Ashley's Story

Rainy Day

2012-01-25T08:11:00.002-06:00

Its wet outside today. Too wet to do the running I had planned for the day. Rain and wheel chairs don't mix too well so it will all have to wait. I'm disappointed for Ash though because even though I may enjoy having a day to stay inside she was planning on being able to get out today.

My silly girl LOVES to leave the house. It matters not WHERE we go, but simply that we DO go. She cracks us up. The minute we get into the car she rolls the window down. She's so quick at it now that she gets it down before I can get them locked! You should see the smile on her face as the wind blows back her hair. The older kids have a hard time complaining about the temperature or the wind inside the car simply because of the joy she expresses from rolling that window down. Hard to deny her such a simple pleasure.

The only thing I really needed to grab today was more laundry soap, but I suppose the laundry can wait until another day. Good excuse? I think so.

I'm working on taking down and packing away our holiday decor this week. Pretty sad around here. Makes the house seem so empty. I always have such a hard time when this time comes, and I think it boils down to the passing of the milestone I was working toward in Ashley Kate's life. If I don't have something like an event, a date, a holiday, etc. to focus on making it to then the harsh reality seems to slam against my heart so very hard that I feel knocked down. I have to have a goal. I have to know we are working toward this or that in order to stay focused on her future and not stare into the face of transplant. It may sound ridiculous, but for me its the way I've learned to get from day to day without falling apart.

One thing I know for sure is this...bringing her home was the VERY BEST DECISION we have ever made. She has come back from the horror of it all and has lived with a joy that I find indescribable by words. She is alive. She is thriving. She is strong. She is happy. Seriously, it all pales in comparison to those things.

So many times I am asked "what are we waiting for" and so many times I can't really formulate an answer to that question. I simply stare into the twinkling eyes of my daughter and know that this is not the time to go. Its just not the right time. I can't answer in words. Its just a feeling. If you could see her and know her the way that I do I think you might understand, but to put into words on this screen the why's of it all...I just can't make anyone understand.

We've been given this time with her here at home and I wouldn't trade a moment of it. Not a single moment that has been transformed into memory. The rainy days of being stuck inside, the car rides with the wind blowing back her hair, the holidays, and the every days. Each and every one has been a gift to this family. We recognize that and we know it won't always be this way. It makes our family grateful. On a level that I'm convinced we would have never experienced had we been handed a struggle free life with our littlest one.

I wish so desperately that the lessons hadn't required the high price that they have had attached to them, but I know He's grown us through the paying of it. My Blake...My Allie... they wouldn't be who they are had they not known how to love My Ashley. Neither would Dave or I be who we are.

The Goings On

2012-01-23T00:36:00.003-06:00

I'm settling into this new pattern of holding on to most of my thoughts rather than spilling them onto the "pages" of this beautiful place. It had become such a huge part of my life, almost a daily routine to come here spill it and then walk away. I'm not sure I like this new way of keeping it inside, but then again I wasn't sure almost 6 years ago that I'd ever like the sharing of it either. Nothing really happened to cause me to change this habit. Seriously, nothing was said. Nothing was done. I just find it easier at this time to hang onto my thoughts instead of sharing them. No real explanation. No real reason.

Life here in our home has been busy, busy, busy. I prefer it that way. Not a lot of time to sit still and dwell on the things I cannot change. The things I don't understand. The things I wish so desperately were different. My teenagers keep me running here and there most every day of the week. We just arrived home from Allie's volleyball tournament in Dallas. So much fun to watch our girl do something she is so good at doing. Dave and I were visiting today as we watched her play and amazingly said we think she may play volleyball in college rather than soccer. NEVER thought I'd say that, but she's really, really good at this volleyball thing. I think we've decided not to play another year of club soccer and who knows if she'll make the high school team this may or not. Even if she does, she's not willing to give up basketball in high school so she will be splitting the basketball and soccer season's and that's a really, really tough thing to do. She's still on the fence about trying out for high school cheer. If she does and makes it then her schedule will officially become impossible I believe. Not sure how to make her slow down or choose between all the things she loves.

Blake's basketball season has about 3 more weeks in it and Friday night he played AWESOME. Seriously, one of his best game ever. We were so proud watching him. Playing basketball has basically "frozen" him from being able to try out for baseball so he will miss try outs this Friday and to be honest that really sucks. Plain and simple. It puts him behind the other players, but I'm not too worried. Blake always land on his feet. No matter what the obstacle he has the ability to make life work. I'm very, very proud of who he is. He is a great baseball player and this few weeks of "freezing" him out won't determine his career. He is working very hard and has been all year. He's hitting well, throwing harder than ever, and pitching great. He leaves basketball practice and goes to hitting or pitching lessons every week. He thrives on all the hard work. He's happier than ever. Enjoying dating a beautiful young lady. Making it all work. He remains an amazing kid. An absolute joy in my life.

Ashley Kate is soooo sweet. She's soooo fun! Soooo silly! I laugh every single day at that little girl. She has grown and matured so much in the last few months. I looked at her tonight and couldn't believe how beautiful she was. Her hair, her eyes, her smile, her complexion...all so beautiful. I love her. She's had a cold the last couple of weeks making mornings and evening a little rough on her, but during the day she is absolutely delightful. I've noticed some changes in her. Like her need for rest. She sleeps a lot. She seems to need it. I allow her to sleep as late as her body needs knowing that her liver is struggling to process the components of her TPN. I'm taking life as it comes it with her. Our days are happy. Simple. Sweet. I don't bring too many people in to work on this or that and I'm ok with it. She is too. Ash is the happiest, most joyful, person I've ever known or ever loved. She makes us all happy. Even when the day is hard she has the ability to bring a smile to all of our faces.

We are still searching for a nurse. Someone to sit with Ash a few hours a week allowing her to rest rather than do all the running I do. Although she loves to go, its physically demanding and wears her out. Insurance is requiring an RN and that has made it a little harder to fill the position. Dave and I would prefer to bring in the nurses that already know and love Ash, but haven't figured it out yet. I know it will happen if its the right thing to do. If it doesn't happen then its ok, we will make it work.

I guess overall life around our home is what it always is. A mixture of mostly good days, with just a sprinkling of bad. The children are all happy, and as mother I don't know that I could ask for much more than that. I love them like crazy and wouldn't trade our crazy life for any other. Hope your all well. Hope your families are blessed. I miss sharing pictures of our sweet Ashley with you, but I'm still without a camera. I can't remember a time in my life when I wasn't snapping photos on a daily basis, but it is what it is. Hoping to get it repaired or find a new one in the next few months. I'll write again soon. Maybe someday this will become that daily place I can come to again. I sure hope so. There's so much swirling around in my head and my heart.

Listening

2012-01-17T23:34:00.002-06:00

Some nights I like to sit here in the dark and listen. I can feel a smile spreading across my face and then across my heart. Her giggles filter in from her bedroom. The sound of her laughter is surely the most wonderful thing I've ever heard. The MOST wonderful!

She's happy.

So very happy.

For that...I am grateful.

I was driving home tonight from watching Blake play basketball, and I realized that she's not hurting. Not now. Not anymore. I'm grateful. All I could do was smile as I whispered to the Father how very grateful I was for that.

She feels good. She has no owies. She has no fear. She's not worried.

In my world it doesn't get any better than that.

The memories of those nights. The nights filled with pain in her tiny body, and the look of confusion in her eyes, and the helpless feelings that engulfed me are all still too real. Raw. Even after a year and a half, the memories bring me to my knees. I wanted more than anything to keep her safe. To make it all go away. To bring her home. The place that she loved.

Now...she's here...and I can't make it all go away...I can't keep her safe...but... I can sit here in this room and listen to her laughter as it breaks through the dark and I can be grateful.

And... I am. As I listen tonight...I am.

All is Well

2012-01-06T23:45:00.003-06:00

Ash is well. She's been antibiotic free for 3 days now. Seems to be doing fine without them so far. Her last set of cultures have not grown out and we are very grateful. She's happy. Full of giggles. Joy abounding wherever she goes. She's simply wonderful and makes our hearts so very, very happy.

We are busy, busy this week. With school starting back up, basketball x 2 kids, club volleyball, and preparation for the beginning of baseball, its a full schedule.

My brother and his family are here for a visit. So much fun. Ashley Kate LOVES the attention of my 4 year old niece and my nephews. They are all so good with her. Always someone there ready to play ball with her, get her a drink, or push her around in her chair. We've laughed really hard and sooo enjoyed our time with them.

My heart is heavy these days and I miss the days where I don't feel the burden of central lines, transplants, and unknown futures. It seems as though I bounce back and forth between the ability to not lose focus of the minutes we are being given and the shattering decisions that still loom on our horizons. I can't think of it all without shedding tears this week, so I've been hiding from the journal in hopes of not letting it all spill out on these pages. I wish so desperately that things were different and that we had never needed that transplant in the first place! If I could have my sweet Ashley with all the other struggles minus the need for organs I think I might never ask for anything more. It simply couldn't be that way for her though and I'm doing my best to make it matter in my life. In some way this all has to be serving a purpose. Even though my heart is heavy and hurting these days I know He's working in our lives and blessing us with precious, precious time. I can't lose sight of that.

So, I apologize for the lack of updates. Trying to hold it together right now and not allow myself to be so vulnerable. Just feeling the need to guard my heart for some reason and I'm not sure why that is. Wanting to feel His presence in my heart big enough to overshadow the fears that try to hide inside there. Needing to know that His plan is going to be the best for all of us and that its really going to be ok even if it doesn't feel that way.

Thank you so very much for continuing on with us. I am still so humbled that you all love and care about us. Just know that when I'm silent its for good reason and that I'd never hide from any of you if Ash was struggling or failing. I know where the prayer warriors reside. I've seen you all time and time again approach His throne and lay at His feet on our behalf. I can't thank you enough for that. Never in a million years could I ever express how very grateful I am for your presence here.

Why does it have to be...

2011-12-29T19:50:00.002-06:00

SO HARD! Seriously, this is why I have such a love/hate relationship with hospitals, physicians, and nurses. You get some new "know it all" "it has to be MY way or no way" walk into the room and make life for families like ours who have been dealing with a terminally/chronically ill child for years miserable. I can't stand it!

We have been doing this EXACT same procedure with Ashley Kate's central lines for YEARS and just because you want to throw your weight around the hospital and call the shots and make a total you know what out of yourself...for WHAT? What is your problem?

I'm tired. We are tired. Get over yourself. Being kind, courteous, and easy to work with goes BOTH WAYS. Just pull the records from last Wednesday and you will see we've done this before, in this very hospital, in this very room BEFORE! MANY TIMES!

Sometimes its just too much!

I would like for them to just try and make something this simple easy for us. Please. Just make it easy as opposed to proving to us that you are the doctor. Who really cares? Trust me, we aren't impressed anymore. We are soooooo over that.

Just had to vent. I haven't slept well in about 10 days. Forgive me.

Emotions Run High

2011-12-29T10:58:00.003-06:00

Christmas with our kids was so much fun. We enjoyed every single minute of it and NONE of us are ready or willing to remove the decor from our home. We simply love the feel of it. Someday, maybe a day in February?, maybe not, we will pack it all away until next year.

Two days before Christmas we were hit with the disappointing news that Ashley Kate's blood cultures were positive. Again. I thought based on her turn around that we had caught it early and hit it hard. I was not expecting to hear that the lines, both lumens, were still infected. Needless to say my emotions were on edge and I did my best to keep them from running away with the news and causing me to panic. Those positive cultures earned us an extended 17 day course of antibiotics plus the addition of a second agent.

Next we lost blood return in both lumens once again. Trying not to get too emotional about the "difficulties" we are starting to have with her central line. If I allow myself it could get really, really out of control. I'm trying so hard to focus on what we do have and what is working. I have to stay squarely focused on that. The line infuses. That is the most important thing.

We need new cultures but are unable to get them so Dave is planning on spending another evening with Ash in the ER. I hate that its the only way to get TPA(clot buster) for her line, but its the only available avenue here in Longview.

When you mix in 4 hours of sleep a night for the last 10 days or so and the lack of proper supplies sent in our deliveries this week it gets a little emotional around here. I find myself on edge and ready to cry at a moments notice. I'm tired. I'm frustrated. I'm really, really trying to keep it together.

I really believe so much of it has to do with the date. A year ago we were in Nebraska being evaluated for transplant and searching for a line placement above her diaphragm. We have that line in place and have had for a whole year now. I simply can't believe we have been given a whole year. I see her giggly, smiley, little face in our home every single day and I'm so, so, so content and happy to be home with her. I never would have dreamed we would have spent another Christmas together. I believe with everything in me that its because we have decided to slow it all down and just allow her to be a little girl for as long as we possibly can. Had we given the go ahead I don't believe she would be with us. It is such an emotional turmoil we find ourselves in. What joy! What happiness! What peace! She has had another year of all of those things in her life.

Still I shake inside with the acting up and the chronic infection of this line. I don't have the answers. I can't see what lies ahead of us. I can only take it one day at a time and try my best not to make decisions for her out of fear. I have to allow her to live each day.

It has been 6 months since our last conversation with our transplant team. Time goes by so quickly!

Tomorrow we are meeting a nurse who may be a possibility for us. I am emotional about it all. Not sure how I give up some of my mommy duties to some one else or how I learn to have a stranger in our home around the children every day. Its such a journey. Its taken us 6 years to get to the place that we could even consider taking in some help, and I still don't know that we will be able to accept it. We feel so strongly that it is our responsibility to care for Ashley Kate. We are her parents. It is our job.

I'm processing so much right now ... Line infections, positive blood cultures, round the clock IV meds, little sleep, lack of blood return, nursing care, transplant...

then I look at her and...

I realize its all ok because she's here. She's happy. She's so worth this.

Life is blessed. Emotions run high, but I'm so blessed.

This Early Christmas Morn

2011-12-25T04:29:00.007-06:00

I wonder what she dreams about. I watch this tiny girl sleep this morning and wonder. She has no idea that today is any different than any other day. And...thats ok. Because every day is just as exciting and her joy is just as full.

I'm sitting here in the family room this early Christmas morning anticipating what is to happen in this very spot in just a few hours. The children are all sleeping soundly but here I sit at 4:30am so excited about what is to come that I can't find sleep. I'm even more excited as an adult than I ever was as a child.

The joy in Christmas comes in the giving. I never could have imagined how much fun it would be to be the giver of the gifts. As a child I thought the excitement came from what was to be received, but now I see. The gifts we give, not the ones we receive bring the biggest blessings to our lives.

What joy I feel in my heart from knowing how blessed the kids are going to be this morning. I'm so, so excited. I can't wait to bless them. Seriously, I can't wait. I'm going to though because Dave is not near as excited about being awake at this hour! I know because I tried to wake him up to talk to him about how excited I am. It didn't go well:)

We have enjoyed precious moments this holiday weekend. So many sweet, sweet moments with our kids. Making memories. Following tradition. Playing games. Baking. Laughing. Fellowship. We finished our annual Christmas puzzle last night all huddled around the table trying to be the one to put the last piece in its place. I love that. Love what a puzzle can do in the center of our home. Its amazing. Simply amazing to sit around the table visiting with those I love the most in this world. I found myself just sitting back watching, listening, and smiling as the bantor went back and forth.

Our sweetest gift this year lies just steps away, snuggled all safe in her bed. Her sweet rosy cheeks glowing in the light of her Christmas tree. I stand over her bed this morning and think how blessed, how truly blessed we are to have her here. A year ago we were so afraid. So desperately hanging on to this place in her journey. I can't help but feel joy when I see her face. Her giggles fill the rooms of our home. They are so full, so true, so joyful. She is our gift. Our tiny, precious gift. How could I ever ask for anything more? Nothing in a package could ever compare to what we have been given in this little girl.

I wish for each of you to feel the joy of Jesus in your hearts and your homes this day. He truly is the gift of a lifetime. I'll never understand the plans of God or the why's of all that is, but I know He loved us so much that He gave His most precious gift to us on this day. He walked with us so that we could know Him. How amazing is that!

We wish each of you a very merry Christmas and may you feel surrounded by the love of God.

Still Amazed

2011-12-21T14:20:00.003-06:00

I find myself still amazed and so humbled by the involvement of an Almighty God in our lives. With all that goes on in this world and all that is important just to know that He cares, He hears, He answers, and He ministers to a little family in Texas brings tears to my eyes. I matter. She matters. We are important to Him and our hurts are His hurts.

Last night Dave and Ashley Kate spent about 3 hours in the ER working on her line. I was so thankful for his willingness to sit up there after a long day in the office to spare us a very, very long day in Shreveport tomorrow. After the first attempt there was no blood return and I was feeling pretty down. Dave was calm and told me to keep praying for her. I asked her how she was doing up there and he said, "she's the happiest kid in the whole ER". That totally made me smile. She is a happy, happy girl. They made it home a with a very sluggish, slow blood return. It was getting late. They were both tired and her antibiotic was due and her TPN was late. He told me he wouldn't be surprised if it stopped working again and needed to be done Thursday as well, but at least we saw it was capable of pulling back. This assured us it hadn't moved out of position.

This morning we have very easy blood return from both lumens. I'm so thankful. Truly it humbles me that He hears and answers our prayers. Not every answer is the one I'm looking for, but sometimes it is. I feel such a burden lifted going into this holiday weekend with her. The line is working and she's feeling so much better. We've seen more smiles than not. We've been fever free for more than two days. We've had no nausea. We've seen her energy levels rising. The plan is to repeat cultures tonight and finish this course of treatment (10 full days of vanc). If the cultures return clear than we will go back to normal. If they grow out again we will add another med and keep on fighting.

Overall I'm feeling encouraged by her progress and the smile on her face. Christmas looks as if it has been saved(except that my camera broke this week and I don't have a back up:( Seriously, that is not an option. We have to come up with a solution!

Well, I'm off to pick up some groceries. Blake and I are baking this afternoon. Merry Christmas guys.

Heavy

2011-12-19T22:41:00.002-06:00

There are days when the journey that lies ahead of us weighs on my heart so heavily. I feel its physical presence in my life and I can't shake the weight of it all.

Tonight I feel the crushing presence of what the future does and does not hold. It hurts so much. On a night when I want to get lost in the warm glow of the tree lights, and the music that floats through our home I'm fighting an internal battle. My chest is so, so heavy. Its my heart. The burdens, the fears, the worries, the whole of it crushing me and filling my heart with those things that I so desperately want to ignore.

Ashley's line is struggling tonight. I'm trying not to panic. We've found ourselves in this place more times than I can count over the last 6 years. Even over the last year knowing we have no other options but for this line to hold on we've been in this place. I don't know why or what the cause of it is, but I'm holding on till our appointment in Shreveport on Thursday. Doing my best not to allow the struggle of it to steal from our family what should be a wonderful time of the season. Just days before celebrating Christmas day I shouldn't be battling the weight of this journey, but the loss of blood return in both lumens of her line has thrown me. Two days ago we lost return in one lumen then tonight the other. Just this morning we drew labs and although sluggish the blood did come back. Now...we have nothing. It makes me so afraid. Trying my best not to cry tonight. Trying not to allow fear to overcome me. Trying to be still...to be thankful that both lines are infusing. Knowing that without the ability to infuse into those lines the journey would be coming to an end for us. With that in my field of perspective I can try and focus on what we do have right now.

My plan is to take her to her appointment Thursday morning and then ask them to send us down to admitting and over to procedures to have both lumens infused with TPA. Its worked before. I need it to work again.

I'm just feeling nervous tonight. Knowing we have an infection in the line and now having functional difficulties with it I'm beginning to lose sight of what I've worked so diligently to provide for my children this week. A holiday at home. Another Christmas together. More memories. We so desperately need to make more memories. Happy ones. Filled with time in our home. Dave and I need it. Blake and Allie need it. Ashley Kate needs it.

Confirmed

2011-12-18T16:24:00.002-06:00

Just as we suspected it has been confirmed that Ashley Kate's blood cultures did indeed become identified with staph epi. Ugh!

Here we go again.

The problem with staph epi is that if forms a protective layer if slime inside the catheter making it almost impossible to clear. The antibiotics can't penetrate inside the layer to kill the bug.

I'm so disapppointed.

But...she looks better today. She is sitting up. She's giggled a few times. She's interested in her Ipad again. She's fever free. She looks normal minus the swelling in her face.

I think we just keep on doing what we are doing and watch her beat the odds once again. They assured us the last time she had this bug that it was IMPOSSIBLE to clear. It cleared anyway. I'm going to focus on that.

Holiday Happies Tour Part 3

2011-12-16T10:14:00.015-06:00

I guess I should say welcome. I really should have said it on the first post in this little holiday series, but I didn't even consider starting at the front door early this week when I began. Now that you are here again let me welcome you to our home. How I would LOVE to have you all here for the holidays and to meet each one of you who have loved, supported, prayed for, and carried our family over the last 6 years. I know that won't happen this side of Heaven, so this will have to do.

This is the wreath that greets us and hangs on the front door. Nothing real spectacular. Just ordinary I suppose, but all things holiday seem so much more than ordinary to me. It warms my heart to open up the door and enter back into our home with this hanging.

Now that the door is open and you have all come to visit this is what it looks like as you step inside. I love how our home opens up to the family room. Its warm and cozy and everyone is welcome here. I also love having a glimpse of the outdoors as I sit by the fire. Those french doors are one of my favorite changes made once we moved in.

If you look close enough you can see our little holiday tree that sits on the other side of those doors and you can also see the old windows hung on the wall with the holiday wreaths. Again, one of my favorite decorations this year.

Nothing too special in this photo, but I wanted to add it to show you how I like to scatter pine cones on anything that stays still. All through the house you will find two or three lying next to things, lying next to nothing but each other, or next to nothing at all. I totally love a great pine cone!

Another glimpse of the foyer. This table has been in our homes forever. Dave built if for me years ago out of some old fence panels and its one of my very favorite things. I just added a twisty, vine of berries to some garland and hung it off to one side. Sort of mirrors my mantle piece this year.

My newest favorite thing...a branch tree, wrapped in a burlap base and tied with a string of jute. I actually made it this morning after getting the idea from a friend a couple of months back. Its simple, its warm, its everything I love.

Here is another picture of it once I decorated it. I added some holiday tags, and then attached some jute onto the the top of some unopened pine cones and hung them from the branches. I love it both ways. Decorated or not.

The reason I'm loving this so much is the purpose its going to serve in our home. Its a blessing tree. A prayer tree. A need tree. We are going to hang our prayer requests, our praises, our thanksgivings, and our needs from the branches. I'm so excited to see God work in the lives of our family in this tangible way. Things like life for Ashley Kate, colleges for Blake, try outs for Allie, being a blessing to our patients, ministering to those in need, an upcoming exam, etc. , etc., will be written out for us to pray over.

I love it!

Just a shot of the patio tree. Nothing but super, super simple. Gives sitting outside a festive feel. It really helped to bring the inside out and the outside in this year. Love that I can view it both ways whether I'm out back or sitting inside by the fire.

I'm really hoping for some cold nights the week of the holidays to enjoy smores on the patio with our extended family.

This is the formal tree. Just a little more blingy than most of my decorations, but I do enjoy it. This is our formal dining room that sits just off the foyer and across from Ashley's play room. I really enjoy this view taken from the kitchen because I love the reflection in the mirror. This tree doesn't have a top made for it yet so I just tossed that star up there and now I realize it looks totally ridiculous. Forgive me for that?

The holiday table. Love to see the candles flickering through this cracked glass. Such a warm feeling. This table stays set all season long. We don't really use the formal dining that often. We tend to have a more relaxed atmosphere in our home. Just comfortable, cuddled up under a throw, watching a movie together.

This sits in the bay windows in the dining room. Love the idea. Not thrilled with the execution, but it is festive. Should be so easy to toss ornaments into glass, but I can't seem to get them to fit just right. I'm leaving it though. Like I said its the idea I love. I added a piney garland and some grapevine around the base and it helped me like it a lot more.

Like I shared earlier this week... toss in a pine cone, some greenery, a few red berries, and light it all up...nothing feels more cozy around the holidays.

So glad you guys hung in there with me. Hope this is what you were asking for. A few of you wanted to know where the lanterns on the mantle came from, I picked them up in Canton. Someone else asked about the greenery. I use all artificial, but would LOVE to have some real tossed in the mix. There hasn't been a good time for me to get Ash out to locate any. I do use several different types of greenery and mix them all up. A lot of it came from an old Christmas tree that I bought from someone for $15. You can't buy that much garland anywhere for that price. I've used it on everything(like the top of the bookcase:).

So thats our home this season. Turn on the carols, light a delicious baked apple crisp candle, and snuggle under a blanket. I love Christmas!

Its not so much about what you have to decorate with, but more about how what you have on hand makes you feel. Keep that in mind. My things aren't amazing or priceless or anything...they are nothing more than ours and the tradition of pulling them out each year brings back the memories making the house feel so warm and inviting. Happy decorating to you guys and Merry Christmas. I'm smiling as I type that!

Gram Positive Cocci in Clusters

2011-12-15T23:48:00.002-06:00

Ashley Kate is sick today. She went to bed last night happy, "healthy", her normal little self. She woke up this morning not right. It went from just a look that I recognized to a different type of nausea than her normal every day, to full out vomiting of an awful smelling bile(again different than her normal bile), to becoming lethargic, and running a fever.

I knew instantly it was a line infection, but really didn't want to speak it aloud until confirmed. Just minutes ago the lab called us to confirm the positive blood cultures.

I'm so disappointed. So sick over it. So sad.

She's been out of doctor's offices and hospitals for over 4 months and we vowed not to speak of it because in our world the moment you mention a "good" run it ends. Usually comes screeching to an end. I can't explain it, but its an unwritten rule in the world of transplant patients that nurses don't speak our children's names or mention that they wonder how so and so are doing and parents don't speak about how long its been since the last line infection. As soon as you do then the inevitable happens. You can argue with me to the death on this one and I will show you time and time again that it is true. Again, I can't explain this, but it is the way it is.

Just yesterday I called to make her an appointment with her team in Shreveport since they hadn't seen her in over 4 months. I wanted to make sure to take her in even though she has been amazing before the end of the year so no one would say we haven't seen her in our office so we can't write TPN orders, or send this order or that if we needed anything. Seriously, now that I went and scheduled the appointment less than 24 hours later she's sick. Why does it happen this way? It just plain sucks. Sorry for my language but it does.

We were hoping to get an early jump and start a broad spectrum by this afternoon but it didn't happen. We were given the call just before 6pm that they would call in an IV antibiotic first thing in the morning. Now even more than it did around 6 this evening it makes my stomach sick to have factual knowledge that indeed a bacteria has invaded and is attacking her blood stream. I knew it had, but was still clinging to the hope that nothing would grow out and perhaps it was just a 24 hour thing with her. No such luck this time.

