Uggghhhh!

In case you haven't noticed....ummm...our blog is a mess. It looks like the designer of our blog (who went out of business years ago) has something that expired and therefore took our blog template and all our photos with it.

So...I don't know what we will do at this point. I have NO idea how to fix it. To be completely honest I have NO desire to learn anything new at this point in my life other than how to care for Ash. My mind is kind of mush when it comes to most things other than her care and especially computer type things and so...it is what it is.

Sorry. We had no warning it was coming. Had no idea it was going to happen or I might have tried to find someone who could have redesigned it for us while saving our old stuff. Anyway, this is what has happened from what we can figure out.

A day without

Do you know what today is? Do u know where you where on this date four years ago? I know exactly where we were. I'll never forget. It's burned into my memory like so many dates have been since that one.

It's the anniversary. The anniversary of the day that a mother watched her child breathe their last breath and the anniversary of the day that this mother breathed a breath filled with hope for mine.

Four years ago today Ashley Kate received a gift. She was given a chance. A chance to survive. To live. To experience a little more than she was ever expected to.

We usually mark thus anniversary with a small celebration. We usually arrive at this date with smiles on our faces and remembrance in our hearts. It's usually a day we snap photographs of to document where she is now. Today we did nothing. We struggled with our thoughts, our feelings, our emotions. We wanted so desperately to celebrate four years, but yet we knew it wasn't what it was supposed to be. So... Nothing was done. No balloons where bought, no notes were written, no candles were blown out.

I don't know how to share how we feel. I don't think it can really be explained. Of course we are still grateful. Of course we still feel so very humbled by such a generous, thoughtful, selfless gift. It's just that we couldn't bring ourselves to celebrate anything this year. We've lost so much and yet she's still here with us so we haven't lost as much as others have. We didn't get to be in that 50% of bowel recipients who make it four years. I mean our daughter has made it, her graft didn't. Where does she fit? What do we celebrate? Four years of life post transplant? Four years of grafted liver survival although it's dying? Four years between needing new organs? It's just a tough place we found ourselves in today. Not a place I ever thought we would be in.

I think back over the journey of the last four years and I shake on the inside. The knowledge that we now posses of transplant life is dangerous. It's not filled with hope alone. Along with hope there are fears. Fears that only experience can bring to you.

Dave and I are at the mercy of so many things. We have no idea if Ashley Kate will be relisted. We are at the mercy of the transplant team. We have no idea if organs will ever become available for her. We are at the mercy of parents who will have to live out our worst nightmares. We have no idea if she can survive long enough to wait on the list or if she will survive transplant itself and all it's complications. We are at the mercy of God.

So tonight we lay our heads down, close our eyes, and remember where we've been before. We acknowledge how different it feels to be here today than it did just one year ago. We whisper prayers of remembrance and thankfulness for the family who lived this anniversary date along with us today, and we pray for the opportunity to share an anniversary with another. As painful as it is to acknowledge that fact we still hope for it to come.

Things that make me happy

Fall garland hanging around our front door and the large pumpkins that accompany it. Pulling up to the house and seeing that each day just makes me smile.

The delicious smell of a Yankee candle burning in the family room.

Walking back to check on Ashley Kate and seeing a book in her hands. I remember sitting on the floor of her hospital room crying the night of her birthday party as I flipped the pages of the books she had been gifted with. I cried because I feared she would never have the ability to enjoy them. Today, my heart is happy watching her take interest in them and seeing her flip the pages on her own.

Knowing that an amazing birthday cake is in the works at my sisters house for Blake and his girlfriends 15th birthday. Yummy! He's pretty happy about this one too! I love that their birthday is on the same day. It just makes it fun! Shopping with Blake for his Allison makes me happy. He hates to shop and to watch him do something so out of character is fun.

Decreasing Ashley Kate's meds today. No more valuum! No more methadone! Only fentanyl left to go and our girl will be all on her own. With that comes the life in her eyes. Its coming back a little more each day as the meds are reduced.

Listening to 7th grade drama. I know, I know, it shouldn't make me happy, but to have the opportunity to hear my Allie and her humorous take on the goings on in 7th grade just makes me smile.

Preparing uniforms for this weekends ballgames. Soccer at 9am then a trip to some town I've never heard of for baseball at 6 and 8. Yeah, its what we love to do. I'm so happy to get to go.

My mom and her willingness to be here so that I can be "here" for Blake and Allie. I would really be struggling without her help and the happy heart that accompanies it. Such a blessing.

Spending the lunch hour with Dave every, single day. I miss this so much when we are in Omaha. Its the best part of my day.

My son and his friends. Their funny. Really, really funny. They make me laugh.

Home. Just something about this place that puts a smile on my face. I love it. Its ours. Its comfortable. It houses all the people I love best. Its in Texas. What about that doesn't make you happy? Its a wonderful place to be.

Volleyball. Never thought I would ever say that. Really, I never dreamed this game could make me happy, but to see my girl playing it...It makes me happy. She's awesome!

