Laughter

I woke to the sounds of her laughter this morning. Sweet, precious, giggling filtering into my room from down the hall. Oh, how I love to hear Ashley Kate laugh! She was alone in her room. Alone by our standards, but of course dinosaur was there with her and he was "hopping and flying" above her head as she lay on the pillows waiting for me to come in and greet her. His antics had her cracking up and as I stood outside the door away from her view I was cracking up too. She is precious. At 5 years old she is the most precious thing I have ever known. I love her so much. Each morning as I walk into her room she grabs dinosaur by the neck, squeezes him to her cheeks and kisses his nose as she waits for me to say, "Ashley, you looooove dinosaur and mommy does too.. I looooove dinosaur and I looooooove you!" Its the same every single morning.

Last night we sat around the game table playing a round of farkle to see who would have to wash the dinner dishes. We listened to the antics of our Allie and her quick wit and we laughed. We laughed so hard at that girl. She is beautiful. She is talented. She is smart. She is athletic. She is FUNNY. So funny and we enjoy laughing with her every single day in this house. Allie may be a lot like me, a whole lot like me( Dear God gives us all strength), but she has her daddy and Blake's sense of humor.

Before bed Blake came in from an evening at his Allison's house and laid his tall 15 year old self across the foot of our bed. We listened to him for an hour talk about a whole lot of nonsense that had the two of us cracking up. That kid can put a twist on anything to make it funny. I love to talk with him. Especially at the end of a day. He has so much to say and without fail I find myself laughing with my son and soaking up the moments of him in our home. Time is flying by. Absolutely trucking by at record speed and more than once last night as he talked I found myself wishing I could freeze that moment, that image, that conversation.

So much has been going on the last week. Life is busy. The kids are so involved and so active. I love this life we are living. We know its temporary. We realize our time here in our home together is slipping away, but for now, for today we are living as though it could last forever.

Blake got sickly on Friday at school, woke up with an eye infection on Saturday. Allie injured her knee last Wednesday, managed through school, a basketball game, and a time trial. We really believed she had just strained it a little, but for the most part a small strap brace underneath it had fixed it. Yesterday in the last minute of volleyball practice she went down on it the wrong direction and injured it once again. In the same manner as she did last Wednesday. She's home today. Orders to stay off of it for at least 24 hours, allowing the swelling to go down some. This afternoon she will be having it examined, x rayed, etc. and then put in a large brace for support. Lots of fun! She's upset because there are more time trials to be run this week as they choose the track team at school and she's in the middle of her volleyball season. Ashley Kate for the most part has bounced back beautifully from her cold and the infection in her line. She still has an occasional cough, but her swelling, her yucky nose, her fevers, etc. are all gone. She is happy and playing and waking up each day ready to see what she can get into. She has another week of IV antibiotics and then we will re draw cultures to see if her line is clear for the first time since it was placed.

In other news, Ashley Kate's TWO FRONT TEETH have fallen out. Its crazy!!!! She looks like a hillbilly and its almost too much for me to take in. The teeth are falling out because of her lack of nutrition, which means that they may never really grow back in. She is 5 and 1/2 years old and she has lost 6 teeth! I don't think this is normal. I was visiting with a group of friends the other night and mentioned that I could buy new hair(since she has lost most of hers) and new teeth and they all just laughed. I'm not sure that they believed me, but I am serious. You can. You can buy hair and teeth for kids(have you ever seen Toddlers and Tiaras?) and if those teeth don't grow in I may be forced to do so! I don't know if I could really afford either, but I'm not opposed to throwing a garage sale to raise enough money to provide fake teeth for my girl. Ha! Don't judge, just go with me on this. I'm just thinking outside the box. She's beautiful and the thought of her being stared at because she has no teeth left in her mouth and only half a head of hair is just too much for me on top of all the other issues we have going on...just sayin.

Wow, see what happens when I don't post daily. These things get out of hand! Just a peek at what has been happening in our world.

Laughter, injuries, illness, and border line insanity over the loss of two front teeth.

Your Prayers

Your prayers are needed this morning for a little boy who is fighting for his life. I'm asking you my friends to pray, once again, for another family, another child, another transplant patient. Please, please take a moment of your morning and lift Cooper up in your prayers.

Thank you for loving our children. They are miracles and the strongest warriors I have ever known.

She didn't miss it

Last night I picked up our family laptop and when the screen came into view the page was on a list of of old video clips. I'm not sure who had been using the computer before I sat down too, but if I had to guess it would be our Allison. She tends to gravitate toward it a little more than the rest of us. I think its the whole ,"I'm a girl, who will be 13 in a few weeks, and spending all day with my friends in school is just not enough time to talk about all we have to talk about", thing. Just a guess. Anyway, as I clicked on the highlighted video a clip of our tiny, 15 month old, post transplant, Ashley Kate appeared sitting on the lap of her daddy. I know I've shared this clip in past years so you may remember the one I'm referring to. Anyway, as the video played on the screen I heard her speak in that tiny voice, "my mama" and my eyes filled with tears. I watched it several times and then called the boys over to see what I saw. Dave and Blake stood behind me, Blake's chin resting on the back of the chair and Dave's hand on my shoulder. We all stood there smiling so wide and goofy as we played the clip and watched and listened together. How precious. So priceless. That 40 second clip is all that remains of our little girls voice. Thank you God that we have it. Thank you so very much. As the clip plays I hear myself say, "Ashley, do you love your momma?" and her little head nods yes. I hear myself say, "Ashley, does daddy love you?" and she nods so emphatically, "yes". What joy swelled in my heart. What pain pierced though it too. As she nodded her head I could hear Blake laugh out loud as he stood behind me. This was something he hadn't seen in years and the joy it brought to him at that moment was priceless. Again, Thank you God for giving this piece of video to us.

I continued watching several clips of her from that time in her life and found myself crying as I said, "we missed it". I watched for quite a while thinking "we missed it all". All those things we use to lie in bed excitedly talking about her learning to do. We missed it. Then as quickly as the Holy Spirit can do I was reminded that we haven't missed a thing. Not one single thing. We have been there for it all. Every moment since the judge signed that order we have witnessed. How very blessed we are. I have seen her triumph over obstacles that people thought she never would. I have seen her grow up from that tiny baby girl into this beautiful five year old little lady. I have seen her learn to communicate in other ways than a single voice coming from her lips. I have seen her learn to walk, lose the ability, and then gain it again. I have seen her struggle against odds so big I thought they would crush her and yet she wins. Every time she wins! I haven't missed a thing. More importantly, neither has she. She didn't miss it.

Each and every day I witness Ashley Kate learn more and more and more. Her little mind soaks up the world around her and she grows in her life experience. She lives so fully, so intentionally, so beautifully. This child is amazing. So amazing to spend a day around. At first glance you may assume there are so many things she can't do, but within minutes you become astounded at all she does do. Not a day goes by that Dave and I are not reminded about all of her abilities. We are so grateful to have all that we do have in Ashley Kate. We are blessed beyond the world standards. We have been given a gift in Ash. She teaches us to overcome. We have learned to let nothing keep us from achieving the goals set before us. The big kids know there is nothing to big for them to accomplish because they have watched the tiniest one of us all fight back with a vengeance. Ash hasn't missed it. She hasn't missed any of it. Instead she is getting it. "Getting" so much more than I do in those rare moments when I find myself grieving over the loss of normal in her life.

This week Dave and I were finally convinced to purchase an Ipad for Ashley Kate. We watched the world of learning open up to many other children through its use. We debated for a while, but in the end I am so thankful we were able to provide this tool of learning for her. It wasn't purchased because its the new thing. It has nothing to do with being "with it". It is all about communication and learning. Through the years we have looked into communication devices and the prices are astounding. Not really affordable, but we were so willing to figure it out. This tool has changed all of that for us. Its affordable. Thousands of dollars less than the other devices we were looking at. Many, many families of disabled children are able to afford the Ipad. We are so grateful for this technology. Its going to change Ash's life. If you could see our girl maneuver her way around it you would be amazed. We have loaded it with a sign dictionary and tutorial. With writing programs and communication programs allowing her to answer questions with the touch of a button. It is so full of promise for Ash and we are so excited to watch her world open up even more before her eyes. Its been a blessing to us and we've only just begun to scratch the surface of all it will be able to do in Ashley's life.