So my sweet little girl lies in her bed tonight, body under attack from a bacteria that won't be identified positively for at least 2-3 more days with nothing to fight against it until tomorrow. We will be lucky to have a defense for it by noon. I'll feel really lucky if we can get meds delivered by then.

I will say that she is resting comfortably at this moment and she even seemed to perk up a slight amount this evening when her fevers broke. Those are positive signs. As always our plan is to keep her here in our home and to treat the infection with everything humanly possible as long as she is stable. My goals never change when it comes to this. Ash is better at home. She heals faster. Is more comfortable. Feels safer.

I assume its the dreaded staph or something along those lines. It seems to be our nemesis.

Nothing like be reminded of her frailty mere days before Christmas. It seems to have shattered the illusion of safety I've tried to live under the last few months.

Once again I'll remind everyone out there as I was reminded just today... this little piece of plastic that is inserted into her superior vena cava is all that keeps her alive. Its also what very well may kill her.

I hate this part of our life. Truly hate it. At the very minimum my heart is hanging on to having 4 1/2 more years with this very catheter that is infected. Thats the minimum length of time my heart is hoping for.

In all reality eternity with her wouldn't be long enough for me. So as the rain falls from the sky tonight the tears I've been holding back for so long not allowing to fall because all was "well" in our world are falling again. When Ash is sick our family hurts. Everyone of us feels it. You can see it in our faces. Hear it in our words. Catch glimpses of it when you look into our eyes.

My hope is that we turn this around quick.

A little sad

2011-12-15T11:08:00.002-06:00

Last night I sat watching Allie do her thing at club volleyball practice and half way listened to the conversations that surrounded me. You see Allie had a hard day yesterday and the two hours I spent with her between after school and before practice were hard on this mom's heart. I listened to her cry and cry and cry and not understand and honestly it broke my heart. The best advice I could give her was to go to practice and take it all out on that ball. Which she did and which is why I could only half way pay attention to the surrounding conversations because I was so focused on her and loving her and supporting her and just being so dang proud of her no matter what.

In those moments I was really thankful for learning that sometimes you just have to be on there side. As a mom, you just do. Its what they need in those moments when the hurt is so big that they can't see the cause or the meaning of it all. There are going to be days when kids mess up, and teachers are mean, and boys are stupid, and practice is awful. There are going to be days when you feel like you can't do anything right no matter how hard you try and whether its true or not thats the way you feel because your 13 years old and the only wisdom you have in your arsenal is that of a 13 year old girl. On those days its nice to know your mom can bite her tongue and listen hard and cry real tears along beside you if for no other reason than being your mom.

I like to think of it as parenting with Grace. Or perhaps mercy. Call it whatever you want. The point being a kid is going to make mistakes sometimes. Maybe lots of times and not every one of those times do you have to be the voice of reason or the disciplinarian or the long arm of the law. Sure you do some of the time, but there are times when I like to be nothing more than their mom, their safe place, and the one who will listen and not correct.

This morning when Allie woke up she was a new girl. Her old self. The happy go lucky, take on the world kind of girl determined to make today better than yesterday after learning the valuable lesson of not allowing any one else to steal a day of your life from you by letting them get in your head. It was the girl I love so deeply. The one who makes us laugh so hard our sides hurt. The one who is fiercely competitive. The one who makes me hold my breath as she walks out the front door for school because she is just that beautiful. Yeah...thats my girl.

Allie,
There are going to be days in junior high that cause you to be a little sad. Its the way junior high works. Although it may seem like the end of the world at the time its really not. Your world is going to expand and be SO MUCH MORE than you can see right now. These teachers won't be your teachers forever and that boy won't even be a memory you can recall one of these days. I wish you could see that what I'm saying is true, but I understand that you can't. I get that. I really do. I was 13 one year of my life and I didn't get it either.

What I want you to remember is that you are Amazing. Priceless. Beautiful. Set aside. Treasured. Forgiven. Purposed. Thats what I hope you can recall from yesterday. Oh yeah, I want you to also remember that a volleyball is a great representation of those who hurt you and its legal to hit "them" as hard as you want when your in the gym. Let it all out when you get a little sad. The ball can take it, and you'll feel so much better when your finished.

I love you sweet girl. Today and for always.

Holiday Tour Part 2

2011-12-14T08:08:00.016-06:00

So...I just realized after loading all of these pictures on here that I'm writing these posts a little bit backwards. After much thought I decided...I'm ok with that. Hope you guys are too! I haven't taken any pictures of the front door or foyer yet so that will be the next post which in all honesty should have been my first. Oh well!

If you are not at all interested in our simple holiday decor then please let this be this disclaimer that tells you to skip this post and probably the next and I guess the previous one too. I love to look around the blog world at other homes and get inspiration for my own so maybe you do too? Except that I may not have much to inspire with:)

Lets begin with our family room. Its the "nucleus" of our home. We all have our separate rooms in which we spend time(all of us except Dave and I. We like to share:), but this room is where all the day to day interactions and stuff happens. Its one of my very favorites! Especially during the holidays because I truly believe that evergreens, candles, glowing lights, berries and pine cones make a house a home. Just my personal belief:)

This is our family tree. I like to say its my organic tree except that Dave and Blake informed me that that doesn't even make sense. I don't care though because it describes to me what I'm trying to say about it. What I mean is that most of the decor on this tree are natural materials and such. Kind of. Anyway, here it is.

Its full of ornaments made from wood or metal or glass. No plastic or resin or anything of that nature on here. Except for the candles(too dangerous to use real ones so they are fake and made out of plastic). Love them though!

I used a lot of burlap this year. Totally love it! In red and its natural color. I use a TON of pine cones collected from our home town of Longview. Totally cracks me up to see bags of pine cones for sale in this town at Target or Walmart. Does anyone really buy them here when every other yard is covered in them? Most neighbors welcome you to pick them up and get them off their lawns! Works out nicely for me because I use them EVERYWHERE in my holiday decorations.

I added some birch branches to the tree this year. At first the guys didn't get it, but now they love the look. Just some branches randomly sticking out all over the tree. Do you see them? There's one on the top left of the tree thats pretty easy to see in this picture.

What else can share about this tree? I guess you could say I'm a Christmas tree snob. I'll never have a real tree. Great debates on this issue, but for me I like the uniformity of a fake one. I can do so much more with it. To each his own though. I only use clear lights. Totally hate the colored kind in any variety. I also HATE tree skirts. Sorry, I know there are some nice ones out there but its just not me. I ask Dave to cut down the poles on ALL of our trees so the branches either lay on the ground or they come very close to it. My favorite thing about this tree is the way the branches are fully touching the ground. Weird I know...but thats my style. Just prefer it that way.
Last picture of this tree... I promise! I wanted to show you the book shelf. I really love it this year. All of my favorite things are on it. Huge baskets of pine cones, Willow tree nativity(spread it out over 3 shelves this year and I love it), holiday pictures of the kids, copper star, candles, and lots more. Its just so wonderfully Christmas! The greenery on top lights up at night and the candles flicker making the family room so homey. Seriously one of my favorite areas of the whole house this Christmas.

Moving on around the room. This post is really getting long. You can totally skip all the words if you want and just look at pictures. I'll never know if you did so you can totally get away with it!

This is the mantle piece this year. Pretty simply. It only covers one half of it and I LOVE it. It hands off the right end and its lighted. I'm horrible at taking pics of the lights so I didn't even try to show you anything lit up. Trust me when I say how pretty it is at night with the lanterns flickering and the greenery lit up.

This is the center piece on the coffee table. Love the the pine cones, berries and candles. Again its so, so simple and thats what I love about it.

New piece made from things I already had hanging on the corner of the doors. This is something I saw in the Frontgate catalog this year but was in no way going to purchase it. I just came up with my own version. It makes me so happy.

Totally simple centerpiece on the breakfast table. This is the table we spend lots of time at together. Playing games, sharing meals, working puzzles, and doing home work. It all happens here on this table in the corner of our family room.

You can't go wrong when decorating with evergreen, berries, and candles. All of the greenery smells so yummy from an oil that I add to it each day. It smells delicious. Orange and sage of some type. Delicious!

Huge baskets of pine cones sit around the house. There are two of these on the bottom shelf of the book case.

Ok...one of my FAVORITE pieces. Not sure why I love this so much but I do. Simplicity at its best. An old window hung out on the patio...add a wreath...and its done. There are two of these pieces hung on the same wall outside the french doors. I love to watch the birds in them. Its become a very popular place this holiday season. So fun to listen to carols play and sit by the fire watching those little birds hop back and forth between the windows.

I just made an executive decision to delete the reaming pictures of this post and save them for another day. Its getting really long and boring! So I'll save the formal dining room and its decor for another day. Or not. I'll just end with one more picture. I couldn't resist.

I think she's the sweetest thing I've ever seen! Hands down she's the favorite thing in our home this holiday season.

Happy decorating to you and yours and Merry Christmas. I sooooo love saying that! Have a blessed day.

I can't believe it!

2011-12-13T22:32:00.002-06:00

After a week or so of no sign of breakage or skin infection spreading to Blake's left arm tonight we have the beginnings of the same thing he experienced two weeks ago. We (he and I) are so disappointed. He has had the toughest time trying to catch up from the classes he missed while staying out of school and has been up late into the night trying to study for days and days. He announced tonight that there is no way he can miss anymore school. Our only saving grace is that its in the beginning stage which gives us about two to three days until its completely opened up and raw. That means Christmas break will be here. The most discouraging thing is that he has a very important baseball camp in Dallas this weekend that he simply can't miss. My heart is so sad for him. I can't even imagine the pain he is going to endure during it. Not to mention how his skills will be inhibited because of it. Total frustration! The timing is so awful for him.

I don't know what else to do for him. It looks as though its going to run in cycles from arm to arm as long as the skin in under stress. Being in the middle of basketball season and winter training for spring baseball keeps it totally stressed and weak.

I'm just so sad for him tonight. We know what hes up against and its not going to be easy. Totally disappointed right now.

Holiday "Happies" in our Home

2011-12-12T22:30:00.006-06:00

We love the holidays and make no secret about it. I think I may have told you guys a few hundred times over the years how very much I love Christmas. We don't really decorate our home with Santa, or Snowmen, or any of that type of thing. I like theme trees, but really our focus is on Christ and family and not all the other stuff. I use a lot of pine cones, berries, branches, and ever green in our home. I like to add grapevine, wood, and metals to the decor as well. I'm not sure what you would call my "style", but I like to think of it as traditional minus the whole man in the red suit thing.

We have a total of four large trees this year and two smaller trees inside the house. We also have a small tree out back on the patio and two smaller trees that sit on each side of the front door welcoming those who stop by and ring the bell for a visit.

The tree's in tonight's post are my absolute favorites. I'm going to start the holiday decor "tour" with the happiest rooms in our home this season. I can't help but smile and get excited about Christmas when I enter either of Ashley Kate's rooms. They are just SO fun!

So lets peek into her bedroom.

This is what I came up with for her room. I used some of the decorations from her 3rd birthday party and created a Lollipop tree. The window and picket fence garden are always there, but I attached a couple of lollipops to the fence and hung candy garlands from the ceiling. I absolutely adore it. She does too. She loves to lie on her bed and look at books, watch the candy garlands twirl, and listen to Christmas music. Its a really, really happy place to be.

This a little closer look. The lollipops are made out of paper plates, wooden dowels, colored plastic, and ribbon. Add a little glitter swirl and there you have a lollipop. There are a few snowflake lights(taken from our red neck Christmas decor from last year) and some glittery snowflakes. The pieces of candy were created using foam discs and plastic wrap tied with fishing line.

It wasn't as full as I wanted it to be and I really didn't want to spend any money on more holiday decorations this year so I added some pieces of red tissue paper and tucked them in the empty places. First time I've ever done this and I LOVE the way it looks. Totally did the trick.

This is Ashley Kate's play room. Simply put "the happiest place" in our home. We spend a huge part of our day in this room. Every morning she is thrilled to find the snow flakes hanging from above and reminds me to plug in her lights. We stay busy watching lots of Christmas movies, playing with puzzles, emptying out toy bins, and reading books. I always love this room, but during the holidays it takes on a whole new feel and I REALLY love it.

The snowflakes are huge. We hung 9 of them from the ceiling(always work with odd numbers when decorating:) a lesson that has served me well over the years). I so love them. I found them last year and I bought them in preparation for the hospital in case we ended up back there for the holidays. It broke my heart to spend time planning to make her Christmas special last year "just in case". This is one of those things that hurt so deeply to purchase during those scary days last winter, but at the same time made me so happy to find the perfect thing to hang above her bed. Crazy mix of emotions I was experiencing during these days a year ago. Anyway, they are clear plastic and Dave and I took a couple hours one afternoon and painted the tips of them blue, pink and green. I'm so pleased with how they turned out. Ash sure does love them.

This is a closer look at her tree. I have a love/hate relationship with this netting type stuff. It looks so great in the stores and then you get it home and this is what it looks like. Oh, well...I like it enough to leave it one there and work around it. This tree houses all of her ornaments. Each year I purchase one ornament for each of the kids that represents their interests that year, who they were, what they loved. Not sure if you can see it or not, but I chose a dinosaur for Ash this year. One day she may look at it and think "what was she thinking with this one" and then I will pull out all the pictures of her with that blue and purple "dinosaur" that she loved so well. This tree is girly and sparkly and fun. It sparkles and glows so beautifully each night. Ash enjoys lying under it with her pink puppy pillow for her naps. I love to peek in on her and see her reaching and pointing at different things she finds on her tree.

Christmas this year is the same as last, but yet so different. Ashley Kate is still in need of a triple organ transplant. She still has a piece of plastic inserted into her chest that keeps her alive. Her future is still so uncertain and they all tell us her childhood will be shortened. So its all the same. Except for the fact that I don't spend my days in fear. I don't cry every day all day. Just occasionally now. I try not to dwell on what I don't have any control over. I don't agonize over the decisions anymore. Instead I just keep waking up being thankful we made it through another night at home with her and that we are being blessed with one more day. I love her like crazy. Completely. Unconditionally. I don't allow myself to wonder about tomorrow that much anymore. I just stay absorbed in the minutes that make up each moment and do my best to fill them with all the little, every day things that make this life SO special. We laugh more than we cry. We ignore more than we discuss. We concentrate on living more than we plan on her dying.

Its a new and different place this holiday season, yet still familiar. Living with the knowledge that it may very well be her last, but not waiting any longer for the bottom to drop out from underneath me.

Grasping, holding, and treasuring all the holiday "happies" in our home. In her home. Even if they are as silly as lollipops and snow flakes.

Christmas Treasure

2011-12-12T00:38:00.002-06:00

I know I will forever treasure the moments captured in our home tonight.

Ashley Kate fell in love with a very special rocking horse we brought home from storage this afternoon. She is head over heels in love with riding. I could have watched her ride for hours as she giggled and we all applauded her cowgirl skills. Sweet memories of our babies riding the range on this horse flooded our hearts as we sang the cowboy song Blake used to sing as he rode away day after day. Recalling how our little Allie was fast on his heels trying to climb into the saddle as he furiously rocked faster and faster. She couldn't be denied and would hang onto the tail of the horse with her chubby little hands. Blake would announce that he couldn't be a "real cowboy with Allie Girl on the back of his horse!" Oh, what memories!

We had a red, felt cowboy hat with a white drawstring that they would wear proudly as they mounted their horse. I can recall a picture of a diaper clad Allie wearing nothing but that hat and Blake's cowboy boots as she stole a ride a top his horse. Again he would proclaim, "babies CAN'T be cowboys MOM!"

And now my sweet Ashley has inherited that well loved horse. I could have never predicted her reaction. We loaded him into the car next to her as we drove home and she was smiling so wide. As I took her into the house she signed, "Horse, horse, horse" and told me to bring him in.

I totally love this picture. I especially love how she crosses her little feet under the belly of her horse! So precious!

So, I have a new favorite Christmas memory in my heart tonight. It happens to be the smile that crosses her face as she climbs onto the saddle and rides away.

Holiday Favorites

2011-12-11T19:29:00.011-06:00

We spent some time this afternoon shooting our annual Christmas card photos of the kids. I love so much about them.

I love how grown up our kids are. So neat to see that they aren't little kids, but rather amazing teenagers.

I love no longer seeing any signs of the boy my son was, but instead looking into the face of the young man he has become. Oh how I love him. He still takes my breath away. I love to visit with him. Listen to his plans. Chase his dreams.

I love the beauty in my Allie's eyes and the light that shines on her hair. She has grown up to be so beautiful. So fun. So sweet.

I love EVERYTHING about my little Ashley.

Her long brown hair, twinkly eyes, and puffy cheeks. I even love the ornery streak that is seen on her face in almost every photograph. She was in no mood to be photographed today and gave us quite a show.

I love her new "pouty" face. Its a sight we see around here quite regularly. It cracks us up each and every time!

The photographs aren't perfect. They aren't professional. But...they are a true reflection of my three favorite people in this world and when I look through them I can't help but smile. This one is my personal favorite. You just can fake true joy and laughter! I told you Ash was a mess today. Thankfully her big brother and sister have a sense of humor.

I'll never know why He chose to bless me so. I'm so thankful to be their mom. So thankful. Can't wait to send you all the cards. I had two different styles made and I love them equally as much so deciding which one to send to who is going to be difficult. Keep an eye out for them in the mail box.

I'm planning to share some photos of our holiday decorations later this week. I know many have been asking for a while. I'll do my best to take some and let you peek into our home this holiday season. Love you all.

2011-12-09T12:46:00.002-06:00

Sweater dress, suede boots, and a hair ribbon instead of a bow... my little girl's struggle flashed before my eyes when I came across this picture this morning. She is growing up. Despite it all...she's growing up.

How can I not see the goodness of the Lord when I look at her face?

I'm finding it a little unbelievable that we will be spending another Christmas together. A holiday at home with sweet Ashley. This year has been an amazing journey of one day at a time, not looking to tomorrow, but finding the miracle of who she is today. May God keep my eyes focused clearly on her today's and spare me the heartache of wondering about her tomorrow's.

It truly is a blessed season for our family.

Looking forward to some precious days off surrounded by the sounds of our children's laughter ringing through the rooms of this home. One more week until it all slows down and we get to enjoy the true meaning of Christmas together. I can't wait!

Hope your weekend is blessed.

One of THOSE days

2011-12-07T13:48:00.004-06:00

Its just been...one of those days. Nothing really different happened to cause the rush of thoughts and emotions and opinion to rise up. They just surfaced today and I'm fighting back the tears as I process it all...again.

I've gone back and forth with myself as to if I should write it out or not. If for no other reason than to know that I am not alone in my thoughts. Or maybe just to get it out so that I don't feel as though its drowning me. Perhaps there are other parents out there just like me who are tired, weary, and basically ready to just accept what it is and move on with life.

I want to make perfectly clear this post is not directed at ANY one. Not at any specific discipline. I have a feeling some will take offense and yet none is directed or intended. I'm just venting. Because I need to.

Its been more years than I can count and perhaps there has never been an occasion as to which I have read any other word written in regards to Ashley Kate's prognosis other than POOR. Needless to say it stings every single time I read it. Every single time. I have been defiant at times in regards to such opinion. I have been accepting at times. I have been numb. I have been defeated. I have risen up and declared to fight.

Now I'm just at this place..."ok, thats what you have to say about her... so I'm determined to allow her to enjoy life... Period."

But...its not that easy. When you parent a child with disabilities you are automatically thrown into a whole new world. Not just the world of learning to live with those disabilities but a world where you are expected...forced...coerced...told...that she must have therapy. There I said it. This post is about therapy. In all forms.

I'm tired. Tired of all of it. Each has its place and I'm sure each discipline celebrates huge successes in some cases but in my experiences we do the same things over and over again, year after year, some with familiar professionals, others with new ones. Always searching for the answers, or progress, or "normalcy" to find out that after 6 years we are basically in the same place. I have spent years with rigid schedule and then the last year without a schedule at all. My opinion? Because its my journal and an accurate and honest account of Ashley Kate's life....not much has changed. Today I wonder if I'm the only parent out there with this experience? Am I the only one discouraged? Am I the only one who wants to look at the whole world who is telling me "she has to be in therapy" and say to them " Ummmm, NO. NO Thanks. We choose NOT to put her in therapy." Am I the only parent who feels as though this is not even an option in the eyes of the rest of the world?

I choose to allow Ash to just be Ash. She is beautiful. She is very intelligent. She is happy. What more can I honestly expect her to be. She will NEVER be normal. Its not going to happen. I could put her in therapy every waking hour of every single day of her life and she's not going to achieve that. Guess what? ITS OK.

This is what I believe to be true about Ashley Kate. As her mother and the person who spends every single day of her life with her its my opinion.

Ashley could walk. I think she could. The issue being...Ashley has no desire to walk. No want to. No understanding of why she should. So there. Until someone can give that desire to her its not going to happen. If it does I'm ok with it...if it doesn't I'm ok with that too. She is HAPPY. She is full of JOY. She is CONTENT. She is the purest form of all of these things that I have ever encountered.

Ashley doesn't talk. I really don't believe she ever will. She doesn't have the desire to do so and I have yet to find any "magic" in therapies that will give her that desire. You can sit in front of her all day long for the rest of her life and play with her and if she chooses not to ever speak then she chooses not to speak. As much as it breaks my heart not to hear her voice in my home this is the whole of it.

Ashley can't eat. Feeding therapy has never been successful and will never be without a bowel. It is what it is. Will she ever get another bowel and another chance to try and learn? I truly have no idea.

Just last week a therapist sat in our play room and said..."she should have some occupational therapy too. She would really benefit from it." I just sat there without a word to say. Yes, its fun. Yes, she enjoys it. Yes, she should probably have it. She's had it off an on for 6 years and the results are always the same. She stacks blocks, and holds crayons, and writes, and does puzzles when she feels like it. Not when she's being watched. Thats all I could think of. She has never done what they needed her to do at the time they needed her to do it. So...she fails. Every single time. Same result. With every therapist that has ever worked with her.

I guess what I'm saying is, as her mom I know there is a need for therapy and at the same time I don't see the need for therapy. Wow...its really out there now.

Today I'm discouraged. Discouraged by a world full of "professionals" who feel the need to tell me how wrong she is and that she needs to be corrected when I've come to terms with exactly who she is and I have accepted. She is in a wheel chair. She is fully TPN dependant. She can't talk. She does not eat. She is in diapers. She is tied to a drain bag 24 hours a day connected to a g- tube. Guess what? She is AMAZING and blessed and so, so, so happy.

Now its time to get her ready for therapy. Go figure.

Time of the Year

2011-12-02T10:15:00.002-06:00

In case I've forgotten to mention this is my absolute FAVORITE time of the entire year. I love EVERYTHING about the holiday season. There is no stress found here in our home when it come to Christmas. Only peace. I just enjoy every single minute of it that I possibly can.

The lights on the tree, the smell of delicious candles burning, wrapping gifts, and listening to holiday classics make me so, so ,so happy! Ash and I spend the day wrapping and placing gifts around the tree and surprising the older kids with new ones while they are away at school. Its just SO fun around here.

Ashley Kate still has no concept that Dec. 25th is different than any other day of the year. I don't know if she will ever understand the passing of time, days of the week, months of the year, or holidays, but it really doesn't matter because every single day is a celebration to her. The joy and excitement don't come a few days a year in her world. She experiences them every single day. Oh to live a life like my sweet Ashley. She loves life. Its all so exciting to her. I absolutely love watching her eyes light up each morning as she "tells" me to plug in the trees or watching her react with such surprise each day as we walk into the play room under a covering of snowflakes that hang from the ceiling. Every day she acts as though I've just hung them up to surprise her, but they have been there for weeks! Its so funny. She is just joy. Absolute joy! I love her sooooooo much.

Thank you so very much for praying for Blake this week. He went back to school yesterday. He is healing. Still in pain from the infection, but its a bearable pain. I'm so thankful to see him smile again. To watch him function normally again. He's doing really, really well and I hope this never happens to him again. It was miserable! I had to laugh when he told me his friends were showing the pictures to some of his teachers to gross them out. I can't believe he sent them to them! I guess thats just being 16 and a guy. I think its crazy that this all started during a wrestling match with his cousins. One little scratch in some dry skin and his entire arm looked as though it was going to melt away. I'm truly thankful we are in a better place then we were earlier this week.

I hope your enjoying your holiday season. Its simply the most wonderful time of the year. May God bless you and your families today. Love yall. Trish

Recent Favorites

2011-11-30T21:48:00.007-06:00

Just wanted to share a few of my most recent favorites. I snap pictures almost every single day of her life. Never knowing what will become my favorite moment, my favorite memory. All I do know is that I sat in a hospital room a year ago this past July and mourned the moments I had failed to capture. I feared I'd not have the opportunity to see some of those things ever happen in her life again. I learned a lesson during that time. I never wanted to have another regret. Never.

Here are a few photos I've snapped over the last week or two. Its just my sweet Ashley being Ashley, but there is something in the eyes, the smile, the face of this child that makes my heart smile. I can't put my finger on it, but I know that I LOVE her so deeply I fail to find the words to even describe it.

Blake and Ash watching Allie play in her first basketball game this season. I love how much she loves her big brother and even more than that I love how much he loves her.

Allie and Ashley at before Allies game this week. I love these girls. Love that I have girls. Love saying...my girls.

Such a beautiful picture. She is so much more than I ever dreamed she could be. I never imagined she would be so lovely. So much about her is broken...so much about her is absolutely perfect.

Big girl. She's working hard again with Sue. Against her will, but still working. Some day...maybe some day... she will walk.

Your eyes do not deceive. She is standing there, taking steps, without our assistance. She doesn't walk miles, but those few inches might as well be miles in her world.

Ash has no desire to walk. She doesn't think she's missing out on anything by not walking. I wish we could figure out how to get her to want to. I truly believe that is the missing element in this whole equation. The want to. I've never seen her not figure out how to do something that she wanted to do...she's always come up with a way...she just doesn't want to walk.

Honestly, I think I've come to the place in this journey that I'm ok if she never does. It doesn't define her. If she walks I'll celebrate with her...if she doesn't I'll celebrate who she is anyway. I won't pretend it doesn't make my heart smile when I see her standing there though.

Update

2011-11-29T12:48:00.004-06:00

Blake has a bacterial infection that invaded through a break in his skin in an area of his elbow that is affected by Eczema. It looks very, very similar to EB, but it is not. The outside layer of his skin is being eaten away. Its blistering, opening, and oozing. Very painful.