Blessings. Undeserved, unexpected blessings. Like the flowers that arrived from Florida Tuesday morning in celebration of a "Tuesday at home". It made me smile. Thank you Wendy, what a wonderful blessing. You are so thoughtful.

Time. It makes me happy. Making every single minute of it matter.

Carpool. This one is for you Rachel...just sayin:)

On that note, its time to go pick up the kids. Have a great afternoon.

Cherished

The moments I cherish most come to me mostly during the night. As I watch her sleep. As I feel the warmth of Dave lying next to me. As I peek at the image of my Allison Brooke curled up in her big bed. As I listen to the "good night" wishes spoken from my son to our baby. I lie still, not saying a word, not breathing too loud, not moving a muscle, and I concentrate on those moments and commit them to my memory. Cherished memories.

I think to myself,

"I never want to leave."

" I never want to take her back"

" I never want to give this up."

"I never want this time to end."

" I never want to open my eyes and realize that we are no longer here, no longer home, no longer together."

We are trying so hard to be in the moment, not looking ahead, not wondering what tomorrow will bring, not guessing how much time we have left. We are trying. Its been days since I've cried, but I feel the urge to almost every minute of the day. I'm trying to be positive, to be happy, to stay blessed.

At Ashley's doctors appointment today I asked the question that we have been avoiding for weeks. I don't know why I asked. I shouldn't have because its haunting me now. Its making the time I want to last forever need to pass quickly. Its urgent. I don't want it to be, but yet it is. I want to enjoy the fall here with the family. I want to give my kids a holiday season filled with peace, and joy, and tradition. I want to make memories. Cherished memories that will last a lifetime for each of us just in case we aren't given one with our baby. I'm sharing my inner most thoughts a loud at this moment. Risking ridicule, judgement, condemnation from those who are waiting to pounce. I've hidden them from everyone except for Dave. As we sat at lunch yesterday we discussed the miserable place we are living in and the tug of both sides of this equation on our hearts. The moment we take her back, the moment she is listed, the clock begins to tick. As if its not ticking now. Its just that I'm afraid of transplant. I truly am. Although I know its our only hope. Her only hope. I'm afraid of what may happen to our daughter and to our family. I'm afraid of being denied. I'm afraid of being listed. There is no happy place in this situation.

You see, she is just now beginning to smile again. She is just now starting to relax a little. She is just now realizing that she's safe and we are still trustworthy. The moment we leave it will leave too.

But today.... I don't want to concentrate on the advancing state of her liver disease. I don't want to discuss how high her numbers are and how the sight of bilirubin leaking from her nose, her eyes, and her ears, sends chills up and down our spines. I don't want to think of the answer given to my question about how much time she can keep going like this. I don't want to think about the delay and the denials of our appeal for Omegavin. I don't.

Instead...I want to show you this picture of my baby. I want you to see how very alive she is today. I want to appreciate her beauty and cherish her presence in my life and in our home. Ignore the color of her skin and allow the magnitude of the miracle sitting on that step in our house sink in. I love her so much. I love having her home so very much. In spite of the pain, I love my life so much.

Home

Allison Brooke - Homecoming 2010
7th grade

Being home allows me to be here for moments like this...

Blake and Allison - Homecoming 2010
Freshman Year

and this...


and you can't replace this time in their lives.

Tonight as I tuck my littlest one into bed, chat for an hour with my middle one, and wait up for my oldest one to make it back home safely, I am reminded what a blessed life I live. To have these three children in my life is the most amazing gift. Being their mom and seeing the smiles on their faces means more to me than any thing else. I love this part of my life. I absolutely love it.


Dave and I slipped out to the football game for a little while tonight. We didn't stay the entire time because Ashley Kate needed to have her TPN hung, but the normalcy of the evening was nice. Sitting among other parents, our kids running around with their friends, and just enjoying what all of our peers do on a regular Friday night in Texas. I have moments where I find myself staring at the people around us and feeling like we no longer belong with them or anywhere for that matter. Its such a weird feeling. Its like we live in a different place than most and very few have any idea where that place is. I don't know how to explain it, but it only lasts a few moments and then I snap back in to where I am and I breathe a sigh of relief. Normal life. Enjoy it for now, I know things are going to be very different for us soon.

Anyway, it was nice to feel normal. If even for a couple of hours. It was nice. The only thing that could have made it better for us was to have our 5 year old there with us sporting a big blue and gold Pine Tree Pirate hair bow, but its not to be this year. Maybe next, just not this year.


Tomorrow we get to enjoy watching Allison play soccer then we will spend our afternoon watching Blake play baseball. My mom came into town last week to sit with Ash and allow me to attend Blake and Allie's activities. Such a blessing to be allowed to be present with them during this time that I am home. Ash is not to a place where she can be on the go with us and to know that she is safe and well cared for in our home is nice. I'm so thankful to have some help. So thankful. Its so important for us to spend time with the older kids. Being home this time is different. Its not a feeling of if we have to go back to Omaha haunting me, but knowing that yes we are going back is haunting to me. Time with Blake and Allie is so very important. I will be missing so much of their lives next year. I wouldn't trade these days we all have to spend together for anything. I just wouldn't.