So if you think about it, she didn't miss out on anything. My other kids don't have Ipads(although they would both LOVE to have them). Dave and I don't have an Ipad. I'm sure he might enjoy one(its not really my kind of thing). Ashley Kate is the only member in our family to own one and if you look at life through this lens then I think you would agree, she's not missed it. No, she's the only one of us who truly gets it. I have a lot to learn from this little girl of ours. Everyday, she teaches me something new. Like how to turn the silly thing on! Oh, how I love this child!

Trying to Keep her going

Tonight I had the honor of watching Blake play basketball in Nacogdoches. It was an awesome game. He played great as did his teammates. So fun to see them win. So fun. My favorite part of these away games is the drive home. Sounds silly I'm sure, but its on those drives home that I get to talk to my 15 year old. Its the highlight of my week. We talk about everything from what he'd like to eat to what is happening in the world of high school freshmen. I just love this kid. Absolutely love him. Tonight we spent a lot of time talking about baseball, Valentine's Day(making plans for his girlfriend. Lucky for her he has a mom who can remind him that its on the 14th and NOT the 16th! He cracked me up.), music, and Ashley Kate. We always seem to visit about Ashley Kate on these drives.

I was playing phone tag all through the game with transplant, pediatricians, surgical teams, and the lab. It was an array of phone calls with lots of trying to figure out what is actually happening inside that central line of hers. On the drive home I was relaying to Dave over the phone about what I think everyone was talking about. To be honest I'm still a little confused.

At the end of this phone call I took a deep breath, tried to organize my thoughts, and then said to my son, "I'm just trying to keep her going. Going long enough so she can grow up."

"So far mom, I think your doing a great job of that."

Little does he know what that comment did for my weary heart. His confidence in my ability to take care of his baby sister and his belief that we are in fact doing what is right was the confirmation my heart needed to hear this week. I'm telling you I LOVE this kid. LOVE, LOVE, LOVE him. He has a way of making my heart smile as we travel home each week on those dark stretches of highway.

So blood cultures were drawn last Thursday to see if her line infection had cleared after treatment. Saturday morning something grew out. Everyone, other than Dave and I, believed it was a contaminant and not an infection. She was symptomatic. Text book symptomatic. After two doses of treatment her clinical presentation began to improve. Sunday passed. No ID, no more growth. Monday passed. No ID, no more growth. Late this afternoon, more growth in the other culture bottle. Clinically, she presents just fine. Now we are being informed that 5 days after drawing the culture a gram negative something has grown in the second bottle. So we have a gram positive in one. A gram negative in the other. Not good news. Not good. It was decided since her presentation is good, and since I have already scheduled an appointment in Shreveport tomorrow with that team to check her for a possible pneumonia developing from what started out as cold symptoms, that we could keep her home tonight and wait until they put their eyes on her tomorrow. What does all of this mean? Well, its confusing. Both cultures may not even be accurate. We were out of town when the infection was discovered and were not able to draw a second set of cultures for comparison. We had to make a tough decision. Wait on treatment and possibly lose the line until we could get new cultures drawn, or go ahead with treatment, get a jump on the infection, and help Ash to start feeling better. We chose not to wait until making it home to draw new cultures. We began treatment to try and save the line immediately. Now we are dealing with only one set of cultures and not a very clear picture of what is going on.

So all of this equals the confusion, the multiple late in the day rounds of phone tag, and my comment to Blake tonight that I am just trying to keep her going long enough for her to grow up. UGH! Some days are just hard. Really hard.

Tomorrow we will go back to Shreveport for a clinic visit so the docs can put an eye on her. I just want to be sure this is a cold and nothing more. She looks so swollen and heavy and I want a chest x-ray to make sure nothing is brewing in those fragile lungs. Ash is actually feeling better this afternoon and evening. She's looking much better than she has in the last couple of days. I'm hopeful this trend will continue until she is back to her happy little self. I find it hard to imagine her having a gram positive and a gram negative infection in her one and only life line. Looks like tomorrow we will be adding coverage for both. Just in case the cultures are accurate.

It never gets easy, but I can assure you its always worth it. She is so worth it.

Grateful

We spent our weekend in Dallas watching Allison Brooke's volleyball team take another impressive 2nd place. It is their second tournament and in both they have made it all the way to the Championship game. She is learning so much about the game and having a really great time. We are so proud of her and we are really enjoying watching her play the game. Club volleyball rocks!

I shared that Ashley Kate had gotten a really nasty cold last week. She woke up with it Thursday morning and it lingers still. Not improving much at all. We finally received orders last week to draw cultures from her line to see if it had cleared from the line infection we were treating her for. She was on coverage from the placement of the line for the next two weeks. It took us a full week to get the orders since our lab had a rule change and refused to accept them from an out of state physician. Lots of red tape, but finally orders were sent and we drew the cultures Thursday morning. 24 hours later no growth on the cultures. By Friday evening we were in Dallas with what we assumed was just a cold since she had a cough, runny nose, etc. Ash struggled through the night although all vitals were stable. Heart rate a little elevated, low grade fever, oxygen sats at 98%, respirations low 40's, blood pressures normal. I felt like something wasn't right, but still cultures were clear. She was vomiting, but Ashley is always vomiting since her ex-plant.

Dave and I were suspicious that her line was infected, but without growth there is no proof and so you continue on doing the best you can until something grows. We called early Saturday morning and the pathologist confirmed our suspicions but had just created the slides and had not yet looked at them to see what was there. A few minutes later she called with the news of a gram positive. She really believed it was a contaminate, but we assured her Ash was symptomatic and that we felt an infection was indeed there. When you have a central line any fever whether low or not points to infection. As does vomiting even though it is the norm for our Ashley. We just know her and we know she wasn't right. It was a little more than a cold by Saturday.

So the title of this post is grateful. What you may be wondering am I exactly grateful for in this case? A sick baby, a central line infection, a head and chest cold. None of that sounds good does it? Its not, but as I walked through this stressful situation I found many things to be grateful for this weekend. First and foremost I was grateful for gram positives. Gram positives means we can treat her at home. Gram negatives means they make us automatically admit her until cultures come back clear. The LAST thing I wanted to do was admit Ash. So I was so grateful to hear the word positive. Secondly I was grateful that Dave and I have become seasoned, confident, care takers of our girl. We didn't need to panic. We know her line is a last result and we know how serious this is for her and for us, but still we have confidence that we are equipped to take care of her. I won't say we weren't the most stressed out parents in the entire sports complex this weekend on the inside, but on the outside we were holding it together as we worked the phones to get the meds and supplies needed to take care of our youngest daughter while our oldest daughter was able to maintain her normal schedule. Thirdly I was so grateful our transplant team trusted us to take care of her locally and they made the calls to our local physician in Longview to get the ball rolling for us. So grateful! Our Longview physician did a great job at quickly getting orders to our home health in Houston for us. Our team in Houston called the local Dallas branch and they actually drove IV antibiotics to our RV there in the parking lot of the sports complex. We learned of positive cultures around 9am and by 4 pm her first dose of vanc was infusing. I was so grateful! So grateful!

Had we taken Ash to a local ER or driven her home to Longview or to Shreveport there is no way she would have had IV meds running by 4pm. The fastest way to care for her infection was to get the meds to us and get them going. Wow, sometimes God still amazes me. Even after all He has done over the last 5 years in our lives I still stand back and look at His direct work in the life of Ashley Kate and am rendered speechless.

This morning I see improvement in her infection like symptoms. Her cold on the other hand is getting worse. She is sick. Not feeling well at all. Her smiles have faded away and she is overall pretty miserable. To see her struggle is so heartbreaking for me. A cold for a transplant patient is so much more than just a normal cold. It can linger for weeks and be so, so awful. This one seems pretty nasty so far.