For the first time in his entire life he is taking an antibiotic, a steroid, a pain medication, and using a steroid cream. Very new territory for him and for us. Blake has never even taken so much as infant Tylenol! We are working very hard to figure out a nutritional plan to help settle the Eczema. We are very hopeful we can keep the infection from spreading to his left arm. There are 3 small breaks in the skin on his left, but currently it is not blistering or painful and the doctor does not think it is yet infected. They did warn that it could be spread to it by simply scratching it.

He is currently resting. He is not going to school today, but hopes he can handle it tomorrow. I'm not sure if he will be able to or not.

Dave spoke to Blake's coach early this morning and he was very understanding. We are grateful for his reaction. I think it is making missing the game and possibly the tournament this weekend more bearable for him.

Our hope is that in 48 hours we will begin to see some healing and progress. If not, the doc would like to see him in the office Friday morning. Your prayers are very appreciated. Thank you so much for loving our family.

Prayer for Blake

2011-11-29T08:12:00.002-06:00

Its not often that I bring a need here to this place other than my sweet Ashley, but this morning I am.

Blake is in an unbelievable amount of pain this morning. His body is having some type of auto immune response. We are desperately searching for answers this morning. It has never done this before.

I thought about sharing pictures to give you a visual understanding of the degree of his pain, but honestly I think they would be even more gruesome than sharing Ash's transplant pictures.

He is home from school today. Determined to go yesterday it was the hardest thing he has ever done. This morning the surface area of his skin affected by the attack has more than doubled. His skin is broken, raw, blistered, and oozing. It is beyond description painful. My heart is so broken for him. He stands in the back of the house screaming behind closed doors and crying uncontrollably. He is exhausted. Simply exhausted. No ability to rest or find sleep for two nights now.

I've got calls into physicians offices hoping to get him in today.

I hate to say this but its a normal part of our world to see Ashley Kate hurting...never easy...but unfortunately part of our life. It is very not normal to watch the older kids suffer.

Blake was so determined to play in tonight's game he wrapped the raw skin yesterday, practiced, and then fell completely apart last night. This morning he realizes there is NO way he can endure the pain. He is out for tonight and more than likely for the tournament this weekend. More brokenness on top of the physical pain.

Please whisper a prayer for him today. A prayer for answers and at the very least some type of pain control so that he might find rest. I've never had to watch my son endure anything of this nature and its breaking me.

Home Again

2011-11-27T22:01:00.002-06:00

Tonight we made the trip home from my sister's. Dave and I visited about how amazing this trip was for us. Really we couldn't have asked for anything more. Both the drives and the visit brought us such happiness. We were so content to spend time with our kids, my siblings, my parents, and my nieces and nephews. It seems our lives are pretty out of control most days with all the hustle and bustle of raising our kids, running a business, and managing Ashley's cares. We don't have much down time to just enjoy the relationships we've been blessed with. What matters most to us in this life are those relationships. Investing in them and allowing ourselves to slow down over the last 4 days was exactly what we both needed.

We sat still. We laughed. We ate. We played games. We laughed some more. We shopped(well my sisters and I did). We visited. We planned. We played some more games. Then we laughed even more. Seriously, playing a board game with my brother and his wife last night, one of my brother in laws, and Blake was probably the most fun Dave and I have had in months. I haven't laughed that hard in forever. It was the perfect memory to end the holiday on.

I especially enjoyed watching my 4 year old niece interact with Ashley Kate. The two of them were absolutely precious. My heart could have burst with the happiness I felt as I watched those two little girls together. Just another memory I'll forever be thankful for.

I never fail to wonder as I lay my head down back in our "home" town each holiday we spend there what life would have been like if Dave and I had not moved away. Both of my parents live there(they split up when I was only 7 year old) and all 3 of my siblings live there too. We are the only ones who don't live there. The only family unit out of all of us that moved away. I long to be there in the midst of it all sometimes. So when I'm "home" thoughts of what life might be tend to cross my mind. Last night as the thoughts came tumbling into my head I glanced across the bed at my beautiful 6 year old daughter and immediately knew we were never meant to stay "home". Never. There was a purpose in our move all those years ago and mere inches away from me there she was. Our purpose. My purpose. God had something so amazing in mind for us the day we packed up our moving van and ventured out into the great state of Texas that even my wildest of dreams could have never imagined. No more longing or wondering or imagining what life would have been...He settled it for me right then and there. We are home. Here in Texas with the kids. All three of them. Had we never have come she would have never become ours. Its that simple. Its that profound. It was His plan. His amazing, wonderful, undeniable plan for our lives. Ashley awaited us, years down the road from that moving day, and only He knew.

So tonight as the house has grown quiet, and the lights have been turned off, I sit here in our family room and I stare at the reflection of the Christmas tree in the glass on the doors across the room from me. Its my favorite place to sit, to be, at this time of day, during this time of the year. Its so warm. So welcoming. So home to me. I never feel more content in my life than I do during moments like this. The kids all sleeping in their beds. Dave retiring to our room. Me sitting still, absorbing my surroundings. I'm so grateful. My heart takes note of all I am being given. This time. The memories. The gift of her life. Its hard for me to want to be anywhere else but here and I realize that as good as it feels to go to our "home" town it feels even better to come back home.

It was a blessed Thanksgiving for my family. I can't think of one that has ever been more precious to me. It was one more I wasn't "supposed" to be given with her and yet He gave it anyway. I can't put into words the thoughts of my heart on this subject. They are just too...indescribable. As I look toward the Christmas holiday I imagine sitting here in this spot with our sweet Ashley Kate just feet away from me tucked warmly into her tiny bed as I log each days events into the memory of my heart. I hope to never find our family scattered across the miles from each other again. In the deepest parts of my heart He knows my longing, my hope, my desire for this little family of mine. Although I'm too afraid to voice them aloud, I've shared them with the only One Who can make them more than just a dream.

Truly, with God all things are possible.

Hoping your Thanksgiving was really amazing and wishing each and every one of you who still follow along this journey with us a very, very blessed holiday season. Make the most out of the moments you are given. They are an amazing gift. Love you all. Good night.

Thanksgiving Travels

2011-11-23T15:58:00.003-06:00

I'm so very grateful to be on our way toward my next favorite place on earth! Nothing in the world feels better to me than to be in our own home or in my sister's homes. Its the best feeling to know as you lay your head down at night that you are surrounded by those you love and those who love you. Its the definition of peace. To be home.

Ash is SO excited to be going on a trip. This little one loves to travel. Be it on the loop driving past Red Lobster(one of her favorite land marks in Longview) or on the highway destination unknown to her. It really doesn't matter as long as she's in the car. She is so, so happy when she's in the car!

If I've learned anything in my life its this...Relationships are what matter most. People mean so much more than possessions. I'd give it all up in a heartbeat if asked to choose between those I love or those things I've been blessed with. I've never been sorry for investing in the lives of others. I've never regretted giving of myself to another person. I've never kicked myself for giving something that belonged to me to someone who could use or appreciate it. I'm at my best self when in service to others. I think if the truth be known we all are.

So as we head out on our Thanksgiving travels I'm focused squarely on the people we are going to see. Excited to spend time with my closest friends in this world. Blessed to be looking in my rear view mirror and seeing all 3 faces of the most amazing kids in this world. I'm sure we will laugh a lot, argue a little(two teenagers crammed in a car for 6 hours pretty much guarantees at least some of this), and sing a carol or two. I'm so looking forward to this!

Hope your evening is blessed.

In this Place

2011-11-21T17:57:00.002-06:00

I sit here tonight so grateful to be in this place. This place that I sit this year. Approaching another holiday with Ashley Kate. Its such a different place than last year. Not a lot has changed. Not much more than my attitude. My acceptance. My approach.

I was so frozen, so afraid, and so panicked. I didn't know how to close my eyes at night. I couldn't stop the tears from falling. I wore the hurt daily. Not intentionally, but helpless to shed it. To read the written words of my heart bring me back to that place. I can feel the ache. The abandonment. The betrayal of all I thought her life was to be. It was raw. It was real. It was shattering.

This year the circumstance has not changed. Not one bit. We still face the unimaginable. We still have doubts about our choices. The timing. The outcome.

But...

I've learned to be thankful for a few things that I couldn't be thankful for a year ago. Some of it may sound a little strange, but this year, in this place, I am thankful for these things...

CVC's - Central Venous Catheters. I used to HATE them. All they represented. All the danger. All the risk they posed to her life. Now I can say I am truly grateful for them. Without them she would not be with us. Without them we would have no hope.

TPN - Total Parenteral Nutrition. It keeps her alive. Sustains her. Nourishes her. Allows her to grow. To mature. To develop. Every night as we hang that bag of yellow liquid I am thankful we have it. I can be thankful for it because she is no longer dying because of it. Once we added...

OMEGAVIN - her liver is functioning normal again. I can't express how deep our gratitude runs for those little glass bottles of white liquid that infuse into her veins each night. It balances it all out. I don't know how it works or why it works. I'm just GRATEFUL that it does work. I can't ask for anything more than that. She is not dying from liver failure. She is thriving.

This next one is a big one. Its HUGE. Its taken me a long time to get to this place, to admit, to view it through these eyes, but I think I can say that at this time, in this place that I am in tonight I can say...

EX PLANT - Wow. In those days, when this all began, it was the WORST thing that could have happened. It DEVASTATED us. All of us. I hurt so deeply. I cried so hard. So hard I was ill. Physically I became sick every night when I allowed it all to rush over me in the darkness. Nothing in my world was alright. NOTHING.

But...

As I listen to her giggle in these moments as I write I CAN be thankful for it. It saved her life. The transplanted bowel was killing her. The bowel in combination with rejection and the thymo treatments we gave trying to save it were killing her. I sat by her daily and watched as she struggled to stay alive. It was the worst time of my life. The absolute worst. I can't imagine it being any harder than it was during those days. Once we took the bowel out of her she began to slowly, and painstakingly come back. It was not a quick or easy process. It was long. It was hard. It was scary.

In this place though I can see how God used that ex plant to keep her with us. He allowed that bowel to be removed successfully. He kept her safe during those horrible, horrible days. He brought her back with a renewed zest for living. Her joy is FULL. It is CONTAGIOUS. It is everything I mourned it would never be again and MORE.

There is a freedom in living that comes from not having to be afraid of rejection on a daily basis. I don't have to count and keep up with every cc of fluid that escapes her tiny body. I don't obsess over every runny nose, temp, or emesis. Instead, I live. I allow her to live. I watch her play and laugh and experience life with all the joy she can muster.

I know it may be hard to understand how I can be thankful in this situation, but on the other hand how can I NOT be thankful. Look at her. Look at all we are being given. Being blessed with. Each day is filled with happiness. She giggles so loud and so hard that we can't help but giggle too.

There are hard days ahead. None of that has escaped me. I can't even imagine being back in the throws of life and death with my little girl, but I know that I will indeed be there again. I know this. Its just that when I think of all that I am thankful for this holiday season these are the words that keep coming back to me. If I had to sum them all up...CVC's, TPN, OMEGAVEN, EX PLANT...what I'm really trying to say is...provision.

God in all His wisdom, in all His mercy has PROVIDED. I am truly thankful for that. Truly. Beyond explanation.

For some reason...

2011-11-16T10:31:00.002-06:00

I'm finding this little girl to be especially beautiful this week. I catch myself watching her sleep, watching her play, watching her sit, watching her smile, and she captures my full attention with her beauty. Sweet...simple...beautiful. Nothing earth shattering to write about other than realizing how incredibly blessed we are for these moments. Every day I whisper to Him that I love her and that I'm so thankful to have her here.

Peeks

2011-11-14T08:13:00.003-06:00

Just two small peeks into the way my sweet Ashley views this world. Two peeks that brought laughter, smiles, and joy into our hearts. Reminders of what an amazing little girl we have been given and what an even more amazing God we serve.

On the way to Blake's baseball games yesterday we were running tight on time. As we took a left turn we could see a set of rail road crossings coming down. "Ugh" is what Dave said aloud as Blake and I thought the same thing.

But then...

How quickly our perspective changed.

As Ash heard the sounds of the engine and the toot, toot of the whistle warning everyone that it was indeed on its way down the tracks her excitement was building. We watched as Ashley Kate let out a HUGE sign for "Woohoo " then followed it with an " Ole' !" She waved furiously as the cars passed and the smile on her face and the giggles that escaped her mouth became contagious. We all sat in that car with her enjoying every single car that rumbled along those tracks in front of us realizing that being a few moments late to the batting cages was SO worth this moment. That train made her day! She was so happy.

As we drove across those railroad tracks moments later Blake shared with us, "I love this little girl!"

Just a couple of weeks ago we sat outside the fence of the ball field waiting for a game to end and for Blake's to start. The second baseman attempted to zip the baseball over to the first baseman to make a double play. The ball was overthrown and went right past the glove but crashed up against the chain link fence right in front of Ashley's chair. She giggled as she signed, "Woohoo!" and applauded. To her what made the play great was the up close and personal look of the baseball as if it had been thrown into that fence just for her. The sound of the ball crashing in front of her made it all the more thrilling. I smiled as I realized how frustrated both players on the field were for the over throw and missed opportunity compared to the joy on the face of my 6 year old.

Its all about perspective. The players were unhappy, Ash was SO happy. She assumed they were playing with her. The ball was thrown against the fence just for her. She thought those boys had done something amazing and even though they may not feel that way, she sure did.

We can't help but be blessed when we allow ourselves to view each day, each little happening, through Ash's eyes. The world is a happy, happy place, filled with excitement that thrills her little soul. Oh, HOW I LOVE THIS CHILD. We all do.

Have a blessed day.

P.S.

We now have tubing. Thank you to all those who helped and all those who prayed we would get some.

Late Night Conversations

2011-11-11T12:56:00.002-06:00

There are days when the silence in Ashley Kate's life is so loud that it deafens me. I watch her play from across the room and will her to make a sound. Just once... say something...anything! I ache inside as I wonder what life would be like inside these walls if we did have a 6 year old who rattled on and on and on. Would we ever tire of hearing what she had to tell us? I think not.

I stood in the shower the other day praying and thinking and wondering what I would give back to her if the Lord allowed me to choose just one thing in her life. It didn't take me long to feel the smile creep across my face as I said aloud "her voice"! And then I laughed out loud when I realized how loud I had been talking to myself. Its not a secret how much we miss hearing all the things she could be telling us. There are moments of frustration for her and for us as we work on communicating and figuring out what she is saying.

Then as I lay next to her each night in her tiny bed and we talk about her day I realize that she is indeed speaking to me loud and clear. As I recount aloud to her all that her day held she giggles at some things, and her eyes sparkle at others, then her lips smile as I see recognition and attention in her face as she remembers all that I am talking to her about. Some days she recounts to me a story or two about the day in her own language. Its not so much the language of ASL, although the basis for it begins there. Its more Ash's language. Her own signs. Her own gestures that honestly only the 5 of us can understand. She's a funny girl. She has a great sense of humor and the things she chooses to "tell" me about make me laugh out loud. She commands the room each night with her requests and her story telling. She understands her world and she allows us to be a part of it. I'm so thankful for that. Truly I am. How painful it would be if she chose to reside there without us being there with her.

I treasure our late night conversations. The time of day where its just the two of us who remain awake. I look forward to listening to her. We sing songs some times. She makes her requests by signing star, or chickens, or farm, or whatever it is she wants me to sing about. I do my best to sneak in a line or two of Jesus Loves Me, but much to our dismay she has an issue with Jesus these days. I'm not sure what is going on with her and Him, but each night she pushes me off of her bed and waves bye when I begin to sing about Him. Its a little funny. At least when I shared with Dave what was going on we both laughed out loud. I'm sure its temporary. At least I'm hoping it is!

I guess I'm just missing her sweet voice these days as I visit with her. I know she has so much more to share with me if only her little hands could figure out how to say it. I've given up on so many of our dreams for Ash over this last year. Choosing instead to just enjoy her and to allow her to be happy rather than pushing her to do more and more and more. Its been a sweet year. Filled with lazy days of playing, cuddling, and giggling. I don't regret our choice to slow her life down a little bit. I really don't. Sure it would be nice to see her walk and run and jump, but its not my focus anymore. It would be great to have a back pack filled with books and pencils rather than IV pumps and tubing, but its not going to be that way for Ash. And...Its... ok... Really it is. Painful but ok. One thing we have decided to do though is work with her speech. Were going to try at least. As a family we all agree that if we could give her anything it would be a voice. So...as we venture out on this old but new again venture wish us luck. With a little of it we might just hear her say a little more some day. Maybe we won't, but maybe we will.

Until then I'll just keep listening to the silence and filling in the blanks for her until I get it right. Trust me when I tell you she lets me know if I'm choosing the right words or not for the blanks. And that makes me giggle. Out loud.

Looking For

2011-11-08T21:29:00.002-06:00

Tonight I'm looking for some supplies. I know there are several parents of medically fragile children who follow along Ashley's journal and perhaps you have some lying around that you no longer use.

For some unknown reason we have not been able to get the correct tubing from our supplier lately. A shortage from the manufacturer or something like that. Anyway, what is being sent is not working with Ashley's line. We are unable to infuse her Omegaven through it. Her liver isn't as happy as it has been without it and so I'm looking for some on my own. Anyway, this is what I'm needing to locate. Its a Curlin Infusion Administration Set REF 340-4128(the one with the blue filter for lipids). I know in times past Ash has been on TPN then come off and we have had extra supplies on hand(actually we have been using the tubing we had on hand for the last 2 months, but now we are out). If this is the case in your home and you happen to have this infusion set of tubing on hand would you mind contacting me and consider selling it to us?

Thanks so much. Trish

Pieces

2011-11-06T11:36:00.002-06:00

Trying to put into words the thoughts and feelings that swirl around in my head and in my heart lately is proving very difficult. I think on the outside I'm doing a pretty good job of appearing as though its all ok, but on my insides there are two of us who know my fears. Hiding anything from Him is a futile attempt because He resides there and knows whats going on.

There is a picture I saw once of a water pitcher that had been dropped and shattered into hundreds of tiny pieces. The pieces had been collected and painstakingly glued back together to resemble the shape of the pitcher prior to it being dropped. I stared at the pitcher for a while and thought to myself, although it is once again a water pitcher it will never again be a water pitcher. Its ability to hold water is no longer. Lately it seems as though this picture is what comes to my mind when I sit and attempt to share. I've been trying to not see it each time I sit down at this keyboard, but the honest truth is that every time I come to this journal its what I see. So then I close it without writing a word because I don't really have the words to share.

That pitcher reminds me of my heart. It was shattered, broken, and scattered into a hundred pieces last summer as I watched my sweet Ashley suffer. I stood there helpless to change the situation we had been placed in and I stand here in our home this morning helpless to change the consequences of that situation. I am merely a broken pitcher whose pieces were scattered, collected and glued back together. I myself didn't put my heart back together. My hands have done nothing but shake for the last 16 months. I could not complete such a task. I do feel as though He has been putting my heart back together. Slowly. Its not without cracks. Not without leaks. Not without flaw. It does however resemble the shape of what it once was though.

Life today is good. Sweet. Precious. Our Ashley rests in her own bed, plays in the playroom, and giggles in our home. It looks as though things have settled enough for us to put the brokenness behind us, but yet nothing has changed in her circumstance. Nothing is different. She still lives with a broken body. She still is kept alive by a liquid collection of minerals that are mixed inside a pharmacy each week. She still hosts a long piece of plastic inside of her chest that was threaded up her hepatic vein toward her heart, tunneled through her tissues, and hooked into the top of her superior vena cava. It is the longevity of that piece of plastic that determines her future. So nothing has changed. A bowel did not spontaneously or divinely grow and appear inside of her abdomen. Its not there. What one was there is no longer.

So as I look into the smiley face of our 6 year old I experience many emotions that seep through the cracks of my heart. It has been repaired never to be the same again. In some ways thats a good thing. I've learned a little more through the brokenness about the awesomeness of our Father. My faith has been strengthened. Yet at the same time my faith has been weakened. I don't know if any of you can relate or make sense of those last two sentences. I see Him for Who He is and yet do not understand His ways. I realize that without Him life is not sustained and though I've always known this I REALLY know this now. She does not live another minute or breathe another breath without Him, and neither do I. I am encouraged and I am afraid.

There are cracks left between the pieces of my heart that can not be ignored. They are there. Just as I saw them there in the image of that water pitcher. Yet what leaks into those spaces is a mixture of joy and sadness. Tears and laughter. Precious and painful. I can't remain the same person, wife, or mother that I was before July of last year. I'm different. I appreciate a little more and I cry a lot more too. I am happy and still I hurt. I am more grateful for the little things that make up our days and I miss some of the bigger things that I realize will never be. They have been stolen from her. From us.

The days ahead of us are just as uncertain as they were a year ago. I'm hoping for another today, another tomorrow, another Christmas, another everything. For I know one day there will stop being another for us. Still in the exact same place I feel as though I've been before. Still broken, but picked up and repaired. Pieces. No longer scattered, but collected and placed back together allowing the hurt and fear to seep through the cracks a little less frequently than they did this time last year. I'm grateful for that. For His goodness and His presence around us.

A little bit more

2011-10-28T19:36:00.007-05:00

Tonight Ash and I are sitting here with the guys watching the World Series so I thought I'd try and finish up the Carnival Detail posts. Not promising this is it, but I'm trying to answer the questions that are coming my way.

My biggest tip is still to make lists. The next tip is to know your budget. My party planning spread out over a year which enabled me to do more than I had originally planned. We also did all the work ourselves because we enjoy doing it, but that really cuts down on cost. I can't really give you a good estimate about the cost because I didn't keep up with it that well. Much of what we used we had such as the drapery fabric, some of the wood, etc. I would encourage you to have in mind what type of games, booths, props you want to have and keep an eye out. A great resource for those of us that live in east Texas is First Monday Trade Days in Canton, Tx. I found old bottles, vintage chairs, coke crates, bowling pins, fabrics, prizes, the old black and white poster on the front of the kissing booth, and much more out there. If your in this area then I recommend you plan on getting dirty out at "tent city" in Canton and dig, dig, dig through the piles of junk. My next tip is to use google images. I could brainstorm and dream and come up with idea after idea just looking through other peoples events. Lots of fun!

I'm going to cover a few more areas in this post and show in a little more detail a few of what I've already been over in hopes of answering questions. Lets start with...

Center Pieces. They were made out of party boxes(from Canton). We glued Styrofoam in the base of the box and then filled it with shredded paper. We added a large red pinwheel(had to paint all of these since we couldn't find red ones) a popcorn box(filled with real popped corn:), a box of animal cookies, box of cracker jacks, large sugar cookies in the shape of lollipops and ice cream cones, a red clown nose, and tickets. I LOVED them. We placed two per table on opposite colors of paper. We had lime green tables and red tables and we had lime green and white polka dot boxes and red and white polka dot boxes.

Seating. We had four 6 ft tables on the concession side of the yard. Each table had chairs on each side for eating, but then we had the blessing of borrowing a set of BLEACHERS! Such a great idea. It provided lots and lots of seating for the party and allowed the crowd to gather for the magic show. It was the best!

Decorations. We added a huge yellow banner to the front of the house that said Happy Birthday Ashley Kate along with a large balloon arrangement. I ordered 600 balloons in sized from 12" to 3 ft. Balloon are so much fun. We also added the long, squiggly type(picked up at Dollar General). We had a large Happy 6th Birthday poster printed at Walgreens that showed pics of Ash over the last year. It sat at the front walk on an A frame built out of foam sheets. I spent a few days sewing pennant banners out of fabric. I regret not having a good picture to share of those because they were really sweet, but I did show one pic above of the layout of the yard and you can see them hanging between the trees. We hung several sets of them all around the grounds. You can also see how we laid out the cake walk in that same photo. Hope that helps.

Volunteers. A party this size requires help. Lots of help. I can sum it up in one word...TEENAGERS! They were awesome! They did everything from acting as vendors, running carnival booths, painting clown faces, and performing as clowns. I LOVE the kids who showed up to help at Ashley's party. We have the honor knowing each one of them very well since they have grown up with our kids or have become close friends of our kids. I can't thank them enough for being there for us. Such a blessing. One way to recruit kids to help is to remind them that its a great community service project. They are busy doing lots of things these days to add to all those scholarship and nomination applications.

In addition to the teens our parents and sibling were a great help. They all worked in the concessions and kept things running smoothly allowing Dave and I to visit with our guests.

Photography. I can't emphasize this enough...You need a photographer. You just do. We have the blessing of having a close friend in our lives who knows everyone. Seriously, she does and she blessed us the last two years by contacting friends of hers who happened to be photographers. It has been the absolute best thing to ever happen at one of our birthday parties. The photographers gifted us with their time. HUGE blessing. I will cherish this collection of photographs for a life time. Capturing Ashley's birthdays and knowing we have the memories preserved makes my heart smile. Never to be forgotten. If you don't know of one then hire one. You won't regret it. Trust me.

Also I want to emphasize adding a Photo Booth to your party. No matter the theme. It is such a great idea. So fun for your guests. So fun for you to have. I LOVE the groups of photos we have from the booth. It is simple to do. Collect hats, boas, sunglasses, silly wigs, scarves, etc. I made the lips and mustaches out of felt, stitched around the edges and glued them to dowels. Love, love, love how they turned out. I found those black hats in the foam crafts at Michaels and glued a large flower and a strip of ribbon on them. Simple.

Guests. This birthday was so important to us. We were so unsure Ash would live to celebrate her 5th birthday last summer and so to make it to her 6th with all that we had been told to expect her life to be was so AMAZING. We wanted to celebrate her life, but we also wanted to include and to bless those who have loved, supported, stood by, prayed for, and even stepped in during our absence over the last year for our kids. We simply wanted them to have a good time. That was my goal. Make memories for our family to hold on to and to have friends be a part of that.

As I look back through the photos of this party I can't help but smile. The children had a great time. It was so fun to watch them all run from this to that and to host them at our home. It blessed my heart to see Ash there with all of them.

We had 103 guests attend Ashley's birthday carnival. We will forever be grateful for the role each one of them has played in her life and in ours.

I'm going to wrap this post up tonight. I know there are a few questions I haven't gotten to yet, but I will get there. Just not tonight. Hope you enjoyed the photos. I'm enjoying them as I sort through them all again. Such a wonderful memory.

More Carnival Details

2011-10-27T09:44:00.010-05:00

Ashley Kate is still asleep so I've been working on some more pictures and details. I came up with an easier way to share the photos. Hopefully these groups of photos will better help explain how we set things up. If not let me know and I'll try and be more specific if you need more help.

The Cake. My sister is a VERY talented cake designer and baker. She has made all of Ashley Kate's birthday cakes and they are amazing! Give her a theme and allow her imagination to run with it. I loved that she Incorporated pennants into the design since I had spent so much time sewing some to hang from our trees. The cake was three layers. Three flavors. Chocolate, Strawberry, and Vanilla. So delicious! So cute! I loved it.