Hope you all enjoy your weekends. Thanks for sticking with us. Your all such a blessing to Dave and I. We truly appreciate your prayers and your support. Good night.

Our Girl...

Sat on her "perch" in our family room for the first time in three months yesterday. We were so encouraged to see her up without assistance. It still hurts, she's not that strong, but everyday it gets a little better.

She had her doctor's appointment in Shreveport yesterday. Our surgeon in Shreveport is re-applying for the grant from the FDA to release Omegavin for her. A good friend, called a good friend, who called our team, who laughed about the whole connection, and happily agreed to apply for us. Now we wait. We've been waiting almost a month and now we keep waiting. This is step one of obtaining it. The other steps will follow. Ashley's liver enzymes were over 500 and 300. Her bilirubin was over 14 and her direct bili was 9.5 this week. Her alk phos was sky high as well in the 5oo range. The bottom line is that the TPN is keeping her alive but it is killing her liver.

Yesterday was such a long day for her that today she is worn out and has been sleeping for most of it. She's still so tiny and so fragile. Although there are days that she looks good to us we still realize that she is a very, very sick little girl. We are so in love with her and our time with her is so precious. We are grateful for every single moment. So grateful.

Settling

Its been over two weeks now. Finally I feel as though the "dust is settling" and we are relaxing into a new rhythm, a new routine. The first few days were frightening. Very new. Very not normal. Now we have figured out to live this new life and we are doing ok. Its a blessing to be able to say that. We are ok.

Ash has had some rough moments. Some long nights. I have had some rough moments. Some long nights. This morning as I showered I stood there and realized how very rested I felt. I'm sleeping again. No longer spending the night time hours in tears as I stare into the face of my daughter. I can watch her fall asleep and then close my eyes and sleep too. Its nice.

No, life is not all "right" again in our part of the world. Its still unsure. On a daily basis we have no idea what will happen with Ashely Kate, but something has happened that makes life different now. I don't know how to explain it other than saying, "she's home again". I think thats what the difference is. She is home and at peace. She's not afraid. She's not nervous. She knows where she is and she knows those who surround her.

I think that Ash is having a good week. She looks stronger to us. She looks happier. She looks beautiful. The med adjustment is helping. Today I'm hoping to wean her medications even more. The less and less of the drugs... the more and more of Ash we begin to see in her eyes. This morning I look into her face and see her. I really do. She's not as clouded or as distant as she was a few days ago. I see her sparkle. Its really her. I can't tell you how nice it is to know that through all of this she is still there. She is coming back to us. She really is. She is awake more this week. She is communicating more and more this week. She is sitting up for a few minutes at a time without assistance. She can sit and rock in her little chair. She can sit in her car seat for the drives back and forth to Shreveport without being too uncomfortable. There were days where I was not so sure I could show transplant that she was indeed living again. Functioning. Surviving. Now, I feel confident that we are indeed getting there. She is going to be able to show them that yes, she has a life again. A life that is worth saving.

I watched my oldest daughter lean down and kiss my youngest yesterday as she was resting on the couch. My heart smiled at the sight. The words spoken from Allison to Ashely Kate were sweet, genuine, heart felt. Just a big sister telling her little sister how much she was loved. I watched my almost 15 year old son climb up in a tiny bed next to his baby sister last night and I had to fight the tears from falling. He just sat. Close enough to her to make it all ok for both of them in the late night hours.

I can't describe how good it feels to know that Dave and I gave those moments back to the two of them. Bringing her home enables my kids to love on each other in the hardest of times. They needed it. They really need each other to get through this.

Ash has a long way to go. She's got a lot to accomplish before we can take her back to Omaha for an evaluation. It is not going to be an easy journey getting her there and it won't be easy once she is there. We have another evaluation to get through. We have to face the very same "professionals" who recommend denial of transplant to our team because of her "inability to contribute to society". Its a huge obstacle that lies in our path to re-transplant, but every single day I am encouraged by the progress Ash is making. Yes, her liver is dying. It really is. But...her spirit is surviving. That speaks VOLUMES to us as her parents.

I just wanted to let you all know that life is settling into a an ok place for us as we face what lies ahead. The new/old place that we have fallen into is strangely familiar. Our family, our baby, has lived with liver disease before. Our little one survived it once while waiting for organs and we are as hopeful as we can possibly be that she will do it again. Thank you so very much for your constant presence in this place. Thank you for your unending prayers and support. We are figuring life out and the tears are not a constant presence in our home. We do still cry, but we do laugh. We do love. We do live. Praise God that we are able to be together as we do each of those things. Praise HIM!

