn't want to commit to saying the words he was "giving us the boot". I was grinning ear to ear and had to ask, "Are you serious?"

He followed by saying, "We've done everything we can do at this point and she is doing as well as she can. You might as well go on your trip and we'll just keep a close eye on her."

Needless to say we are rejoicing!

Originally he wanted us to stick around until Monday and then after labs he would give us the go ahead to leave Omaha, but Dave explained the logistics of what would work much better for us and he said, "Well, lets put it to a vote." At that time the nurse practitioner assured him that she felt we should go and that we would have her on a plane to return if she was in trouble.

"O.k., go ahead and make your trip to Florida and we'll just leave it open ended. If she's still doing well then go home. If she's in trouble or things begin to change then bring her back. I just didn't want to upset the "transplant gods". Just for the record, we know he was joking , but Dave and I don't believe in the "transplant gods". We prefer to believe it was our God that made this happen for our family and we are so very grateful.

Ash is currently receiving another blood transfusion. For some reason she is losing blood and we can't seem to figure out why. They ran many, many tests looking for a reason but came up empty handed. We are just going to keep a close eye on it and keep filling her up for now. Our best guess is that she is probably losing it through her ostomy sight.

So the plan is to stay one more day, give her the blood, and be discharged after labs tomorrow morning. Dave and I will be traveling with Ash to Oklahoma in a rental car and then will pick up our car and our children and make the rest of the trip home on Sunday. That will then give me a day to do laundry, pack, and then we will be on our way to Dallas Tuesday evening(which happens to be Dave's 35th birthday) and we will fly out Wednesday morning.

I'm so excited and so grateful. I can't express to you how thankful our hearts our at this time. Thank you so much for your prayers. We love you guys. Trish

This post is basically a question for any blog writers out there who may be able to help me. Last night while I went to my blogger dashboard to read the comments I all of a sudden had the last 2111 comments disappear. The dashboard is now showing that since then I have another 18 new comments that have been left, but it only allows me to see the first 5000 comments(it leaves off somewhere in October). I'm not sure where 2ooo and something comments went to? It is still showing the number of new comments as they are left, it just seems that I can't find them and have no way of reading them. Can anybody help me find them? Obviously I won't be able to read your response(if you have one) in my comments so please e-mail me at www.ashleysorgans@yahoo.com.

Thanks for your help. I haven't heard from Dave yet to see if he actually has a flight this morning or not.

Dave will be attempting to sleep on the floor in the airport tonight in Dallas. He flew in from Longview and doesn't have a car and all of the airport hotels are full because of the many stranded passengers.

Currently his flight has been rescheduled for 6:30 tomorrow morning. Praying it will make and he will arrive here at the hospital around 9am.

Your prayers for his safe travel are so appreciated. Thank you.

Ash has made it to 75cc an hour on her feeds. Only 5 more to go until she meets the goal set by the surgeon this week. Her stool output has been good as well. She has not had any fevers for the last couple of days and if she can hold her own for the weekend we may get our discharge. I'm trying not to be too hopeful for fear of disappointment, but I am encouraged tonight by her progress. She looks really, really good and has been tucked in for the night. I'm off to watch a little Pride and Prejudice until I fall asleep.

Hope your day was wonderfully blessed. Trish

...Delayed and will announce at 11pm if it is cancelled.

Looks like Dave could be sleeping on the floor at DFW airport tonight.

We're really sad. Ash and I had been looking forward to seeing him all day. Perhaps the weather will lighten and he will get to come anyway? Its not forcasted to get any better, but we sure are hoping for it too.

Ash and I busied ourselves working on a surprise for her daddy today. She was happy to help make snowflakes, play in all of the papers while I laid out a new bulletin board(from our left over scrapbook papers! Yeah us!) and draw her first masterpiece for his Christmas present.


Here is how the bulletin board turned out. It matches her tree and ornaments.


This is her masterpiece. I think I'll frame it for his personal office at the clinic. I'm so excited to see his reaction. We have been trying and trying to get her to "color" for three years and she finally showed an interest. She made this all by herself this afternoon and I absolutely LOVE it!

The snow storm is moving in and the nurses are going home early because the roads are getting slick. Dave is currently in Dallas on a 4 hour lay over and I'm really hoping for safe travels for him. I'm not sure if his flight to Omaha will be canceled or not. I hope not. We are really looking forward to his visit this weekend.

I have hesitated to post this information because I really want to not be here, but so many have asked that I decided to go ahead and let you know where we are.

This morning Ash and I sit in our room in Nebraska and do our very best to keep our spirits high. Each day I find the calendar slipping closer and closer to Christmas day and the date reminds me that we are not home. We are trying so very hard to be content in this situation. We sit here and listen to carols play all through the day. We drink in the delicious smell of Yankee Candles Christmas Cookie plug in and pretend we are home. We stare at the lights on our little tree(I am so, so thankful for this little piece of magic) and allow the glow to light our room each night. We snuggle in our recliner or lay on our rug underneath the colorful ornaments and watch them sparkle as they dangle above us dropping glitter into our hair. If you imagine hard enough its kind of like sparkly snowflakes falling to the ground. Our skin, our hair, our clothes, our rug, our everything is sparkly from the glitter and it makes me giggle. We will probably be sparkling well into the spring because getting it to wash out of hair has proven to be difficult. Still I feel an emptiness inside of me. Giving this room our best efforts has not proven to take away the loneliness we feel without Blake, Al, and Dave.

Christmas is more than just the day. At least it is to me. Its the whole season. The weeks leading up to that day. Its the experience. The feelings. The smells. The sights. The music. Its having days at home with no where to go and hours to sit together working puzzles, or baking sugar cookies, and wrapping gifts. Its watching Allie search and search for that special something to give to Ashley Kate. Its snuggling under the "longhorn" blanket in Blake's special spot and just waiting for him to come bounding into the room and squeezing in behind me as we settle in to watch a holiday movie. Its having the "magic" inside of our home ready and waiting for Dave as he comes in from a long day at the office. Seeing him settle on the couch in his sweatshirt and flannel pants with a look of pure contentment on his face because he is home and all the people he loves are there.

So this morning my heart is struggling to hold on to the hope that we will be discharged in time to make memories with our children this holiday season. We are inching closer and closer, but are not yet there. Not much was said in rounds this morning. I believe everyone is pulling for us, but still not much can be done if Ash isn't well enough be discharged. I don't believe she will be out of rejection by Monday morning, these things take time, but I do believe with everything in me that we should go on this trip. No regrets. That's our goal. When it comes to raising our children Dave and I have made up our minds to not miss opportunities to make their childhoods special. When they are grown I want to look at them as young people and know that I have no regrets. I want to know that I did my very best to be the very best mom to them I could possible be. Concerning Ashley Kate and her fragile health this conviction is even stronger. She could so easily slip away from us at any time and I refuse to wish I had this or wish I had that with her. I need to know that she was given opportunity to live, to experience, and to enjoy her life.

Another winter storm is on its way to Omaha. Dave is scheduled to arrive around midnight to spend the weekend with us. In a perfect world, we would be granted a discharge on Sunday morning and that would allow us to get a rental car and drive to Oklahoma together to retrieve our car that was abandoned there and pick up the older children. Then I would have the opportunity to pack for our trip on Monday and get ready to travel to Dallas to catch our flight on Tuesday. This would be ideal, but who knows if it will happen or not. They have been talking about a possible discharge on Monday if her goals are met and she is doing well. We would be allowed to take her on the holiday trip and then she and I may have to return to Omaha for a while. No one really knows what will happen over the weekend so they are afraid to commit one way or the other. Currently she still looks amazing and her gut is still in rejection.

I hope you are enjoying the last week of holiday hustle and bustle. I love every single thing about this season and I wish we weren't so isolated from all that is happening on the outside of these walls. Oh, how I wish we were out there in the middle of it all. Enjoy it. It ends way too soon. Have a great day. Trish

Updated: The visitor has come and gone. Be sure and scroll down to check out the new pic!

Here she is enjoying her Christmas decorations. She just keeps looking up. I'm trying to learn this lesson from her this morning.

We have bad news, good news, and a possibility(although it is a stretch) of great news.

The bad news. She is in ongoing rejection.

The good news. She looks AMAZING and the whole team agrees that they have never seen her look so good.

The great news. If she can accomplish the VERY high and almost unrealistic goals of this surgeon then he said he is supportive of us being able to carry out our holiday plans. "It is dependant on her. How well is she going to do? If she doesn't do as well as I'd like to see her do then we will have to continue more aggressive treatments, and that would require her to stay here. Sorry."

So, I'm hopeful but still on the verge of falling apart. He didn't say no, but he didn't say go. Like I said I'm trying to follow Ash's example this morning and just keep looking up. I can't take my eyes off of the ONE, the only ONE who can make this happen for her and for us. Still I'm shaking and the tears are stinging my eyes. I so desperately want to take this trip with our children and all be together for Christmas. I really, really do.