She also baked all of our cupcakes for the cake walk and all of our sugar cookies in the shape of lollipops and ice cream cones. I used the cookies in the center pieces on the tables and also offered them at the concessions. So yummy!

Entertainment. We had a balloon artist, clown, face painter and magician to entertain our guests. The balloon artist was the absolute BEST I have ever seen. His talents were amazing! I would highly recommend hiring him if you are ever needing one.

All of the face painters in the area were booked on our date and so "Tract" our balloon artist had his wife come with him and do the face painting for us. I had intended on hiring an artist who could paint full face masks for the kids, but since that didn't work out this did. She was actually pretty good at what she did. No one seemed to notice that my original plan didn't work out. I don't think we missed out on anything.

The magician worked along side "Tract" as well. He did a good job at including the kids in the crowd in his act. There was nothing super amazing about the show, but I believe it did add a little something to Ash's party. In all the pictures of the crowd you see people smiling and enjoying themselves. That is exactly what we had hoped to happen.

Clowns. It really wasn't in my budget to hire more clowns so I did the next best thing. I used teenagers! We ordered a couple of costumes for them and they did amazing! I really wanted to have clowns roaming around the grounds with big bundles of balloons and posing for photo ops with the kids. Blake and John did such a good job for us.

Concessions. One of the biggest elements of the entire party. Food! Lots of detail and planning went into this part. We housed most things underneath a 10x20 tent. On the front of the tent we hung fabric pennant banners and a large refreshments banner. The drinks were kept cold in large tubs of ice right in front. Everyone was welcome to come and go as they wished and have as many items as they wished.

We offered the traditional carnival type fare. Cotton Candy, Popcorn, Snow Cones, Hot dogs, Corn Dogs, and Funnel Cakes. We also threw in some hot and fresh French Fries, along with giant Pickles, fresh Lemonade, ice cold Soda Pops(complete with carnival labels) and Waters.

We had vendors who walked around the carnival offering bags of fresh peanuts and boxes of animal crackers. I used some old Coke a Cola crates and some striped ribbon to make the vendor boxes. One of my absolute favorite details! We also used the old crates as props and decorations. They held the mason jars for lemonade as well as some empty soda pop bottles.

We did a lot of printing. We made our own labels in Carnival or Circus fonts for candy jars of Circus Peanuts, Salt Water Taffy, large suckers, and little gumball machines. We added labels to the front of the pickle jars as well. I loved all the details. My favorite parties are those that include lots of little details and personalizations.

Banners. We hand painted all of our banners. I saw this style of banner on google, but I needed them to say several different things than the four that was offered. I also wanted them to be much bigger so we just made our own. After tracing the first one off a power point we made a set of stencil letters in this style. I bought the craft paints from Walmart. Apple Barrel was the name of them. We again used the drapery fabric backing. After the paint dried we sewed hems around all four sides and took them to a sign shop where they allowed us to use their grommet tool. I think they charged us like .25 cents each.

All of the fronts of the midway were banners as well. I was very pleased with the look of them all.

Believe it or not there is more to come. I told you this would be SOOOO boring for those of you who are not looking for ideas for a carnival party. I think I can wrap it up in one more post. I promise I won't do anymore than that! Have a great day!

2,505th

2011-10-26T23:01:00.004-05:00

Hard to believe I've shared my hopes, my hurts, my heart, and my home that many times in this forum. Its been 5 years of blogging the good and the bad. The life changing and the mundane.

Tonight I'm sitting in the family room alone. All of the kids are fast asleep. Dave just went to bed himself. The house is quiet. Peaceful. Smells delicious. Feels safe. Just the way I like for it to be. Not sure why I'm sitting here when I too should go lie down. There are just days when I'm very aware of where we are on this journey and my heart aches and my heart rejoices in this big mangled mess of emotion.

Things are so good right now and yet nothing has changed. The same unsure future, short expectancy, and awful medical decisions still loom over us. They still hover around in my head and sting my heart at the most unsuspected times. I have no idea what we are doing. Other than living one day at a time. I stay busy with Ash all through my days and my evenings are spent running here and there with Blake and Allie playing one sport or another. Allie is currently playing volleyball, basketball,and soccer as well as cheering. Blake is playing baseball(of course) and basketball. Just this week we've had a volleyball game, private basketball lessons(I love coaching and this gives me the opportunity to do it in small enough time slots to make it doable, plus Blake and Allie get more time on the court while I'm there), the start of the school basketball season, a club volleyball meeting, a canceled cheer appearance, a scheduled club soccer practice and baseball practice for tomorrow, but only after basketball practice is over, and two upcoming baseball games Sunday afternoon. Some times I get confused as to where exactly it is I am headed as I pull out of the driveway, and yet I LOVE being here for every single minute of all this. The kids stay busy and active and too exhausted to get into any trouble and I'm convinced this is why they are such good kids. Discipline breeds responsibility. Athletics gives them that. I'm so grateful for their able bodies. So grateful to be in this place with them.

I'm working on lots of things for Ash this week. Looking to get scripts written for her riding lessons back out at Windridge. We've never ridden with a central line, but I know its something she loves and enjoys and I'm developing a plan to protect that precious line from any contact with the horse. Also looking into getting scripts written for home nursing(although we still don't have any prospects) and for a private speech therapist. I don't want to schedule her days to the extent they once were before her explant. I don't believe she is up to that much activity each week, but I do think she would enjoy and benefit from some. Her liver looks pretty angry this week on her labs and I'm not so sure why. I've been suspicious of something the last week or so and especially today, but nothing has declared itself other than some high liver enzymes and an elevated bili. The liver in connection with a functioning central line are the keys to keeping her home and away from transplant. As long as her liver can still do its job and her line is in place and working then we are good to continue life as if we haven't a care in the world. She's not sickly this week, just different. More lethargic, sleeping longer, a low grade temp but nothing too alarming. She's just a little less active than I like for her to be and in combination with her liver numbers it has me scratching my head and saying, "makes sense, but not sure what's causing it".

I don't know, its hopefully nothing. I like having nothing going on with her other than the obvious lack of a vital organ:)

Anyway, the holiday decorations are soooo close to being complete and each day I love the house more and more and more. Its very peaceful inside these walls and peace in the midst of this unsure world is a treasure. I only have a few more things to finish and we are set to do nothing except sit back and enjoy it all. I'm counting down the days till November when the joy of the holiday season is in full swing. I totally hate Halloween and don't acknowledge it in any way, shape, or form. Its just not something we choose to celebrate. So...less than one week until it passes and then nothing but the joy of the holidays will surround us.

Hoping your all well and that your homes are filled with peace this evening. Goodnight.

Long Awaited Details

2011-10-26T12:10:00.023-05:00

Ok, I know I've promised for months to do this. I really am working on it. Its taking forever though. I think the easiest thing to do is put it into parts. It will probably end up being several posts.

Wow, where do I begin? There are lots and lots of details but figuring out what to share and what really isn't that interesting is a little overwhelming. I guess the best thing to do is jump right in and warn you that if you aren't interested in a Carnival themed party then go ahead and skip right over this post.

All of our banners, signs, games, decorations, etc. were made. We used a drapery backing fabric to make all of them. We painted and sewed and built for hours and hours and had a GREAT time as a family working on Ash's birthday. Some of our best memories of the party were the days we spent together creating it. My biggest tip in party planning it to make lists. I keep a spiral for each party and I add ideas, hopes, dreams, etc. of what I want to accomplish for each party. I simply work through the spiral in the weeks leading up to the party. Obviously not everything always works out, but overall I'm pleased with the results of this years party. I'm already planning her 7th!

I'm going to begin with the games. So... Lets start with the MIDWAY.

The MIDWAY was a project that we began designing for Ashley's party a year in advanced. Remember that this party theme was originally planned for her 5th birthday but was abandoned because of the turn of events when she rejected her bowel and we spent that birthday at the transplant center.

The red and white striped fabric is an indoor/outdoor upholstery fabric that Hancocks ordered for me. I had ordered it when they had their 50%off sale which made it more affordable. It was actually very simple to design. We built 5 frames out of wood(mostly 2/4's) leaving the front of the frame open then attached them across the tops. This was Dave's area of expertise. I don't really use power tools. Across the back we stapled the fabric panel across the top and then we sewed side panels to separate the different booths. The scalloped awning was cut(used a paper plate to draw a pattern on computer paper) , stitched along the edge with a zig zag to keep it from fraying and then stapled along the top.

There were 5 games included in our MIDWAY.

Bullseye( created off a picture I found on google images, sent to power point, projected on the wall, traced, then painted),

Fish bowl(small glass gold fish bowls that you toss a ping pong ball into to win a prize),

Dart throw(use a piece of peg board and pull the tie of the balloon through to hold. ordered darts from oriental trading),

Three strikes(built an A frame out of wood and stacked bowling pins that I picked up at Canton and spray painted . Then used baseballs to throw and knock out the pins.), and

Ring toss(I bought old coke crates and glass bottles in Canton then found a package of plastic bracelets at Dollar General to use as rings). That was it! Super fun and super simple, but I truly believe it made the biggest visual impact of the whole party.

The prizes were picked up from all over. Large inflatable animals, bats, guitars were ordered from oriental trading co. and big stuffed koo koo birds I grabbed at Walmart. I also used those large punch balloons as a prize(Dollar Tree I think). We had crates with small prizes attached to the fronts of all the booths that held things like tattoos, stickers, ring pops, bouncy balls, silly glasses, picture rulers, etc. Prizes were simple but fun. The kids loved playing the games and picking prizes.

We provided prize bags for each guest to collect all their winnings in as they enjoyed the carnival. Not only did it make toting all their stuff easier it also was a great little party favor for everyone who attended. They were canvas tote bags ordered from Oriental Trading Co. They came in a variety of colors. A sweet friend did all of the embroidery for us and I can't tell you how helpful that was to us. Dave and I were painstakingly trying to get my little machine to do them and it was taking hours and hours!

Photo Op. This was attached to the far end of the MIDWAY. I again located the picture on google images, projected it through power point, traced and painted. This was my favorite piece of everything we created. I totally loved how it turned out and love all the silly pictures of our guests that we have.

There were a few other games included in the carnival around the grounds.

Bozo's Grand Prize Game was created by screwing through the bottom of 6 red sand pails and attaching them to a length of board. Then the kids stood at the end of the board and tossed a ping pong ball into the first bucket to win a prize. Then the second, third, fourth etc. The further you could toss the ball the more prizes you won.

Duck Pond. I can't imagine hosting a carnival without this game. Its a favorite with toddlers. Simple to do. I filled a red plastic tub with water and I ordered the weighted ducks from Oriental trading. Painted the pink ones red to go with my color theme. The others were already yellow and blue. Then I took a sharpie and wrote numbers on the bottom. Pick a duck and turn it over to see what number you picked and that number tells you which prize bucket you pick out of. Ashley really enjoyed this game. One of my favorite pictures from her party!

Cake Walk. Love this game! We cut 12 large circles out of plywood. Painted them red, yellow, and blue. Painted large numbers on the front and laid them out in a circle on the grass. We played carnival music as the guests walked from circle to circle. When the music stopped we drew a number out of a bowl and whoever was standing on that number won. The winner chose from an array of yummy cupcakes baked by my sister(whose cakes are amazing!). We packaged them in individual carnival themed cupcake boxes that I found at Oriental trading. Too cute!

Kissing Booth. I loved this! We built a little kiosk type booth, painted the traditional red and white carnival stripes, and stapled a painted banner across the top. At the booth there was a huge jar of candy kisses and tiny slips of paper. Each guest made their guess as to how many kissed the jar held and our attendant tacked their guess on the booth then planted a kiss on their cheek(using a red ink pad and lip stamp:) Toward the end of the evening we announced the number of kissed and located the winner who took the whole jar home.

Photo Booth. Seriously, another one of my favorite parts of the whole night. The pictures are SO much fun to look at. Again, we built a little kiosk, painted it, hung a banner that read Photo Booth, and a fabric back ground. I had picked up two red vintage chairs at Canton for the participants to sit in. They were old, vinyl was cracked, legs were rusted...they were perfect! I placed a basket full of hats, wigs, feather boas, bow ties, felt mustaches and big sets of lips next to the chairs. I had Allie model the props, took pics, and sent them to Walgreens to have a big poster made to help the guests figure out what to do at the booth. We tacked the poster onto an A frame we fashioned out of pieces of foam and set it up next to the booth. It was so fun!

Pie Eating Contest. Loves this. We set up a little table in the middle of our seating section and covered it with some of the red striped fabric we had left from the midway. I took two pieces of old plywood and painted them white, taped them together at the top with duct tape and set up an A frame. I painted "Pie eating contest today" on both sides and set it on top of the table. I got tiny tin pie pans at the Dollar tree and individual fried pies(I think they were Mrs. Bairds?) at Walmart. The participants got on their knees around the table, hands behind their backs, and ate away! It was hilarious! 4 or 5 big teenage guys and one little girl participated. It was great!

I'm going to wrap this post up. I've been working on it for more than two hours. Crazy, I know! I think this is a fairly good representation of all the games and activities we offered. I can't really think of anything else. Of course there are a thousand pictures that I could show you but getting through them it taking forever. Hopefully you can see how we created each game and how much we all enjoyed participating in them. If you have a specific question feel free to ask and I 'll try and answer it for you.

I still have entertainment, decorations, and food to go over. Lots more carnival posts in the future.

The Invitation

2011-10-23T21:43:00.009-05:00

I used to dream of play dates, sleep overs, first days of school, Thanksgiving plays, and Christmas parties. I don't remember at what point in her life I gave up on those dreams and replaced them with dreams of

Just spending one more day with her. One more good morning, one more afternoon, one more kiss goodnight. One more birthday, one more holiday, one more season.

I guess when I gave up on that first set of dreams I just assumed birthday invitations went along with them. That they wouldn't be a part of her life either.

But then one was extended and it never crossed my mind that we wouldn't attend. As a matter of fact I would have moved heaven and earth to have her there to celebrate her little friend's birthday.
And as sweet as it was to watch her little friend twirl circles in her Alice dress, and listen to her giggle as she jumped in the bouncy house, it was just as sweet to me to watch the wonder and excitement and joy in the eyes of our little Queen of Hearts.

She attended her first party ever yesterday, and it was the sweetest Alice in Wonderland Tea Party I have ever seen. I watched my little girl sit at the table next to the birthday girl and it was hard to hold back the tears. As the little ones ran and played and squealed with delight our Ashley rolled around in her chair and drank kool aid, played croquet with the Queen, threw bean bags down the rabbit hole, and left two hours later just as sticky, and sweaty, and happy as any other guest that had attended.

As I closed my eyes last night I smiled knowing that we had lived another day, celebrated another milestone, and allowed Ash to experience life.

Without a doubt it was an invitation I will remember for a lifetime. Hers and mine. Thank you so very much for extending it. It meant the world to the mommy of the little Queen of Hearts.

Laughter

2011-10-20T08:21:00.003-05:00

Early in the mornings I hear it spilling out of her room.

Throughout my afternoon the sounds of it fill her play room.

Late into the night she's still giggling so loud that I hear it all the way down the hall and through a closed door.

What would my world sound like if she didn't exude joy almost every second of her life? I can't even imagine.

Never could I have envisioned a life filled with so much happiness. Never could I have envisioned a life with such sadness either, but trust me when I tell you every tear I've ever cried over her struggles has been replaced ten fold with her joy and her laughter!

This morning I'm focused on her smile, on the sounds of her giggling, and on another day of her life lived right here inside the walls of our home. Her home.

I'm grateful.

Cross Roads

2011-10-19T11:34:00.002-05:00

Wow, life is busy in this house. Seems as though the weeks are flying by, running all together, and before I know it another one has gone. I find it hard to believe we are in the middle of October already. At the end of volleyball season and at the beginning of basketball season.

So many thoughts, plans, dreams, wishes, and emotions run through my head these days. Usually at night when the kids and Dave are all sleeping. I lie awake and sleep doesn't come to me because all that's right in my world collides with all that is so very wrong and I'm trying desperately to make it all come together.

I stay busy running from this practice to that, watching Blake and Al play in this game or that, and juggling sports equipment, uniforms, and cleats in the back seats of the cars trying to cram them in around cars seats, wheel chairs, pumps and IV supplies. What a contrast! I have two children who can do it all and try to and then my youngest cant do any of it. Talk about emotional! Most days I just cram and adjust and rearrange and ignore the "sting" of it all, but every once in a while it catches me off guard and I wonder what if. What if I had a tiny size 9 pink soccer cleat thrown in the back with a Dora the Explorer soccer ball to go with it? Wow, it makes me smile to imagine what that would feel like.

I find myself at a cross roads as of late. I think its time to make some changes in our home, but the thought of change terrifies me. The idea of it all freezes me and makes me afraid. I have no idea where to start of how to even accomplish it, but I think we have come to the place in Ash's life where we need some outside help. I have done everything possible to keep from having strangers in our home to assist with Ash because I want life to be normal for my family. I have never asked for nursing care, never considered it, and never wanted it, but as I face a very busy fall and winter season ahead I realize there is no way she or I will be able to keep up with the schedule. The older she gets, the more she grows, and the longer those legs of hers become. She is so tall and yet has never stood up on her own. She is so heavy and yet has the most petite features. She is six years old and as much as I hate to say it out loud she is completely dependent on me. Oh, don't misunderstand my words, she is fully independent in many ways. She doesn't need me to entertain her or sit next to her every minute of the day. She plays independently all day every day. What I mean is that she does not walk, or talk, or eat, or dress her self, or get out of bed on her own, or sit her self in a chair, or give herself a drink of water, or use the potty. I once stood outside our car visiting with an acquaintance while Ash sat inside strapped into her car seat. The woman I was talking to very bluntly said, "Do you realize you will be caring for her as if she were an infant for the rest of her life?" OUCH! That was my initial reaction. I had never thought of Ashley Kate like that. NEVER. Not even once. Then I was angry. Almost defiant. Tears sting my eyes even now as I remember those words. She wasn't being mean, she was being observant, but still the pain from hearing her words was raw and still is.

For Ash's entire life the only ones who have ever cared for her are her daddy and myself with the help of our moms coming to sit with Ash while we run here or there with the busyness of the older kids schedules. I don't want to have anyone else do her cares. I feel as though its a private act to change the diaper of a six year old, or one of her ostomy bags. I also feel it is 100% my job as her mom and not anyone elses to do her medical cares. Dressing changes, TPN, g-tube issues, drain bags, etc. My mom has been a great help with Ash while I'm gone, but other than her no one has ever done these things for us. Problem is that my mom doesn't live here. She comes to help out for a couple of months at a time, but she doesn't live here and can't live here. So...I need to figure this all out.

I guess what I'm struggling with is that I think I need a sitter, but not just a sitter. I need a qualified and trained nurse who can sit with Ash while I sit across the street at a volleyball game, or while I travel an hour away to a basketball game. I don't want a nurse to come in and change dressings, or give cares. I just want a nurse to come and sit with Ash, interact with her, and be here if by any chance an issue would arise with her central line, ostomy bag, dressing, drain, or g tube. I don't even know if that is realistic or not. Seriously I don't know how this works 6 years into it. I've heard other families speak of respite care or nursing care, but have no idea how to secure it. Its new territory for me.

At this time I plan on taking Ash with me. She is older now and she does enjoy getting out of the house. She doesn't adjust to new situations very well, and I am anticipating some very embarrassing, difficult struggles, during some activities. I think that is to be expected. I also anticipate that she nor I can physically keep up with taking her to everything that we do each week. It is simply too difficult to transfer her body that many times a week. On her and me. So this fall we will embark into this new place in our lives. Try to figure it all out day by day and enjoy as much of Blake and Allie's teenage years as possible with their little sister in tow.

For those of you who currently have help in your homes with your kiddos if you have any tips, advice or experiences you can pass along I would welcome your emails to help us figure out what is best for our family and assist me in making a decision in this area.

All three of my kids are growing up and I'm determined to be a mom to each one of them to the best of my ability for the time I am given with them.

Questions and Answers

2011-10-11T11:54:00.002-05:00

To the best of my ability, I'll answer them:)

Seems as though I'll go for weeks on the blog without too many questions being asked then all of a sudden my email will be flooded with just questions. I'll answer a couple today.

1. How do you create the props for Ashley's birthday parties(particularly the Candy Land party and Carnival party)?

Well, its really very easy. We are NOT talented, artistic people. Seriously, I'm not. I can however hold a pencil in my hand, trace, and then do a little "paint by number" or so. That is exactly what we do. I find my images on google, load them in a power point, project them on the wall, tack up a piece of fabric or plywood or MDF, or whatever and then trace away. Once they are traced I simply paint in the colors I see on the images on the screen. Its really SOOOO easy. Time consuming, but easy. Really fun too when your all working on it together.

2. Will you ever share the details post you mentioned from the carnival? Or the ones from Ashley's 5th birthday in Omaha?

Yes. I'll try to. I recently received another disk of photos in the mail that contained some of the images I was hoping to share with you guys. It will take some time to write, but I'll work on it this week. There were over 2000 photos taken at the carnival so it seems overwhelming, but I think I can do it:)

Ashley's 5th birthday is a hard one for us. I'm SO glad we held that party. It was amazing. But...its very, very emotional for us to view those photographs. She was dying. It was horrible. We were determined to give her a party for memories sake, but sorting through the images is still something I struggle with a year later. I don't know if I will ever go through those on the blog again. I did make a slide show of photographs. I'll consider just sharing that.

3. What do you do with your leftover props?

I store them in the garage. Its over flowing! I don't know why I hang on to them, but I do. If you live in Longview and need a few props for a Candy Land theme I could probably hook you up!

4. How is Ashley doing since her fall?

She is doing well. Her face is healed. The lacerations on her gums have finally sealed shut. She is no longer bleeding. We can brush her teeth gently. She has some very large gaps in her teeth that I am trying to adjust to. Very hard for me to see. She will not push her chair in the house. She remembers her fall and refuses to use her chair. She will sit it in, but only point for us to push her where she wants to go. She will take off in it once she is outside though. She will not sit up for more than a few minutes since her fall. We aren't sure what is causing this, but she only wants to lay down. We are working on it, but so far we haven't had much luck.

She has another dentist appointment this Thursday.

I look at her today and its so hard to believe she escaped with only missing teeth. We could have been dealing with injuries much more severe. I'm so grateful. So grateful for His mercy in Ashley's life.

5. How is her health?

Good. Really it is. I mean we have to consider the fact that she doesn't have a vital organ necessary for survival anymore, but other than that its good.

She is strong. She is happy. She amazes us.

Her labs show us areas of concern every once in awhile. Her liver is tired with each new infection, but bounces back. Outside of being TPN dependant I can almost forget that a year ago this past summer even happened to her. I haven't forgotten, but I almost allow myself to.

Ashley will need a transplant to keep living. She will. Its a fact. A fact we aren't focusing on at this time. She is doing far better than anyone could have predicted and we are taking it all one day at a time. I'm not confident that she will survive another transplant. Its that lack of confidence that keeps me hanging on to her here in our home for as many days as I can. Currently, she is strong. If or when she shows us that her body is wearing out then we will re-visit it all, but for today she's home.

We are concentrating on her today's. Rarely allowing ourselves to even converse about her tomorrows. Its too painful to dwell on. To discuss. To even consider. It almost seems that our family is living in denial, but we aren't. We are just choosing to live rather than miss out on a moment we are being given. We know what is coming. We just don't know when so why waste what we have?

In all honesty its been more than two months since I have even received a call from the transplant team. We do all of Ashley's care here locally at this time and won't return to Omaha unless there comes a time that we need their specialties to intervene. We don't go back for check-ups. We don't consult about much of anything with them except for where we stand on listing her. I think they do receive a copy of her lab work every other week or so, but other than that she is basically out of sight and out of mind. Thats ok with us:)

One last thing for today. I don't have your email addresses. When you ask me direct questions the only way I can answer them is if you leave your email for me. They don't come through automatically. I'm happy to converse with those of you who have specific questions for me and I promise I'm not ignoring you. I just can't get in touch with you unless you leave your address.

Hope you all have a great day. God bless.

Her one and Only

2011-10-10T20:57:00.002-05:00

There was a time, a very brief time in her life, that she spoke her one and only words. Ever. It was the sweetest sounding word my ears had ever heard being spoken by the sweetest little girl I'd ever loved. It was "my mama". Thankfully we captured that sweet, sweet sound on a little video clip shortly after her transplant. It was November of 2006.

She coded in January of 2007.

Since that day I have only ever heard it once, in a whisper, as she lay her head on my shoulder one night. I'll never forget it. It gave me hope at a particular point in this journey that I was struggling to hang on to any.

Never have I heard her speak it again.

Tonight she lays on the couch in the family room, wrestling with her big brother, and loudly proclaiming the only other word she's spoken with great clarity and purpose.

"Bubba"

It is currently her one and only.

As I sit across the room from the two of them, I'm watching and listening, and doing my best not to cry because I realized a moment ago that if she could only ever have one word to speak I'm glad that she's chosen for it to be "bubba".

I'm glad for his sake because he loves her so very much.

And even though the rest of us love her just as much there is something special that the two of them have together. Something I can't quite describe in words, but she does as she loudly and so intentionally yells for her "bubba".

Holiday Update

2011-10-09T18:21:00.002-05:00

4 down, 2 to go? maybe 3 if I'm really in the mood to finish them all.

Still have the center pieces, garlands, mantle, and kitchen to work on.

Tonight its feeling really, really wonderful in our family room though, and it makes every single minute spent on it worth it. Nothing more I love to do then to sit in this room in the evenings surrounded by the members of this family with the Christmas tree lit. It really is magical!

If all goes according to plan our decorating will be complete by the end of the month and we will have the next two to enjoy it.

I'm not crazy, just focused on enjoying every single day of her life and not looking at tomorrow until I have to. Christmas is in full sight and happens to be the only "date" I have left of the things we want to accomplish in her life this year.

Living in Texas

2011-10-09T12:16:00.011-05:00

All ready to go. "Where are we going, mom?"

In case ya'll haven't figured it out yet...we live in Texas. Where its ok to wear bows bigger than your head! Ha!

In Texas, its just tradition, or whatever you want to call it, to spend your Friday nights at the high school football game.

In case I haven't told ya'll yet(see how "Texas" I'm being today with all the ya'lls:) I don't like football.

But...

It was Friday night, it was Homecoming, we have two teenagers who were attending, and it was the "thing" we were supposed to be doing...so...we loaded up Ashley Kate and went. I figured it was a "right of passage" or something like that for her since she is a Texan.