Long Story...Happy Ending

Yesterday morning we were not allowed to come into our home hospitals ER. It was in a word...RIDICULOUS. I can't even really go into all of the details except that after having them treat Ash as a patient over the last 5 years to have a physician not give us the courtesy of getting on the phone to explain her reasoning but to have a message sent to us saying, " I would never treat a child under the age of 6 with TPA, tell them to schedule to have her line replaced Monday morning," was RIDICULOUS. There is no line replacement options left to us. THIS IS IT! Honestly, all she had to do was open her chart and she might have had a clue about the patient she was sending away. Anyway, we will attempt to meet with the hospital administration this week and have a protocol or some consistency in care worked out. As a parent it is very frustrating to never really know if they will or won't take care of your daughter. We just need an answer. Either you do use TPA (which we know they do and have on other occasions for us) or you don't. We just need to know where to take her next time.

But...the nurse on the phone relaying the messages told us to go to the other hospital in town. I'm sure the administration would love to know their patients are being sent out to their competition. Anyway, Dave got on the phone with the nurse manager of the other ER and they were absolutely WONDERFUL. Arranged a room to be ready upon the moment we entered the hospital with her. No sitting our waiting exposing her to the population in the waiting room. They took excellent care of her. Asking us exactly how it had been done in the past. They were more nervous than we ever were. I guess Dave and I are so used to it that it really isn't a big deal, but if your not accustomed I can see how unsure you might feel. By the end of the afternoon we did have some blood flow. Not perfect, but some. They shared with us their willingness to care for Ashley anytime and even told us they had gone so far as to write up an entire protocol and place it in her file so that if we called again anyone in the ER could open it up and do exactly what needs to be done to dissolve a clot in the line. Such a blessing.

We have many personal, privacy reasons surrounding the birth of Ashley Kate that have kept us from going to this hospital, but we have to have a care team locally that will help us when we need their help. Yesterday, this team was more than willing where the on duty physician at our hospital was not. That has to count for something.

The thing is that we are residents of Longview, TX. We live here not in Shreveport and not in Omaha. Dave and are not foolish. We know the issues that can be treated here locally and we know the ones that can't. Treating clots at the end of her central line...can. Removing and replacing her central line...can't. Ash has to grow up here. We need professionals around us that are willing to help us raise our daughter for the life span that God blesses her with. There will be lots of plans to do just that being made this week. Something like yesterday just can't be allowed to happen again. Its too dangerous and too irresponsible. We as her parents have to find a team to surround her with that can and will help.

Thank you for your prayers. Yesterday was long, but ended somewhat happy for now. We know more clots will form. Its the nature of living with central lines. Maybe next time we will be able to go straight to get help instead of wasting 3 hours on the phone lines.

This morning...

we are making a call to the ER in hopes that they will agree to shoot an x-ray for us and then to TPA the lumens of Ashley's line. It is still not drawing. It does infuse. It does flush. It does not draw. We honestly to do not believe the line has shifted at all. It is securely stitched on the outside just below its exit point. It is fastened well and in tact underneath a new dressing. The length of the external portion is not more than it has been. We believe there is a clot on the end of the line(very common occurrence with central lines), making the need to bust that up with TPA important.

Our local hospital has indeed used TPA for us on two occasions with no problems. The last time we took her in it was a run around with finally informing us that they did not know how to do that. We in fact knew that was not true because we had been in there and done it before. I even gave them the exact dates of treatment, but they sent us away without treating her.

We need to have an agreement that they will in fact treat her before we take her in and expose her to all that is there. Ash is not well enough to run up there if they will not do anything to help. Administering TPA is a very simple process. They draw up 1cc of the clot buster, we push it into the lumens, allow it to sit for 45 minutes, then draw it back out with the hope of getting blood to return in the process. Its not difficult. Doesn't take a lot of skill. Its just something that is not written for and dispensed outside of a hospital setting.

I am hoping they can help us. Hoping the will help us. Hoping this will work. If it doesn't I'm not sure where we go from here.

Outside of the line issues, I really feel like yesterday was a better day for Ashley. She was awake more, communicated more, and looked a little stronger to me. She had to have a bath and shampoo and her hair braided which takes a lot of energy and although it was hard on her she managed to be up and sitting with assistance and in her chair for about 30 minutes straight. That was really good. I thought her appearance was less yellow than the previous days making me hopeful that her liver is functioning a little better. I could be wrong, but her eyes and skin looked a little clearer to me for some reason. Maybe I'm just being hopeful, but its the beginning of a new week and I might as well start out that way.

Your prayers for assistance with her line are very appreciated. I just hope they will help us here in town today. If they won't then we will be attempting to get her in to be seen in Shreveport in the morning instead of waiting until Wednesday.

Wishing

I guess if I could have a wish granted tonight it would be this: for her line to draw back blood.

If only wishes came true.

I'm praying for her line tonight. Please join me. We REALLY need this line to function. There aren't too many options for us other than for this thing to work.

Breathe...

One breath at a time. That is what I am trying to tell myself to do.

Ashley's line is giving no blood return. Yesterday afternoon there was return. Last night there was not. Breathe. Its positional. Tomorrow it will probably work again. Don't panic.

Today...still no return...in either lumen. Its unbelievable. Really it is. I so desire for a day to just breathe. No worries, no stresses, no burdens, no battles.