My big kids are amazing. Able to keep it together when things around them start to spin out of their control. Out of our control. They just keep on keeping on even when life gets crazy for Ashley Kate. Allie walked onto that court as if all was well in her world even though on the inside she was worried that once she came off of it that Ashley Kate wouldn't be there. Not a single person on her team is aware of the frailty of the life of her baby sister and the constant threat of losing her that Allie lives with. She just holds it together. There were a few hours in the in between that one of our teams was telling us to take her to the ER at Children's in Dallas. Dave and I knew better than to do such a thing. If it was at all possible we were going to avoid that scenario. If they wanted her admitted we were going to drive her back to Longview. The ER at Dallas Children's is NO place for a transplant patient. We've been there many, many times when Ashley Kate was a baby and her team of physicians were located in Dallas. Its a nightmare for any parent to be in that situation, but an even bigger nightmare for parents of a very complicated transplant patient. The team that was advising us to go even mentioned that we would have to convince them not to pull her central line. Honestly it would have been an awful fight to get the residents there to listen to us, trust us, and hand us over to an attending in a timely manner. Its how it works. Trust me, we've walked this road for a long, long time. My fellow transplant families in the Dallas area would agree. So my gratitude toward our physician here in Longview is more than words can even describe. He was so awesome and spared Ash from enduring a lot of unnecessary this weekend.

There are times in our life, especially lately, that I feel as though we live on a different planet than the rest of the world around us. I sit in a sea of faces, like at the volleyball tournament, appearing to be concentrating on nothing more than my 12 year old playing ball. When in reality I am consumed on the inside with thoughts of where the next few minutes will be taking us. I feel as though I am a foreigner in a land where no one else speaks my language. My heart is heavy with the weight of her life and death and yet I sit around listening to such silliness come from the hearts of my peers. I'm not judging, please don't mistake my words. I'm simply saying that I feel out of place 99% of the time. Like its me who has the problem not any of those around me. Its such an odd place to be. I'm learning to live in this new land. I'm learning how to cope with everyday life while the bigger issues of life and death looms over my head.

On the drive home last night as our 3 kids slept in the car Dave and I tried to discuss this new place we have found ourselves in. I've been thinking about our conversation this morning and what stands out the most is the advice my husband gave to me. "Try hard to concentrate on today, the now, and enjoy every minute of it. Don't allow yourself to think about the tomorrows. The future is not where our focus needs to be at this time." He is so wise. Today we are home. Today we are raising our 3 kids together. Today she is alive. Today she is safe. Today holds so much for us to enjoy. Today is enough. The tomorrows are going to be here soon enough. Keep my eyes focused on our today and don't allow anything to steal a moment of it from us.

This post got really long. So sorry about that. If your still here reading this sentence then I'm going to say thank you for putting up with all of that. More than anything I just wanted to say I was grateful for the work God did in our lives this weekend and for the provisions He made to take care of our Ashley. She's sick, but she's home sick and not in a hospital an hour, 2 hours, or 14 hours away from her family.

I'm looking forward to clearing this infection, this cold resolving, and our happy Ashley returning to us. For today though she's not feeling well and is tucked under blankets in the play room watching Thomas the Train and Dinosaur movies.

Thank you for your presence and for your prayers. Among it all my heart is still grateful.

Friends

Last week we had the honor of hosting a dear friend in our home whom we met through Ashley's journal. What a blessing!

Just wanted her to know what a blessing she has been to me, to Ash, and to our entire family. I love ya and miss ya! Thanks for walking along side me during those tough, tough days and for wanting to witness our lives during the everyday, mundane too.

Love the pic!

Clarification

First let me share that Ashley Kate woke up this morning with a cold. Its yucky and she is miserable. Her left eye is swollen and draining a grayish color gunk and she is sneezing, stuffy and runny nosed, and feeling miserable. I hate that my smiley girl is so, so fussy. Your prayers are appreciated for her joy to return. We have cultures pending. Hoping and praying its a simple cold and nothing else.


So I feel the need to clarify. There are times when my words, thoughts, feelings, emotions are misunderstood.

I am angry. I shared that. Honestly. I am not angry at our surgical team. I'm not. I'm angry about the situation we find ourselves in and about the way the system is required to work. Its not a personal anger toward anyone for doing anything wrong. They have done nothing wrong. They are doing their jobs. Doing it according to the guidelines they are given. It doesn't make it any easier on our side of this issue though. As Ashley's parents we are hurt and angry and frustrated that we even have to provide proof, evaluations, letters, etc. of "quality of life".

I fully believe if she were a speaking child and a mobile child that this would not be an issue. I just do. Unfortunately, she is neither one of those things and therefore it must be decided and "proven" that her life has a measure of quality that is, for lack of better words, worth saving with a very valuable set of organs.

Dave and I have considered having people write letters and including thousands of them with our developmental packet. Truth is though they wouldn't read them. They aren't interested in emotional pleas for my daughter. They are interested in professional evaluations and opinions of whether or not Ash has a quality of life. Still though it is tempting to just flood the center with thousands of letters from people whose lives have been impacted by the quality of Ashley Kate's life.

One of the questions asked to us was, "Does Ashley get out of bed in the mornings." Well, how do I answer that? Do you mean does she lie around and spend her days in her bed? Of course not. Or do you mean does she get herself out of bed each day? Of course she doesn't. She can't walk. I get her up each morning, dress her, and carry her to the play room for a full day of play. Its all a matter of how you look at it.

I'm not sure exactly what they want from us. When asked it was answered, "proof of quality of life".

I'm trying to figure out how to prove that.

If you feel led and want to participate you are welcome to send letters to our office and we will compile them in some way to do our best to let the team see that our sweet girl does indeed have a very full life that is packed to the brim with quality.

We don't give out our home address for reasons I'm sure don't need explaining, but for those of you who have asked you may use this address 101-B Woodbine Place, Longview, TX, 75601. Just put mine or Ashely Kate's name on the envelope and it will be brought home.

Your support, kind words, and prayers are carrying me at this time. I truly appreciate your presence here in this place with us. You guys mean the world to us and over the years we have grown to love you so very much. Thank you for walking the journey with us. Even through the rough patches.

Proof

I just got off the phone with a transplant coordinator. I'm shaking. Trembling. Crying. My heart is racing, my mind is too. I hate this! I hate all of this!

Many of you have asked if they have agreed to re-transplant Ashley Kate. The answer. NO, not yet. Not without proof. Proof of what? Quality of life. They want us to prove to them that she has a quality of life. Their words not mine. Please don't tell me that I have misunderstood the request for the developmental packet. It is exactly what it is. A proof of her quality of life.

"Why" I asked. "Will they honestly deny her if the "letters" don't say the right things to "prove" to them that her life has quality?"

The answer was, YES. They will.

So they are waiting on us, and I'm angry and have refused to ask her teachers and therapists for more letters. They spend such a small amount of time with her. How can they say the "right" words to prove that she has quality of life? Honestly, if anyone can prove that it is US! We are the ones raising her. We are the ones who spend every hour, awake and asleep with her. Let us write the letters. Let us show them.

I don't even know where to begin. I don't. I'm so emotional. So upset. So ready to fight the whole d_____ world over this. My daughter deserves to live. Her life is FULL of meaning, and promise, and quality.


I'm afraid of them. There, I said it. I am afraid of the power that our transplant team holds. I am afraid of what is going to happen to Ashley once she is transplanted. I have more questions. I need more answers. "We will figure that out once we get to it" is not enough for me to lay her tiny body down and risk her life with. Make a better plan. If this happens, we are going to do this. If that happens we will try that. I need more if I am ever going to have any sense of peace in this situation.

I'm praying for peace. I have yet to find it.

Ashley Kate sits at this very moment rocking her dinosaur in the play room. She is humming and "singing" him to sleep. She is five years old and that is exactly what five years old do. They love, nurture, take care of, and pretend with their "babies". Tell me thats not quality of life.

I have been so hurt, so offended, so angered by this entire process. I don't give a crud, if she ever walks, talks, or eats the way other kids do. It is NO LONGER IMPORTANT. Is that what you mean by quality of life or a life that has meaning? Guess what? Her life has more meaning than mine ever has or will ever have. She has done more to change this world, done more for the kingdom of God, and done more for my heart than anyone else ever has. In my opinion that is proof.

Please pray for us during this time. Please. What do I even begin to include in this stupid packet? I guarantee you it will include more than just letters from professionals. How about letters from her parents, her siblings, her family? They better get ready because if I ever stop shaking long enough to put a packet together they better find a few hours in their busy schedules because its going to take several to get through it.