Let me be honest and say that it is not my idea of a good time to take Ash in public and have people stare at her "antics". It makes me want to crawl in a hole. Literally. Its more my hangup than anyone elses. Just part of our life I haven't really gotten used to. You see, I can't make her be quiet. I can't make her not throw a fit if she so chooses. I can't make her do much of anything. I just have to role with it. So...I did.

I am so glad we took her. It was rough for the first 20 minutes or so. She was out of her element, not sure she wanted to watch a football game, or listen to the announcer, or see the cheerleaders up close and personal like, or hear the drums of the band play. Then what we had hoped would happen for her did indeed happen.

She adjusted. She got happy. She started to clap. She smiled. She laughed. She enjoyed the sights, the sounds,

the crowd, and the lights. It became fun. SO fun. For her and for us. For the next 2 and 1/2 hours she totally enjoyed the game, and we enjoyed having her there with us doing something so normal for most other families in this town. In this state for that matter!

I learned something about myself Friday night. Something I should have figured out years ago. I don't really care what the crowd around us sees, or thinks about us and our 6 year old. We are determined to allow her to live and experience this life she has and part of that includes Friday night football games and such.

Holding up her hands in hope of getting a football from the cheerleaders.

I also learned how incredibly grateful I am for the friends who are in our lives. The true friends who LOVE us and who LOVE Ashley Kate. Those who just come right down where we are sitting with her and who talk to her and love on her and become a part of her world. You can't put a price on people like that. You just can't. So in this "semi-public" forum I want to thank you guys for being there for us Friday night. For encouraging us to bring her. For checking on her and us throughout the game to see how she was doing. For making us feel like a normal part of your Friday night. I love you guys. More than you will ever know. For the big things you do in our lives and even more for the little things. You know, like stopping to say hi the other night, for speaking to Ash, for bringing your little ones down and posing for pictures with her, and for just being our friends. Love you guys so much.

She did indeed get one and it made her whole night! She was so happy with that ball!

Who knows you might see us all there again soon. She really did have a great time. Minus that first 20 minutes you all had to witness:)

For some reason she really loved the goal posts? Go figure, I would have never guessed that one!

And then we took her home and she slept. Really, really well:)

16

2011-10-02T06:32:00.004-05:00

Back to Back Weekend 2 run Homers! We were so blessed for you!

Blake,
16 years ago this morning, at 6:03 a.m. you came into our lives and your Dad and I were forever changed. Immediately from your very first breath you began to make us better people than we had ever been before.

I remember those moments like they took place yesterday. I saw in your face all that I had ever wanted and yet never knew existed until that day.

You are so much more than our son. Every day I learn more and more about the person God has created you to be and every day I love you more because of who you are. I have watched you grow up while I sat in the front row of your life (lucky me I have a season ticket and it will never expire:) and I have cheered for you, prayed for you, cried for you, laughed with you, and enjoyed you. What a game! The best one I've ever had the privilege of being a part of.

Last night as Dad and I drove away from the pond we laughed so hard as we remembered the many times you and your friends have spent down at that pond. Those crazy camp outs have given us some of our best memories with you, and I know they have created some of your best memories with the guys. What a great group of friends you have! You are truly blessed.

When I think of all the reasons I love you the way that I do Blake its hard to put into words to you this morning just how much I appreciate who you are. I not only love you, but I LIKE you. If you weren't my son, I would still want to know you. I think that speaks the loudest to your dad and I. We like who you are. I once heard that if you parent right the day will come when your children choose to be more than just your child. They will choose you as one of their friends. Oh, Blake! how blessed we feel to be your friends. I don't know if I really believe that we did anything right, but I do believe that God broke the mold when you were created. There aren't too many young men out there like you. You are a prize. One to be treasured. As you continue to grow we pray that God will protect and bring to you the one He has chosen just for you.

Blake, I am so thankful for you. I watch you in your role as the big brother in our home and my heart smiles. You have been given such a responsibility to those two little girls and you have taken it seriously since the day they came home to you. You love them fiercely. I love that about you! You are protective over them and proud of them. I have so many images in my heart that I will cherish for a lifetime of you with them. Quiet moments in our home like when I find you sitting next to Allie on her bed helping her through an Algebra assignment or when I discover you fast asleep next to our littlest blessing in that tiny bed of hers. A smile on her face and one in your heart as you both find rest. There are loud moments too. I love those just as much.

What do I love the most about you? I love that your loyal to those you love. I love that you are kind. I love that you are fun. I love that you are a leader. I love that you simply could care less what others think about you. You are who you are and that is enough. I love that! I love that you are protective. I love that you laugh. You laugh hard and laugh often. Just like your dad. I love that you are thoughtful. I love that you are determined. I love that you have BIG dreams. Why dream if not to chase the big ones? I love that about you. I love that you are full of joy. I really love that about you. I love that you work hard. I love that you play even harder. I love that you think of me. I love that you pray for Ashley Kate. I love that you love baseball. If you didn't love it then we wouldn't love it either. I love that you surround yourself with good people. Quality young people who are driven to be their best. I love that you take time every day to show Ash that she is important to you. I love that you want for her life to never end and for her to never hurt again. I love that you take on junior high boys to stand up for you sister. I love that you are not afraid to let them know they have to get through you to get to her. It makes my heart smile. I love that you believe in yourself. If you don't believe in yourself then no one else will either and you taught me that lesson. I love that you have inside jokes with you dad that no one else gets and no else needs to get. I just get to enjoy the laughter spilling out from both of you in those moments. Its enough for me. I love you. All of you. Every single part.

This morning Blake I want to encourage you to stay on the path you are on. Keep being who you are. Continue to work hard. Take time to laugh. Love with your whole heart. Seek His ways. Don't waste a moment of your life on things that don't matter. Remember where you come from. Don't hesitate to come to us on the good and the bad days. You are safe here. You are loved. You are appreciated.

Happy 16th birthday. Make it a day to remember and don't eat too much of cheesecake before you take the field. Looking forward to spending this day with you and watching you do what you love the most. Hit another one kid! Dad and I will be in the stands cheering for you today and everyday for the rest of our lives. Thanks for making me a mom and giving me the season ticket to the game of your life. I love you. Mom

Planning

2011-09-30T08:47:00.003-05:00

Our home is busy, busy, busy. Full activity. I love...Absolutely LOVE this time of year.

Give me a plan and a list of things to do and I'm a happy girl. So much is going on. So much happening.

We have a 16th birthday coming up in just two days. HOW does that even happen? If you are a new mom or have a toddler underfoot please trust me when I share with you these words...before you can blink they will be grown. Time goes sooooo quickly. Seriously, it seems like yesterday I was sitting in the middle of his sandbox, expecting Allison Brooke, and listening to my two year old saying, "Wook mommy, wook at this!" Oh HOW I LOVE my son! There is no end to the wonderful, positive things I could say about this child of ours. I could write for the next two days about Blake and still not have adequately described who he is and what an amazing role he plays in our family. I won't do it today, but trust me by Sunday its coming. Today I'm busy working on his birthday plans and getting things lined up and ready to host his very last camp out at his grandparents pond. Its a tradition with him and his buddies. We've been doing the same thing his whole life, with the same group of guys and when asked what he wanted to do to celebrate this year this is what his hearts desire was. So...with tears in my eyes I'm working on it all. Packing tents, sleeping bags, and ice chests. Gathering plastic bats and wiffle balls for the game of the century. Collecting old towels, flashlights, and bandannas for one last round of capture the flag in the woods. I'll drop them all off tomorrow evening and come back early Sunday morning to collect those who are still standing. Then its off to Dallas for a double header on the day he turns 16 years old. In his world life doesn't get any better than that.

Tomorrow Allie has a volleyball tournament. We will spend most of the day over at Spring Hill watching her set the ball for her teammates. Super excited about all that's been planned for her 8th grade team. A sponsor had tournament tees and string backpacks made for all the girls to wear and we are packing those back packs full of goodies to get them through the day and spur them on to victory. Can't think of a better way to spend a Saturday before hosting Blake's party.

In between all of this I'm still decorating for the holidays. The dining room and kitchen are overflowing with totes and boxes. I have both of the girls trees done. Ashley's is truly amazing this year. She LOVES it. I find her laying next to it several times a day watching the lights and gazing at ornaments. To add to the festive atmosphere in the play room I'm painting large snowflakes this afternoon to hang from the ceiling. She's been watching Rudolph and Frosty for the last few days which totally cracks me up. She chooses her own movies and just to see her flip to her Christmas selection makes me smile. She is SOOO my daughter. She is so happy these days. Not a day goes by that I don't whisper to the Father how thankful I am for her being here. Not a single day. Life is truly sweet during this time. I think the fact that we are living days with her that weren't expected to be given to us just makes everything pale in comparison to the joy we experience while listening to her laughter.

Homecoming is next weekend. Big deal at our house this year. For the first time Allie isn't going single and Blake is. Funny how life can change when you least expect it too. What I love most about my kiddos is how they have learned to find joy in most circumstance. They are happy and light hearted. Ashley Kate is a constant reminder that life is good and they are blessed. Our teenagers have an amazing, God given ability to concentrate on what's important in their lives and I know it only comes from their experiences with Ashley Kate's struggles. Even in the hardest of days for our family God has done amazing work in each of our hearts. The little things don't really get them down. Not when they have a bubbly, giggly, smiley, and oh so happy 6 year old to come home too. She's been a healing presence in our home through the years. I love that for them. Really, really love that.

So, I'm off and running. Hoping to get it all accomplished and in place today so tomorrow and the next runs as smooth as possible for my kiddos. Being a mom has got to be the very best job in the world. I'm a lucky girl! Take care.

5 years

2011-09-28T08:32:00.002-05:00

Has it really been that long? It seems like it was yesterday, and yet it seems as though that yesterday took place a lifetime ago.

When I answered the phone that morning my heart began to race. In the words of our GI physician we had "pulled the trigger". No going back. If I had known then what I know now I wonder if we would have ever "pulled"?

I remember running through the house packing things as fast as I could. You see at that time we were told not to expect a call. It was so unlikely that a set of organs would come available for our tiny Ashley Kate. She was so ill it was assumed she would pass long before that call could ever be made. So I wasn't prepared. There were no suitcases that had been packed. There were no real preparations made for the trip. I smile remembering that because only the Father in Heaven knew that after a short 20 days on that list the call would actually come in. Only He would know the people who would be set in our path to minister to a frightened, naive, hope filled, set of parents in the halls of that hospital so far away. Only He knew the plan He had for our girl. Our tiny 11lb, 13 month old baby girl.

I am haunted by memories of that time. Horrible images. Hard days. The hardest of days. Days so long and so painful that there are no descriptions to be given. Those days seemed to last and last and last. It was one struggle after another. Yet, in the midst of that time there were blessings that buffered our pain. There were people who prayed. Those who reached out. Several whom we had no idea would play such a profound role in our lives just by ministering to us in what they may have thought was a small way. In times like those the smallest acts of kindness seem to make the longest lasting impact. In my experience anyway. I'm grateful for that lesson. One of many that I have learned in the last 5 years.

This week I've a lot to reflect on. I've a lot to be thankful for.

Had we not "pulled that trigger", as devastating as some of the repercussions have been, she would not be resting a room away from me at this moment.

Again, I ask myself, if I had known then what I know now would we have proceeded?

I think yes. I think back over all this 5 years post transplant has given us. Pain? Sure. Hard times? More than most could ever imagine. Tears? Buckets full. Cried over her hospital bed and in my own bed most nights since. Still though how could we have missed out on all the good days in between and since that call? How empty our lives would be without her in it. The joy we would have never felt. I can't even imagine.

This week I am in a better place then I was a year ago. A year ago I was so injured and so frightened by the loss of that precious organ I was blind to the fact that there was still another organ keeping her alive. I think because that liver was struggling so and she was so ill recovering from explant that I couldn't see past her frail body, her glowing skin, and the loss of her spirit as she lay in her bed. This year its different. I still can't celebrate in the way we had in years past. There will be no release of balloons, no cake, no pictures taken. Its different once you've lost one organ. Its not the way it was. Instead there is an even deeper appreciation that has come to replace the celebrations we once held. There is a remembrance of a great loss, a tiny life, and a mother's empty arms. Those things remain the same, but added to those things is a gratitude for life that runs so deep I have a hard time sharing it. I've watched her smile and laugh and giggle so hard this week that it freezes me. I stare so deeply into those amazing eyes that sparkle and I see life. Her spirit is in there. Her joy is full. Her experiences have not defined her. Her love for life is spilling out onto each of us who are so blessed to live inside these walls with her.

5 years ago a ten year old little boy tried to be the bravest and strongest big brother this world had ever seen. An eight year old little girl held a tiny baby sister on her hip and walked the long hallway of that hospital. Two frightened parents did their very best to hold their world, their family, and their baby girl together. I remember who we all were then and I see who we all are now. My teenagers are amazing. A lifetime of lessons learned in just 5 years. Kind, compassionate, understanding, unselfish, appreciative hearts. Not allowing the current struggles in their day to day lives to overshadow the enormous gift of family they have been given. Knowing how precious each day of life is. Realizing how blessed they are to be strong, healthy, talented, and able. Nothing taken for granted. How could I not be grateful for this journey. For this gift. For this life. Her life.

Again I'll say, 5 years... its seems like it was only yesterday and yet its been a lifetime too.

To the mommy who so unselfishly gave to us during what I can only imagine was the hardest time in her life...I am forever grateful. You are loved by a family of strangers. Never forgotten. Always appreciated. May God comfort your heart this week.

Simple, but OH SO SWEET

2011-09-27T11:10:00.002-05:00

Ashley Kate is still sleeping. She sleeps late most mornings these days. I'm ok with that. I like sitting here a room away, listening to her Christmas carols play(they play all year long in her room) and the sweet sounds of her breathing. I walk by the door to her room and peek at her several times each morning. If she hears me she adjusts herself, pulls her quilts up tightly over her long legs and squeezes her eyes tight. I love that! I really do.

Life is simple in her world. I'm ok with that too. In fact, I prefer it that way for her. I've tried it both ways, heavily scheduled with therapies, school work, and doctors appointments, and then this way with only rest, laughter, play. Like I said, I prefer it simple. She's happy.

Every once in a while I long for it to be different for her, but I always end those longings with thanksgiving that life is so sweet for her instead. She knows not of what she is "missing" out on and to live a life in that way is almost a longing in my own heart.

I asked Dave the other night if he would be ok with her never learning to read or write. He said he was. "Life isn't really about all of that. I've learned that the world tries to fit everybody into the same box and the truth is its not the way it has to be. Not everyone fits in that box, and thats ok." I smiled on the inside lying next to him in the dark that night. I love him. He is so wise. He brings to me a balance that I lack.

I guess I found myself struggling a little with all the "what ifs" and such after her last dentist appointment. Words sting. Even when they are innocent and accurate and nothing more than a description. I just have never defined Ash as anything other than beautiful. I hate when she is defined by the rest of the world. It hurts to hear things like, "special needs", or "a child like her", or "with her behavioral issues". Seriously, is that what you see when in her presence? I feel so sorry for anyone who doesn't see more than that. I see so much more when I stare at her. I spend her life thinking outside of those stupid boxes and doing my best to not have her labeled.

With all the struggle over this the past week or so I have changed my focus. I am now squarely focusing on the simplicity of who she is and appreciating her take on this world. Simple. Sweet. So happy. What else even matters?

She won't be having any teeth made to replace the lost permanent teeth. Her smile will be a constant reminder of a the accident and yet also a reminder of how blessed we are that all she suffers from is missing teeth. That is a lot for me to swallow. They can't make a flipper for her and aren't even willing to try because of all those lovely labels thrown out at last weeks appointments. An implant is not possible until her facial bones are fully grown and no one expects her to live into young adulthood. That is a lot for this mom to think on. Still it makes me smile to see her snuggled in her bed because no one expected her to live to this day either. I can't tell you the number of times we have been told she wasn't expected to make it. A year ago they had me believing it too.

But today...she's still here. And today...life is simple. And tomorrow...I expect to be just as sweet in her world as it is in this moment.

In our home...

2011-09-23T11:53:00.009-05:00

A plaque hangs on a wall to remind us and all who come to fellowship who this family is. I love the gentle reminder but bold conviction it brings to me daily as I glance at the words written there. Last night as I watched the children play together a smile crept across my face and etched itself upon my heart. Truly, we are a family. One that is blessed.

We extend grace. We welcome strangers. We listen. We share. We laugh. We cry. We make mistakes. We show mercy. We forgive. We pray. We give thanks. We CELEBRATE life. We believe in love. We are a family.

We enjoy.

We hug.

We giggle.

We play

We rest.

I can't imagine living life any other way. I am grateful for this day.

Memories made the evening of September 22, 2011

Other News

2011-09-20T14:25:00.002-05:00

I'm super happy to report that Ashley looks really good this morning. Really good. Very hard to believe its been just a week or so since her accident. Her face looks almost normal today. Seriously, she looks good. The left side is still a little swollen so its bigger than the right, but compared to just days ago she looks amazing. I didn't find any new bleeding this morning. Much of the dried blood has finally come loose and so her mouth is looking much better as well. Dave peeked inside last night and said the color of her gums are almost normal again. I was even able to see a part of her front tooth this morning. It had been so swollen around that tooth we couldn't even find it! She has some light bruising on her nose still, and around her top lip. Her left eyelid is still very dark, but improving. I don't think the dentist or his staff will even recognize her Thursday. She looks that much better than last week. We aren't able to get inside of her mouth to clean it up or even brush her teeth yet, but I'm hoping we are only a couple of days away from that. I think she will feel much better once we can at least clean her teeth off. They wouldn't allow us to even rinse her mouth with anything other than water because of the risk of infection. They also said it would sting and cause more pain for her. Needless to say her breath is not pleasant:)

So in other news...

Allie will be cheering at the football games tonight for the first time ever! She's very excited and I hope she has an amazing time. She is unable to tumble or do any jumps because of her knee injury, but she will be down on the field participating. Thursday will be her first night back at soccer. I'm a little nervous for her since she has not run full speed or kicked a ball since her injury, but she has to get back out there at some point. She has a double header in Arlington Saturday and she is very hopeful that she will be playing. She is doing really well. Keeping up with her therapy every night before bed. Mirco current. Taping and bracing every day. She's back playing volleyball and feeling minimal discomfort afterward. Overall, she's getting her life back to normal. I'm so grateful for this sweet girl in our life. She is so fun. That pretty much sums up our Allie. FUN. Always making us laugh.

Blake is busy playing baseball. Nothing surprising there. Sunday he had a great showing. He was 8 for 10 at the plate with one walk and a sacrifice fly out to center that scored. He had a two run homer over the fence, 4 doubles and the rest were hard line drives that singled. He's working very hard every day after school doing lots of tee work, and playing with a group of his friends for the Dallas Patriots on Sunday afternoons. He will be turning 16 in just under two weeks and very much looking forward to that. He remains a joy to parent. Honestly, over the last 16 years I can't think of a time where he hasn't been a joy to us. Really we have been blessed with such an amazing young man.

Dave and I are just being us. We love parenting. Love our family. Love our practice. Love our patients. Life is filled with bumps and bruises along the journey, but at the end of the day I wouldn't trade our life for anyone elses'. Its the bumps and bruises that have made us appreciate all the time we are being given. Hope your all well. Enjoying all that you've been blessed with.

Guilt

2011-09-19T13:44:00.003-05:00

Wow...its such an ugly thing. Keeping me awake every single night since her accident. There is no escaping it. I wish, I wish, I wish I would have NEVER taken her up to her room that night. What was I thinking! As Ash's mom I've spent a full 6 years doing everything humanly possible to keep her safe and to spare her as much pain as possible. Obviously I failed at that last week.

Overall, Ash is doing amazing. She is so incredibly strong. So strong. Her face changes daily. Swelling, shifting, bruising, shape,etc. has been rapidly changing. This morning she looks pretty good.

We saw two dentists last week. The first met us at the car not asking us to take Ash out and looked to the best of his ability inside of her mouth. His words "This is bad. I can't do anything with this. Call this guy and see if he can help." An honest assessment, but not really what we were hoping to hear. The second looked at her and said, "I can't really do anything right now. The trauma is to new and she needs to be on antibiotics for 7-10 days before I can even look inside of there." We knew some kind of assessment had to be done. She had loose and dangling teeth inside of a torn, cut, and badly damaged mouth. We encouraged him to at least see if any of the teeth were ready to come out because although we knew the pain would be great we did not want her choking on them in her sleep. With some extra hep holding her down he was able to get inside and pull the loose teeth. Then we left and started her on IV antibiotics with a return appointment scheduled for this Thursday.

Neither dentist is exactly sure what the course will be from here. Possible surgical repair, although we all hope not. Possible loss of another permanent front tooth. They said it could be up to 6 months before we know what teeth are going to die and what are going to survive. They are consulting with some colleagues to develop a plan to implant teeth in the places where permanent ones have been lost. Maybe root canals, maybe a few other issues. They just can't say yet.

Her mouth does look better each day. It is still actively bleeding and we are pretty sure she needed to be stitched up that night in the ER, but they were pretty much afraid of her. No one wanted to do much of anything with her. I understand why they were all hesitant, but she's still bleeding 5 days after the accident. Really scary stuff.

She is happy. Like always. Ash has a spirit that can't be quenched. She loves life. Even on the harder days.

I hate her chair. HATE it. I thought I hated her in it before, I'm terrified of using it now. She is fiercely independent. Loves the freedom it has afforded her, but it scares me. I am haunted by the sounds of her fall, the screams that followed, the images of the blood and teeth left on the floor, the sight of her trapped, face down underneath the chair. I am beyond grateful and amazed that she was spared any fractures of her face. Totally the hand of God on her once again. I pray every night that God would help me forget the sounds. I can't sleep because I hear it in my head again and again and it breaks my heart that she endured such a fall. I won't put her back in the chair. Not when I'm here. Dave and my mom insist on allowing her to use it. It makes her so happy. I just can't have her in it when I'm in the house. She is much safer on the floor than in the chair.

Today we started looking for contractors to give us an idea of the costs of raising the floors in our family room. If I'm ever going to have her back in that chair it has to be one level in our home. I never want to put her at risk ever again.

Its been a nightmare of a week. Total nightmare, but Ashley Kate handled it with her fierce love for her life and just kept on going and going and going. Thursday won't be fun for any of us, but it is necessary and I'm hoping for it to give us some more direction.

Trauma

2011-09-15T07:11:00.003-05:00

Last night, right before bedtime, Ashley was involved in an accident in our home. This morning we are asking for your prayers. I imagine she has a long day, possibly days ahead of her as physicians, dentists, and probable surgeons work it all out.

Ashley went off a step in our home while secured in her wheelchair. She was strapped in and fell forward onto the hardwood floors. With no ability to catch herself her knees and her face caught the full brunt of her fall. We spent several hours in the ER and all that was accomplished was determining through x-ray and CT scan that she suffered no fractures to her head or face. We are very thankful for that. Other than that, there was nothing they could do for her or offer to us. This morning we will start the process of trying to figure out where to go from here.

Ashley has multiple lacerations inside of her mouth. She suffered a large contusion to her gums. She knocked out one of her permanent top teeth instantly and will more than likely lose the second as well. The portion of gum that holds those two teeth is badly damaged. It has been cut, is out of place, and still holds what we are suspecting but really unable to see well is the other permanent front tooth.

This morning we ask for prayer for:

Wisdom.

Strength. For Ashley first and foremost. For my big kids who both cried themselves to sleep as they listened to the sounds of her screams. For us.

Infection. She is at a very high risk of developing major infections resulting from the cuts and damage inside of her mouth. Bacteria lives and dwells in all of our mouths.

Pain control. I do not know how they will assess the inside of her mouth. It will be very painful for our sweet girl.

We were unable to adequately clean her up. She is a mess! We are facing a very long day followed by what was a very short night of rest. She is bruised, bloodied, and exhausted.

After the initial two hours our Ashley, in true style, managed to play and laugh. She remains the absolute toughest person I have ever known. Truly our hero.

My kids have had a very long night. Very frightening. Very disturbing. There was a tremendous amount of blood and screaming. My heart is broken for all three of them. Mostly for my Ashley though who does not deserve more pain in her life. None of them do. Especially pain that we should have avoided. I'm truly sick over this accident.

If I've learned anything

2011-09-13T08:16:00.005-05:00

Over the last 6 years if I've learned anything, anything at all its this...life can change in a moment. There are no warnings, there can be no time to prepare, there is not a rewind button. Its with this "new" knowledge that I push on with. Living each day, absorbing the most precious moments, taking nothing for granted, and constantly being aware that in the most mundane of minutes inside this home can be found the greatest of memories. I wouldn't trade this awareness in my life for much of anything.

I sit in our home each night once we've all gathered back here after a day of work, school, practice, and games and this overwhelming sense of peace covers me. My heart feels right with the world and I breathe a sigh of contentment in my surroundings. So thankful to have normal. So thankful to be surrounded by these people. So thankful to be in this place with them.

Baseball...

I allow the pressure of homework, deadlines, injuries, medical issues, transplant, financials, and all the rest to pale in comparison to the moments in which I look around and see a handsome, healthy soon to be 16 year old young man sitting at my table, an amazingly beautiful and happy 13 year old with a bum knee glowing with a smile, and a rambunctious, chair driving 6 year old on a mission speeding across our family room. Life in this moment is good. It is precious. Priceless. Nothing outside of this home and the protection that this family unit provides me can enter in those moments to steal the peace I feel. I become keenly aware that I have been handed an undeserved gift in this life. It does not go unnoticed that all that I see and love and cherish are but gifts from a loving Father who despite knowing me STILL loves me.

Best Friends...

I'm not saying life is perfect. Obviously it is not. There is much stress, and pain, and hauntings of an uncertain future that lie under the surface, but its the knowledge I possess of what it feels like to be without all I am surrounded by in this moment that keeps me squarely focused on the good, and the lovely, and the most precious.

and rest...
Just a few of the gifts we are enjoying.

Each day I wake here in our home I smile knowing Ash and I stayed for another day. I face the new day with an excitement in my heart and a longing for another to come to pass. I embrace the moments and I eagerly wait for this evening when once again we will all be gathered together to finish up the gift we were handed today.

If I've learned anything over the course of her life its this...nothing is guaranteed and the moments we have can never be recovered once they are spent. Live... as if there will never be another. Pause...allow the beauty of those who surround you to soak into your soul. Breathe...a prayer of gratitude for all you are given. Pray...for those who are lost and hurting and missing what gifts they have yet to open blinded by circumstance.

Out of Focus

2011-09-08T20:06:00.004-05:00

For some reason all my pics from this evening are a little out of focus.