Currently the plan is to take it slow in the treatment department, but push, push, push her gut to adapt to full feeds by Monday. I'm not sure I agree with either of these things, but its not me that gets to decide. We are not going to treat her rejection with anything other than running HIGH immunosupressant levels. He is hoping to cool off the ongoing rejection in this manner. At the same time he said she HAD to be on full feeds and maintaining normal stool ranges to be allowed to go. I am so nervous about not being aggressive against this rejection. I'm thankful for Ash's sake at the present time because treatment is miserable, but frightened it may not do the trick. I am doubtful that she can advance 20more ccs an hour so quickly. I have never seen it happen in this child. Especially while she is in ongoing rejection. Slow and steady is how we've come this far and I am afraid if we push her the output is going to jump and then the surgeon will say, "no go".

So there are many, many things to pray specifically over. First and foremost the rejection. We need this bowel to stop rejecting so that it can heal and she can get well. Secondly, the treatment or lack of. It has to work or we will be spending Christmas here alone and in ongoing treatment which will make for the most miserable holiday for our sweet Ashley. Thirdly, feed advancement and stool output. They want to get her to 80ccs by Friday and then see her maintain it till Monday. This is going to be the toughest area of all for Ash. Lastly, our spirits. They are encouraged at this time, but still shakey. I just don't know if its going to happen.

...for our princess.

Ash and I spent the day in decorating mode. It was so healing to my heart to have the opportunity to create some sort of Christmas magic for her. She actually slept while I was hanging the ornaments that you see in this first picture. I attached them to the ceiling right above her rug so that while she plays they hang above her. I tried to capture a picture of her as she stared up at them this evening, but was unsuccessful. It was so sweet to see her enjoy them.



This is how her tree turned out. I used the ribbon that our lead nurse brought to us this morning and the pack of scrapbook paper I found in my suitcase. Poof! This is what happened when we mixed the two together. It is actually very, very sweet, and I think we love it.



The paper pack had printed words on some of the papers so I cut them down and hung them on strings to make ornaments. This is one of my favorites because it is one of Ashley Kate's favorite things to do.



I cut out the letters and glued them together to fashion ornaments. Noel, Jesus, Joy. Things like that. Only the Father knew that I would be needing that scrapbook pack that was left inside that pocket by accident. I think thats what I love most about this tree. The day I bought these supplies I had no idea I would be using them to make Christmas magic for Ash. He did. Just another one of those provisions He has given to us. The colors aren't really Christmas like but they are definitely "Ashley" like.




This is a close up of one of the ornaments and ribbon that hang from our ceiling. The minute the nurse walked in with them I knew exactly what I wanted to do with them. It is truly magical to lay underneath them and watch them twinkle. I am so, so grateful.




What a blessing to have such sweet, sweet nurses. They knew our hearts were broken and that we were missing our Christmas tree and so they went out of their way to bring us a tree and supplies. I am truly touched by their kindness.

So tonight Ash and I sit here in our room on the 6th floor in Omaha, Nebraska. Once again it is Christmas time and we have no idea if we will be allowed to go home to celebrate or not. I read through my journal from the last two Decembers and the tears flowed. God has really done some amazing things and I decided to leave room for Him to work again. Its not impossible for Him to make this happen for us.

We are happy and in our little room with its Christmas decorations tonight. It smells delicious(thanks to one of our nurses who picked up our favorite scent for us to enjoy). It is quiet and peaceful as the lights glow on our tree and the music plays. I am going to rock our baby pickle to sleep and face tomorrow when it comes. For tonight we are enjoying the fruits of our labor.

Thank you for your prayers for Ash and for our family. I can feel them and I love you for caring so very much about us. Have a good night. Trish

...all that matters is if the gut works. That's the goal. A functional gut, and it looks to me like its working pretty darn good. She's more than 3/4 of the way there. We will just have to wait and see what pathology tells us. If there is acute rejection then we treat it."

That's the word from rounds this morning. What does it mean? I'm not sure except that we are still waiting on pathology to develop our plan. Acute rejection has to be treated. Chronic rejection basically tell us the gut doesn't work. It can't tolerate any feedings and the patient goes back to relying on TPN for their nutrition. Then the side effects(choleostasis of the liver, or liver failure) starts to set in and the patient must be re-listed for transplant. That is the explanation I was given this morning. So does she have chronic or acute? Well, it seems to us by looking over at her feeding pump and seeing the number on 60ccs of feeds with the goal being 80ccs that the gut is working to some extent. Not perfectly according to the amount of output she is having in her ostomy, but clearly working. I would think that is encouraging.

Still the biopsy results will send us down the path we are going to have to travel and where that path will be traveled at this time looks to be Omaha, Nebraska unless we can all sit down and come to some type of compromise.

I'm going to concentrate my energy on being thankful for a semi-functioning gut because before transplant we didn't even have that. Ash is sleeping peacefully at this time. She's had an uncomfortable morning with lots and lots of cramping, but we are hoping it was all stirred up from the scope. I'm going to run down stairs while she's resting and grab a cup of soup for lunch. The snow is coming down outside our windows and the Christmas carols are playing. I'm working on some "decorations" for her room from some old scrap booking papers I found left inside the front pocket of my suitcase. What a treasure! One of the nurses brought in some ribbon and some brightly colored glass ornaments that she wasn't using this year and another nurse is bringing us a Christmas tree. I'm going to see what kind of magic I can make for her while she sleeps.

Hope your day is blessed with magical holiday moments. Trish

If I close my eyes tight enough and be still long enough then my mind drifts to home and I imagine that we are there. I can smell the Yankee candle burning on the mantle. I can see the lights glowing on the tree in the family room. I can picture Blake in his "spot" across the room from me on the couch cuddled under his Longhorn blanket. I can hear Ashley Kate giggle along with Allie as they share secrets together as she is tucked into her crib by her big sister. I can feel the strength of Dave's hands as he hugs me tight. Tonight I allow myself to imagine and I am truly grateful for the last 4 weeks we were given in our home. It was during those weeks that I intentionally burned these memories so as not to ever forget how good it truly felt to be inside of those walls.

Tonight our home is quiet as Dave climbs into our bed. There was no pickle to greet him as he came home from the office. There were no children to pray with before going to bed. There was no me to visit with as we drifted off to sleep. As much as my heart is confused and hurting tonight for the place that I find myself in it hurts even more for the empty home that Dave has come home to. It is so very different than it was a few short days ago. How lonely it must be for him.

"I just don't get it." That was his reply as I selfishly interrupted his work day just so I could hear his "rainbows and daisies" encouragement. There was none offered. He was just as stunned as I was as I stood and watched that camera shoot the pictures of her damaged bowel on the screen. Stunned silence. I had nothing to say.

I totally agree. I just don't get it either. I really and truly don't. I never will. Its just to much to comprehend.

I'm willing us to fall asleep. My little pickle is giggly and wide awake as she plays in this crib and babbles, "b,b,b,b,ba, b,b,b,b,ba" over and over again. My head is aching and my eyes are weepy. Crying doesn't help. It just makes my head hurt even more. I need to sleep. Sleep long enough to forget where we are and what it seems we may be facing tomorrow. Sleep so deep that I forget our silly baby is sick and imagine the twinkle in her eyes as the lights from the castle magically appear before her. I kiss her a thousand times and just breathe her in. Her joy, her laughter, her innocence. She is unaware that anything is wrong. Just silly and sweet. So, so precious. I love this child. I love her so very much and as crazy as it sounds I would be willing to do this all a thousand times over as long as it allowed us to keep her in our lives. All the hurt and the confusion and the frustration disappears when I look at her face and see the spirit He gave to her. The beauty of who she is overwhelms me and I love her so much that I would do anything to keep her from all of this.

I want so badly to allow her to experience life. To see and do and touch and feel the world around her. To take her outside the walls of hospital rooms and give her the life she deserves to have. A carefree childhood. I know that I should have outgrown this imagination stuff years ago, but even at 34 I hear myself saying, "Lets pretend...." Even if its just for tonight. Lets pretend she is healthy and whole and on her way to meet the mouse and see the lights of the magic kingdom. Thats what I'm imagining.

" This is ugly in here."

"A very unhealthy bowel."

"I see very little anything. Not much mucosa. A couple of places where villi are coming back, but just a few."

"I think its a case of chronic rejection."

"We'll just have to wait on pathology."


I realize this is not the final determination and that won't come until tomorrow at the earliest, but I do believe this doctor knows what he's talking about. He's been doing these scopes for the past 17years and has done thousands of them.

I asked why? how? She looks as though she is getting better. We treated her for rejection twice. She is on more anti-rejection drugs than ever. What happened. His answer? "Sometimes the cells just go the other way and we don't know why."


I left feeling defeated, broken, hurt, disappointed, stunned, angry, protective, and defiant. I know its not right, but its honest. This is what our transplant journey has reduced to me. Oh, how I wish those were not the feelings I had inside of me, but they are there and today I don't have what it takes to even begin to make them go away.