We have hep locked both lumens to keep them patent. It was supposed to keep this from happening. Still I'm trying not to panic...except... the only measure of judging placement of this hepatic line was mistakenly left at the PICU last week and now medical records believes they have thrown away the two discs that contain the images of comparison. I have no way of knowing if the line has shifted or migrated out of the hepatic vein. Without the discs to compare x-ray to we are in a bad place.

The line has been "tricky" since it was placed. One hour giving return, the next not, the next morning working again, the next afternoon not. This is why we were doing our best not to panic, just breathe, knowing that in the morning it could be functioning just fine. Except...that it is not. It flushes well, both lumens, just no blood return from either port. I've tried all the "tricks". Have no idea why its not working.

The last few months have been long, the last few weeks just as long, the last few days continuing to be long. Its making me tired. So tired. Knowing that its just going to be getting longer and longer until we come out on the other side of re-transplant is so hard to swallow.

Ash has managed to sleep another 22 hours in the last 24. So scary to see her so worn out. This entire time is frightening.

Medical records just called and confirmed that they did in fact shred our two discs. What now? I guess I'll just keep trying to breathe. The alternative is to stop.

What do I do...

Just received a message that our transplant team will NOT be able to help us get Omegaven for Ashley Kate. I'm not sure what this means, "let her know that we will not be able to supply or help the patient receive Omegaven." It would be nice if the surgeon would speak to me and let me know what happened, where he left it, if the grant was applied for? denied? What the FDA said? if they were even contacted? I'm so upset I'm shaking. I guess we start all over at the ground level and try another team from another part of the country. The most disappointing part to me is that its in our transplant hospital and its being denied one of their own patients.

News Flash...My daughter's primary illness at this current time is this: LIVER FAILURE DUE TO TPN INDUCED CHOLEOSTASIS. If that doesn't qualify for immediate action then I'm not sure what does.

If Ashley Kate is to ever have an opportunity to receive another transplant she must first survive long enough to make it to transplant. If we can't turn this liver disease around (and the only thing we know of with the ability to do that is Omegaven) then she dies. I'm not willing to accept that fate without even trying. I'm just not.

I will be e-mailing Dr. Puder at Boston Childrens this afternoon. It disguists me that this is available to some and not to others. I don't even know what to do.

Captured

We've been home for a whole week. During this time we have managed to capture a few smiles on film. Not too many, not a daily occurrence, but so precious to us. I think that now they have become even more precious to us since we see them so rarely. I would guess we have seen her smile maybe 6-8 times in 7 days. Such a hard realization when her smile was a constant presence in our home. Dave caught her smiling this past weekend. She looked so good at this moment. I love this photograph.

Ash has yet to open her eyes this morning. Still snuggled as tightly as she can be under her covers. I do her cares, talk to her, and kiss her cheeks and she stays sleeping. We were able to wean some of the narcotic doses yesterday and so we are hoping this will allow her some more awake hours during the day. Her lab work once again returned to us with not such good news. Labs were drawn 3 times in a row all 3 times showing us how very sick her liver is. We are starting two new meds in hopes of helping her struggling liver to carry out the bile from its ducts allowing a reduction in her bilirubin level. That is the goal. I'm not sure how adding two new products for the liver to metabolize is going to help it not hurt it, but its what we have agreed to try this week. We will return to Shreveport next Wednesday. Her wounds have almost healed completely. Except for the one on her foot. Its taking longer than the others because of its severity. Hard to imagine how that wound could be more severe than an incision the entire length of her torso, but it was. The wounds from explant and wash out are healed. I still dress them in an attempt to keep the leaking from her new ostomy site on her left side out of the central line dressing on her right side. Its hard to explain, but the gauze and dressings in the "trench" left from explant seem to soak up some before it travels across to the site that needs to remain sterile. Anyway, under her clothing she's a mess, but aren't most of us?

Today is Allie's first volleyball game. I'm excited to see her play. She is super excited about making the team. The A team! She has been pretty confident about the whole process, but I was wondering if she knew what she was talking about. She's never played before so I thought she might be setting herself up. Not sure what I was concerned about. You will probably never come across to kids who are more confident than our Blake and our Allison. They are very sure of who they are and don't quite care what others think about them. They are both extremely athletic and talented and usually do a good job at whatever they set out to do. I'm so proud of these young people. So proud!

This weekend is going to be fun. Soccer, Volleyball, and Baseball. Wow! I'm really looking forward to watching my big kids enjoy what they do. I know that once we are called to transplant that I will be missing out on so much of their lives. I'm trying to be as present as I can for each of them while caring for Ashley Kate. Transplant is something we have to go through to get her back, but I'm not looking forward to leaving the rest of our family behind. Those concerns are for another day. Weeks away from today. I just want to enjoy this time we have at home. So thats what I'm going to do.

Enjoy your day. Soak in the moments you are blessed with and capture as many smiles on the faces of your kiddos that you can. I know I'm planning to.