It really doesn't matter though because by the look on her face you can tell that her joy came through loud and clear. Thats what I wanted to capture anyway.

Dave and I sat back on the steps and watched these two "race" down the street. Ash is truly one of us...if it involves competition on any level then she's in! She was thrilled to be racing Blake and just like a big brother should he allowed her to win. Each and every race. I love that! Love the time he spends with her. Love the way he loves her. Love the way her face lights up when he's around.

This time at home has healed a lot of hurts in the hearts of my big kids. Last summer was very, very hard on them as we faced such uncertain times in her life. They absolutely love spending time with Ash and we don't talk much about the future. Concentrating on our todays and allowing the tomorrows to come when they come.

I'm so grateful for today. For who she is now. For all we have been given. For every single breath, every single moment, and every single memory. Focusing on Ashley's happiness and her life today not on the hurts that tomorrow may hold.

To the brim

2011-09-07T15:14:00.003-05:00

I'm sitting here watching my 6 year old Ashley Kate and the smile on her face, twinkle in her eye, and joy in her laughter has totally filled me to the brim. I can't even describe how much I love this silly little girl and who she has become. She is joy. True and pure and unspeakable JOY. I love her, I love her, I LOVE her.

May God allow her to be in our home FOREVER and EVER. May He allow us to never miss a moment of her life and may He grant us a thousand more tomorrows. She has truly taught me how to LIVE fully and contently. Life doesn't get any sweeter than spending an afternoon with this smiley, happy, joy filled little girl.

I'm grateful for this moment, for this day, for this time.

"Kneed to know"

2011-09-07T08:36:00.002-05:00

Allie had her MRI last night. We are very, very grateful for the result.

NO tears, NO surgery!

Now she just has to heal from a nasty dislocation that bruised the bone and created a lot of extra fluid and swelling inside the knee.

We are feeling very upbeat, although she wants to be walking, and playing volleyball today! That unfortunately, can not happen, but it will happen soon.

She is unable to stand weight baring on the knee just yet. It is still pretty swollen and much to her disdain she is still needing the assistance of crutches to get around. She thinks she should be ready to go for tomorrow's game, but when you can't walk on a knee you simply can't play in a volleyball game. I think more than anything she wants to get rid of the crutches so she can try and convince everyone that she is ready to play. Its not gonna work.

I want her to play more than anyone, but this injury was a bad one. It still looks bad and she still winces with any movements. That tells us she's not ready.

Volleyball teams will be announced today at practice and she heard yesterday that she was going to be replaced. That was heartbreaking and when I went to check on her before lunch she stood in the hallways and cried. I cried on my way out the door for her. She worked so hard for that position and now she's lost it because of a stupid injury. UGH! As a former coach I know that's just the way it has to be, but it doesn't make it any easier to explain or accept.

My hope is that a week from now the world of junior high volleyball, cheerleading and club soccer will look completely different for us than it does this week.

Come on rehab, work quickly! She is determined to be playing in Saturday's tournament. I don't have the heart to squash that hope just yet. If believing she can play on Saturday keeps her from crying today I'm just going to keep my mouth shut and smile.

Heart Ache

2011-09-06T08:47:00.002-05:00

My heart is so heavy for Allie this morning. It just aches!

She is supposed to cheer tonight, and a day that should be filled with such excitement is filled with disappointment. It makes my heart hurt for her. If things don't turn around then we are going to have a week filled with disappointing days. I'm so sad.

She has an MRI scheduled this evening, but that doesn't make this afternoon any easier on her. She has a support brace on this morning giving support to the ligaments that hold her patella in place and is walking with the assistance of crutches. She went to school, determined to be there in case volleyball teams are announced and to be a part of the cheer activities.

I want to say its looking better, but its really not. The shape is all wrong and could just be distorted from the swelling. It looks like the patella is sagging, hanging lower than it should and it is sliding back and forth which is what sent her to the ground on Sunday. Overall though I think the pain has reduced? At least she's not crying from the pain anymore so I'm taking that as a good sign.

It's so hard to find the right balance when trying to talk to her. She could in fact heal quickly enough to play this weekend with a brace, but I don't know that its likely. She may in fact be out all season. She of course plans to possibly miss out on Thursday's game, but for sure be playing by Saturday's tournament. I hope she's right. I really do.

I hope to know more tonight.

This past weekend...

2011-09-05T09:13:00.006-05:00

This is the knee, the one I'll be sharing about. It was a good knee!

didn't turn out the way we had hoped. Let me start by saying this post is about our Allison and not Ashley. Don't worry...Ash is doing well.

This weekend was filled to the brim with disappointment and hurt and frustration. Watching your kids hurt has to be the most painful feeling in the world.

Allie blew out her knee yesterday. I'm not sure if that means anything to anyone else...but to a kid like Allie its a devastating blow. Simply devastating.

Notice the hot pink cleats? Its so Allie to wear something like that!

She only had the opportunity to play two games Saturday and then during warm ups of yesterdays first game we saw a huddle of players and two men running across the field. We had no idea it was Allie. Then the one of the players came running across the field yelling at one of their dads who is a physician to come over. As we tried to figure out what was going on we recognized the hot pink cleats. At that point we were really calm. Dave walked across the field knowing that Allie is a tough kid. She's usually able to take a hit and keep on going. She can play through some really hard injuries...but...this one is different. It really is. I think I realized it as I watched two men having to pick her up off the ground and carry her. She couldn't even get up on her own.

Allie spent the next two games on the bench sporting a brace. We did everything...she did everything possible in hopes of playing last night...but it wasn't possible. Her knee is in bad shape. We have no idea how severe it is or how long she will be out, but this morning the swelling and the color and the shape of it doesn't look promising.

Lots of tears. Lots. Disappointed doesn't even begin to describe how we feel for her. She is so worried about everything she is supposed to be doing. Volleyball teams are being announced this week right before the season opener on Thursday. I don't imagine she will be in that game. She's afraid she won't be given her position on the team if she can't play. I think she's right. Their first tournament is this weekend. I honestly can't see her being ready to play by then either. She is locked into a year long contract with her soccer team. There is no getting out, rehabbing, and then picking up with another team. She's in a bad place. Not playing is absolutely the worst thing that could be happening in her world. She will more than likely lose her starting spot on that team as well. She's supposed to cheer this week too. Her first game of the year. So heart breaking. She is so, so sad. There is nothing I can do to make her feel better about any of this. This is her world. Its what she does. It has broken her heart.

I guess I'm sharing in hopes that you guys would pray for her this week. We are scheduling an MRI to get a look at the damage. It appears that a ligament has been torn. We are hoping that it has not. If it is torn shes out for a long time. If its just damaged or strained then there is hope of seeing her play again. She and I are really hoping for this to go away in just a few days, but its looking like it will not.

In all honesty my heart hurts so bad for her. She is the most active, most athletic, most amazing 13 year old I know. Sitting out yesterday was so hurtful. She desperately feels as though she let her team down knowing they needed her out on that field and yet she absolutely could not get out there.

Sometimes parenting is painful. This weekend proved it to me once again. When your kids hurt, you hurt.

Absorbing

2011-09-02T07:53:00.003-05:00

Wow...its so weird not coming to this place, spilling my heart, writing, sharing.

I'm sitting still. Being quiet. Going inside my own heart. Listening to my own thoughts. Absorbing.

I've spent a lot of time this last week watching. Taking mental notes. Documenting in my heart sweet moments in our home.

Little things.

Watching Ash follow Blake around from the moment he comes in the door. Seeing her little hands pat the seat next to her urging him to sit down. Smiling inside as she wraps her arms around Allies neck as tightly as she can each night. Listening to Blake say, "If I don't see you in the morning then I promise I'll see you when I get home from school." Staring at Dave lying next to her in her little bed. She on her Ipad and he working on his Iphone. Content to be close to each other.

I love how they love her. I love that she's six years old and they have six years of memories spent together. I love how she loves them. How she loves us.

Yesterday in the doctors office I listened to these words, " Her outsides don't match her insides. She's sick." "I'm all about quality and this is quality."

I hear those things and I smile and cry all at the same time. So proud to see her enjoy quality. So grateful she doesn't look as sick as her body is broken.

I'm beginning to think I won't ever take her back to transplant. I'm beginning to think that allowing her to live and live and live is the plan. Still I KNOW when faced with her demise I will take her. I will give her that chance. I will cling to the hope that she can in fact endure and recover and keep going. It is sooooo tempting to try and imagine her childhood continuing on and on although we all know it will not. She can't live with one central line for a lifetime. Its impossible to keep her going for years with this line. It really won't happen, but its so hard to imagine anything else. So hard to see her back in Omaha. So hard to separate her from Blake and Allie and Dave.

For now we are doing our very best to take it all one day at a time. Trying desperately not to get ahead of the situation. She bounced back again. Its been slow in coming, but she smiles again and plays and laughs and moves. She requires a lot more rest. More sleep. Her liver is stable again. Her bone marrow kicking in and doing its job. Finally! But...along with those things it seems that she has more joy. The joy in her heart and the twinkle in her eyes seems to grow and grow and grow as time goes by.

I think Dave and I are doing a good job of not panicking. We look at what it is and we seek treatment for it. We are usually the calmest people involved in the situation. Any unfamiliar persons involved in her care seem to get a little frenzied, but we remain confident and calm. It is scary I suppose. Especially if your not used to seeing a 6 year old with only 11, ooo platelets on board, a WBC count below 1, and a drop in Hemoglobin to 7. Yeah, I get that its scary...but she's living and playing and growing and happy. So when you look at her presentation...and see the joy on her face...and hear the giggles escape her soul...its easy to just agree that "her outsides don't match her insides" and keep going.

I think a lot. Especially at night when the house goes quiet. I wonder what is to come and how it will all unfold. I wish I didn't. I wish I could lay my head down on the pillow and sleep would come quickly, easily. It doesn't though. So instead I plan and dream and maybe even imagine what we could pull off in her lifetime. I insist on giving her life experiences. I sacrifice a lot of other things to make it happen. I refuse to just sit paralyzed by the fears that I have while our days at home waste away. I can't do that. Although it is a battle not to if I get completely honest.

For now its ok. Her line is clear once again. Well, its colonized with bacteria, but this week we have no fevers and no signs of infection. So...we are going to ride this patch for as long as we can and when the symptoms come again as we are promised they surely will then we will treat and hope and pray. We are free of IV meds for the first time in a while and enjoying the freedom that brings to us both.

Tonight we will load her up and allow her to travel. Her FAVORITE thing to do. I wish you could see the smile that comes across her face when she figures out we are going somewhere. That she's going somewhere. She will spend the weekend in the RV while Dave and I have the privilege of spending ours watching Allie do what she does on the soccer fields. Its a big weekend for her. Her first season performance with her new club team. I'm excited for her. She's going to be awesome! Blake will stay behind. Its a big weekend in his world too. His Allison performs tonight for her very first time on their high school drill team and that is HUGE. Something she's spent her life working towards. Its important to her for him to be there in the stands and so that makes it important to him as well. I LOVE that kid! He's so awesome. Life continues. Its busy in our world. Complex perhaps, but we are juggling it all to the best of our ability. Looking forward to each week as the calendar fills up and we spend time raising our teenagers and following their dreams.

I love this life. Really, really do. Its blessed. Priceless.

Quiet

2011-08-28T19:26:00.003-05:00

Its quiet on the blog. I don't really have a good explanation for this except to say I'm processing a lot of thoughts that I just don't know how to share. Not with the world, not with my family, not with anyone.

Life has amazingly become normal...for now. Its not really normal when you look between the lines, but its my normal and I'm ok with that at this time.

I'll talk when I can...I mean write when it comes...but for tonight...its still quiet over here while I work within my own heart trying to prepare for the next legs of this journey.

I received a copy of a report this past week that has me reeling. Really it has silenced me and trapped me inside my own thoughts, fears, wonders, worries, and questions. Ultimately it will lead me to a decision that I may or may not be able to live with depending on the outcome. So as I work my way through it...I'll remain quiet.

Strange isn't it?

By the way, Ash is making her way back from this last infection. She's happy. Smiley. Exhausted from the toll it has taken on her liver and the progression of its disease, but she's getting back to her old self. Just requiring a lot more rest than usual. Still on IV antibiotics round the clock... but the latest cultures came back clear. I'm grateful. More blood work tomorrow. Taking it one day, one infection, one hurdle at a time.

First Day

2011-08-23T10:38:00.002-05:00

How is it that I have these amazing, talented, beautiful, fun loving, compassionate, young people in front of me? Where did the time go? How did they get to be these people?

Two teenagers in our home is not what you think. There's surprisingly not a lot of drama, not a lot of attitude, not a lot of nonsense. Its actually a joy having them around. We enjoy them so very much.

So the first day of school comes with a lot of emotion...from me! I miss them when they aren't in the house, but I'm so EXCITED to see them grow into amazing young adults. Young adults who have their own circles of friends. Their own interests. Their own aspirations. Their own passions. Their own identities.

I'm looking forward to the hustle and bustle of fall. They both have so much going on that it makes our life busy but OH SO FUN! Volleyball, Cheering at Football games, Club Soccer, Club Baseball...so much to do to keep them out of trouble.

I find it hard to believe that I was even here this morning to fix breakfast, snap back to school photos, and see them out the door. What a blessing in my life. Ashley Kate didn't make a peep in all the chaos. She kept her eyes closed tight and her blankets pulled up. There are no back to school days for her...not yet anyway. We are considering starting up her home bound studies again. Such a hard decision for me. Wanting her to have it all and knowing she probably never will. I stay clear of most first graders this time of year because it hurts too bad to see their excitement knowing my 6 year old will not be joining them. Just one of the bitters in my sweets this week, but it will pass. It always does. There is far TOO much to be thankful for and that keeps me from dwelling on the sad for too long.

What will I be doing today? Are you sure you'd like to know? Christmas is coming to our house one room at time. I'm planning,planning,planning. Making my lists of what to put where and what needs to be picked up. I know it sounds crazy, but my life is exactly that...crazy. Never knowing where I'll be spending tomorrow makes today a priority and there is a lot to get done
to make sure the house is ready for the family if in fact we aren't here to celebrate with them. So on the outside our home will be decked for the fall and on the inside I will be decking the halls! Its really fun to be me...gotta stay busy, occupied, and exhausted or I have too much time to think on things that aren't near as happy.

Hope you and your kids have a great first day back. God bless.

Hope...

2011-08-22T22:32:00.012-05:00

Without hope...we'd have nothing.

Early Friday morning I quietly drew blood from Ashley's lines. Dave left for the hospital lab and I waited for him to return. He actually stood around and waited for the results to come in. Once they did we knew where we were headed. 51,000 platelets and we were gone!

I woke the older kids and simply said, "Throw your swimsuits in a back pack. We are taking Ash to the beach."

So this big brother...(so strong and handsome too:)

and this big sister...(who grows more beautiful by the day:)

had one of the best weekends of their lives...

making memories with this little sister(who we all adore).

As I sat on the beach and listened to the waves come in to the shore I smiled on the inside knowing that we were clinging to hope and not letting it go.

Our Ashley had made it to the beach. We had done it. With only two days left to spare of our summer we had actually taken her back to the beach one more time. The sounds of the waves put her to sleep each and every time I took her down to the water in just a matter of minutes. So while she slept, I took pictures. With my heart, with my mind, and with my camera.

NO regrets. NO wishing I would have just done it. NO wondering what if's. NO looking back over our shoulder. We CHOSE to LIVE and had an amazing, unforgettable time while doing it.

As we made the long drive home in the evening hours last night I listened to the giggles coming from the little passenger behind me and I said to Dave, "For Ash its not about the destination. Its all about the journey. She really doesn't care where we are headed...the ocean...the ball field...the doctor's office....she enjoys the journey. Its the getting there that puts a smile on her face."

What a journey its been and continues to be. I'm not even sure where we are headed, but I know that wherever we end up our family will have enjoyed the time we spent together getting there. Somehow I think that's more important than where we are actually going.

There are moments in this life we live that I wouldn't trade for anything...we had a few of those this weekend.

After a very rough last week we all needed to spend a few days hanging out together and we feel BLESSED after doing so.

Beginnings are scary. Endings are sad. Its whats in the middle that counts.
So when you find yourself at the beginning, just give HOPE a chance to float up.
And it will

Its more about her journey...

2011-08-21T23:00:00.001-05:00

than her destination.

More tomorrow. Goodnight and God bless.

Together

2011-08-19T23:26:00.002-05:00

Tonight I sit surrounded by my family.

We are together.

So many nights over the last 6 years have been spent apart.

As I look at the face of my youngest child I find it so hard to imagine life without her in it. Who were we before the birth of Ashley Kate? I don't even remember that family.

I'm grateful for this moment. For the day we were given. For this night spent together.

While I'm working furiously to make memories with my children, all 3 together, and to sear into our hearts the way it feels to be a family, I remember all too well the way it feels to be apart.

May this time never end, may our moments together last forever, and my I never grow tired of hearing the laughter, the noise, and even the chaos that surrounds me when we in fact are all together.

Although...

2011-08-18T10:40:00.004-05:00

Update 11:45 a.m. - Her vitals rock! Which seems impossible looking at her lab work. Blood pressure is perfect, temp great, heart rate in the low 90's, respirations the low 40's, and Oxygen sats 100%. Go figure? I was so afraid to get this set after being called by the lab. Defying the odds...again:) She woke up and asked to be taken into the family room. She is sitting up in the recliner(first time in days) and flipping through story books. Seriously, she looks better than she has in over a week. I just don't get it, but I'll take it.

I'm really, really tired(even after getting more hours of sleep last night than I have in all the other nights this week combined!), and I'm really, really having to force myself to get going and move today...

I'm really, really happy to be home today to do all the things I need to do. I'm just incredibly grateful to be in our home, going to both the kids schools today, running to the grocery store, compiling school supplies for my teenagers, and enjoying going out to dinner tonight with my husband.

Ashley is sleeping. Totally out. Her labs look...concerning. Really concerning in some areas. Her hemoglobin is low, hematocrit at a critical level, glucose very low despite having TPN running, bilirubin really high. In other areas things are not good, but improving. We have a few more platelets on board this morning, and her bun although really high is coming down. She's a mess on paper, and it is scary... but it is her life... it is the place we are in...and...she's home. Happy to be home. I'm sure we will be on the phone all day with different members of her medical teams trying to come up with solutions.

Thats all the news I have for now. I'm sure things will be changing throughout the day though. I've learned to be grateful for the normal and mundane, and hold on tight because it quickly spins out of control when lab sheets come back looking they did this morning.

Home and resting

2011-08-17T19:16:00.002-05:00

Ashley Kate is home. She is resting in her bedroom, in her sweet little bed, underneath her own covers. She is tired, she is weak, but she's home.

As I pulled into the driveway and then turned around to unbuckle her seat belts she took her tiny finger and pointed to the ID band on her ankle. Tap, tap, tap...she asked me to take it off. It was precious. She knew that now she was home and no longer had to wear it. Its the very first thing she wanted. As we came into the house her head rested on my shoulder and that tiny finger of hers pointed back to her bedroom. Sweet, sweet girl. She wanted to be in her own bed. She's been sleeping ever since.

Dave and I have been catching up on all thats happened the last 4 days and trying to develop a game plan for future days. Its not easy. Its so, so hard to know that your time is limited and that your every decision has so much riding on it. Nothing has been decided and our opinions and time lines continue to change from day to day. The only thing I think we both know for sure is that we want more in depth vascular studies before moving forward. We need answers because all we have are questions. More choices. Hope.

Our goal for our dauther's life is that it be a life lived of quality. Not a day wasted. Not a moment taken for granted. We want more than anything for her to live and live a long life, but we also know that its not our decision.

Your prayers for us over the upcoming days, weeks, and months as we try and squeeze all the best days of her life that we can possibly get are so appreciated. Ash is a miracle. I think she may have a few more in her.

We will take it one day at a time. Battle each infection as they come. Continue to seek peace as we make decisions for our family. And live.

News of the day

2011-08-17T10:14:00.003-05:00

Still no matches have been found for Ashley's transfusion. It is so unbelievable to me to think that it has gotten this hard. So unbelievable. The risk of giving Ashley an incompatible infusion is just too high. Even higher than the risk of having not enough platelets. If she were to bleed out spontaneously in an emergent situation is the only way anyone is willing to infuse an unmatched bag of platelets.

So...in light of this we, our team here, and our team in Omaha have all agreed to take Ash back home where she is most comfortable. Our ultimate goal is to save her line. It is the number one priority and so we are treating the infection aggressively. We have the ability and the equipment in our home to do exactly what is being done for her inpatient. We brought her over for a platelet infusion and it just hasn't worked out, but none of us could have predicted that.

Ashley's vitals signs are all very stable. She is no longer requiring oxygen support. We all believe she will improve in time. Its just taking a little longer and longer with each infection.

Her liver numbers are not good. This infection has hit her hard. Her bili is up from 1.6 to 20. She is glowing. Along with that high bili comes the side effects of severe itching, fatigue, and overall weakness. She sleeps a lot. We do not expect it to stay this way long term. Her history on Omegaven has proven that she does rebound once the intruding bacteria is killed off.

If we could find a match for her platelets we would infuse them. The problem we are having is that over the years Ashley's body has created several anti bodies that are actively fighting against the donor platelets. They have to test each donor's sample against her own sample and try to make a compatible match. Its so complicated. Many of you have donated and many more of you are willing. That act truly touches my heart. I don't know what to say. If you still want to donate blood it may match her and it may not but rest assured it will not go to waste. Someone will need it. Trust me when your child is in a position to need blood its the most beautiful gift you've ever received as you watch it drip into their body. It literally has saved Ash's life many, many times.

More time in our home with our little girl is our hope and prayer. More and more and more. Hopefully she will begin to perk up in the next few days as she realizes she's made it home once again.

Sweet Moments

2011-08-17T01:27:00.004-05:00

A warm embrace...A helping hand...Joy...Laughter...Fellowship and Friends
Life is sweet!

Ashley Kate was surrounded by these sweet friends(and so many more) the night we celebrated her 6th birthday. There are so many things I LOVE about these images. The sweet little girls...the smile on Annabel's face...the way Kylie wraps her arms so gently around Ash to give her a hug...Miracles 1,2,3...Allie helping Ashley up off the floor...and the way Ash loves my dear friend Rachel back.

We were blessed that night and we will never forget it. Thank you so much for your presence in our lives and your attendance at her celebration. We love you Cathy and Annabel, Joan and Kylie, Rachel and Allie! Your friendships are a treasure that I hold dear. Not only in my life, but in Ashley Kate's as well.

Julie, thank you for capturing these images. They blessed my heart:)

Information Overload

2011-08-16T19:14:00.003-05:00

As the days progress it just gets more and more confusing. My brain has been trying to process all the "new" information I am learning about Tcells and Bcells and antibodies and blood reactions and how that effects possible organ donation etc, etc, etc. Basically what I have learned is enough to confuse me to the point that I get it but I still don't get it.

As of 5:30 we have a donor that is O+, CMV negative, and they are currently mixing his blood with Ashley's to test for possible anti bodies she may have already that would react to the transfusion causing it to be ineffective inside of her body. We will know if its a match in the morning. Thats as close as we have come and I'm grateful to the husband of a friend of a friend of mine for going out of his way today and donating platelets specifically for Ashley Kate. Several people have donated and they are being ruled out or in depending on the particular antibodies Ashley has in her blood.

My head is still spinning. It has been for a few days, and I'm exhausted. Physically and emotionally. Life is so, so precious when I can force myself to ignore the bigger picture and just concentrate on the moment by moment. Its when I'm staring at this head on that I fall apart. Literally I fall apart. Yesterday was a hard day. Not because Ash is dying this time, but because the likely hood of her death happening so much sooner than I want is very, very real. I can't stand that thought. Every conversation with every physician ultimately says so. Although I know they aren't God, I do know that He has equipped them along this journey with us to be voices of wisdom and experience. He can and does do miracles in Ashley's life, but do I expect Him to have a bowel spontaneously appear in her body and spare her this part of the journey? No, I don't think that is the way He works. He has a plan to fulfill His own purpose and I'm sure I'll not understand this side of Heaven.

My heart is broken for my daughter. For my husband. For my son. For my Allison. For myself. I am powerless to stop from happening what is happening. I asked or yelled or cried out to a friend yesterday "What made Him think I could do this? I can't do this. He was wrong!"

I am not strong. I am not brave. I am not equipped.

I am broken. I am hurt. I am disappointed. I can not handle the weight of the decisions that rest on my shoulders. I can not.

If only I could give her happy days and a carefree childhood and the very best life possible I would stop at nothing to do so.

So I sit and the tears fall over what has happened in her past, over what is happening to her now, and what is to happen in her future. How ridiculous is that! When I sit in this hospital room I feel as though the very joy she gives is stolen from me. I only see struggle and pain. In our home I see peace on her face and happiness in her eyes. Even when she's not feeling well.

Oh what joy she has to share with us! What a gift her tiny life is to us. I love her so very much.

I listened to Christopher Robyn say to Pooh, "You are braver than you feel, stronger than you seem, and smarter than you think," and then I cried. I really cried. I am not those things and even if I were it would not make this go away from my sweet Ashley. How I wish it would. She and I watched Pooh in the hundred acre wood about a thousand times yesterday and each time I heard those words I cried, and I prayed, and then I laughed. Sweet moments with Ash on her hospital bed. It seems as though she and I have spent a lifetime together in these silly old beds. I wouldn't change the sweetness of our time together for anything, but oh how I would change the circumstance if I could.

I just don't know

2011-08-16T09:47:00.004-05:00

Morning labs are back and we don't have much news to "write home about". Things are getting a little more out of whack every day. Originally when arranging by phone with her physician this admission we both agreed that we were NOT looking for anyone to "fix" Ashley Kate. We simply needed some platelets. A little fine tuning. That's all we were looking for. So...

I just don't know... I mean, her platelet level came up to 14 this morning. Not much to celebrate, but still an improvement. Is it enough to take her home with? Well, its not as much as she came here with so she still needs an infusion, but they don't have any. No one really knows when they will get a match and no one understands why her body destroyed the ones we gave her on Sunday, but it did and so giving her the other half of that pack may cause problems for her in the future. I've never seen this happen before. I've never heard of it happening before. Its just a mess. The blood bank is still working to get a match for her. We all had hoped and prayed that her body would just begin recovering and making her own. I guess it made about 25oo. Did I ever tell you how many she is supposed to have? I can't remember but it in the range of 140-450 thousand. So when I say she has 14 this morning it actually means she has 14,000. Its just easier to talk in numbers like 11, 13, 14, 50, etc. I wanted to clarify that she does have more than 11 or 14 platelets. It was 11,500 that went up to 14, 000 this morning. Most of you probably knew that already, but in case you aren't familiar with the medical jargon concerning platelet counts I wanted to clarify.