I'm giving in and searching for some sign of Christmas for my baby. I had refused to actually give up until now and put up a tree here in Omaha because I still had hope we would be leaving soon. I guess I'll try and figure it out now. It may be all homemade, but it will be something. Anything is better than nothing.

I really am. I'm trying so very hard to be optimistic. To not let this discourage me. To believe that we will indeed take her on her Christmas trip to the castle. I am trying my best to forget that it is Christmas time and that we are not home. I am trying.

Ash will have her biopsy done late this afternoon. Based on those results we will sort of know what direction we are heading. Rounds held very little information this morning. Everything depends on what pathology sees on those slides. It should be back in 24 hours, but all 3 of her last scopes took 4 days to return information. I am hoping this won't be the case today. They upped her goal on feedings from 65 to 75-80. That in itself almost made me cry. We were so close to getting her off of TPN and now it seems so far away. Dave and I had hoped that she would not be on TPN while we were in Florida. Not for any particular reason, just that we feel it would be easier to maneuver her around without the additional tubing coming off of her pic line. I'm sure if we get to go with them, that the last thing I'm gonna allow to stress me out is TPN. I'll be so grateful to have her there on this trip that was planned for her that I won't care what we have to lug around with us.

9 days. That's all we have left. Our plane leaves at 11am on Christmas Eve out of Dallas. Dave, Blake, and Allison will be on it with or without us. I'm SO hoping to be on it with them! This whole vacation was planned at this time of year because it is the only time of year that Dave can afford to be out of the office. We only get to be opened for 2 days between Christmas Eve and New Years so that means we only miss those 2 days. Otherwise vacation planning is impossible because he is needed to care for our patients and shutting down the office for a week is not only irresponsible, but also too expensive. We chose the "castle" because of all of the holiday lights and music. Ash won't be able to do much while we are there, but she LOVES lights and music so we knew this would appeal to her and be very, very special. We desperately need this time away with the kids. Time just to laugh, play, and enjoy life away from deadlines, pressures, stresses, hospitals, and doctors.

Ash looks amazing today. She woke feeling good for the first time in a month! She is smiley and sweet. Signing away and giggling all the while. She didn't even shed a tear when the surgeon spoke to her. That is definitely a first. All of the nursing staff is pulling for us. No one wants us to be here at Christmas time. They all know how very much we love this time of year and everyone wants her to make that special trip. I hope and pray we are getting out of here soon.

I'll let you know something as soon as I do. For now its back to the phones to continue to preparing for the trip. It has to be done even if she and I aren't going the other kids are. Its exciting and sad all at the same time. Hope your day is blessed. Ash and I are just going to hang out here in our room and wait on the snow to start falling. God bless. Trish

Our first day back in Nebraska is down and to be honest absolutely nothing happened. One of the things we shared with our surgeons last week was the desire to not return and just sit through the weekend accomplishing nothing. A day sitting here is a day away from our children and our home. They agreed on the phone, but this is exactly what took place today. They kept Ashley NPO until 3pm when I finally said, "If were not scoping her today then why are we starving her?" At that time the nurse tracked them down and it was decided that a scope really was not going to happen and we gave her as much water to drink as she wanted. Although frustrating she survived and so have we.

On rounds the surgeon(remember our new favorite?) came in and said, "What are you doing here? I thought we decided you would go to Shreveport?" We laughed and said, "We got stuck in the ER and here we are."

"Well, since your here we might as well run all the tests and try to figure out whats going on, but as far as I'm concerned she looks great." Too bad he's off service tomorrow morning and doesn't get to decide when we leave for home. He did add that he would let the team know tomorrow morning that he feels she is "still sick, but not "Omaha" sick. " He agreed with us that we could manage this back home in Texas. Again, frustrating but we are surviving.

They are going to do another biopsy tomorrow. We have sent more cultures. Stool and blood. We will be testing her for EBV to rule out PTLD(the same type of cancer she had a year ago February) obviously hearing those words caused our hearts to skip a beat. The surgeon followed up with saying, "I'm not thinking this is what is going on, but we need to rule it out." They are also running full viral panels looking for anything to explain her fevers, occasional vomiting, and discomfort. Her stool output is improving and she is at a rate of 60 on her feedings. Basically her TPN should be cancelled tomorrow during rounds. She is still requiring IV fluid replacements, but hopefully not for too much longer. Her cold lingers, but her chest x-ray from yesterday was clear.

Ash continues to struggle most in the mornings. The doctors have no idea why. This morning was no different. The first 2-3 hours of the day she spent not feeling well and vomiting, but by 12pm she was a whole different kid. She played and played with her daddy and had a great afternoon followed by a very long nap. Her nurses can't beleive she is back and doing so well. They said they were all expecting a "train wreck" as were the physicians. That is just not the case and we have been trying to explain that to them over the phone. She is not well, not back to her "pre-rejection" status, but she is doing ok. Healing is proving to be slow, but still Dave and I are confident that she is getting there.

Why are we here? Well, thats a good question. Yesterday morning Ashley Kate woke with a fever(for about the eighth day in a row), began to breathe irregular, and was vomiting. We were in Oklahoma. Half way between our home and Omaha. My main concern was her O2 status. I needed to know that she was getting enough oxygen and the only way to know that was to place a monitor on her. In addition to that, since she does have a cold I wanted to see a chest x-ray to make sure there was no fluid, no plural effusions, and no pnuemonia brewing causing her shortness of breath. My only option was to find a local ER and so that is what I did. Knowing that if she was fine we would more than likely be "stuck" I still had to know this information in order to care for her properly. The monitor showed her sats to be at 97%, her heart rate elevated from the fever, but still ok(it came down nicely after an hour or two). Her chest x-ray was clear, but the ER doc would not release us except to a hospital. I called our transplant coordinator and asked her what they would like for us to do and was told I had to get on a plane and get her to Omaha. Even though all of her vitals were fine, her sats were fine, her heart rate was fine. I had no choice. The surgeon confirmed my decision this morning and said he would have done the same thing. With Ashley's poor respiratory history I had to know the answers to those questions.

In a nut shell, that is what happened and that is why we are sitting in Omaha tonight. Perhaps they will find something and perhaps we could make it home in time for Christmas? I really don't know. If it were up to today's surgeon he said we would be on our way home by Wednesday, but unfortunately he will not be on service this week and so we are basically sitting here until the one on service decides to let us go.

Dave is headed out at 4 tomorrow morning. Blake and Al are still in Oklahoma and will remain there until the 23rd unless Ash and I are released. Ashley Kate and I are making the best out of a tough situation. Even without the slightest hint that it is indeed Christmas. We will have the pleasure of watching the snow fall outside our window tomorrow morning. Were going to be thankful for that. Its supposed to negative 5 at 6a.m. That is so wrong. Things like that don't happen in Texas!

So, we're sad to be here in Nebraska, but happy for the stable condition Ash is in at this time. Sad to be away from our home, but thankful for the blessing of good friends who have given us reason to laugh and smile as we visited today. Sad to be missing Blake and Al, but thankful they are happy with my sisters and enjoying their visit. Sad that Dave is having to leave, but so very thankful he has the ability to work and provide for unexpected trips like this one. Sad to be missing out on the joy and peace found inside of our own home, but thankful that it will be there to welcome us home once again once we arrive. Sad that our sweet baby girl continues to struggle, but thankful for her life and the desire she has to live it to the fullest. Her smiles today blessed our hurting hearts and I am so very grateful she is who He created her to be. There is not another like her and I love her so, so much.

Thank you for your kindness towards us. Your encouraging words and reminders that you are praying for our family continue to bless us. What a gift each of you are to us. May God bless you and your families tonight and throughout this season. Trish

We are here, are settled, and now struggle to find sleep. At least I do. Dave is exhausted and has already dozed off. I think it took him a whole 30 seconds. Ash is settling now that we have finished with all the chaos of admission, lab work, and TPN and is ready to doze off any minute now. I wish my eyes would close, my mind would slow down and my heart would stop aching. Instead I lay here in the dark and think to myself how blessed I am to be her mommy and how much I wish I could make life better for her.