Tucked In

Ashley Kate is tucked safely in her bed. Its no longer down the hall. It resides next to mine. I can lie in bed and drift off to sleep as I gaze at her tiny face. Its peaceful and comforting and a blessing to see her in her bed instead of the giant hospital bed. I love her so much. I love looking at her so much. I love having her home so much.

Blake has gone to bed. Allie is on her way. Dave is sleeping soundly.

The world is right as long as we are here together. The five of us. Together. A family.

Its been a long day. Ash and I left for Shreveport at 11:30. We arrived home from Shreveport at 5:30. I was half an hour from home when the nurse called to let me know her labs looked even worse today than they did yesterday. She wanted to know if I wanted to turn around to redraw them again or take them in to the lab at the hospital tonight. I chose to the latter. Somethings not right with her lab work. There really is no explanation for the random numbers and levels that have come back the last two days. I'm still waiting on tonight's results hopeful that they look more realistic. I guess we will see.

Tomorrow is Allie's first volleyball game. She tried out at her new school. Somewhere between 60-80 girls. She made the A team! So very proud of this girl. So proud. We aren't really into volleyball that much, but its what you play when you are in athletics...so ...I guess we will be getting in to it. She has a tournament this weekend along with her first soccer game of the season. Blake has baseball games this weekend too. Life is busy. We like it that way. Time with our kids while they are still kids. Before I know it they are going to be out on their own and I'll be wishing our schedules were full again.

We are doing our best to find the good in our days. Holding on to our sweet baby girl and soaking in the moments. She's precious. So very precious. We are one day closer to transplant eval which brings us one day closer to another chance. I'm concentrating on that. Good night guys. Love yall. Trish

Four

Four...The total number of hours our sweet girl was awake in the last 24.

Its called liver disease. Its ugly. Its awful. Its stealing her from us.

Her direct bili is up to 9.4 today. Indirect is just under 12.

Her enzymes are all in the mid hundred ranges.

We NEED Omegavin and have heard nothing of the compassionate use grant. We are waiting while time is running out.

Today's labs were awful.

Tomorrow she has an appointment in Shreveport.

In the morning I will return a call to transplant.

I found joy today in the smallest of moments. Blake lying next to her tiny, sleeping body on the couch. Her legs stretched across him as she crossed her ankles. A kiss from Allie on her sweet forehead as she slept. An "xmo" from her daddy to her. Tiny hands reaching out to me as they signed "hold me" in the brief moments her eyes opened up tonight. Rocking her as I held her close to my chest and breathed her in. These are all moments I fought so hard to have again. I'm grateful she's home. Grateful we experienced them today. Grateful to God for each of the breaths her lungs took today.

Only four hours today. I'm hoping for more tomorrow.

Underneath It All

We hear so many times a day how strong we are. We are told what an amazing job we are doing. We listen with smiles on our faces and pain in our hearts as those around us who are watching our lives unfold share how much Ashley's story means to them.

Underneath it all...truth be told...

Dave and I are falling apart. There is no strength to be found. There is not an amazing job taking place. We are putting one foot in front of the other robotically, methodically, routinely just because we have to. At night underneath the cover of darkness, while our children lay sleeping, our sweet Ashley Kate inches from my bedside, we are falling apart. A sobbing, heaving, crying, bundle of two parents whose hearts are breaking with very little resemblance to be found of what people think they see in us. The pain, the uncertainty, the loss, the everything is so raw. I know she's dying. I see it everyday. I don't say it aloud because the words only hurt my husbands broken heart, but I know he sees it too. He lets me sob in the darkness and doesn't even try to quiet me. He knows its all I can do. Its what I need to do. He holds my hand as the sounds of my cry break him even more.

Still we are trying. Trying to be positive. Trying to stay focused. Trying to find hope. Trying to remain grateful. Trying to keep going as each day brings us one day closer to the only we hope we do have of saving her...Transplant. The thought of it brings me more tears. The knowledge of what we are walking into this four years past the first one brings terror to my heart. It is no easy task. No easy undertaking. It is painful, and miserable, and uncertain, and so much more than I can share. Yet...it is all we have. It is her only hope. We are fighting to give her back the quality of life we know she can have. We have witnessed it. We have touched it. We have lived it. We have breathed it in with her and exhaled gratitude with every one of its breaths.