In other areas of her lab work the WBC is better which says to us "the infection is getting "better". Her bilirubin is up. WAY up. From 1.5 to 17.6. Normal range is under 1. This tells us how her liver is processing this infection and the antibiotics. Not good is what its saying to us. Although she is still swollen and 3rd spacing she is very dry intra-vascularly. Her BUN has climbed to 56. Her creatinine is up as well. This tells us how her kidneys are functioning. So...again we all say no one is here to "fix" Ash and "balance her budget" or her lab sheet so to speak. Its near impossible to do so when she has an infection. I don't like the way it looks or the way its making her feel, but it is the way it is. She has a nice glow this morning from her elevated bili. She's had no fever for over 36 hours now. No breakthrough tremors or rigors since starting the two new antibiotics. Her cultures are showing no growth at just over 24 hours. They won't be declared clean until 72, but 24 hours is progress. She has a horrible, horrible wet cough. Thick, clear secretions that are coming up from her chest, but her lungs remain clear and sound good. She aches. Her body basically hurts from being overloaded in the tissues and dry in the vessels. She doesn't like to be touched, or moved, or picked up. She is awake and alert and communicating her wants and needs.

We are sitting here administering IV antibiotics exactly as I do from our home. That is all that is going on. We aren't correcting fluid status or her liver numbers or anything I don't do for her at the house. We are waiting on platelets. So she spends her days lying in a hospital bed instead of her own. She is surrounded by pumps and alarms and people coming in and out at all hours of the day and night. She's not complaining, and neither am I. Seriously, they are the kindest, sweetest, most helpful hospital staff I have ever encountered. They are just SO nice to us. What I am saying is that its more comfortable to be sick in your own home, in your own room, in your own bed surrounded by family. It just is. I just don't know though...we still have not decided what is in her best interest. Her physician will be in the OR for a few more hours and we will talk and decide when he comes to round.

The best thing that could happen for us today is for them to find a match for her platelets and to get an infusion started. Then this very complicated part of our life will be not so complicated if that makes any sense at all.

If we go home we run the risk of any platelets that have been donated and end up matching her going back into the blood bank and having to start all over again. Thats not really appealing to us, but on the flip side as the antibiotics kick in and start to get the line infection under control then her body may create a whole new batch of its own platelets and an infusion could be avoided all together. There are really no easy solutions any more. If a platelet transfusion can get this complicated then I think I finally believe them when they say to us, "There are no easy choices, solutions, or answers for Ashley anymore. Its all hard from here on out. "

Praying for Platelets

2011-08-16T00:10:00.002-05:00

Tonight our prayers concentrate on platelets. We are asking that Ashley's body make some very much needed platelets tonight as she sleeps and heals. We still have not been able to receive the infusion we were admitted for. They don't have any platelets available at this time, but are working with the blood of donors who gave today trying to make a match that she won't create antibodies against.

We brought her in with a level of 15,000, it dropped to 13, 000 and the lab didn't believe what they were seeing. After her infusion of the "universal ones" last night her levels dropped again to about 11,500. Spontaneous bleeding can begin at a level of 10,000. She's dangerously close to that number. She could begin bleeding around her ostomy site, her g-tube site, her central line site, a nosebleed, etc. Just the removal of a piece of tape on her chest caused bleeding yesterday afternoon. Without platelets her skin is just that fragile.

Our hope is that her bone marrow will begin to produce and her body would generate a new batch of platelets tonight. If her numbers come up overnight then they would like to send us home with her to keep her safe from any other bugs or possible hospital acquired infections. She has not had any breakthrough tremors or fevers in almost 24 hours now so we are encouraged that this combination of meds might have it under control. After 5 days of frightening episodes it would be a blessing to not see her body ache and shake with the spread of the bacteria throughout her blood stream.

Everyones' best guess is that this infection caused her body to become so suppressed that she was unable to generate platelets and she depleted her supply. Her immune system is very suppressed and she's using all her energy to battle the bacteria and has not been able to make any new platelets.

I've seen bigger miracles happen in her life overnight, and I'm confident that her platelet count could indeed begin to rise on its own. I've seen God do bigger things than this many times when situations seemed hopeless. Home would be blessing for Ash right now, but only if she's in a safe "place". Tomorrow morning we will check levels and make a decision. Your prayers for platelets would be appreciated.

Look Who Woke Up

2011-08-15T16:35:00.002-05:00

About an hour ago Ashley Kate decided to open her eyes for the first time all day. After a little coercing she actually sat up in the bed. She is now playing Fruit Ninja.

After 3 doses of lasix she's still up about 6 lbs. Mostly in her face and neck! Thanks to SVC syndrome. Her hands, feet and legs are swollen as well, but like I said its mostly in her face. At least she has eyes today!

One of her doctors came in this afternoon and we had a long talk. My head is still spinning from it and even though most talks from our physicians these days are necessary it doesn't make them any easier to have. Our options are running out. We all know it, and it sure does hurt to have to face that reality.

We are trying to decide where Ash would be the safest while waiting on platelets to arrive. She is dangerously close to the level where spontaneous bleeding can occur and if it were to happen then it would be an emergent situation. Still though the likely hood of it actually occurring is not high. They are considering sending us home for 24-48 hours while they work on acquiring the right platelets that her body will actually use rather than attack and consume. The expected outcome from last nights infusion should have given her at the very minimum another 50,000 on board but instead she lost 15,000. That result made all involved think she has created an antibody to the infused platelets and her body actually destroyed them. The blood bank planned on taking all the platelets donated today and matching them to Ash's type and cross to see if any came in that she could accept and use rather than consume. If a match comes then they will arrive here sometime on Wednesday. Sitting in a hospital is dangerous in itself with all the exposure to her very suppressed immune system. So...we are trying to develop a plan. First though they want to get her fluid status a little better so she won't have as much trouble breathing as she did overnight. The hope is that with the two drugs they are using on this bacteria that she might actually begin to make some platelets in her own bone marrow. The best thing that could happen for us tonight is for her body to make some platelets. She is literally at the lowest level she's ever been and thats including her days of chemo treatments. Pretty scary stuff.

For me one of the hardest parts about this cycle of line infections we are stuck in is wanting to know where they are coming from. Is it something inside of her or is it something we are introducing to her when access the line. I find myself second guessing everything when in all actuality she just has a chronically infected line. Its not me. Its not Dave. Its not us. I'd like to take the blame for it because then perhaps we could correct it, but like they said to me today, "her line is colonized and the best we can do with it is try and give her quality days in between her sick days". This current bug could have come from something as simple as brushing her teeth, or it could have come from inside of her, or off her own skin. There is no telling. Its just there and now we have to fight it the best we can.

We admitted for a platelet infusion. We can't get the platelets as of yet so do we stay or do we take her home? There is no right or wrong answer. She has a very wet cough now and everyone wants to get her out as soon as possible to keep her as safe as possible. Its a very fine line we walk these days. Trying not to slip on either side of it but rather stay safely in the middle of it. Unfortunately our "feet" seem to be a little wider than the line.

Still Learning 6 years later

2011-08-15T09:24:00.003-05:00

I guess its true that you never stop learning. The amount of "medical" jargon and procedures that have made up the "sick" part of Ashley's life is enough that I could sit down and write a book about. Seriously, I never knew I could acquire this much information.( I have NO desire to go into nursing or the medical field. NONE. Even though it is often suggested by our physicians:) Its so much so that I tell Dave quite frequently that my brain is tapped out. Seriously, I can't retain new information( such as how to do something on the computer much to his dismay). Basically if I don't HAVE to know it in order to take care of Ash then it goes in one ear and out the other. Not intentionally, its just how it works. I think my brain is tired.

So...apparently there are two types of platelet transfusions. The type that is specific, given after your blood is type and crossed. Ash is o+. Then a type called autopherese?. The second can be given as a universal type donor and anyone can get them(I had no idea about this). Last night we did a type and cross as we usually do each time Ash receives blood or its components. I assumed we were giving her platelets that matched her blood type. Instead we gave her autopherese platelets in hopes that it would work because it takes 24hours to get the platelets type and crossed and receive them from the Louisiana Blood Bank. When the doctor found out how long it would take he decided we would try the "universal" donor type(since hers were so low). So this morning when I asked what her platelet count was I was shocked to hear that it had dropped even more. Then I began acquiring my new understanding of platelet transfusions. Hence...I'm still learning 6 years later.

To say I was a little confused and disappointed is accurate. This morning the lab told us they used the blood we drew for her type and cross for something else and so we did not order the correct platelets last night in hopes that the autopherese would do the trick. I just drew another type and cross and so the 24 hour wait for their arrival begins now adding at least one more day on to this admission.

In addition to the 2 hour platelet transfusion last night we gave a 4 hour albumin infusion. When we added all of that volume to Ashley's already third spaced, fluid overloaded body she began to have trouble keeping her oxygen saturations up. She's been on 40% oxygen support through a mask since about 2 this morning. She sounds very wet. You can hear the rattle of the water with each breath she takes:(

We also added another antibiotic into the fight against this bug.

When Dave left about 8 last night, Ash was looking better. She was alert, signing, being so so sweet, and cuddling with us while she played on her Ipad. I think we both felt she was turning this around. This morning I'm discouraged by the need for oxygen, the drop in her platelet count again, and her overall appearance.

We've had little to almost no sleep. Too much going on in here all night long. Between meds, blood draws, infusions, and vitals I was up and down about every half hour to hour until 5am. We did sleep from 5-7. I'm not really feeling up to getting ready for the day. I guess the reality of this world, the one we sometimes have to live in, has hit me hard today. I just want to step back over into our other world. The one we created for Ash at home.

Its a busy week for us at home. Its the last week before school starts and the older kids have a lot going on. Not sure how to pull it all off, but I'm sure it will all work out. They are old enough to pick up their schedules and find out where the rooms to their classes are on their own I suppose. I just really wanted to be there with them because thats what moms are supposed to do. If we make it home by the weekend then I should have time to get supplies once they pick up the lists from their teachers. I'm not feeling as hopeful as I was yesterday about being here for just a day or two. I sure hope I'm wrong.

I have full confidence that Ash will come through this infection. I believe its just like all the rest. She will perk up, the meds will kick in, and we will go home. As soon as we can get those platelets back up and pull this fluid off then we are going home. Please don't mistake my exhaustion for despair. Although I know in the world of central lines that infections are dangerous, this is just part of our everyday and I don't panic like I used to. This line has been chronically infected since its placement on December 28th. It is what it is. Its our life.

Where we sit

2011-08-14T20:32:00.003-05:00

I guess technically we sit in the PICU of Sutton Childrens in Shreveport, LA. We are waiting for the platelets to arrive. They've dropped to 13. The plan is to start infusing about midnight. Then we will give her some albumin and then some lasix. We are switching her antibiotic from Rocephin once every 24 hours to Fortaz every 8 hours. The bug shows its susceptible to both drugs, but we aren't getting great turn around results with the Rocephin after 4 days of treatment. No big plans on doing anything heroic. Just basic tank ups on the things her body is short of right now. I think we will be here a couple of days. Maybe get home Wednesday morning? Maybe?

The bigger picture suggests we need to clear this infection and get her listed ASAP, but when it comes right down to it...I'm having a really hard time with that. Its just so hard to give up Ashley Kate's quality of life right now. I know so many of you don't understand, and to be honest I don't always understand. Its just that I'm struggling with the knowledge I have of bowel transplant survival and recovery and all it entails. The odds are stacked against us in both scenarios. Either way we choose. Its going to be rough.

As a mom I'm haunted with the inability to spare her pain. I'm haunted with the idea of leaving behind two amazing young people with no one to take care of. I'm haunted by the absolute despair that surrounds a parent in a PICU situation when you are alone and frightened and exhausted. I'm haunted with images of my Ashley lying so still and so distant from me when intubated and fighting for her life. I'm haunted with memories of how hard it is to hold a marriage and a family together when separated by hundreds of miles for months and months on end under the most stressful of situations. Most of all I'm haunted by the thought of never bringing my Ashley back to her home. The truth is that I don't know if she will survive and the thought of that makes me shake inside.

If I could choose I would have chosen for this to never have happened to Ash. If I would have been given a choice...but I wasn't given a choice. The only choice I've ever been given was if I wanted to love her or not and that goes without saying.

So where do I sit when it comes to transplant? I sit in a very uncomfortable seat. There are no clear answers and no easy choices. If only you could see inside of our home every day and feel the joy and the peace that surrounds us when Ash is there. If you could have witnessed my big kids tending to her needs two days ago before I could make it down the hall to her. Blake on one side holding a towel for her as she vomited into it and Allie on the other side emptying out her bags to make room for it all to drain out instead of up. If you could have seen the absolute love and tenderness they showed her in those moments then you too would be having a very tough time taking her from them without the assurance of ever bringing her back to them. They LOVE her so well. If you could peek into our home in the evening hours right as Dave comes into the room and see the light in her eyes shine so bright at the sight of her dad. If you knew how good it feels to climb into my bed each night knowing that all three of those amazing children are safely resting under our roof. I love home more than any other place on this earth. I love it so very much not because its grand, or perfectly decorated, or shiny clean. No, I love it because its the one place that I feel complete and utter contentment in this world. No judgement, only forgiveness. No harsh words or condemnation, only encouragement and support. More laughter than tears. More good times than bad. More of everyone and everything that I love. We are at our very best when we are surrounded by each other. I love those people in my home more than anything this world could ever offer me. Keeping us a family is my priority. Its my job. Its what I do.

Transplant is in our future. Pain. Struggle. Fear. Separation. Financial hardships. They are all a part of what our future holds. I'm just not at the place that I'm ready to embrace it all again. Not yet. Please, not yet.

We were supposed to be at the beach this weekend. Just a quick trip to allow our sweet Ashley to feel the waves roll in over the tops of her tiny feet. A few more days of banking memories with our kids together. Its the one thing I had on my list to accomplish when bringing Ash home this past year that I had yet to do. Tomorrow I had planned to begin decorating our home for Christmas. Another distraction that I very much need and an assurance to me that it would be in place for Dave and the children even if Ash and I are called away. Something that I need to have done before I leave. This infection, this admission was not what we had in mind for Ash. She's been so strong and so happy and so good. Bouncing back time after time. Proving to the world that God is not finished with her yet. Instead I'm sitting here in the PICU being asked once again about DNR's and the like and to what extent we want to go if things take a turn for the worse. Not that its expected, but its becoming painfully obvious that we are at the place that the conversation has become necessary to all who care for our Ashley.

Your prayers for Ash are always appreciated. After 6 years of ups and downs I am so humbled by those of you who still care. Who still pray. Who still encourage. I guess selfishly I would ask that your prayers for my heart over the coming weeks would be added. I don't know how I'll ever say, "Its time, lets list again." I just don't know how to take from her all that she has and all that she knows. I don't know how I'll ever be ready.

The other night I shared with Dave that I LOVED Ashley Kate at 1 years old(when we first had her transplanted), but at 6 years old I more than LOVE my daughter and know that I can't do this world without her in it. It just seems so cruel. So unfair.

So thats where we sit tonight.

Identification

2011-08-14T15:19:00.002-05:00

Klebsiella Pneumonia is growing in Ash's central line. Both lumens. It is showing that it should be susceptable to the Rocephin, but we will be looking into other possibilities since there has been no change.

Her platelets tanked to 15 today and she is in need of a transfusion.

Our physician in Longview had a death in the family and is out of town. There is not another physician in our town willing to even look at Ashley Kate. Not even for just a blood transfusion. So...we are being directly admitted to the PICU at Sutton Childrens as soon as we can get there.

Ashley Kate remains the same. All vital signs are strong. The infection is causing trouble inside of her body though and she has to have more platelets on board. Something as simply as a dressing change could cause a bleed and she would have no ability to stop it.

We are all on the same page. Not planning on a long hospital stay. Mainly going over to infuse and monitor then get her back home as soon as possible. NO one is looking to "fix" Ash. We all know there are many, many parts of her body that are "broken", but looking for a fix is futile and will not do anything but stretch out into a long hospital stay. We are all working to get her into a safe place so that she can spend her days in our home.

More Labs

2011-08-14T12:11:00.002-05:00

Dave is at the hospital now with more lab work. Ash just doesn't seem to be responding to the antibiotics prescribed to her last Thursday. If it were the correct one we should be seeing some level of improvement by now and I just don't see any. She is huge. Miserable. Dry. Very thirsty. Feverish. Trembling. Etc. Etc. Etc. No change in her condition. None. I don't find that very encouraging.

We are giving fluid bolus', but if her albumin has tanked(which it usually does) then they wont stay in the vessels where she needs them. The fluid is just leaking into her tissues making her more dry and more swollen. I hate the whole cycle of infection. It seems as though you just have to chase and chase and chase the same issues until you get some kind of help from the antibiotic. I'm really hopeful that sensitivities will be in this morning or an ID or something new to help us fight this infection.

Being sick on the weekends pretty much sucks too. Whether your inpatient or out getting any kind of help is almost impossible. We never heard a word from the doctor on call yesterday about Ashley's labs and more importantly her low level of platelets. I'm not surprised. Irritated, but not surprised. I'm just hanging on till Monday battling this bug with the tools we've been given and hoping Ash can keep on fighting until someone shows up in the offices in the morning.

Vitals all remain strong. Thats the most important thing. Her organ systems are all functioning. If at anytime things change in this area then our plan will change too.

For now Ash is sitting up in her chair. She's not comfortable anywhere, but needed a break from lying on her back in the bed. She is tolerating the chair. We need her in a seated position to help the fluid drain down from her face and neck through those very occluded and scarred down veins.

Overall I wouldn't say that she's any worse and I wouldn't say that she's getting any better. Still sickly. Unfortunately for her she has to have a dressing change today and a shampoo. How I'm going to manage that at her current weight(she's close to 10lbs heavier with all the swelling) I have no idea, but it has to be done.

Sleepin

2011-08-13T20:51:00.001-05:00

Sweetly sleeping

Where did they go?

2011-08-13T15:44:00.002-05:00

Sweet Ash slept soundly for almost 20 hours straight. No matter what cares were done she continued to sleep through them. A few times she opened her eyes to see who it was touching her, but mostly she just slept. She's awake now. Has been for the last couple of hours. Not comfortable. Not happy. Just awake.

Her vitals are all strong. Dave and I have been checking them frequently. She is stable. She is peeing. Her lungs are clear. We had a CBC run a few minutes ago and a metabolic panel. I'm looking for clues. Signs that may tell me what this infection is doing to her body. We received a call back from the lab that told us her CBC was all good except for her platelets. Only 25 registered when spun out in the machine. If that is in fact a real number and not a mis calculation then she needs a transfusion. We are waiting to hear back from the physician on call. Our pediatrician is unavailable this weekend and so a doctor who has never seen and knows no history on Ash will be informed of her labs. The lab is going to call us with any alarming results on the metabolic panel as soon as they finish it.

Ashley is third spacing. Its just become the norm now with her line infections. Her body just can't handle them as well as it used to and she always morphs into a new shape thats totally not recognizable. Its scary to see, but we are becoming used to it.

We still have no sensitivities back or an ID on the bacteria that has invaded her body. Hopefully we will know more tomorrow.

I guess the biggest question looming currently is where did all her platelets go and why are they gone?

An attempt...

2011-08-12T22:15:00.003-05:00

At putting my heart, my hurts, my feelings into words tonight. Just an attempt because truly I struggle to find the right ones to use.

Dave and I stepped out tonight to try and escape reality even if it were only for two hours, in the dark, holding hands, while watching a movie. Sadly though even the dumbest of movies can bring me to tears and cause my world and its reality to crash down around me. So as I sat watching Planet of the Apes nonsense with my husband tonight two words, or actually two signs caused me to hurt so deeply and sob so hard on the drive home that I became physically ill. Home, please.

As I literally feel apart on the short drive home crying so hard that Dave could barely make out my words the weight of it all came bearing down on my heart. As we pulled into our driveway I said, "That was a stupid movie about monkeys. I don't want to see that again." To which my husband replied, "Well...I didn't quite draw the same parallels between it and our life that you did, but I'm wondering ... so which one was Dr. L?" And then I laughed. Really hard. If you aren't in our transplant world at UNMC then that makes no sense to you and thats ok because if you are in it then you know why I was laughing so hard. I'm pretty sure Dr. L doesn't read this blog so I'm safe in sharing that with you all. And no...none of them reminded me of Dr. L. It was just funny.

"Home, please." Thats all it took. Why? Because when my sweet Ashley looks at me with tears in her frightened eyes and signs "home, please" there is nothing I can do. Nothing. I won't have the ability to choose that for her. I won't be able to say, "Enough. We are going home. NO more." Once we go back then we are back there until they say we can go home and that is an unbearable thought. Not only can I not choose when to take my sweet Ash back to her home but I lose all ability to make choices for her. Period. As I cried I tried my best to explain to Dave. CT scan? Whenever they say. Blood draw? For whatever reason any body sees fit. Back into the OR? No say so. Flip on the lights? Just because with no thought to a sleeping baby girls comfort level. I know, I know, I know that its all being done in her best interest, but it doesn't change the fact that it is being done without explanation, without being part of the decision making team, without my consent. Its just being done. I can no longer protect Ashley Kate from any of it being done to her whenever someone deems it the time to be done. I am merely a bystander. I will be informed of it and that is all. I can only attempt to comfort her through the process, but protect her from any of it...I can't. At what point do I yell, "Stop because its not longer being done for her but to her?" Is there a point that it comes to that? I don't know the answer. I truly don't.

What I do know is that we are in an impossible place. IMPOSSIBLE. I do not want my daughter to experience another moment of discomfort in her life, and yet if I do not allow that to take place then she will die. HOW is any mother supposed to choose in this situation? HOW?

She has yet another line infection. They are coming every few weeks. She has bounced back and recovered again and again over this last year, but that can't go on forever. We know that. Dave says we are at a fork in the road. One direction leads to death. We don't know when it will come or in what exact form ,but it is certain death. There is a cliff at the end of that road. The other direction has a small glimmer of hope shining at the end. What is on the other side of each bump in that road is unknown to us and one of those bumps may very well end her life, but there is still that small glimmer shining at the end. The other road is just dark. No glimmer. Just a cliff. One that we will eventually watch her fall off of. So...what do we do? Do we travel the road with the cliff at the end of it and try to make the most of every single day until we reach it or do we travel the familiar road with all those painful bumps along it in hopes of making it to the end where the light of hope shines?

At the end of each day my goal is for Ash to live a happy life. If I only knew how many days I could have with her then I think the choice for me would be easier. Tonight it all seems so cruel. So unfair.

Ashley Kate lays sleeping in her own bed tonight. She is weak. Really, really weak. Her pulse is strong. Her temperature is down. Her oxygen sats are high. Yet, she lies so still, so exhausted, so worn out from battling this infection. We still do not have an ID on what is growing inside of her blood stream. We still do not have sensitivities. We are treating with Rocephin because all we know is that she is growing gram negative rods. It could be anything from E coli to psuedomonas to Klebsiella. We just don't know yet. All we know is that she is out of it tonight and its frightening to see her lie so still and so unresponsive. My heart breaks to not see her twinkly eyes and sweet smile. This afternoon she pulled me in close to her and hugged my neck as tightly as she could. Tonight she doesn't even open her eyes when I kiss her forehead and whisper to her how very much I love her.

My heart hurts. It hurts so bad. I don't wan't this time in our home with all of us together to ever end and yet I feel as though we are watching it come to an end so much sooner than we had hoped. Ashley and I will be back in Omaha one of these days and Dave, Blake and Allie will stay behind. The thought of that has tears rolling down my cheeks faster than I can wipe them away. Ash will hurt again. She will teeter between life and death again. She will have to endure the pain, the confusion, and the odds stacked against her once again. I hate that. I really HATE knowing that and being powerless to stop any of it.

So there is my attempt at putting it into words tonight and as I read it back I see that I failed. It doesn't even scratch the surface on all that swirls though my head and hurts my heart. Not even the surface.

Confirmed

2011-08-11T14:51:00.002-05:00

In less than 12 hours we have a positive culture from Ashley's line. Makes my heart sad.

Gram negative bacillus is all we know at this point.

She has been fever free and sleeping all day long. Very, very tired as her little body fights against the bug.

Its hard to see her beautiful little face and know that her body is so incredibly broken. When I check in on her she looks so peaceful and so sweet. Like she's napping. Deception. Its like a cruel joke. I see such perfection and such beauty when I look at her only to be followed by the realization that nothing about her body and her anatomy is perfect. Its all broken and that breaks my heart. She has a central line, her one and only hope at continuing on in this life, and its infected. Again. My heart is broken.

Holding on to our good days as we fight our way through the bad ones.

We are waiting on meds to be called in. She is home and will remain here unless things take a turn. Her vitals are all stable and she's holding her own. Just resting.

Too Good to Last:(

2011-08-11T11:00:00.002-05:00

Yesterday afternoon we were sitting in her physician's office in Shreveport. "She looks really good. No fevers? No issues? No signs of that line infection, huh?"

"Well, I guess we must have cleared it then. I'll see you guys in a month."

Seriously? A month between appointments is what we have been working toward for an entire year now.

A few hours later... lethargic, trembling, low grade fever, and nausea. I'm not joking. Through the night her fever spiked to 101.8 a must culture number in transplant patients. We took blood to the lab. I'm almost 100% positive its a line infection. I know Ash. I know her textbook symptoms. We are just waiting for growth to start to get some meds called in.

I guess it was just too good to last. She was well for her birthday though and that was a blessing. The heat was hard on her, and we allowed her to call the shots. She went in to cool off when she wanted to and made appearances outside when she wanted too. She's been a little off all week, and I thought she was just tired from all the activity. Maybe she was, and this infection just came up yesterday afternoon. Not sure, but either way its back into battle we go, and that makes my heart sad for Ash.

Ashley Kate's Birthday Carnival

2011-08-09T12:26:00.003-05:00

Ok...this is VERY long. You do not have to watch it. I know its tooooo long, but there are more than 15oo photographs to go through. I love it. Love it all, but I understand that after about the first 25 your going to get really, really bored. They aren't in any type of order. I just couldn't do it. Its taking so long to go through the pictures=)

Details? Such as what I did to create it, games, concessions, prizes, entertainment, etc, etc. I'll have to write an entirely different post. There is just so much to talk about.

Mainly I tried to capture and share with you the spirit of the day. Its was almost exactly what we had in mind. Our guests are truly some of the best people we know. They all came out of their love for our daughter and that brought us to tears. I wish you all could have been there with us.