Please forgive my anger. Mess with me and my life all you want. I don't care. Just don't mess with one of my kids or my husband. I will protect and defend them. I feel as though this is what I am being asked to do for my youngest daughter. Protect her I will.

Phantom Sounds

Last Thursday I slipped out of town to attend the wedding of the daughter of one of my dearest friends. We've been friends for half of my life. Since I was eighteen to be exact. Over the years I have watched her daughter grow into a beautiful young lady and Saturday I had the honor of watching her become a bride. It was an amazing experience. So beautiful, so emotional, so precious. This morning I drove home.

I spent 4 days away from home, setting up, attending, and cleaning up after the wedding. I have NEVER spent that much time separated from my sweet Ashley. Although I enjoyed the event and the honor of being part of the team who helped create the fairytale experience, it was some of the hardest days I've ever spent. I would catch myself hearing the voice of my sweet girl. Her cries, her laughter, her humming. It could happen to me at anytime of the day or night. There were even times when I thought I heard her cry and I would stop arranging center pieces and walk away to check on Ash. I felt so silly a few steps on my way as I would snap back too and realize she was miles and miles away happily playing in our home. It was one of the oddest experiences I think I've ever had. I lay my head down at night to try and sleep and the sound of phantom alarms would keep me awake all night. I got up, walked through my sister's home searching for Ashley Kate and her IV pole to silence them. Again, I would catch myself and realize she wasn't with me. She was home with her daddy. Everything was fine. I missed her so much. Deeply, deeply missed her. There was an emptiness and an ache inside of me the entire time.

Last night I spent one of the longest nights of my life. The nightmares in combination of the phantom sounds haunted me for hours. I couldn't shake the images of memories past and the hurts of transplant. I would close my eyes and see the horrors of our past experiences, hear the codes go out across the hospital floors, find myself sobbing as if we were back in those moments begging for the life of our Ashley. I would wake and cry uncontrollably realizing we are going to be walking the same path that I was dreaming about. How have we ended up back in this place? How are we going to live this part over again?

There are moments in life that you sometimes wish you could relive because they are just that wonderful. There are also moments in life that I would never, ever want to experience again and yet our future holds them for our sweet girl if we are some of the lucky ones who do in fact receive that call. There is such a turmoil of emotion swirling in my head again and again on a daily basis. Every night as I close my eyes the images of my daughter fighting for her every breath return to me.

Ashley is so alive today. She is so happy, so content, so amazing. She has joy in her eyes and her days are filled with happiness instead of pain. If this life of hers is to go on she must return at some point and re-enter the fight for her life. I can hardly believe we are having to start over.

I don't know when we will have Ashley listed again. I don't have the answer. Dave and I don't have peace about returning for transplant at this time. We seem to find more peace with the idea of allowing her to enjoy her days at home. At least for today. We WILL list her for transplant. We don't know how much time we have in which to make our decision, but for now we are waiting and watching her grow.

I'm so very happy to be home sitting a room away from her and hearing the sounds of her laughter filtering in here from the play room. She has a new dinosaur. Its the ultimate of all dinosaur toys ever made. Her Aunt Kathy found it for her and knew she had to have it. Needless to say, she loves it. The roars are mixed with giggles and they happen to be the sweetest sounds I think I've ever heard.

A few more

Ok, you convinced me to answer just a few more questions today. I'm sure I'm leaving some out. As a matter of fact I know I am. I just thought I would pause real quick, snap the couple of pictures you requested, and tackle one or two more.

1. What is the reason Ashely Kate does not speak? Did she ever? How did she learn to sign?

Long story, but quick version here.
Ashley Kate was 14 months old at the time of her first transplant. Before leaving for transplant she could say, "my mama". They were her only words, but they were the sweetest sounding words ever spoken. Her voice so tiny, so sweet, so beautiful. We would lay at night listening to her chant over and over again, "my mama, my mama, my mama". Never in my wildest dreams did I ever think this would be her only words ever spoken to me. Never did I imagine she would not have the ability to speak to us. In January of 2007,at 18months old, while still recovering from transplant in the PICU things changed very suddenly. One minute Ash was on my lap and we were reading a book and she was saying, "mama, mama, mama, " and the next she was struggling to breathe. She coded that day as a needle inserted into her pericardial sac to remove fluid build up accidentally went to far and pricked her heart. It stopped. They did CPR, chest compressions, etc. for 10 minutes. Ash lay on the vent and I begged them to tell me she would be back. I wanted our baby back. No promises could be made. Ash did come back to us. Her voice did not. Thats the story. Mostly anyway.

She learned to sign by watching Signing Time DVD's, looking through their books, and studying the flash cards. She asks all day long by pointing and tapping at pictures in her books what the signs are for different things she doesn't yet know. I stop what I'm doing, run to the computer, type it in and show her. Then she knows a new sign. Its a never ending process of learning. She currently uses approximately 200-250 signs to communicate with us. None of us are fluent in sign.

2. Where did the swing in her playroom come from? How did you put a swing indoors?

Fun answer. My imagination. I dreamed it up when trying to imagine what Ashley Kate might wish for. The playroom was our request for her Make a wish. Make a wish agreed to have it painted for us. We chose a friend of ours here in Longview who is an amazingly, talented artist to come in and paint it for us. She also created the tree from our vision and David made and hung a swing from its branch. Actually its hung and bolted through the ceiling, into the attic, on the rafters. Its beautiful! She loves it. The artist brought our vision to life for us in this room and it is where Ashley and I spend most of our day. She loves to be in here. We also use the room for her therapy. Her therapists come to us, rather than us taking her out to therapy. They work with the tools we have in the room. A standing bar and mirror(gifted to us from our local Ambucs group whom we love!), parallel bars, the swing, therapy balls, walkers, gait trainers, wedge mats,etc. We use most of her own items so that we don't have to worry about germs from other house holds.



The play room is a work in progress. Painted as her Make a wish, we have slowly added the remainder of the room as finances and time have allowed. The window seat was finished out by our friend the artist who also can sew! My mom and sister gifted us with the sheers in the windows this summer. Dave built her shelving unit, from a pottery barn image, this fall. Her rug I picked up in Canton. The rocking chair was a birthday gift from grandparents on her 4th birthday and it was painted by the same artist. The table and chairs were last years Christmas gift from grandma.

Everything but two items from our original vision are complete. We still would like to have a fiber optic star ceiling put in for us to lay under with Ash at night. She loves the stars! I also plan on installing a pair of interior french doors so that the room and all of its toys are not seen as you enter into the foyer of our home from the front door. Like I said, a work in progress!

We love it!


3. I get asked this next question often. How do you keep all the medical supplies organized?

This is obviously asked by other families dealing with similar circumstances to ours. Each week we receive a minimum of two large boxes filled with supplies. Some weeks we get up to 8 large boxes. We have supplies running out our ears. Literally!!!

I keep them in the laundry room closet, the kitchen drawers and cabinets, her closet, her armoire and here:




In this nifty little organizer. It was a gift to us from Dave's parents. It was originally a hardware holder from the old Target here in town. My mother in law bought it from them to organize small craft supplies in her shop. They are moving soon and we thought it would be perfect for use in Ashely's room in an attempt to keep most of her daily supplies in one place as opposed to running all through the house at all hours of the night trying to find pieces.

I would have to say this has hands down made our life MUCH, MUCH simpler. It has been the biggest blessing. As the boxes arrive I take them to the nursery, place the pieces in the bins, put the over flow(yes we have a lot more supplies than what you see fits here in this photo) in the armoire and closet, then toss the box into the garage.

This has been the best thing ever given to us. Besides our children of course. I wish I could locate one for every single family living a life similar to ours. It is that wonderful.