Underneath the pictures I choose to share in this journal our sweet Ashley's body is dwindling. It is weak and fragile and tiny and broken. There is not a space on her abdomen that is not covered with a bag, a dressing, a bandage, and piece of tape, or a square of gauze. Its in the times were we look underneath the covering of her clothing that it takes our breath away. As we desperately try to find a way to make it all work. Her line dressings won't stick. The scars from all the wounds have mutilated the surface to where I can't find a way to keep it sterile and adhered. Her ostomy bags won't stay on because there is not enough space between the incisions, the buttons, or the wounds for them to stick too. She leaks from every possible area you can imagine. As we change her diaper we gasp as we witness the sinking in of her abdomen to where she is nothing more than skin and bone. Literally skeletal. Where once we found her tummy tucked underneath we can no longer find an ounce of chub or muscle tone anywhere. Her liver is dying. Its obvious. It is struggling to metabolize all of the medications she is forced to take. Her skin is yellowed. The whites of her eyes are yellow. They leak bilirubin. Her nose bleeds a mixture of blood and bili. Her liver is so sore that when lifting or changing her you have to be conscious enough not to touch her in that area. She winces with pain at the slightest of touch. You lift up the top layer of her hair and you find inches of balding scalp where the hair has fallen out over the last two months. Her heel is injured so deeply that healing is slow in coming. If she even had the strength to stand she would not be able to. It is a nasty wound that we are trying to keep infection free the very best that we can. And yet...

We still allow her to live. To go, to experience, to enjoy to the best of her ability. She smiles in the moments that she is awake. Where joy or happiness can be found she does indeed find it. If it be in a song, a movie, a page in one of her books, or the strong arms of her daddy as he rocks her in the chair. She is living because its the least we can do for our girl.

Underneath the pretty pictures and the beautiful clothes our tiny girl is fighting a battle as ugly as it gets. Hanging on with all that she has to a life that she once knew. My heart hurts in ways I wish I never knew, but it loves in ways many can only dream of. Each day I wake up, wipe the tears from my eyes, and wash their stains off my cheeks, as I anticipate spending time with our family. As I care for Ashley and her needs I imagine and plan what I can do to make our home more comfortable, more inviting, more welcoming to those coming back to it in mere hours. I busy myself taking care of my responsibilities and I smile while doing it realizing what a privilege it is just to be back here. I "listen" to the requests of our youngest as she signs to me and I do all that I can to give her what she's asking for. I whisper a prayer of thanksgiving that her mind is alert and able to communicate and I throw in a request for enough strength to make through today. Until I can climb underneath my covers and allow the hurts to escape as I drift off to sleep next to the only other person in this entire world who can truly understand the place that I am in.

Underneath it all we are nothing. We have nothing. Not of our own selves. It is all by the grace of our God that we are making it through this time in our lives. If it appears as though things are going well and as though we are doing a good job I assure it is not us that you are seeing. If you could really see what its like underneath it all I think you might have a different opinion of what you are witnessing.

Full Nights Rest

We did it! For the first time in months we slept through the night! Do you have any idea how amazing it feels to wake up at 6am and know that you are rested? That your baby is rested? An incredible blessing!

The even bigger blessing is that she had no episodes of vomiting through the night. Once she was asleep she was really asleep. Peacefully. She slept through breathing treatments, meds, changes, bag care...all of it. That little one was worn out.

At 6am she opened her eyes, signed "stand up" and "walk", "I want". Cracked me up! If she really had the strength and ability then I would have put my walking shoes on and taken her. She has the desire to get up, her body just doesn't have the strength. She can sit independantly for about 5-8 seconds before falling into her pillows. She's lost so much, but if any child has the ability to gain it back its ours. I've seen her do amazing things in her 5 years.

So today we have big plans. Plans that include the 5 of us just being us and doing what our family loves. I love that. Totally LOVE that. We are feeling blessed this morning. So blessed. Have a great day guys. Enjoy your long weekend and your families.

Smooth Sailing...Ummm...No

We arrived home yesterday evening around 5:30. Ash did ok on the drive until we pulled into Longview and then...she blew. Sweet girl tried to hold it all in and couldn't quite make it. So we pulled over and let her throw up for a good ten minutes or so. By the time we actually carried her into the house she was spent. A lot of activity for a little girl who hasn't been out of the bed for more than a few minutes at a time in months. But...

The look on Blake and Allie's face as we walked in the back door through the kitchen was incredible. A smile spread across that big brother's face as he said," Well, hi" and Allie couldn't believe she was home a day earlier than expected. Although Ash was too exhausted and weak to smile or interact she was happy to be home and you could see the peace spread across her face as we made her a comfortable place on the couch to lie down.

The night was nothing like we had hoped for. It was rough. Arriving home assuming the pharmacy had been able to fill all her prescriptions and deliver them to the office. When it came time to give her scheduled doses of methadone it was not there. Along with all the other controlled subtance narcotics. No fentanyl patches, valium, or methadone. Ugggh!!! Our pharmacy was closed as was her local doctors office who was writing the scripts for us in Texas so that they could be filled and released to us. It was time, now past time, for her doses and she had already begun vomiting and trembling. Dave was forced to call her doctor on his personal cell phone and ask him to come back in to his office to write scripts. He did. Such a blessing...then after going to the three pharmacies and calling three others found out no one in town had it. Next call...the ER to a friend of ours who happened to be the physician working last night. We loaded Ash up, took her in, registered her, had the 2 mg pushed into her g-tube, and then drove back home. Once we arrived home Blake and Allie were already asleep. Ashley and I were up every single hour until 6am. She spent most of the night vomiting.