The older kids are at my sisters and that brings peace to my heart. Knowing that they will be surrounded by their cousins and taken care of by my sisters allows me not to stress and worry about their day to day goings on(the reason why we drove all night to Oklahoma just in case we were called to Omaha). They still had a week of school before Christmas break begins, but I had to come up with something to make this easier on their hearts and this is what I came up with. Thankfully I believe it worked. Saying good bye was very difficult, especially knowing that Christmas is so close and the likely hood of us being on our way to the castle with them is not very high. My kids are amazing. They truly are. They continue to bless with me with their selfless attitude when it comes to caring for their baby sister. They want us to whatever it takes to make sure she is ok. They really and truly do. Blake and I had a long talk over the phone this afternoon while I sat in the ER with Ash. He called to tell me to take her to Omaha. He assured me that he and Al would be fine and that they wanted us to go so that her doctors could make her well. He shared that he was willing to miss her for a little while in order for her to get well and come home for a long while. Allie's heart was broken over the disney trip we planned for Ashley Kate. She has wanted to take her there since she was born. I promised her that I would do my best to make sure that she gets to take Ash someday. I know that she will have a wonderful time with Dave and Blake. I know they will make it special for Al, but there was just something magical about taking the girls this time. It was kind of like fulfilling a dream for Allie. Disney is the best place on earth in her mind and its something she wanted for Ash to experience. Especially at Christmas. Lots of tears have been shed over this lately.

I suppose tomorrow I will do my best to unpack and make a list of things we will be needing. I can't wait to pick up our air freshener. It really changes the whole place when the room smells nice. My heart is very sad about Christmas. The room feels so empty and cold compared to our home. I would have been content to sit and stare at the lights on our tree forever as Ashley Kate played on the floor and Blake and Al worked on the Christmas puzzle. What I wouldn't give to be back there with the five of us hanging out together tonight. For some reason Christmas at home just doesn't seem to be in the plan for us. Accepting that is more than difficult.

Ash remains the same. Not really any changes. Low fevers are about the only thing she can't seem to shake. The vomiting has stopped and her stool has slowed some. She is stable and for that I am truly thankful. We have spent many, many holidays with her where I couldn't say that. So overall, my heart is broken and thankful. Broken over the disappointment, but yet still grateful for this little girl who I am allowed to love.

Goodnight guys, Trish

Its always a bumpy ride in the life of transplant.

We are waiting on the flight crew to arrive in OKC(yes we are now in Oklahoma, long story will share later) and Ash and I are in the ER. It was decided that driving the additional 8 more hours would not be good for her, so we stopped of to visit an ER because she began vomiting and spiked a fever. She was also having trouble breathing. So, here we go again. I'm doing my best to hang on and keep it all together.

On top of the fear and worry that always accompany these times in Ash's life, I am struggling with a very heavy blanket of sadness. My heart is broken over the holiday. No tree, no lights, no gifts, no family, no magical trip for Ashley Kate. It will be the two of us for Christmas and the disappointment that resides within me is almost smothering. I am still trying not to believe this happenig.

In a few hours we will say good bye to the kids and leave them here with family.

There are still no answers as to why Ash is struggling. I hope to share more once we arrive sometime tonight. We will be stuck in the PICU because there are no rooms available anywhere else. Thanks for checking on us. Trish

We are not in Omaha yet, we have decided to wait until tomorrow when the transplant team should receive the pathology slides from Shreveport. After they look at the slides we will discuss a plan. So tonight we hang out, live life at home and wait to see what tomorrow will bring. Thank you so much for your prayers.

Goodnight,

DAVE

I'm waiting on the surgeon's call. The biospies are not good, and we are leaving for Omaha. Ashley is sleeping peacefully in her crib and I'm crying my eyes out as my heart breaks for the millionth time. Dave will be home for lunch at 12 and I will be running around town trying to get things in order as we wait for the plan to unfold for us today. Our weekend plans have been cancelled and now I'll try to find the courage to break Blake and Al' hearts.

I'm just so tired of feeling broken and disappointed.

My mind runs a million miles a minute. Thoughts of what is happening, could be happening, might not be happening, etc., etc., come flooding through what has proven over the years to not be that big of a space and it all leaves me with a headache. A stomach ache. A heart ache.

For today I am trying to slow them all down. Just stop them. Not think. Just quit letting it flood over me.

Whatever will be will be and I have no power of changing the situation. No matter which direction it takes. God is God and I can't change His mind. He will do what is best, even if I don't agree that it is best. I trust that He is working it all for the good. Some way, some how. I can't pretend that its easy for me, because its just not. It is so hard to sit and wait and see what He will do. I want Him to just let me in on the plan, at least I think I do. In His wisdom I am confident that there are parts to His plan that I simply do not need to know. He doesn't need to include me as much as I think I want for Him to. So again, today I am trying my best to not think of it all.

This weekend the kids and I will be spending some time with family. Soaking up those memory making moments as fast as we can and then storing them inside of our hearts for those times when we need to pull them out to get us through. I imagine our blog will be silent for a couple of days as we wait to see what direction our lives will take, but you never know. I often think I'll just be silent and then the only thing that allows me to get through a moment is to dump it all out on these "pages". So I say we will be silent here at Ashely's story, but then again I don't really know if we will or not. My plan is to enjoy my children over the next 3 and 1/2 days. Not to allow any fear or worry or wonderings to pull me away from the moments we have together.

Ash continues to be about the same. Things aren't getting worse and not getting better either. Occasional low grade fevers, vomiting, stooling out, runny nose and cough. All of that sounds a little like a cold or flu virus to me, but then you have to throw in that whole transplanted bowel thing we like to talk about and it changes the equation. Her output is running in the 65-73 per kilo range and even though its not ideal its still not that 100-150 range. Dave is still holding out for the cold and I am trying to convince myself that he is right. In the back of our minds though we are still very much aware that her bowel is weak and remains unhealed and has a long way to go. Could she be in rejection? Yes, she could and I think that is what the majority are still trying to rule out, but if you followed us over the last few months you know that no one seemed to really know exactly what was going on inside of her. I imagine that hasn't changed. Its a big guessing game.

So until I hear from the transplant team, or until I am so full of thoughts and ponderings that I can't take it anymore, I will be taking the next few days to concentrate on Blake, Allison, and Ashley and little bit of family. I think its exactly what we need right now. Unfortunately, Dave is scheduled for a conference in Dallas this weekend and he won't be joining us. We will catch up with him on Sunday evening, I hope.

Enjoy your weekends. I hope they are full of holiday hustle and bustle, memory making, and the peace that this season brings. I promise to let you know if we hear any kind of results from pathology. Take care my friends. You are loved and appreciated. Trish

...and take it all back. I wish, I wish, I wish. Althoug its not getting me anywhere.

How I wish I would not have shared with Blake and Allie what was happening just yet. I clearly made the wrong decision. They are very, very stressed and it is breaking my heart. I made the wrong judgement call and now I can't take it back.

I was so frightened that we might not be here when they came back from school earlier this week that it drove me to my decision. I didn't want them to be blindsided not knowing that anything was wrong and then for everything to be wrong all of a sudden.

We had a very, very rough morning. Probably the worst I can ever remember. All three of us were in tears and it was absolutely awful. Tears were shed over the silliest things. Dirty sweatshirts, misplaced belts, unfinished projects, hair, you name it and it was probably cried over. I am kicking myself for letting them know about Ash not being well at this time. The last thing the needed was additional stress as the semester is ending and they have lots of things looming above them. Their lighthearted, silly, happy go lucky attitudes have been no where in sight since Tuesday evening. I did that, and now I'm so, so sorry.

Dave tried to talk to them about it on the drive to school and shared with me that Blake broke down and cried then finally stated, "I'm just so stressed out about Ashley. I'm stressed that she's gonna be sick on another holiday and miss everything."

I just made the wrong call this time and now I'm wishing I could rewind and take it all back because even though I think I know what may happen it hasn't yet happened and this morning could of been avoided.

My heart hurts not for myself but for my kids. All three of them are hurting and I can't take it away from any of them. Parenting is hard, and sometimes you just make mistakes. Unfortunately this one was a big one and I have ruined the holidays and the excitement they were feeling. My hope and my prayer is that this will not happen to Ash and that we might still make it special for my kids. All 3 of them. Dollhouse, castle, vacation, and all.

And if that wasn't enough, I can only find one of my slippers, my right foot is freezing this morning, and I'm walking crooked as I switch laundry and make beds. Things are gonna have to turn around or I just might climb back in bed with Ash this morning. Surely we can salvage this day and make it good.

Ash is not great but ok. Pretty unhappy about the catheter and if she had any say in the matter she would have removed it by now. Instead she just keeps growling about it and I don't blame her one bit. We will be traveling back to Shreveport this afternoon to have it removed. Hopefully once that happens she'll be feeling much better. Were scheduled in clinic at 3pm. I'm doing my best not to think about the biopsies. The best case scenario would be to get no phone call at all. When they don't call then that means nothing is wrong. I'm hoping our phones won't be ringing at all.

Surely your day started better than ours. I mean, crying over a dirty sweatshirt? Come on. Life is too good to let that get to us. We've been through much worse.

Our day began at 7 am and we have just now walked in the door of our little yellow house with our youngest daughter in my arms. We have settled her into her bed and are now getting ready to settle ourselves. I had the privilege of hugging Blake and Allie this morning as they headed out the door to begin their day and the privilege of kissing them on their foreheads as they slept just moments ago. I can't think of another thing in this world that I would find more precious than those two gifts. God gave us another day.