4. How did we choose Ashley Kate's name?

Well, all I know is that we knew we liked feminine names for our girls and masculine names for our son. Blake is a Blake because it sounds so guy like. Allison is an Allison because her daddy thought it sounded very pretty and it would never be mistaken for a boys name. Ashley came about in the same way(although I do know some boys inherit the name of Ashley. No judgement coming from me:). Her full name is, Ashley Kathrine Adams, the Kathrine being named after my oldest sister. Who happens to be an amazing person! To say Ashley Kathrine is quite a mouthful and so we have shortened it to Ashley Kate. Always have referred to her with both names, although I'm not sure why because we don't use Allison's middle name which happens to be Brooke when talking to her. Anyway, thats how and why we call her what we do.

I also love the fact both girls names start with an A, and to be honest if I ever had another boy I would make sure his name started with a B. Not sure why, but I would.

Not sure if you noticed this about me or not yet, but I also LOVE to see Ashley Kate embroidered on just about anything that she owns. It makes me smile!

Thats all I've got time for today. Just a little more housekeeping on the old blog. I've got to run.

Thanks Ali!

A reader sent me a link to where you can buy the "dinosaur". I'm so happy for those of you who wanted to know. Just go to toys r us website. It is made by Aurora and it is called the legendary blue dragon. Just put that in the search bar and you will find him! Its only 19.99!

Hope this helps:)

Answered questions

There are lots and lots of questions asked us every single day by many of you and so today I thought I would try and answer a few. None are that earth shattering. Just some housekeeping type issues that people are asking about.

1. Why are there no commenter's or supporters on this blog?

I'm so sorry it may look that way to those of you who are new here. The truth is that thousands and thousands of people read, pray, and comment. We have chosen to keep those comments private and confidential. In the early years of this journal we had them posted and everyone could read what everyone else said to us. Many, many times this got out of hand. Their were arguments, again and again where some defended us and others tore into us. It got ugly on several occasions and it caused a lot of discourse and pain. The best thing to do was to enable public comments and have them sent to my personal email. That is where your comments now go. Since making it private, you have been able to open your hearts to us with a freedom we rarely ever saw from you. It upset a few not being able to read what others had to say, and for that we apologize. This has been a much better, much healthier way for us to read what our commenter's what to say to us. Please don't feel sorry for us. There is no need. We appreciate each and every reader who loves our Ashley and prays for her. Your comments are welcome as long as they are supportive and constructive. If they are not then we ask people to leave them t themselves as words can do a lot of damage and once said cannot be taken back. Thank you for your concern and your support of us.

2. What style of central line dressing do you use?

Cathy, we too use Coram out of Houston as our supplier and they have sent us everything they say they have as well. We have yet to find what we like. We used to use a split, IV, tegaderm that had a white fabric style border around it that worked the best. They say they can't get that for us so we are making the best of the situation. Her dressing is very complicated since I secure it like her life depends on it. I guess it actually does. I use the rectangular shaped dressing they send in their kits that has the tiny slits cut into it? Does that sound familiar? After sticking that over the actual site I make a loop with a strip of the tape around the immediate portion of the catheter that sticks out of that tegaderm. Then I coil the catheter so their is no extra length to get caught on anything and I stick another rectangular tegaderm over that. This one has no slits cut into it. I then use the strips of tape that come on the tegaderm to secure the extending lumens not once but twice. In the end I have only the end of the lumens out of the dressing making it as short as possible.

We have tried to use the coiled tubing with her to give her more freedom but for reasons unknown and unexplainable she is TERRIFIED of it. Honestly, she screamed like we have never seen the moment we hooked it to her. She was so scared she shook and trembled and her reaction was out of control. We decided it best to not use it. If I have it lying around and she sees it we get the same reaction. There are some things that don't make sense to us and we just keep on keeping on anyway. This fear of spiral tubing is one of them.

Hope that made some sense.

3. Where did I buy her "dinosaurs"?

I found them at the gift shop in the hospital at Sutton Children's in Shreveport, Louisiana. I haven't found them any place else yet. I keep my eyes out just in case, but have never seen another one. I wish I could help you locate one, but I just don't know where to get them. The next time I am over there I will be happy to ask the manager of the gift shop and perhaps they could let us know where they ordered them from? I'll give that a shot.

4. Does that mean they said yes to transplant her?

Not exactly. Not yet. We have to have clear cultures. They want to review her developmental packet. They think its possible, but as far as I understand haven't made a final decision if its what is best. Ultimately, since its possible I believe they are going to leave it up to us to decide if and when we want her listed. This is the best answer I can give you at this time. Its all a little confusing and I have not yet talked to them this week.

5. Are we actual friends with Kylie and Emerson and do we know them?

Yes. We are friends. Yes. We do actually know them. All three girls received their transplants at UNMC with the same team of surgeons. We all know each other. We are friends. Its a different type of friendship then you may imagine though. We don't sit down for coffee, go out to lunch, or shop together. We support each other, understand each other, and pray for each other. Its a deeper level of friendship that gets formed when you watch your daughters fight for every breath, and every single day of life. We have all been changed by our tiny girls. We are better people because God blessed us with these amazing gifts. We get what each other is talking about without hesitation or confusion. I can read their words and they mine and we know exactly what the other's heart is feeling because more than likely we have felt those exact same things at some point in this journey. I am honored to say that Erika and Joan are my friends. Honored.

6. Did Ashley Kate's hair grow back? It looks so long in her photos.

Ashley Kate's hair is in the process of growing back. Thankfully she did not lose the top layer of her hair and that is what you see in her pictures. If I were to life it up and take a photo you would see that all the way around, from the top of one ear to the other that it is about 2 inches long. That's progress! It had fallen out or broken off to the scalp and when she came home there was essentially no hair other than the top. Allie and I are MORE than grateful that the top layer remains. Her hair is no longer thick. No longer as beautiful as it was before explant, but we do have the ability to make it appear so. We braid Ashley's hair after it is shampooed and allow it to dry in the braid. When we take it down it is wavy and appears thicker than it actually is. We have learned to use this to camouflage the short hair that is on her head. You will not see it pulled into a ponytail here in her pictures. I took her out of the house one time with it pulled up and the stares and questions were unbelievable. One person asked me if I had shaved her head like that on purpose! I was stunned anyone would think I would do such a thing. Ummm...no, I would never shave my daughters head on purpose. We are blessed to still have that top layer. So blessed. It makes it possible to conceal the loss of most of it and people don't stare or feel pity for Ash when they see her. With or without her hair she is beautiful to us, but I DO prefer her with hair. I just do.

7. How is it that you are able to attend so many ballgames in Ashley's condition?

This is not an easy one. First let me share that we have 3 children who are all loved unconditionally and who all deserve to have two parents who support them. That is how we parent. Blake and Allie would completely understand if I never went to any of their games, but we believe it is important for them to have me there and for me to get to be there while I am home. Our parents help us. My mom came here for over 2 months once we got home and she sat with Ashley Kate while I traveled to the games. She went home for a while and now Dave's mom has been sitting with Ash. She will stop at the end of this month and then I believe my mom will come back to help us. Its a huge sacrifice on their parts. Dave and I know and appreciate this. We choose to be as active and as involved as possible in Blake and Allie's lives even though Ashley is sick. Its how we parent and we don't want that to change. It takes quite a bit of support to pull it off though. It may be hard to understand our devotion to being there, but its ok if you don't. My kids play ball. Its what they do. Its what they have always done. Some kids sing, act, play instruments. My kids play baseball, basketball, soccer, volleyball, etc. Its who we are as a family. If Ashley Kate had the ability then she too would have been on that soccer field at the age of 3!

8. How did you obtain the Omegaven?

Long story. Lots of follow up. Lots of not taking no for an answer. I think thats what it takes. The FDA has to see that you aren't going to stop asking even if they say no. We just didn't quit. I would be happy to answer this at length in a private email. I will share with you that when we went back for eval we were told that since our pursue of the drug that they have been able to help several families across the country obtain it. They learned from our case and were better prepared to assist. That made a smile come across our faces. If the struggle ultimately made it easier on someone then it was worth it. I'm happy to say that Ash is doing amazing on it.

9. Did you ever share pictures of Ashley's birthday party from the hospital?

No, I didn't. Not because I don't want to though. The truth is there is an awesome slide show we put together on my old computer that died. We haven't yet transferred it to the new one so I have not been able to post them. I guess if your still interested I could try and get that done this week. It was an amazing night. Filled with some of the best friends we have in the world. All there to love on our little girl. We walked out of that room feeling so blessed that night as we watched Ash continue her fight toward home. Thanks for asking and reminding me.