This morning it was more of the same. Vomiting and running around getting more scripts re-written, two trips to the pharmacy, and then finally getting the right meds for her. They were all late, but now we have them and the rest of the day has gone much better. She has been sleeping for the last two hours. Resting well with no episodes of vomiting. I think tonight is going to be the night we had hoped for last night. Except that the big kids are all grown up and have plans because its Friday night! Anyway, its really ok, our goal is for their lives to continue on and not stop because of Ashley Kate's.

My favorite moment home so far was definitely this morning. Ashley's bed is now in our room next to ours and early this morning both of the older kids came in to greet her. My heart was blessed as I watched them visit with her and chase down whatever she requested. Her requests were funny and random and once they came back with it she didn't want it anymore. Blake laughed at that baby girl and kept trying to please her. I love my kids. LOVE them. Love watching them all together.

Again, life is not perfect. Its not even what we used to call normal...but...it is blessed. We are so grateful. So incredibly happy to have her back home with us.

Thank you for your prayers, your excitement, your genuine well wishes for our family. The support you have shown us is absolutely appreciated. We love you guys so much. Thank you again.

Close Your eyes...

really tight...make a wish...anything your heart desires...

I think she knows!

Yes, sweet Ashley Kate, today is the day you are going HOME!!! You've earned it my sweet baby girl and we are taking you there.

Her smile has returned to us. She is up, dressed, and ready to go. She's signing, smiling, and I swear I see that twinkle in her eye.

When I look at her this afternoon my heart is overwhelmed! God is so good. So very good. We planned on taking our little one home but were so unsure of when we might actually get a glimpse of her again. Before we've even left the doors of this hospital He has allowed her to show up today and my heart is SO encouraged. Just look at this girl. She's ready. She's fought hard and now its time to go home and be a kid again. That is exactly what we plan on letting her do. I'm so thankful this is the girl I'm taking home to Blake and Allie. I can't even tell you how happy they are going to be to see her smile. Its a good day. A really, really good day!

Next Leg

Today we are beginning the next leg of this journey. Ashley's story is turning a page. A new chapter begins.

Home.

Wow. I'll be honest and tell you I had several days the last couple of months that I just didn't know if we would ever take her back to her home. So today is...sweet. A little bitter if I allow my mind to drift off of the good and the unknown drifts in, but I'm concentrating so hard on being grateful for today. Today is enough. Today we take her home. Today.

Ash is a different little girl the one we began the month of June with. She's not the same. Not just physically, but mentally and emotionally too. She of course has a different anatomy. We are all aware her small intestine is no longer. I'm coping with that. As best as we can. Knowing she may or may not receive and survive another transplant. Figuring life out again. A new routine. New meds. New days on the horizon. The mental and emotional parts are the hardest though. Not seeing her eyes filled with a sparkly joy. Not listening to her constant giggle. I believe that as the days progress and her medications begin to wean that she may return to us. I do believe that. Its just not going to be instant. The long and short of it is that Ashley Kate is a very sick little girl. Honestly...that sucks. It just does.

Knowing we have a very difficult road ahead of us makes the homecoming a little less sweet. Knowing it is only temporary is hard. Knowing we have it within our power to make the most of our time is also very sweet. Dave and I could spend our days crying and worrying. Or...we could spend our days smiling, soaking it up, breathing her in, making sure each one counts, creating new memories for our children. That is our goal. I can't promise you that in the quiet hours of the night when the kids are sleeping that tears won't come and that the unsure path of her life won't hurt us. I know that it will happen. But...I can promise you that we are going to stay focused as much as we can on our family and the time we have together. It will be a conscious decision. Blake and Allison know that Ashley may die. We've already had those discussions. We don't need to spend our days focused on what may happen. We want to follow their lead. If they need to talk then we will talk. If they need to just be kids and not talk about it, then that is what we will allow them to do. I think the hardest days of our parenting are looming on the horizon and that is intimidating. It truly is. I pray Dave and I do our job to the best of our ability. I also think that God has given us 3 of the most amazing young people to parent and that He has been equipping each one of them for the parts they will be called on to play. I believe that. I see it in their eyes, in their strengths, in their confidence.

So today Ash is fighting off the symptoms of withdrawal. She is currently on methadone and valuum and fentanyl. She is shaky and nauseated. Its not fun to watch as her body trembles, but I know she can get through this time. I've seen her do it before.

Currently they are working hard to figure out how to get the narcotics released to us. Its a "drug" nightmare trying to go from hospital to outpatient to out of state. They are all controlled substances and there are LOTS of regulations on how it all has to work. Once that is figured out then we will be headed back toward Texas with our gherkin. My kids are going to be THRILLED!

Thank you for your prayers. It may be a quiet weekend from us. Just enjoying our family being together again, watching our kids do what they love(you know that includes a little baseball), and figuring out how to live out this new chapter in our lives.

P.S.

Please don't mention our homecoming to Blake and Allie. I'm hoping to pull of the surprise and be sitting there with Ashley Kate as they come home tonight. Its going to be awesome if it all comes together. They aren't expecting her today so this could turn out really fun!