Ash did well during her scope. The surgeon was not a GI man and didn't have much experience interpreting what he saw. He said as far as he was concerned it looked good. Very friable. That means red, inflamed, angry and bleeds to the touch, but he thought it was ok. I appreciated his honesty when he said he really didn't know what he was looking at and would just defer to pathology. We will have to wait for the results. Perhaps by Thursday? or Friday?

The Omaha team also ordered for a 24 hour urine collection. That meant that she had to have a foley catheter placed. They are hoping to determine how she is losing protein. Her albumin is very, very low again and they need to pinpoint a reason. Is it because the rejected bowel is leaking the protein through the walls? Is it because her kidneys are damaged from the Prograf levels and have begun to spill it. Is it from malnutrition because she obviously doesn't get enough nutrients and calories from her diet. I assume this collection of urine is supposed to give them answers or direction. Its a new thing for us. Something we have never had to do. The Shreveport team chose to place it while she was sedated so as not to cause her anymore stress today. You have no idea how much things like that mean to this mommy. To know that they are taking her comfort into consideration like that blessed me immensely. They also chose to allow me to bring her home with the cath and allow me to collect it and bring her back over tomorrow afternoon to have it removed. Again, their consideration of Ashley's comfort meant the world to me. They did not want her admitted to the hospital because of all of the bugs that are in the halls. They felt she would be much safer and more comfortable in her own home. I couldn't have agreed more. So I will happily sit up throughout tonight and empty her catheter every 2 hours and put it on ice so that she may rest in her own bed tonight surrounded by her own things. This team of doctors has been and continues to be a blessing. I am so thankful to have found them.

We spent 9 hours in day surgery waiting for her scope and I will share with you that I have never met a sweeter baby girl than ours. She was amazing. She was so thirsty and so very hungry, but never cried. She would give signs to me over and over again and I am sure she thought I had forgotten what they meant, but she did not fuss or complain. I love this sweet girl so much.

She is obviously uncomfortable tonight and doesn't look too interested in sleeping at this time, but she was SO happy to come home and settle in to watch Blue. As I type she is helping Steve and Joe find clues. It that's what makes her happy then so be it. I'll help her search all night long.

I feel so blessed to be home tonight. I believe we are at peace with our decision to have her scoped locally before returning to Omaha. Even if it only allows us a few more days here at home, it has been worth it. The feeling I had as we walked in our front door was overwhelming to my heart. Tonight the tears began to flow almost instantly. It has been a very hard, stressful, exhausting few days and the sights and smells of Christmas that are found inside of these walls truly touch me. I love my family. I love our home. I love this season. What peace my heart feels to be sitting here in the glow of the tree. To kick off my shoes and fall back onto the couch in the family room and know that we are safe for at least tonight blessed me. I'm scared about what tomorrow will bring and the next day and the next day, but for tonight I am home. Ashley Kate is safely tucked into her crib. Her daddy lay sleeping just a room away, and her brother and sister are lightly snoring as I type.

I'm trying to ground myself in the reality of our situation so that the return might not devastate me. It usually takes me a few days for it all to sink in and for me to get a grip on the whole return to Omaha thing that likes to haunt us. The signs all point to rejection. The symptoms aren't supportive of much else. Even so I have a nasty little habit of holding on to hope. Hope that the biopsy will support what we are wishing and hope that we aren't leaving anytime soon.

Thank you for continuing to pray and for continuing to be a constant in our lives. We are blessed to know you. Goodnight. Trish

Tonight we are hanging here at home with Ash. After much discussion the decision was made to watch her through the night. They do not wish to expose her to anything else if possible to keep from doing so. I am so thankful they feel that way. If her fever spikes again or if the vomiting begins again then we will be directly admitted to the PICU in Shreveport. For now she is home and doing ok. Her tummy is cramping and her little eyes tell us she is not well. She continues to cough and have a runny nose. We can feel a rattle in her chest, but thankfully her breath sounds are fairly clear. Currently her fever is gone and she hasn't vomited since around noon. Her stool output is really high and that in conjunction with the cramping aren't good signs. At this time she is sitting in the middle of our bed watching her daddy hang her TPN.

Tomorrow morning we will be seen by a new surgeon who will assess her in clinic and decide if she is well enough to undergo anesthesia safely. Her respiratory status needs to be stable before intubating her.If she is then she will be scoped at some point tomorrow afternoon. Hopefully all goes well and we bring her back home and then wait for results from pathology in Omaha. We may know what direction her care is taking by Thursday or Friday evening. My gut instincts have kind of given me an answer already, but I haven't lost all hope just yet. I need to know what pathology sees on those tissue slides.

We chose for Dave's mom to sit with her this afternoon(Ash took a long nap. A couple of hours I think. She hasn't slept much in a few days) while I drove over to Blake's basketball game. Dave really wanted me to have the opportunity to watch him play in case I end up missing the rest of the season. It was nice to have the drive time with the kids. It gave me an opportunity to tell them what has been happening with their sister and what our plans will be if the results are not what we hope for. As always they amazed me with their responses and their incredible love for Ashley Kate.

I think I have gotten everything for the kids Christmas completed. Actually there is one more gift for Blake that hasn't arrived, but if we have to leave I think Dave can probably get it wrapped for me. I had planned on getting Ash a dollhouse but have decided it can wait until we find out if we will be celebrating here or not. I want to wait to purchase it until I know for sure that she will be able to enjoy it. Over the Thanksgiving holiday's she really loved my nieces and sat for hours playing with it, hugging it, and laying her little head inside of it(on the second floor). She scooted herself all the way across the room to get to it and spent the afternoon completely enthralled with it. If it has to wait until she is well again I suppose that will be ok. Anyway, the stocking stuffers are separated and labeled, the gifts are wrapped, the trip plans are finalized, and I don't think Dave will have trouble pulling it all off without me(if he has too). I'm really hoping to be here, but am preparing my heart in case I am not.

The children are all in bed and Hope is snoring next to me here on the couch. I'm off to go snuggle up next to Dave and just enjoy being home for another night. I have three hours to relax until its time to turn off her feeds and take down her replacement fluids. I'm gonna go concentrate on how good it feels to lay down in our bed and be thankful that I'm home tonight and that she is too.

God is still God and as I shared with Blake and Al tonight we have to remember that nothing takes Him by surprise. He already knows the path we are headed down and He understands how scared we are. Its ok for us to get angry, to hurt, to feel disappointed, and to not like this situation one little bit. After all we are sinners, we are human, we are not Him. We are the way we are because He created us with all of these feelings and emotions. Lucky for us He loves enough to understand when we are hurting. Goodnight my friends. I'm truly thankful for your presence in our lives and in hers. Trish

For now we are still waiting. Today's story is long and has many, many twists and turns, but for now I will not share.

One thing I will say is that I am more than grateful that God loves me unconditionally and does not turn so easily against me. I have been chewed up and spit out more times than I can count today and to be honest my heart is just not there right now.

So for now we wait while several doctors work things out and they'll let us know when and where they would all like for us to go. At this time our sweet baby is here in her home and personally we are praying she gets to stay here and I will not apologize for having that desire for her.

I won't even ask you to pray, for something as precious as that has been used as an attack and I won't allow it to be anymore.

I love you guys more than you will ever know and I thank you from the bottom of my heart for loving Ashley Kate.

Sincerely, Trish

There are days when the water rises too high and too fast to keep yourself dry. There are days when the waves start to come so quickly that its all you can do to pull your head up and recover before the next one slams into you and pulls you right back under. There are days when you are so close to drowning that you wonder if you should even keep trying or just allow the water to overtake you and go with it. Today is one of those days for me.

Getting wet is eminent. There is no way for us to stay dry this time. It feels as though drowning is on the horizon and I'm just too tired and too discouraged to even fight it. I think I'm just gonna roll with the waves and allow them to take us wherever they chose and if thats under then I'm going to have let it happen.

Ash is sick. Her little cold has her temperature rising, her heart rate racing, and her tummy churning. I'm beginning to think its more than just a little cold. Something is invading and her systems are reacting. I'm doing my best to keep her above the water, but I've swallowed a lot of it and my arms are really tired.

I've got calls into the doctors in Shreveport hoping for an admission and a scope. None of the offices open for another hour and a half, so I've got a little time to pack us up. Longview will no longer take us because they just aren't equipped to care for her. I've never had to go straight to Shreveport before so this is new territory. I have no idea if they will get us in or not or even if they have room for us. All I can do is my best.