Like I said, nothing earth shattering just some of the repeated questions we get asked and a couple of person to person questions that needed to be answered. Thanks for putting up with the "housekeeping".

Have a blessed day.

Oh yeah, 10. Is that a Christmas tree still up in Ashley's playroom?

Yes, it is. And in the family room. And in the dining room. And in Allies room. I haven't taken anything down yet. It makes the house so cozy and me so sad when I have to pack it away so I have chosen not to just yet. I will. Eventually. I just don't need anything else to be sad over most days so I have avoided it all together.

Love ya, Trish

No other way

Ashley Kate accidentally discovered she had two dinosaurs yesterday.

I don't know how to be a mom any other way than this. A mom who fights for quality every single day of her life. A transplant mom who refuses to give in and raise her daughter in a hospital. I just can't give up the dream, the goal, the hope of raising her outside those walls. In our home, her rooms, her life.

It was love at first sight.

Ashley Kate deserves to live a life at home. She is such a happy, playful, child. So full of love. So full of joy. So full of promise.

They hugged, they hopped, they...

I fight, and I fight hard to give her all that we believe her life should be. I hate to spend one more day than absolutely necessary in a hospital. I won't give those days up easily. I won't just sit by and wait and wait and wait while her life slips by day after day inside of a hospital. I just don't believe she was created to grow up there.

kissed.

I despise knowing that we are headed back. I absolutely hate what lies ahead of us. The struggle, the fight, for life and for quality. I cry each and every day as I look around our home, watching Ash play, listening to her interaction with her big brother and big sister, seeing her eyes sparkle as she sits on her daddy's lap, because I know its temporary. I also know its what we are fighting for. This is worth it. Worth the struggle, the pain, the fear, the worry. This life of hers, here in our home, is so worth it.

and they were loved...very, very, well.

Still, it haunts me. I just can't surrender her time to a life lived in a hospital room. I can't. It hurts so very much knowing we are leaving home for an indefinite amount of time. It took us six long, scary, lonely, painful months to make it home the first time. Every single day I woke with the same goal in mind...home...for Ash...for our family.

I don't know how to be a transplant mom any other way than the way that I am. It makes everyone around me crazy, and I realize that. Still its what I am. I have to fight to bring her home. I have to. This is where she is her best. Always has been. She heals faster, lives fuller, and stays healthiest. We just have to survive another round to get back to this place she loves so very much.

I know there are moms who do this better than me. Its the truth. I watch them with their ability to be patient, to wait, to not ask, to just sit day after day after day. I don't know how to do this life like that. I ask questions, I expect answers, I plan on leaving from day 1. I just do. There are days when I wish that I could do it their way, but I'm not them. I don't know how to be them. I just know how to be me and I fight to keep my family together. Its what I do.

I'm praying that some how God will give me the strength , the ability, the patience to walk this road again. I know how ugly the days away can get. I've watched her battle time and time again as I stood alone next to her bed. I have felt the isolation and the despair of the PICU. I have signed consent time and time again without the time to find peace from the Father about the situation in I am consenting too. I fear what lies ahead. For Ashley Kate and for me. Its the hardest thing either of us has ever done. Transplant. Its so very hard. My greatest fears are losing. Losing my daughters life and losing the me I know that I am.

I'm struggling tonight. Really, really struggling as my beautiful little girl lay snuggled up with those dinosaurs next to her. Oh, how she loves them. Oh, how I love her. Oh, how He loves me. If only love could make the rest of this disappear. If only it were enough to heal her broken body and my broken heart.

In the beginning Dave and I prayed for one thing. Even before we ever laid eyes on her we asked for this. That our tiny girl lying in that NICU could do just one thing. Give and receive love. Its all that mattered. Thank you God for giving us the very thing that mattered most. She does love and she knows she is loved. There is no other way I could do this.

Ignorance...at least for now

Because you asked:)

Honestly, I have intentionally and willfully kept my mind away from all transplant related thoughts, images, memories, questions, fears, etc for several days. Living in a land of chosen ignorance has been lovely. Just lovely. I have not allowed myself to say or even think the words since last week.

I have not talked to transplant. I have not asked for a final decision. Dave and I have not discussed our decisions. I have lived life as if we had not a worry in the world and it has been so refreshing. I have played, laughed, enjoyed, and taken care of Ashley Kate as if life just like this could go on forever and perhaps may have even tried to talk myself into that as if it were a fact. I know its not, but that is the reason for my lack of posts or updates.

You see, when I turn on this screen and allow my fingers to run rampid across the keys then my thoughts and my fears tend to do the same thing. I have a hard time keeping inside the things that are flowing through my mind and hence the honest and sometimes unbearable words that find themselves on this journal.

If I avoid opening my soul then I get to avoid opening the pain of the place in which I am residing. Instead I am going about day to day life with the ignorance taking center stage rather than the reality.

So...what is going on? Many people have noticed Ashley Kate's change in skin color lately. She is no longer looking yellow and sickly. She has responded very, very well to the Omegaven and although her bilirubin levels are not yet normal they are getting closer every week. Last week they were down to 2.4 and that is the lowest they have been since removal of her bowel and dependence on TPN. She never "tanked" in her numbers like was expected for the first 8-10 weeks or so. She has just done....remarkable. Her enzyme function is normal as well. The ultrasound during her eval did show evidence of some reverse portal flow damage that the surgeons do not believe will resolve and so when discussing transplant it was decided that they would once again transplant a liver and pancreas along with the small intestine. Ashley is full of energy, happy, playful, and living with very little evidence of liver disease. Such a change from the fragile child we brought back home in August. Still....we all know she must have a transplant. There is no avoidance. The lack of central line access has sealed her fate and therefor at some point we will have to allow them to re-transplant her organs or she will die. It could be with the next infection and that could occur at any moment. The loss of her central line would be a death sentence for her. This is the factor that forces us to decide at which time in the near future we will ask for her to be listed. If not for that fact then we would go for a year or maybe even two, as long as she continued to be stable, without even discussing re transplantation.

She has two more days of IV antibiotic treatment for the staph infection and then we will draw cultures to see if her system is clear from it or not.

Her line site seems to be healing. We have gone 4 days since having to change her dressing and that has been the record since placement in Omaha. I think the chylus injury is healing. Her incisions have sealed and are no longer leaking. They look pretty good.

Ashley is silly and happy. Very stable at this time and so it seems like it would be an easy decision to make concerning transplant, but it is not. Take her now while she is stable...but risk her death at any moment during, immediately after, or possibly weeks later? Keep her here...allow her to live, enjoy some more time, grow up a little, experience life...on her last available line site? There is no easy decision. We do not know what we will decide. We are trying to weigh both sides of the equation and trying just as the surgeons advised to not get emotional while making it. So far we haven't figured out how to not get emotional about it. In all honesty it has been days since Dave and I have sat and talked about what we should do. I think we are avoiding having this conversation because it is just too hard right now. There is no way of escape from what is to come and we do have to make a decision soon. Hopefully it will be the right one. If its not I don't think either of us will ever be able to live with it.

For today though we have two more days of treatment and then about 72 hours after that while we wait for potential growth on her cultures to remain in this land of ignorance and just keep acting like the weight of the world does not indeed rest on our shoulders.

A Beautiful Surprise...

Play

I'm watching Ashley Kate play this morning. Something I sat and grieved the loss of many times this past summer as she lay so still, so lost, so gone from us. I wondered many, many times if she would ever have the strength or the desire to return to her silly, playful self. I cried huge tears as I missed her messes, her noise, her laughter. God is so, so good to us. I can't say anything other than that. He blesses us with more and more as we spend each day with our Ashley. She is a joy!

Every morning I clean up the play room from the day before as Ashley spends time cuddling dinosaur in her bed. She laughs and giggles and hums to him while I prepare the room for her to get into later on. I pick up a thousand puzzle pieces. Replace every single book on the shelf. Arrange her DVD's back in the case. Return bins of bugs, blocks, cars, animals to the shelves. I vacuum the rug, straighten the chairs, and fluff the pillows in the window seat. All in preparation of a day spent playing with this tiny girl I call mine.