At the end of it all I stood back and realized that she really is still with us. She is growing and thriving and living. All things that we were told could not happen. She did in fact turn 6 years old and although I have no idea what this next year will hold for her or our family I do know that we are LOVE her more than ever. On this day we celebrated Ash and her life. That was our focus. If you did attend I hope that you were blessed and that you did in fact have a great time. I know we did.

Sneak Peak...

2011-08-08T15:51:00.007-05:00

Ashley Kate and her birthday cake. Baked with love by my talented sister.

Ashley's Birthday Carnival was AMAZING. There are soooo many wonderful pictures that capture the spirit of the night. It truly was a celebration of her life and of those friends and family who have loved us and loved her for her lifetime.

Look at those feet. Only two guys I know with feet that size! John and Blake:)

These photos are just a peak into what is coming. Soon. I promise.

Our very own mid-way. Loved it!

The photographer's pictures are a thousand times better than mine and I'll have those ready tonight. I think=)

Allie, Jessie,and Brooke

We laughed and played and enjoyed the spirit of the carnival for hours.

Blake and his Allison at the Kissing Booth

I can't thank our friends enough for being here with us. Celebrating the life of our daughter with us and for carrying us in the good times as well as the bad.

Goofy Grandparents

We were silly. We were hot! I can't believe how hot it was out there. We were happy to have been given another year with our sweet Ashley.

Love this picture! Love these young men.

Stay tuned. I'm working on sharing all the details.

A HUGE thank you to some of the most amazing young people around for pitching in and volunteering to work the carnival for us. Friends and family alike. Each of you were a huge blessing to us.

Seriously...Excited

2011-08-06T00:47:00.002-05:00

To celebrate the life of this beautiful girl today!!!

Its finally here. Ashley Kate's 6th Birthday Carnival is today. Its going to SO MUCH FUN!

A good party is all about the details and I hope that I have not left one single detail unattended. Its been a joy to work on this project. An absolute joy. Its going to be a busy, busy day followed by the best birthday party I think I've ever planned.

We are so enjoying our 6 year old and Dave and I can't keep from saying to each other, "She's 6. Can you believe she is 6 years old!"

How could I have known?

2011-08-04T21:39:00.003-05:00

Six years ago this night I lay my head down on my pillow after kissing those tiny foreheads of Blake's and Allison's. I closed my eyes and I'm sure I whispered some sort of prayer. I usually did. But...how could I have known that just a few hours prior to that prayer being said one of my most heartfelt prayers had already been answered? How could I have known that a tiny, precious, miraculous baby girl lay in a NICU just a couple of miles away from my home waiting for me to come for her? How could I have known?

I woke up that next morning and went about my day doing those things that I usually did. I remember Dave came home for lunch and we had a normal, nothing special kind of meal, but if I had only known how our lives would be changed in just a few hours then I might have planned something special. How could I have known?

I loaded the car that afternoon with an ice chest and Blake's bat bag. I was hurrying to get Allie's hair fixed and get Blake in uniform. I had planned to leave for the Bomber's big pre- season tournament the moment Dave pulled in from the office. How could I have known that God had a different plan for my life that day? How could I have known?

The phone rang a little after 4pm and a sort of familiar voice was on the other end. "Do you have a moment to sit down?" I lied, "Sure, I do". How could I have known that very phone call would change our lives? How could I have known that our daughter had been born the night before? I think if I had known I would have lived my life a little differently that day. I think, but how could I have known she way lying all alone, so fragile, so new, so amazing? How could I have known?

That night things didn't go exactly as we had planned, but how could I have known that God was at work behind the scenes? I didn't get to peek through a nursery window at our daughter. I didn't get to see her face. I didn't get to meet her or hold her or kiss her. No, it would be three LONG weeks before any of that took place. In the tears that fell on my pillow that night how could I have known that God in all His wisdom was at work? Laying it out according to His plans to prosper her and give her a future? How could I have known? I didn't have His eyes and I didn't possess His knowledge. I only KNEW that she was mine. I only KNEW the pain of being denied her. I only KNEW that some how, some way this was the child Dave and I had waited for. Had longed for. Had prayed for. How could I have known that our path to her and her path to us would be laid out by the very hands of the God Who created her? How could I have known?

How could I have known that 6 years later I would be remembering some of the most exciting, most painful, most confusing nights of our lives? How could I have known that in those long nights that we waited and prayed and pleaded for her and for His will to be done that He would be growing us into who we HAD to be in order to be called her mommy and daddy? How could I have known? I couldn't see. I didn't understand. I didn't know.

How could I have known that the road ahead wouldn't just be filled with giggles and coos? How could I have known that she would spend the next 6 months of her life in a NICU bed hundreds of miles away from her nursery? How could I have known that I would travel those highways day after day after and sit night after sleepless night next to her tiny incubator just waiting to bring her home? How could I have known?

How could I have known the lengths I would go to for one of my children? How could I have known how deep a mother's love truly is? How could I have seen the AWESOMENESS of our God without those days spent in that NICU? HOW?

Tonight I listen to her giggles and tears fall. How could I have known how incredibly special it would be to celebrate her life? How could I have known? 6 years! Another year after being told it would never come? How could I have known that she would make it to this day? How could I have known that when I brought my frail, dying, fragile 5 year old baby home last August that she would defy the odds and that her life would once again announce to this world, "Not yet, He's not finished with me yet, not yet."

How could I have known that our Father would use the birth, the life, the story of a tiny baby girl to grow and mold and change the hearts of this family? How could I have known? I wanted, I needed, I prayed for a what I thought would be a beautiful, perfect baby, but how could I have known what He had in store for us was SO MUCH MORE than our hearts could have EVER conceived? How could I have known that her tiny, broken, not perfect body would be the instrument He used in our lives to bring us to our knees?

Ashley Kate, I knew I loved you before I ever met you, but how could I have known how amazing it would feel to be loved BY YOU? I couldn't. Only He knew. What I didn't know He did, and does, and always will. May my eyes not lose sight of that, may my heart not grow weary of it, may my life NEVER be the same because of it. Happy, happy birthday baby gherkin. You my sweet girl...how could I have ever known?

The HAPPIEST of Birthdays

2011-08-04T08:30:00.002-05:00

Good morning Ashley Kate,

Its here! Its really here, Ash! You did it. You made it to today and I am SO proud of you my sweet, sweet girl. You are 6 years old! How blessed are we!

Ashley Kate the light on your face, the twinkle in your eyes, the joy of you smile, and the precious sounds of your laughter do not reflect the pain of this past year, and I am SO grateful for this. Instead you radiate peace and happiness and contentment and a zest for living that I have rarely seen in any other. I know without a doubt that the Father has given you a very special heart. A heart that only sees good and only feels joy. You know no sadness. You refuse to let any struggle keep you down. You give and give and give back to this world and to our family despite the hard days you have. Ashley, I love you so much more than words could ever tell. Each day I give you a thousand kisses and I drink you in while I have you so close to me. You wrap your arms around my neck and squeeze so tight that I feel every ounce of love you have to give in that moment.

Every day with you there are a thousand things that bring me to my knees. Just to see you open your sleepy eyes each morning and greet me with a tiny smile is enough to make me thankful to our Father for my whole lifetime! That is just the beginning. Your hugs, your kisses, your smiles, your giggles, your ornery attitude, your stubborn will, your independent defiance of disability, your precious face, your yummy smell after a bath, your long hair, your presence in this home, your snuggles, your love of animal sounds, your new fondness for shoes, your silly interest in Myth Busters, your favorite spot, your everything brings me to a place of gratitude. An honest feeling of gratefulness that is so raw and so pure and found in the simplest of things. Ash, I love you for giving me that. Without you I know I would have never grown to this place in my own life. So many things I once took for granted and now see as gifts. Absolute gifts from a loving God.

What do I hope for you in this 6th year? A MILLION things! More than anything I hope for you to feel the love of all who know you. To feel loved Ashley Kate is the very best of things. To know you have a place to call home, a family to surround you, and a God to protect you are the most precious of gifts. Despite anything that comes your way Ash if you know in your heart these three things then I know you will overcome it all. I wish desperately that I could promise you there will not be anymore struggles, or scary days, or painful times. If only mommy could make that promise. Since I can't promise you that I will promise you this instead. I will be near you on those days, through those struggles, and in painful times. You will not endure them alone. Your mommy will go there with you, she will fight to protect you, and she will pray without ceasing for you until we make it back to happier places. We will do this together Ash. Never a day will you be asked to fight alone. Never.

Sweet Ashley Kate you are so loved. Did you know daddy loves you and mommy loves you and Blake loves you and Allie loves you and Jesus loves you? Did you know?

Happy Birthday baby gherkin. Today is a day of celebration. A day of joy. A day of happiness. It is the day the Lord had made and it is the day He gave to us a gift that we so desperately needed in our lives. Its you!

So Unbelievable!

2011-08-01T11:19:00.002-05:00

Here I am only days away from Ashley Kate's 6th birthday, and I find it SOOOOO unbelievable to be at this place. Seriously, we have been planning, constructing, painting, sewing, and organizing for so long that I'm almost giddy with excitement that she is in fact going to turn 6 years old.

A year ago I was pleading with an Almighty God, our Father, begging him to allow her to be 5. I so desperately wanted her to hang on till her 5th birthday. In those weary days I couldn't see a year down the road. All I could see was making it moment by moment. Its been such a hard year for our family, and yet it has been a year FILLED with precious moments, memories, and joy. Its hard to swallow the hurt, but as it goes down a sweet, sweet taste is left behind by all the good days we have in between the bad. I'm not sure if any of that makes sense, but its the best description of what life has been like in our home.

We still cry lots of tears if we allow ourselves to sit still for too long, so I just don't allow that to happen to any of us for very long. I keep us busy, busy, busy living. Family life is the most precious part of my life. Its what I thrive on. Keeps me going even in the tough times.

We are a mere 3 days away from our tiniest pickles 6th birthday and only 5 away from the most precious carnival party you have ever seen starring the most precious 6 year old I know. I'm SO excited and its so hard for me to believe.

The Best of Friends

2011-07-31T21:48:00.007-05:00

When your the best of friends
having S0 MUCH fun together
You're not even aware your such a funny pair
You're the best of friends

Life's a Happy game
You could clown around forever
Neither one of you sees your natural boundaries
Your the best of friends

Many, many nights I have wondered as I lay down my head on the pillow if Ash will ever experience the normal joys of childhood. Things like kindergarten, sleep overs, and best friends. I've cried a lot of tears over the losses in her life because I know how precious things like this can be, and I so desperately want for her to have them.

I wouldn't re-live the pain of a year ago in her life for anything(exactly one year ago today she was ex-planted and we were devastated), but one of the blessings that came out of such a painful time was one of the things I had longed her whole life for her to have. A true friend. Funny how God gives us some of our most precious gifts in the midst of some of the most hurtful circumstances. Always working it for our good.

Sweet Allie is 6 years old. She loves my Ashley. She is the funniest girl. I can't help but smile each and every time I listen to her talk. I love to hear about all the things she has to share with her mommy on the drives to and from our home. God blessed my Ashley in the midst of her pain. He gave to her Allie. Her best friend. The sight of those last two words on this screen brings tear to my eyes.

One of my favorite Allie quotes is, "I don't know what Ashley is saying but I can always figure out what she wants." She's working hard to learn Ashley's sign language so they can talk to each other:)

Allie is precious. She plays ball with Ashley Kate. She plays I-pad with Ashley Kate. She gets drinks of water for Ash when she's thirsty. She's not afraid of Ash. She loves her. She is concerned about other kids finding out that Ash has diapers on under her clothes. She doesn't want them to make fun of her. That conversation with her blessed my heart. Brought tears to my eyes just as each glance of them playing together in the other room does. I'm so thankful that Ash has a friend who loves her. SO thankful.

My dear Allie at 6 years old you won't be able to understand how very much you mean to me, but one day when your all grown up I know your mommy will share it with you. She will tell you what a wonderful friend you were to Ashley Kate. She will share with you stories about the memories you are busy making with Ash. I can't keep from crying each time I witness them taking place in Ashley's bedroom or in the playroom. Your are a gift from God straight to us and I am thankful for you. I love you sweet little girl. Love you so very much. You are an answer to my prayers.

The song from the Fox and the Hound is playing in my mind as I glance through the photos I took this week. It is a beautiful example of Ashley Kate and her new best friend. The differences don't seem to matter to either of them. I love that. I really do.

Burdens

2011-07-30T22:10:00.003-05:00

Living in a world where tiny girls get sick and their mommies are left wondering what to do, where to turn, and how to get them back home can be hard. Some day are harder than others. There are days full of smiles and lots of giggles and there are days full of booboos and lots of owies. Its hard to not carry the burden of our community on your heart. You meet, fall in love with, and follow the daily ups and downs of their stories and before you know it they have captivated a part of your heart.

My heart is heavy with the weight of the struggle. Our struggle, our dear friends struggle, and the struggle of transplant period. My thoughts are with my friends tonight. I wait for word of their status just as the rest of their readers do but yet my wait feels a little different than most that follow their stories. I've actually stood in the same places, slept in the same chairs, and boarded the same life flights with my own tiny girl and I know the weariness of the journey and the ache of a mommy's heart.

To my dear friends, as you stand by the hospital beds of your tiny girls last night, tonight and every night in the future please know that I am with you in thought, in prayer, and your most precious gifts are in my heart as well. I love you both dearly and I love your little girls so very much. I hope you can feel a tiny piece of your heavy, heavy burden lifted as those of us across the country lift you up to our Father.

Look Out World...

2011-07-27T22:04:00.004-05:00

Here I come! Look what came for Ashley Kate today...

A new set of wheels.

She's had a lot of fun today learning to maneuver her way around the house.

Forward...and...backward!

A mixed bag of emotion is what I'm carrying today. I've been reduced to tears by the mere sight of the chair...and...I've been moved to tears by the sight of her independence. For the first time in her life she has the ability to really go wherever she would like to go. Although my heart aches because of the way she has to get there, it still rejoices that she can in fact can get there.

She is absolutely amazing. In just a matter of hours she has learned how to go forward, backward, turn around, and get into trouble. Nothing in the house is safe if its in her reach. She's trying to open doors, take breakables off the bookshelves, and dump out cups belonging to whoever left it sitting out. Nothing is really safe if its in her path or her reach! I kind of love that(secretly I'm smiling).

I've watched Blake and Allie go from looks of "I'm not so sure about this" to looks of "I'm so PROUD of her". To be honest those looks can be found on mine and Dave's faces too. There is pain. The presence of the chair represents the death of a dream. At least there is grieving over that dream we had for her right now anyways. Maybe not forever though. She may learn to walk someday. At least I hope that she does.

Still this is what she needed for now. Its taken close to 6 years for our family to get to this place. We so desperately want the world to see Ash as normal, not disabled, not handicapped. I know its not reality, but this is an emotional journey that we are all on together. Just being honest. This chair gives her the ability to roam inside the house without running over anyone or anything and causing too much damage(her power chair gives her a little...too..much... power. Right now anyway).

Ash is proud. So proud! She can go fast! Faster than she ever has on her own. I can't imagine being Ash and never having the opportunity to go and do what she would like. I've often felt great sadness for her at being "placed" somewhere her whole life. I just wanted her to have a choice about where she wanted to play or where she wanted to go. This new chair is giving that choice to her. Within reason of course.

So, as with most things on this journey, I feel sad and I feel joy. I won't lie and say that it doesn't hurt because it does. Thankfully though it also brings us great joy to watch her explore her world a little bit more. Great joy to watch her live. So look out world...there's another set of wheels in town.

Snapped Back

2011-07-25T10:35:00.002-05:00

Friday afternoon I walked to the mailbox. Inside it I found two or three envelopes. As I walked up the walk back toward the front door one of those envelopes jumped out at me. The return address was the all too familiar Nebraska Medical Center envelope. I figured it was just a reminder of this or that or perhaps something from the billing department(there has been some confusion with a current patient and Ashley in that department and we are being billed for their pharmaceuticals. How does that even happen?). I didn't realize right away what the content of that envelope actually held so once I opened it up I was snapped back into our reality instantly.

Inside the envelope I found a document informing me that the hospital and the insurance company had reached an agreement and that the following had been approved. Intestine Cadaver. Pancreas Allograft. Liver Graft. Musculoskeletal Surgery.

What about those words made me hold by breath unintentionally? Why did they snap me back, take me by such surprise, and send a physical pain through me that went straight to my heart? How can words on a page do such things?

I think I can answer it today. Death. Of a child. A hole left in a family. Grief. Pain. Loss. It all must happen for it not to happen in our life. That is the reality that Dave and I live in. Even though I can distract our hearts for a while with plans of busy schedules, vacations, and birthday parties it all comes back to this reality. Ashley Kate will only survive once another child does not. In moments like this I am rendered speechless. I have no understanding why this world works the way that it does. I can't interpret God's plan. I don't get it. Any of it. NONE of it makes sense to me.

I hate that word. Cadaver. I hate what it has done to my heart over the last few days. I hate that I lie awake at night wondering who, when, where, how or if ever. I hate this place that we have been put in. I hate that my sweet Ashley will be thrown back into the middle of it all to battle her way out just to have the opportunity to live the life she loves. It all makes me so very sad. My heart is heavy today. So heavy that even carnival projects can't lift the weight of it all.

Still so much to finish:)

2011-07-21T10:00:00.002-05:00

I'm so glad today is Thursday. Since its Thursday that means its actually our Friday! I mean we still get Friday, but Dave is off on Fridays so Thursday night is the night we actually treat like our Friday. Confused yet? Basically what it boils down to is that Dave will stay up late working on projects with me instead of needing to get to bed because hes going in to the office the next day. Yippee!

When I look around the house I see so many wonderful things that have been completed for Ash's carnival. I'm so excited! When I look at my list I see so many wonderful things that have NOT been completed for Ash's carnival yet. I'm still so excited!

Tonight I hope to finish painting banners. Just little details left on those and then tomorrow we will get the gromets in the last 6 of them. I also hope to get the kissing booth and the photo booth constructed tomorrow. If all of those things are accomplished this weekend complete with painting then I know that we can make a final push the next Thursday and Friday and have everything done just the way I have envisioned it. It should be just enough time to finish it all.
I have one more large delivery that I'm waiting on and then its all here,except the food items. Those I will pick up the day before.

Every time I hear of someone who is planning to attend it puts a huge smile on my face. Ash is going to have one of her very best birthday parties ever. I wasn't sure I could top Candy Land which was my personal favorite, but I think I have:) Dave and Blake loved the Luau Party the most, but I know this one is even better. Last years was pretty amazing just because it was pulled off in such a difficult situation, but the pictures make me cry when I see just how fragile sweet Ash was. I'm holding out hope that she remains just as she is.

16 days away. It gives me goosebumps to think about it. I'm so blessed to have this opportunity to celebrate her life. Can you even believe she is almost 6 years old? She really is going to turn 6. Despite it all our tiny gherkin is going to be 6.

Hope to see you guys at our place on the 6th. Its going to be a celebration!

Moving On

2011-07-20T17:48:00.007-05:00

For the first time in an entire year Ashley Kate ate. And ate. And ate. It was the funniest thing she's done in a while and that is saying something cause she's always funny. I'm not sure why I decided she should get to eat again, but while I was at the store this week I picked up a few jars of her one time favorite foods. Then we went for it.

She was so happy. So happy! If I put the jar down she would grab my hands and make me pick it back up. She sat on her little perch and smiled and giggled and swallowed and was absolutely giddy about the whole process. She would lick her lips and say, "mmmm" and sign "more, more". If the jar would empty out she would sign "please more". I was cracking up. We were trying to be cautious since we had no idea how her little body would react to eating with no where for it to actually go, but she wouldn't allow us to be cautious. After about a jar and a half of food she was topped out and up it all came into a towel. Afterward she asked for a drink and then "more, more please". So...what was I supposed to do? I gave her more.

The entire time we had her tummy open to drainage and so technically she "ate" none of it. She got no nutrition or caloric intake from any of it but the process made her giddy. Absolutely giddy the entire time. It was precious!

I couldn't get over the "licking of her lips". It just tasted soooo good she couldn't miss a bit of it. I didn't even realize how much she missed the opportunity to eat. Its been over a year now since she became sick again and she lost so much more than her bowel. I forget sometimes just how much of the "normal" she had worked so hard to gain was actually taken from her.

Ashely has been totally fixed on wearing her shoes this week. She wants them on in the morning when she wakes and won't let me take them off even after putting her into bed. I tried to sneak them off of her about 11 last night and she woke up crying for her sandals. So... I put them back on and tucked them under her blankets. With her interest in shoe lately I have been putting her at her standing bar, forcing her stand up here and there and just encouraging her to get the feel of her weight on her feet again.

Today I asked her if she wanted to walk. She didn't protest and so I pulled out her walker. I stood her in it and still she didn't fuss. Together we took a few steps and still she was being a trooper. We just kept at it for a few minutes and then I noticed she wasn't even leaning on the back of the bar. She was actually standing on her little feet. This is the first time in a year that I have witnessed her stand on her own two feet. I had to get up and grab the camera and the whole time she stood there and waited for me to snap photos of her. It was so amazing!

So I decided to title this post "Moving on" because that is what I see Ashley Kate doing. She's moving on from the illness, the predictions, the struggle, and the whole insanity that has plagued her life over the last year. She's happy. She's growing. She's getting stronger. She's getting her life back and I'm witnessing her move further and further away from those dark days of last summer.

There are still struggles and there are still some very raw emotions. There are still unbelievable odds stacked against her survival. There are still days of waiting on an organ list ahead of us, and days of transplant and recovery and all its evils in her future. None of this has changed, but its an attitude of "I'm going to be 6 years old despite it all " that she has adapted and I'm moving on with her.

I spent a few moments peeking back at journal entries from this time last year and it brought such a remembrance of the pain and the despair. I couldn't linger there long. The heaviness of my own words pierced my heart and the tears came quickly. I had to walk away from it all. I had to. Going back is still just too hard and realizing that it is in our future paralyzes me with fear. I can't live that way.

Instead I look at these pictures and I smile and I see the determination to be happy in her face and I can't help but be just as happy. We set her next appointment while at her doctor in Shreveport this afternoon. The next one is in three weeks. At which time my girl will have already turned 6 years old. If that isn't evidence of moving on then I don't know what is. I'm smiling at that thought. 6. I asked God to let her be 5 on those hard days last summer and here she is turning 6. He's good to us. He really, really is.

Sweet Summertime!

2011-07-18T08:31:00.006-05:00

In Texas when the temperatures reach degrees of 100 or more how does Ash spend her days?

Swinging under her apple tree of course!

Right inside the comforts of the play room where the thermostat sits at a comfortable 70 degrees:)

No need to get sweaty and sticky. No need to fight off the mosquitoes. No need to worry about her overheating.

So yesterday Ashley Kate spent her evening signing "swiiiiiinnng, wheeeeeee" and I spent my evening soaking up the memory being made with my sweet little girl instead of soaking up the sun!

I even captured a photo that shows her new big girl tooth that we have affectionately named "Bubba". Each and every smile that exhibits this rather large tooth has us all laughing hysterically. It is simply awful! To make matters worse, Ashley loves to stick it out over her bottom lip and bite with it just to make her mom crazy! She won't keep the thing "under wraps" or at least under her lip. If the other one doesn't grow in soon I'm not sure what I'll do. Well, my close friends know what I'm threatening to do, but I'm giving the other tooth a little time to make its appearance before I have molds made:)

It was a good weekend. We got a lot accomplished for her birthday carnival. We watched Blake play a little baseball. We listened to Allie and her BFF laugh until they cried. We did lots of laundry and yard work. We swam a little and played on the swing a lot. Life is blessed. These days in our home are so very sweet and I'm constantly reminded why I love it so very much. Sweet Summertime days are simply some of my favorite:) Hope your weekends were blessed.

Being cute

2011-07-14T11:39:00.004-05:00

Last night I turned around and found Ash hiding underneath the table in our foyer. I watched her for a long time trying to figure out what she was up to.

When I asked her what she was doing she did this. Then she peeked around the corner of the leg to see if Allie was watching. For some reason she thought we couldn't see her underneath there. So cute!

I stared at her for a long time and just thought to myself how very cute she is. She is just so stinkin cute. I love this big girl so much! Yesterday I visited with some new moms in one of the waiting rooms who were holding the tiniest of baby boys. They shared with me that they were both born weighing about 2lbs each. I giggled to myself and then told them Ashley Kate was born weighing about the same. They were stunned. "She looks so good! She is SO big. I would have never guessed." There was no need to share the craziness of her life with complete strangers. It would serve no purpose. I just smiled and nodded because she does in fact look so good and she is SO big. Almost 6! Unbelievable to me when I think about all the "rest". God has shown mercy and given us an amazing 6 years with our girl and those 6 years are laced with wonderful memories.

Sometimes its fun to focus on her today and not worry about her tomorrow. I just catch myself watching her play and listening to her giggles and I make a point to take a mental snapshot of those moments. Last night I grabbed the camera to capture the moment on film as well. She was just being cute. So cute!

Hard Day

2011-07-13T17:00:00.002-05:00

Some days its overwhelming. It just is. I'm fighting back tears as I finally make it back home from a LONG day in Shreveport. When its over 100 degrees outside and you have to move your almost 6 year old daughter in and out of her car seat into her chair 8 times it not only leaves you breathless it causes the tears to fall. I just can't help it.

On the drive home I feel a tremendous amount of guilt for being so exhausted by the whole process because I realize that I would do this, this exact day, as exhausting as it has been, a THOUSAND times over if it means that Ashley Kate is still here. I would. So I'm having an internal battle between my emotions and my exhaustion and all I could do was cry although it doesn't change the fact that Ash can't walk and she can't get into the car or out of the car or do any of the things that the rest of us take for granted every single day.

Seriously I don't understand why a hospital parking lot will have 12 physician parking spaces all up front and ONLY 2 handicap spaces? How can that even be consider ok when designing the place? I finally parked illegally behind a fast food restaurant ACROSS the street and stood on the corner of Kings Hwy in Shreveport attempting to cross traffic with my medically fragile daughter in her wheel chair. It took 20 minutes to get across. By the time I made it into the building to her appointment with her new physicians the last thing I needed to be told as the sweat dripped off my face was that the referral was NEVER even sent. Please don't tell me that she can't be seen without it or I am going to sit in the middle of this waiting room floor and cry my eyes out because I am that exhausted. I am.

It was a hard day. Its hot outside. Lifting 50 pounds in and out and in and out in 100 degree weather does not make life easy, but like I said I'd do it a thousand times over. I really would even though it makes me cry. Days like today cause her disabilities to loom over me and weigh heavily on my spirit. I never dreamed she would be 6 and unable to walk. It never even crossed my mind and today it brought me to tears.