I briefly spoke with the kids on their way out the door and tried to explain that Ash is sick again. I could instantly see the disappointment in their eyes. Allie's eyes went straight to the countdown on the refrigerator. She didn't mention a word about the trip, but the whole time I was talking she was counting how many days we had left until it was time to go. I told her how sorry I was, but that I didn't want her to come home from school today and not know where we were if we happen to be gone. Blake went into panic mode. "What about my uniform, what about the game, How am I getting there?" Nothing selfish in those questions. He just runs on schedule. Everything in his life works like clockwork when I'm home and getting out of the routine sends him into a panic. He has a game in Henderson this afternoon. I don't know how I'm getting him there just yet. Tears in his eyes and a lump in his throat as I explained how I was hoping to keep us in Shreveport, but that Omaha wanted us out there. He nodded and walked out the door. I wanted to drown at that moment. One baby who is ill, one who is worried, one who is heart broken and scared. Sometimes this really sucks! Please forgive me, but it just does.

Dave stepped into our room, said, "Maybe she's just sick this time. With something normal?" Then even my rainbow and daisies kind of of guy followed up with this, " I always hope that and its never, ever happened." He kissed me on the head and walked out. He too feels the water rising.

Please don't tell me that it's still Christmas even if were not together. Don't remind me that it doesn't really matter. It's not and it does. At least in our lives. This hurts and there is no way around it. Our sweet baby is sick and we can do nothing but keep trying to give her the best life possible. In our opinion that life shouldn't have to be lived in a stinkin hospital bed. I'm sorry if thats ugly. I know it is. I'm just hurting and the water is way above my feet by now and rising quickly.

Any prayers for Ash, for Blake and Al would be greatly appreciated. I'll let you know when and how far we are headed. Trish

...but I think she's got a cold or something. She woke with a runny nose, some cough and congestion and a low temp. Dave mentioned not feeling too well yesterday afternoon and then this morning I began a deep cough as well. Looks like we may be adding some additional issues to what is going on with Ash. Its very unusual for Dave and I to be under the weather. It doesn't happen often(maybe a couple of times over the last 16 years).

She's been up for a while and hasn't been able to fall back to sleep yet. I'm hoping for at least a couple of more hours to rest before beginning our day. For the last week or two we have been hopping up with Ash every hour to two hours through the night and its catching up with us. She is so irritable while on prednisone and so she screams out through the night. It usually just takes a position change and tucking her back into bed, but the continuous interruption in sleep pattern makes you wake feeling very un rested.

I'm so anxious to see what is going on inside of her bowel. I don't sleep well because I find myself wondering what the scope will reveal. I would feel much better had it already been scheduled. I spoke with out doctor's office in Shreveport 3 times Friday each time being told I would receive a call back from the nurse who was in charge of putting it on the schedule and never received that call back. I really needed to have a definite day and time to share with our team in Omaha. I will be on the phone with them again on Monday morning and this time I won't be getting off of the phone until they tell me its scheduled. I learned my lesson on Friday.

Her stool output was actually down a little on Thursday, then spiked high on Friday, and went back down on Saturday. She is at 58cc of formula per hour and her goal on our discharge papers from Omaha was 65 and then we were told we could stop the TPN. However, since she is losing weight and not gaining they have had us bump her back up the ladder on her wean schedule and she won't be coming off of her TPN even once she reaches the goal of 65. They have also added more calories to her TPN this week and we are hoping to see her put a little of those lost pounds back on. She was discharged at 14 kilos(actually a whole kilo up from when were admitted) and last week weighed in at 12.9 kilos. In the scheme of the things(talking about a damaged bowel recovering from rejection) this weight loss is huge. There's something like 2.2 lbs in a kilo. So what that tells us is we have to now divide her total output by 13 instead of 14 and it changes her amount per hour. She is allowed anywhere from 40 -60 cc/kilo per hour while healing. 40/hour being the goal of healing, but as long as it doesn't go higher than 60 we are comfortable. She's been as high as 97 one day and 90 another. Those are the two highest days with most days being in the 60-70 ranges. When discharged we were told we would not be concerned and would not scope unless her output spiked to 120-150 so I'm not sure why they have changed their minds. I am guessing it is because of the slow progress we are making on her feeding advancement. We have been home for 3weeks and Tuesday will begin our 4th week since leaving Omaha. I think they wanted her on full feeds by now and this in conjunction with her weight loss is causing them to want a scope?

The best thing that could happen for us is a clear scope next week. A scope that shows no signs of ongoing rejection. A scope that shows no signs of active CMV. If we get that then we have a good chance of not returning to Omaha. If we do not, then we believe we will have to return. My main reason for not agreeing to return on Tuesday to be scoped was because if we had a clear scope and then went to clinic on Thursday I still don't believe they would have allowed us to return home. They would have said, "Well, we want to see her in clinic next week." So we would have lost another week away from the family. Then the following week we would have been told, "Well, we really want to see her on full feeds before you leave. We want to have her off TPN and have her line pulled before you go home." I can't promise you this is what would happen, but I've been doing this for 3 years now. 2 of those years in Omaha with this team of doctors and this is the way it works. I shared those exact concerns with our coordinator and she kind of chuckled on the phone and I said, "I understand. The timing kind of stinks." She knew I was right. She knew thats what they would have told us. She also told me they could not make me come back, but that they would like for us to. I told her I understood that, but didn't see any reason why we couldn't get the initial scope done here at home and then decide our course of action. If the scope comes back clear then we would have avoided the trip and the risk of being told we aren't allowed to return home. If it doesn't, then that will be a whole different story. I understand that.

We also talked about how their only concern is for Ashley, the patient. That's their job. I get that. Then I shared with them that my concern is not only for Ashley the patient, but also for Ashley our little girl. I have to be a parent, not just a health care provider. That changes the whole dynamic. I'm trying to raise a family. They are trying to treat a patient. I was told(last year at the holidays by the surgeon in clinic that week) that my family was my problem not hers. Her only problem was Ashley. O.k, I get that. That's why we do things a little differently. Quality of life is a little more important to me. Life with no quality, no happiness, no family unit, no experiences outside of a hospital room (in this mommy's opinion) is not really life. Its existing. Not living.

I don't pretend these decisions are easy. I second guess myself constantly. I wonder if I'm doing the right thing. I wonder if I'll regret my decisions. I wonder if I would have done something differently if the outcome would have been different. Parenting is a hard job. Its the most rewarding thing I've ever done, but yet it is the most difficult. I sit here this morning trying to figure out why He trusted me with these amazing kids and I just don't get it. I obviously don't see what He sees in me. In the end of all my figuring I'm just grateful. Grateful that He chose me. That He gave them to me. If He trusts me, then at some point I am going to have to trust myself. That is what I ultimately decided this week in regards to our situation with Ash. There is nothing selfish about my decision. It's not about what I want to do. It has nothing to do with me. It is about what I believe is best for Ashley Kate. She needs to heal here in her home, not in a hotel room or a hospital bed. I hope in someway people can understand that, but even if they don't its my decision. I'm the one that has to live with it.

I just couldn't take the risk(yet) of being separated from the family. If she is not in rejection then we need to stay home. Being in Omaha will not help her heal one moment faster then God intends for her to heal. There is NOTHING that can be done to speed this process up. Sitting in a hotel room, 700 miles away, during the holidays, and spending Christmas alone, will not speed up her healing. It is going to take time. It is proving to take longer this time, but she was very, very sick and her bowel was very, very injured. It just might need more time to recover. Again, if she is in ongoing rejection then the whole story changes. I get it. I don't have to be reminded of it.

If our scope shows that she is in ongoing rejection then we will be driving back to Omaha(just Ashley and I) and we will be admitted to the hospital while it is treated. I am praying it does not return to us with this result.

So for today we will wake up and make a few more memories. They may include coughs and runny noses, but they will be more memories we have made then if I had jumped in my car and taken off for Omaha last week. I'm just hoping we have lots more days ahead of us to make lots more. I'm going back to bed for as long as she stays asleep. Talk to you later. Take care, Trish.

...these little ponytails, those amazing eyes, that tiny smile, and this sweet girl.

I'm exhausted from the stress, the worry, the fear. My heart has been so heavy for the last 3 days and its wearing me out. I'm living two different lives. The life that pretends all is well, happy, and good in our world and the one that knows its about to be shattered on the morning I pack her up and have to say good-bye to Dave and the kids. These days are killing me.

How I wish I were more like Dave. He doesn't worry. Doesn't fret . Doesn't allow himself to stress. Last night as we sat at the dining table working our christmas puzzle I asked him, "Do you think God will allow us to stay home?"

"Trish, don't ask me questions you know I can't answer. Its just too hard to think about and since I have no idea what will happen I'm not going to waste my time worrying about it. I'm concentrating on enjoying our time."

Ugh! I wish I could live that way.

Despite my aching heart we are enjoying our time together. The kids had a "party" with a few friends last night. Dave and I spent the day together taking care of Ash and getting the food and the house ready for their friends. We worked the puzzle for awhile with Al last night. Laughed and played with the gherkin and watched movies late into the night. Today we are sticking close to the house, hanging Christmas lights, and just spending time together.