This morning as I cleaned up I found myself smiling and praising God for another day of messes. Sounds silly, I know, but there is something about picking up after Ashley Kate, or washing laundry that belongs to Ash, or even preparing bags of TPN and meds that brings smiles to my face. I would do these things a thousand times a day, and some days it feels as though I do, just because it means our girl is home. There is joy in that feeling.

In addition to playing with Ash I have been spending most of my days each week watching the big kids play one sport or another. I love being there. Love traveling from town to town behind that big yellow bus. Love being the mom of Blake and Al. They amaze me with their talents. They make me smile as they run up and down the court, hit the ball over the net, round the bases, kick the ball into the goal, etc. etc. If its a sport and it can be played then one of my two older kiddos is out there playing it. Currently both kids are on the starting line ups for basketball. Allie is playing club volleyball on the elite team. We are traveling to her first tournament this weekend:) in Dallas. Soccer registration has been mailed and we are awaiting her practice schedule. High school baseball try outs are just around the corner. Literally only weeks away. Blake works out with the coach and his best friend at the end of each school day before attending basketball practice. We are busy playing and enjoying our time together while we are blessed to have it.

Its nice to play with my kids. Such a gift to have these children in our home. We love battling it out in anything from ping pong in the game room to a nice game of one on one out back in the drive way or even a round of dominoes at the table. I love being a mom. Absolutely love it. Love these kids of mine.

Today is a good day. A concert is being played on a lady bug drum from the other room. Mix that sound with the roar of the ugly, orange dinosaur and its music to my ears as I work on the laundry. God is good. He still is.

My funny girl

Yesterday as we were driving the highway between Longview and Shreveport my funny girl began to get a little stressed as the eighteen wheelers passed us by. I could see her in the rear view mirror signing for McQueen and Mater, but all she could see was Mack. It was making her so frustrated that Mack was keeping McQueen locked up in the back of that truck. She was ready for the show to begin, and yet they never let the others out of the back of the truck.

As she grew more and more determined in her signs I watched her hit the window and sign "now". She uses the "now" sign when she is serious about something and it made me laugh out loud at my funny girl.

I suppose she just doesn't understand why they others never showed up on that highway, but Mack gave her an awful lot to "talk" about in those two hours on the road.

Oh, how I love this child!

Again

Again I find myself sick. I'm feeling the weight of the world, the stress of our situation, in my physical body as much as my mental. I looked at Dave tonight and told him I had to sleep. If only for an hour, turn out the lights, close the door, and let me close my eyes. Its was only 8pm. There are moments when I feel as though I can't make it to the next. The burden of transplant weighs so heavy on my heart. I felt myself drifting off into sleep and then I would wake heart racing, panicked, as I realized it is all still real. This is so real. Its not going away. Its not getting easier, its getting harder day by day as we struggle with what to do.

I get the feeling still that they will list Ashley Kate for transplant. I'm not sure what the whole "developmental" packet is about. I assumed since they canceled the neurology evaluations last week that we all understood she was "worth" saving. I'm not sure why they need this packet or what it even needs to say to them. It scares me though. Anytime anyone wants to know where Ashley Kate falls in her development it frightens me. Why? Because I believe those "tests", "developmental consults", etc. to be a bunch of crud. Trust me when I tell you that the fact that Ash doesn't perform on command does not mean she is unintelligent. She may never choose to stack a series of those stupid blocks, but I have witnessed her stack three dominoes end to end in a vertical tower. I CANT EVEN DO THAT! My daughter can though on her own time when she wants to do it. The fact that she never really learned to crawl, stand up on her own, or take steps independently without her walker does not mean she is infantile. It means nothing! She doesn't have to know which comes first in a series of daily tasks to prove she has a functioning brain. I don't give a blank what those papers say. I'm her mom and I'm telling you she is HIGHLY intelligent. She can manipulate a therapy session like no other. She can get adults to do what SHE wants to do in a matter of seconds. Don't tell me she's not smarter than they are. She is controlling what takes place when they are in her play room. If she wants to participate then she does. If she doesn't want to then guess what? It doesn't happen. The child has intelligence. A high level of intelligence. If she could speak trust me when I tell you she would let them know it. My goodness, watch her sign! How easy do you think it is to communicate in a world where no one else understands you? She is the smart one. She is the one who is learning to adapt to the rest of the worlds "handicaps" when they don't get what she is saying. This all makes me crazy. Why do I have to prove to anyone how smart she is?

I don't know how we are going to get through this next part of life. I really don't. When they say they will list her(because I KNOW they are going to say that) I don't know when we will say "ok" lets go for it. The first time we were naive. We thought it would change her reality. We knew we were out of time. 3-6 months left to live. 3 of those months had already passed when she was finally listed. We had to go for it. Never in a million years did I believe we would be in this place again. This time no one can make us naive again. It can't be given back to us. They can't tell us how long they think we have with her. Until this line stops functioning? Is that weeks, months or a year? How much time do we have? We know we are going to choose to transplant. That part of our decision has been made. We don't know when we are going to ask them to list her for transplant. We are trying to search for answers. Nothing is clear at this time. We do not have peace right now. How do we take this happy, smiley, thriving, child and risk it all? I wish it were easier than this. I wish there was an expected outcome. You know like...fixing a broken arm. It breaks, you set it, cast it, wait...it heals. Transplant doesn't work like that. You never know if they are going to heal. If they do you never know for how long. Every single day you live knowing that at any moment, any time of that day, they could lose the very organs they have spent their entire lives fighting for.

I'm spewing words on this page. Emptying out my thoughts. Hoping in some way it will lift the heaviness from my chest. Its not working tonight. I want to lay down, close my eyes, and dream all of this away from my home, my family, my daughter. I want it to stop for us. I want to protect the life of my daughter and the hearts of my husband and the older children. I can't. I can't help any of us.

They asked for...

a developmental packet on Ashley Kate this afternoon. That request in itself makes me angry. There is no other way to put that. If she could walk and talk then I promise you this would not even be an issue. How am I supposed to prove she is in fact developed enough to deserve to live? Dave wants to know what this means. I wish I knew. If we can't prove she's smart enough then is that a No? If we have reports and letters written that say the right things does that mean Yes?

The words shared with me this afternoon from the coordinator were this, "It is technically possible to transplant her. Everyone agreed it can be done. The risks are high. Very high. As high as they can possibly be, but we think you guys know that."

This is all I know. We are praying for direction, clear answers, and help. We need all of those things. It doesn't get any harder in the realm of parenting then what we are in fact faced with. It is life and death. The life or death of our youngest daughter. I wouldn't wish this on my worst enemy if I had one. I wouldn't wish this for anyone. If we do not choose to transplant her then she will die. Not today or tomorrow, but she will die. If we choose to transplant her then she may die. That day, the next day, or even weeks afterward while she attempts to recover. There is a slim chance, a miraculous possibility that she would survive, recover, and make it back home to our family to grow up. We are facing the hardest days of our entire lives. The very hardest.

Your prayers are appreciated at this time.

Encouragement

I'm listening to a sound so unexpected this morning as I sit in the family room trying to convince myself that I can in fact make it through today. My heart is anxious although I've told myself not to be. My nerves are jumping around inside of me making my stomach knot up although I've told myself it will not change the decisions being made one way or the other for me to make myself sick. There is a tiny songbird sitting on the patio singing like its a sunny spring morning rather than a day in early January. At first I thought it was on the television so I looked up to see what commercial was on. It wasn't coming from there. As my eyes scanned the windows on the french doors I discovered this concert was coming from the tiniest little bird perched on a chair sitting on the patio. It is so interesting to see him there. He is singing. Not just tweeting a sound here or there, but his head is thrown back, beak lifted skyward, and the song in his heart is coming out loud and clear. I've been watching him for what seems like forever just wondering what he is so happy about this morning. Some where in the midst of his singing I've begun to smile. His song has lifted my spirits. I think he was sent here this morning to encourage me. I really do.