Ash looks really good(as you can see in her pictures from the last couple of days). If only that stool would regulate and her body would gain some weight then I would call everyone and tell them to quit worrying and leave this girl alone. Yep, that's what I'd do. Just leave her alone and let her be a little girl. If only thats all she had to do was be a little girl. I long for that life. The one that allows her to grow up without doctors, hospitals, surgeries, owies, and all the rest. I want it so desperately for our sweet girl.

Well, I guess I'm off to organize. Just in case. I want to have everything ready for Dave to stuff stockings, pack the kids for a great vacation, and make the holidays as great as they can be for two amazing young people who deserve nothing less. Secretly I'm hoping its all in vain because Ash and I will be staying right here where we belong. A girl can still dream, right? That's what Christmas does to me. Keeps me dreaming.

After speaking with our coordinator and listening to what the doctors have said Dave and I have decided to first arrange for Ashley's bowel to be scoped in Shreveport. We are currently working on getting that scheduled. The tissue will be sent to Omaha to have their pathologists look at it. Based on the results of those slides we will decide whether or not to return to Omaha. If there is anyway possible to have Ashley taken care of closer to home then that is our hope. Always knowing that if she NEEDS to be taken care of in Omaha that we will be on a plane in a matter of hours. Her health is always the main priority. There is a very good chance that Ashley never came out of rejection. I believe that is what everyone is suspecting. Still in rejection. There is also a chance(although I feel it is a small one) that she is just healing slowly and not currently in rejection. Omaha had requested that we be there to be scoped on Tuesday and seen in clinic on Thursday. We are attempting to have her scoped in time to have her slides to them by Tuesday. Before leaving Omaha I questioned whether or not we needed to scope Ash to check on the status of her healing. Denied. The week of Thanksgiving I again requested that perhaps we should have her bowel scoped because of the rise in her stool output. Denied. Decided not necessary. While discussing with our coordinator this morning I shared our opinion that since her doctors were not requesting that she be scoped until Tuesday(they didn't seem to want it done immediately) that we were choosing to have it done here first. Then we will decide what direction to take.

Dave and I are doing our best to raise our family. Our entire family. We are trying to decide when it is necessary versus just preferred to have her cared for in Omaha. I realize many people disagree with us on many different issues and I have come to realize that its ok. I'm not raising my family and caring for my children to please the whole world. What I am doing is the best that I know how to do. Loving them with everything in me and providing for each of them the safest, most stable, nurturing environment that I possibly can. If I were to be gone tomorrow I can honestly say that I believe my children would know that I loved them, that they were my top priority and that nothing in this world mattered more to me then the three of them. I want to have no regrets. We have also decided that if Ashley Kate and I are in Omaha during the holidays that Dave will take Blake and Allison on our trip anyway. I do not want them to miss what we have planned. They have suffered many disappointments over the last three years and I can't bare to cause them another. They have no idea that Ash is sick and that there is talk of us returning to Omaha. Please use discretion when you see them during this time. I do not want to burden them if I do not have to. We will face this when and if the time comes for us to leave again.

Even if we have only "bought" ourselves a few more days together as a family then it will have been worth it. We have learned that a few weeks, few days, few moments are precious. She is a chronically sick child and it breaks our hearts to have to accept that, but we have no power to change it. We better than anyone understand this, and because of this understanding the more moments we can spend making memories together the better. Last night I lingered longer. I laid next to Allie and scratched her back until she was sound asleep. I stayed a while after that even just to soak up as much time next to her as I possibly could. I kissed the forehead of my son as he lay sleeping not once, not twice, not three times, but so many that I lost count as I cried over him. The thought of leaving them again is more than painful. Especially at Christmas time.

What are the odds that she is fine and this is all about nothing? I guess its possible, but not likely. We are hoping beyond all else that she will make huge improvements in the next few hours and days. We remain hopeful. As we learn more we will let you know. At this time our sweet baby sits in her nursery and plays. So innocent and so, so precious. I wish I could keep her safely tucked inside of that room forever and ever.

Your prayers and well wishes are very much appreciated. May God bless you and your families tonight. I know He continues to bless ours even though many times there is much pain involved. Take care. Trish

I look into these eyes and I gaze on this smile and I tell myself "it just can't be true." We just made it home and we are still struggling to believe that she and I may be leaving once again. It is just too much to bare at this time.

The anxiety, the hurt, the disappointment that I am feeling inside my heart is so heavy I can't seem to shake it. I put on a happy face to get us throughout the day so as not to alert Blake or Allison just yet. Now that they are tucked into bed my happy face has faded away and all I can do is fight back the tears that want so desperately to fall.

I'm sitting in our family room. The tree is glowing, the candles are burning sweet smells, the children are sleeping, and the music is playing. I love this place. I truly love our home. My heart is so grateful for each and every moment spent here. Contentment resides inside of me as we reside here. I can't imagine packing our bags and driving away 3 weeks before the holidays.

Is it irony or just a cruel twist of fate that just moments before we picked up the phone and answered to find transplant on the line we had finalized all of the travel arrangements and necessary approvals to fly with Ashley's medical supplies, bags of fluids and pumps. My heart was so excited and so happy and then it began to pound so hard I thought it would burst. Each time they say, "We'd like you to come back" I feel as though something pierces my insides. Once you've been forced away from your home, your family, your everything the thought of leaving it again is more than devastating. I still can't believe this is happening.

I called Dave at the office and asked him what we were going to do. His answer was this, "Were going to live. Were going to allow her to live. Outside of a bubble. Experience as much living as she possibly can." On that note we packed her up and allowed her to go out with us to Blake's basketball game tonight. It felt so good to have her with us and yet it was so frightening to me to actually take her out there. Anyway, while we were at the game transplant left a message on our phone asking us to call in the morning to work out the details of getting her scoped. Thats all the message said. It didn't say here or there. I have no idea which direction were going, but tonight I hope with all that is in me that we are staying here for the scope and then I am hoping it is clear. Clear of rejection. Clear of CMV. Clear of anything that could harm our child. Clear of anything that could give anyone reason to feel as though she should be hospitalized.

I wish I could tell you of this amazing, miraculous peace that I feel. A peace that has overtaken all doubt and fear and anxiety. A peace that assures me we are going nowhere. A peace that washes over me and lets me know that she is fine and we are going to be fine. I wish that's what I had to share with you tonight, but its just not where I am. Where I am is on the other side of that peace. The side that has me frightened and hurt and doubting. Thats where this mommy's heart finds itself on this December night.

I just received a call from transplant and they informed me they would like for us to come back. No, I'm not kidding. My hands are shaking, my heart is pounding and tears are stinging my eyes. Not to be admitted, but to be scoped and to be seen in clinic.

3 weeks before Christmas. 3 weeks before our first real planned family vacation for our children since Ashley Kate's birth 3 years ago. 3 weeks is not enough time. I don't trust this situation. I don't believe we will go there and then be released home in time for Christmas. Call me crazy, but I don't believe it. I don't want to go there. I told them to go back and talk about it again and let me know why I can't make this happen closer to home.

I need a real GOOD reason as to why her scope can't be done locally. I need a real GOOD reason why I need to sit in a clinic visit to talk when we can talk just fine over the telephone. I can weigh her, I can take blood pressures, I can take a temperature, I can have biopsy slides shipped over night to them(we did it last time). Clinic will serve no purpose other than taking vitals and discussion. We can do that by phone. If the surgeons want to know what's going on with her then CALL me. I'm happy to relay every single detail of her past three weeks. I have kept impeccable records. I'll fax them a copy of every single temperature, in put, out put, blood pressure, etc,etc, etc.

We can't do this to our kids right now. I don't think they will be able to handle it this soon. Please tell me this is not really happening! Somebody please tell me we can do this locally or semi locally. If she is in severe rejection then I'll go back, but if anybody can treat whatever is happening to our baby anywhere in this vicinity then sign us up. Please!

My heart is on the verge of breaking once again. Our sweet baby sits in the floor of her nursery reading her books with no hint of what is going on around her. The phone rings and all she does is smile at me and point to it. If she only knew who was on the other line and what they were asking us to do.

Please pray for us. Pray for her body, her damaged bowel, her life to be protected. Pray if there is anyway possible for us not to go, not to leave Blake and Allison, not to miss Christmas that it will show its self. Your prayers for our baby are truly coveted at this time. Trish

...but nothing more." The words of our transplant coordinator this morning. Not something we didn't already suspect, but hearing them out loud sure wasn't encouraging. The surgical team will be meeting in the morning and they will discuss Ash's case and try and come up with some new ideas.

Dave and I already knew Ash was having a really difficult time healing this go round. She has not bounced back like we all had hoped. Her feed advancement is painfully slow. Her stool output is too high. Her weight is dropping. Her body is struggling and it is beginning to effect her personality. She hurts. Her body aches from necessary medications and a damaged bowel. Her albumin is "in the toilet" to quote our coordinator which is an indicator that her bowel is leaking proteins.

Currently she is on a regime of 3 different immunosuppresant drugs. Prograf(or FK), Rapimune, and Prednisone. All three are being used in an attempt to keep her body from rejecting her bowel again. Problems? Prednisone is a miserable drug. We suspect it is the cause of most of her discomfort and aches and pains. Rapimune inhibits healing, but is needed to stay out of rejection. It also has a major side effect of high stool output. Not something we need to contribute to at this time. Prograf levels are what started this whole mess. Too high and her kidneys will need to be transplanted in a matter of years, too low and her body rejects her bowel.

There are days when I want to pull my hair out right along with Ashley Kate. Knowing that healing is so necessary, yet difficult for her is killing me. She won't survive without this bowel. It is necessary to sustain life. How I wish there was something I could do to make this easier on her. Once again I can do nothing. How helpless we feel.

The good news is that for now we remain home. Home making memories and enjoying life as a family. There is really no benefit to being hospitalized at this time. Nothing more can be done. Unless she goes back into rejection. We pray she does not.

I'm a little anxious to hear what the plan will be. They said they would call us tomorrow and let us know something. I know we will be increasing her caloric intake in her TPN. Other than that I just can't imagine what they will come up with. Or perhaps I don't want to imagine. Your continued prayers are appreciated. Trish

Blake came into the family room this morning to put his shoes on before school. I was sitting across from him and caught a glimpse of him staring up at the mantel.

"What are you looking at?"

"Just looking at Christmas." he answered.

"Do you love it?" I asked(half way joking not really expecting the answer I received).

"Uh-huh. It feels good doesn't it? I really like having the tree and stuff in here, and the music."

"I think its peaceful. It really brings peace to my heart when I sit in here."

I love this holiday. I love being home with them to celebrate it. What a beautiful glimpse I was given this morning of my son's heart. Our home truly is peaceful. After a very difficult night for our sweet Ashley I am hoping for her morning to be quiet and full of peace. Her little body deserves a break. She screamed for most of the night leaving Dave and I at a loss.

My plan today is to keep things as quiet as possible for her. Just allow her to rest and feel the peace that resides here.

Dave and I have a prayer request. We have been searching for the right person to fill our front desk position at the office. Our girls are stretched to the limits and really need an additional person in there to share the work load. Its an amazing place to work. An environment of believers who love the Lord, love the job, and love our patients. Our goal is to improve people's relationships by helping them take control of their health. "If your gonna be alive, you might as well live" its one of Dave's favorite things to say. It takes a very special personality to make this position work. If you would please pray for us to find that special person we would greatly appreciate it. We know she's out there, we just haven't found her yet.

I hope your day is full of peace, and that you are surrounded by reminders of this season. I love nothing more than to look around and find myself in the middle of this holiday. He gave such a precious gift to this world. Have a great day. Trish

Since rejecting her small bowel in October I can safely say that recovery for Ash has not been easy. She's not bouncing back. She's not herself. She doesn't feel good.

We have a few hours in the day where she does actually sit up and play, or flip through books, but other than that she is pretty miserable. We have not picked back up with her therapy just yet. She just doesn't feel well enough to have others touch her. I am going to attempt to place her back in her standing frame this week, but really have no idea if she will be able to tolerate the straps. She continues to be on steroids and as in times past it is proving to be one of her biggest struggles. Ash doesn't function well on this medication. Her body hurts. It literally aches to be touched. Even something as easy as changing her diaper makes her miserable. She can't stand to be held, repositioned, turned over or sat up. She growls and screams with almost every touch. Morning are especially difficult for her. It literally takes hours for her to get a handle on the day. She trembles because of the medication. She pulls out her hair(by the handfuls). Her newest coping mechanism is twisting. She twists her hair around her thumbs until it is so tightly wound that the only way to get her thumb loose is for her to pull. So she does. She pulls and pulls until it all comes out by the root. Its making me crazy. I have tried everything to get her to stop, but have not been successful. Her face is puffy and swollen. Her hands shake. Her sweet disposition only shows itself briefly throughout the day. We usually have very pleasant afternoons and evenings, but the mornings are a whole different story. The nights are proving to be difficult as well. She slept intermittently last night. A half hour here or there, but never good quality rest. I have been up and down with her each hour.

This is not easy for us. We want for Ash to have the opportunity to return to her silly, happy, joyful self. We want for her to feel good all day long not just for a few hours of the day. It is taking much longer than any of us suspected for her to begin to feel well again. The medication is a temporary thing(we think). We were told that once her FK and Rapimune levels stabilize that we will be allowed to begin weaning the steroid. At this time the steroid is being used to combat the rejection and to help heal the bowel. If we can get enough immunosuppression on board to keep her out of rejection then the steroid will no longer be needed. Currently her FK level is around 5(that being the target) and her Rapimune level is only 1.6(again needing 5 to be the target number). I can't wait for the day those lab values come back. Quality of life is more than important to us. Ashley Kate deserves to feel her best. At this time she does not.

The main thing we desire for Ash is happiness. Oh, sure we want her to talk, walk, eat, and be "normal", but even if those things never happen for her we want her to be happy. The joy God has placed in this child is infectious. It is the most beautiful thing I have ever seen. On the good days her smile can not be captured in its full essence. Her eyes sparkle and shine with happiness. I'm longing for those days to return to her.

Her stool output continues to be more than desired. Dave is working on plotting the levels on a graft so that we might actually have a visual of the effects of each feeding increase. It will help us to better take care of her and allow us to communicate her process of healing much better with our physicians. It always helps to see something as well as hear it. It made me giggle as I read the word poop on such an "official" looking document. When we learned to read and make grafts in grade school I promise you I never saw one about poop in my textbook. Had it been there I'm afraid my poor math teacher would have never been able to get control of the class. Who knew?

I guess God knew. Anyway, I'm exhausted. Its time to get Dave and the kids up and around. Perhaps if she rests this morning then I'll lay down for a short nap before kicking off our day. That would be wonderful. Hope yours is blessed. Talk to you soon. Trish

This morning we arrived in the wee hours from our Thanksgiving trip. Our time spent with family was beautiful and Dave and I spent the long drive discussing how grateful we were to share our sweet Ashley with our family. It was truly a blessing to have her home for the holiday. We made magical memories that we will store in our hearts forever.

Ash did well over the trip. She felt pretty good for most of it. She continues to have very, very difficult mornings, but by afternoon she comes around and is herself once again. Her stool output has not improved and is continuing to climb higher and higher. We eventually cut her tube feedings back instead of advancing. I know our team wants her off of TPN and expected it to have happened by now, but she is not tolerating her feedings well enough to continue advancing them. Her temporary line is probably needing to be changed to a permanent one, but surgery at this time is not a good idea for her. Obviously we are disappointed by the slow rate at which her gut is healing and are a little concerned that she may be in ongoing rejection, but still no one thinks we should scope to find out. Not yet anyway. Outside of the high stool output we have no indications that she is rejecting, but none of our cultures came back to us leading to anything else. For now we are holding steady at about 50cc of tube feeds per hour. We have 3 more changes to make before the her TPN can be stopped. Our hope to have her line pulled before Christmas doesn't look as though it can happen. So on that note...

Its time to plan this Christmas vacation trip for the children. I am hesitant to actually do anything in preparation just because it seems as though each time I do the bottom drops out, but traveling by plane as far as we are we need to send many of her medical supplies in advance(this whole charging for each checked bag thing is crazy. Not to mention the weight of all of her supplies It would cost a fortune to fly with it all). This really needs to be done this week because of the holiday delay in shipping, but deciding what to send is going to be difficult and making sure its not lost at the resort once it arrives is going to be a feat. I will spend much of the morning on the phone trying to arrange all of this shipping and attempting to secure an accessible room for us on the bottom floor of the building. I'm a little freaked out about not being allowed a car seat on the trip and wondering how to successfully travel with her chair, but I also know we are not the only family to have ever attempted this vacation with a medically challenged child. I know it can be done, I just need to figure it out. Once all of this is done, then I can just look forward to the fun and excitement of our trip(Still praying that Ash is home so that we might take it).

Today we have an eye appointment for Ash and Blake's first basketball game of the season is this evening. I have mountains of laundry to tackle and a few Christmas gifts to wrap. I have a new case of delicious candles just waiting to be lit and Third Days' Christmas offerings ready to play. There are hundreds of beautiful photos I hope to get to sort through and some really cute ones from my nieces "very merry unbirthday" party to share with you. I love how it turned out! We are busy planning a magical celebration for one of my other nieces in just two weeks. I have lots of work to do on that one. We've dreamed up a tent full of twinkling lights and soft pillows and fabrics for her slumber party. I'm so excited! On top of all of this Ash needs a good bath before her appointment and mommy could use one too. I guess I should get off of here and get started. Hope you are enjoying a wonderful holiday season. My heart is so full with each passing day as we get closer and closer to keeping Ash home for the holidays.

Have a wonderful day. Only 24 more days to celebrate the Saviour's birth. Make 'em count. Love you guys. Trish