Ashley Kate is lying her bed playing with her dinosaur, listening to music, and reading books. Its her early morning routine. As the kids begin to move about the house and we go in to do her morning cares she begins making her requests. Dinosaur, listen, book. Same thing every morning. After a while she drifts back to sleep until I have her morning meds ready and then I get her up and ready for our day. This morning we are driving to Shreveport to see her local surgeon and she must know that although I don't remember telling her because she pointed to her pumps, signed backpack, waved bye and then signed car. I laughed at that girl and said we were'nt ready to go yet and she snuggled back down under her quilts.

Today is the meeting of all four transplant surgeons. Today is the day they decide if they are all willing to take Ashley Kate on as a patient again or not. Its an all or nothing decision. Since they share patients, each one taking a turn as the attending a week at a time, it has to be unanimous. I'm not so sure its going to be. I hope it will be, but its not a guarantee and after the conversations had between us last week I came home wondering if in fact they would agree to re list our tiny girl or not. I don't actually expect a phone call from them today informing us or anything. I just know that this is the day. The day of decision. Just that knowledge has my stomach in knots. Its so completely out of our hands. We don't get to decide anything until they say yes or no. At which point Dave and I have to say when and perhaps even where if they deny her.

So many people have wondered if we have asked Ashley Kate what she wants us to do. I'm going to be totally honest with you and say that baffles me. A question like that makes no sense to me. Yesterday I sat thinking about that for a long time and the best response I could come up with was this, "Would you ask your 5 year old to make a life or death decision?" Really think about that for a moment. If you have a 5 year old, or have ever had a 5 year old then you are welcome to answer that for yourself. If you haven't then please don't answer it because you really have no idea what you would do. No disrespect intended. I just can't think of a single reason why anyone would place a decision of such magnitude in the hands of a child who has no concept of what life and death are really all about. If she were 12, maybe. 15 absolutely. The facts are that she is 5. Another fact is this, Ashley has some developmental delays. If I were to say "transplant" she has no idea what I'm talking about. If I say "hospital" she still doesn't get it until we pull up to one. Why would I say to this sweet girl, "Do you want to live or die?" Even if she could grasp the meaning of my words she doesn't have the maturity to make a decision like this. I'm not trying to be disrespectful. I'm just shocked that people think she should be able to make her own decisions at her age. I'm really shocked. I wouldn't allow my 5 year old to decide what outfit to wear on a daily basis much less decide if she should live or die. Maybe I don't get it or maybe I just parent differently than others, but this is not a burden to lay at her feet. Yes, I know she is the one who must endure the pain and the struggle, but when she is 15 I think she will be glad we made the decision to give her a chance to live. I just believe that she will.

Anyway, Dave and I want Ash to have a chance to be 15. In all honesty I want her to have a chance to be 6. We know that for sure. What we also know for sure is that if we don't try she never will be given that chance. Its not a decision we have made lightly. It torments us. We don't sleep at night, we are often found unfocused and dazing off into space as the weight of these decisions overcome us at random times day and night. What we don't know for sure is when. Do we want her listed immediately or do we want her to be allowed to enjoy her days at this time since she is "stabilizing"? How large is our window of opportunity? When will it start to close? Do we jump when they say, "ok" and sacrifice precious time with her now with a possibility of losing her at any moment or do we ask them to hold off for a few more weeks or months while she enjoys being a little girl in her home? This where the struggle lies. What is the right decision? Who can guide us? Who knows what the right or wrong answer is? I only know of one who holds the answers to those questions and its not always easy to figure out what He is guiding you to do. Are we ready to give up her sweet morning hours of playing and reading in her bed for morning hours spent listening to the hum of a ventilator and the beeping of the monitors? Are we ready to have her smiles and giggles replaced with tears and grimaces? Are we ready to risk her life not knowing if she will ever make it back to our home?

This and so much more is why I feel the way I do at this time. Hurt, confused, afraid, stressed, and yet still so grateful. As I watched that tiny bird pour his heart out in song a few minutes ago these thoughts came to mind, "He takes care of him. He put a song in his heart. He cares for that little guy." I was encouraged by that. How much more does He care for our Ashley? How much more will He take care of her?

On one hand I am afraid to trust Him with her life once again. On the other hand I find great comfort in the knowledge that I would want to trust no other. What better hands to place her in than the very ones Who created her? Encouragement? I think so.

Delivery

Its 9:15 pm and I'm STILL waiting on a delivery. It was guaranteed to be here by 10:30am. So much for UPS guaranteed over night delivery. Around 12pm it was discovered it had been lost in the warehouse. Not sure how that happens when its marked Urgent MEDICAL, but here I sit still waiting.

Ash has had NO IV antibiotic today. NONE. Her last dose was given at 10pm last night and I have waited all day long for the new delivery. Usually a delivery(we get them almost every single day) isn't this urgent, but with Staph running through her veins its a little bit important.

She actually had a great day. Played, smiled, giggled. She looked amazing. Tonight she's fading and not looking so hot. She's warm and acting different than she has most of today and so I'm fearing a fever coming back on. She's got 9 more days of IV antibiotic to clear her system and missing an entire day (3 doses to be exact) was not in the plan of treatment.

At this time a pharmacy out of Dallas is supposed to be picking up the ball and in route with at least two days worth of doses, but I expected to see them by 5pm and they still have not found their way here.

I'm frustrated. Not wanting to be. I'm just tired. Really, really tired and the transplant team switched antibiotics to a new one she has never been on before. That means that once it finally arrives and I give the 12am dose that I will have to take vitals every 15 minutes to make sure she is handling the new med ok. Its proving to be a really, really long day at our house.

I hope they arrive soon. Its not supposed to be compatible with her TPN and Omegaven so they asked me not to hang the new bags until after the med ran so that I wouldn't be accessing her line an extra time. Problem being...no TPN...no glucose...no fluid...not good. I think I'm going to go ahead and hang some just because its getting so late. She's got to have something.

Its pretty crazy to know that a lost box in a warehouse can cause so much trouble. Please, please ring my doorbell soon!

A completely, random, out of order sampling...

...of the Adams family Christmas. Ready to roll. If you look closely in the front window you will find Allie giving a thumbs up.

Our Christmas was so non traditional. So unlike anything anyone who knows me and my love for the holidays and tradition and formality would ever guess I would be a part of. It was such a great idea! We laughed so hard. Made silly videos that we will cherish forever. Played with our kids. Enjoyed our time. Praised God for His gift and for the family He gave to us.

Hope you enjoy just a small sampling of our adventure. Its out of order and just random shots of the weekend, but you can still get a feeling of the fun that we had.


All three kids warming up around the fire pit early Christmas morning. This was my favorite scene of the entire holiday. LOVED having all the kids together, waiting for Dave to read the Christmas story, and then opening gifts. It was so peaceful and absolutely wonderful.


On Christmas Eve we had a little contest. Go out into nature, collect what you would like, come back and make ornaments for our tree. The person with the best ornament would get to open 1 gift of their choosing. SO MUCH FUN!!! Good, quality time with the family. It was everyone's favorite memory of the weekend.


Our stockings were hung. Not real classy looking hung on the cabinetry, but nothing about this little adventure was all that classy. It sure was fun though and we will definitely remember this Christmas from now on.


Our Allie warming up on Christmas Eve with a cup of yummy soup. It was very cold and we were very thankful for the chilly winter weather this Christmas. So much better than being in shorts and flip flops on Christmas day.



Here is a shot of our little holiday camp site. We laughed and laughed about this entire set up. What fun it was decorating!


Dave and Blake busy hanging out tacky snow flake lights on the awning. I love the smiles on their faces. I'm telling you we laughed harder these few days than we have in months. It was great.
One of my favorite pictures from the entire holiday. Love the smiles. Just genuine joy on both of their faces. They have so much fun together.


Ash reading some of her new books. She loves books more than anything. You will rarely find Ashley Kate without a book in her hands. Its part of her world. She learns so much from "reading".


Ashley and Allie hanging out around the fire pit. They were working on their marshmallow roasting sticks. Ashley Kate was SO happy to have her own stick.


A shot of the holiday campsite at night. We caught several people coming down to snap photos of our "redneck" holiday. It was so funny!

We really did have a great holiday. Hope you did too. I thought this would be a nice break from all the drama, emotion, and other goings on in our life right now. I'm doing my best to not think of all that is taking place. Have a great day.