Ashley's Story

She will leave fingerprints all over your heart

5/29/2008

Just wanted to let you know...


... the outfit from Pickle Juice came and Ash loves it! So comfy and stretchy! She wore it to the ball field to watch Blake practice tonight. Thank you so much for thinking of her, and me too! The bracelet is beautiful and you really touched my heart. Just wanted to let you know.

Some one pointed out that I forgot to say how much Ash actually weighs when I shared how much she has grown. Lets just say that our tiny 2lb 12 oz baby pickle who struggled to absorb calories and nutrients with her old small intestine nows absorbs quite well with her transplanted one. Since returning home from Omaha in March she has grown 2 and 1/4 inches and gained 2.3lbs! Our pickles new weight is quickly approaching that of a mighty dill. 29.3 lbs!!! Ouch! says my right hip and lower back(her favorite place to sit). As Dave works on my back each week I am reminded that God knows what He's doing in all things. Only He would have known that 15 years down the road I would need weekly adjustments because our tiny, premature baby would weigh that much and refuse to stand on her own two feet. God is good!

Hope you all had a good day and are looking forward to a restful weekend. We are headed out early in the morning and I can't wait. Take care my friends. Trish

CHEEZ-IT

At lunch this afternoon Ashley Kate had 1 full cup of water, 3/4 of a serving of organic carrots, and 1 WHOLE CHEEZ-IT cracker which she held in her own hand and took all 9 bites of all by herself! She actually bit and chewed the cracker(which happens to be a whole 1" x 1" square) with her own teeth. She has never, ever used those teeth before in her life! I am SO excited! The blessings just get bigger and bigger! By the way, it wore her out and now she lay soundly sleeping in the middle of the floor, toys strewn about and Blue tucked close by.

And Dave answered Blake's summertime plans with this statement,"That boy is getting a job!" That my friends made me laugh out loud. Your only 12 once and I say if you can get away with it then go for it. Unfortunately for Blake(who happens to STILL be sleeping) his Dad doesn't agree. Wonder what he has in mind for our son?

I have just enough time to run and pack for the weekend while the pickle takes her nap. Have a blessed day. Trish

Love this!

After saying good bye to his sister, his aunts and his cousins Blake came into the house, scooped up Ashley Kate and announced to me his summertime plans:

Sleep. Play baseball. Sleep. Play baseball. Sleep. Sleep. Baseball. Baseball. Baseball. Baseball and then sleep.

Off to my room the two of them went. I just stepped into our bedroom to put up a pile of laundry and found my 12 year old and my 2 year snuggled under the covers sleeping soundly to an episode of Steve and Blue.

I'd share my photo of the two of them, but I'm afraid Blake wouldn't appreciate me too much for it so I'll refrain from posting it. Just wanted to let you know how very much I love summertime and my kids! Its gonna be great.

5/28/2008

My heart is...

...blessed...and...broken. Its one minute before midnight and only 8 short hours before the girls leave to go home. The family room floor is covered in luggage and everyone has retired to bed since they will be leaving by 8am(except me of course). The last few minutes of Mary Poppins is playing and the lights are being turned off. I'm not going to cry over the broken heart I feel coming on because God has absolutely blessed my socks off this week! What a dream come true! Just like the days before Ashley Kate's birth but better because she's with us.

We have had an amazing time. Shopping, camping, fishing, shopping, playing, swimming, shopping, cooking, planning(my nephew's wedding reception is next weekend), shopping, laughing, cuddling, and did I mention shopping? We love it. Not just the shopping(we usually walk out empty handed, but boy is it fun to do it together!), but all of it. We have officially welcomed the stroke of midnight each and every night around our dining room table as our rounds and rounds of sequence, kazink, and dominoes have continued into the wee morning hours. We have laughed until we cried, until our sides hurt, and until we spit diet coke across the room. Its been such a blessing to have the them here.

On several occasions today I have walked into a room and caught a glimpse of one of my sister's playing or rocking my sweet Ashley Kate. She has fallen in love with them and my heart has fought back the tears as I watched from a distance as she opened up her world to them. She has giggled, and snuggled and played with them so much more than any of us had expected. This has by far been the biggest blessing of the week.

This afternoon we spent the day at the pool and then took portraits of the girls(all but Ashley Kate. It was too hot to have her down at the pond). The photographs are beautiful! Our little girls aren't so little anymore. They are 10, 10, 8, and 8. Then of course there is our Ashley who is officially 2 years, 9months, and 24 days old. That is soooo close to 3! Boy is my smile widening as I type that! In a couple of months we will be hosting another (can you even believe that?) huge birthday celebration for our pickle. Anyway, we finished the day off with dinner at Blake's favorite restaurant and a round of dominoes.

Allison Brooke is taking the second week of summer vacation and going to Oklahoma with her aunts and cousins. We will be going to Colleyville(sp?) for a baseball tournament and then will join her there next Thursday to begin decorating for my oldest nephew's wedding reception(Congrats Jeff and Leah! We are so excited for you!). Blake told me this afternoon that he "has a good feeling about this weekend." He doesn't know why, but he's feeling pretty good about this upcoming tournament. Ashley Kate looks so good this week! She has been so happy and silly. Her lab work improved some and for that we are grateful. Her liver enzymes continue to be out of the normal ranges but have gotten much closer. Her BUN and sodium have improved a lot as well. We will run another set in the morning and are hoping for good results. She continues to grow and grow and grow and I almost fell out of the chair when they told me how much she weighed last week. NO WONDER my low back has been aching! This child has got to learn to walk! By the way, her new standing frame is being delivered tomorrow afternoon. You can just imagine how excited she's going to be! I'll take a few pictures and share them with you. It won't be pretty. I can promise you that.

Well, I guess I'll go lay down now. The house is sooo quiet. Just a little preview to how empty its going to seem tomorrow I'm sure. It's amazing how simply beautiful chaos can be. 2 twelve year old boys, 2 ten year old pre teen girls, 2 eight year old blonds, and a toddler is a house full. Add Hope to the mix and you pretty much have the most wonderful chaos you have ever heard! Have I ever mentioned that our house is really, really small? Yep, its crowded but cozy! I just love it. Goodnight guys. Thanks so much for continuing to spend time here with us. We haven't forgotten that you have chosen to be here and we love you for it. God bless and take care. Trish

5/26/2008

Her World

Its the sweetest place to be. I watch as she hides inside of it. As she builds the walls around to keep the rest of the world out. I don't know when she learned to run there, but I understand why she had to find a place. A place safe from all the sticks and pokes. Safe from all the hurts and heartaches. Safe from those who she feels are a threat. There are times when Ashley's world is a necessary place to hide.

Just the other day my sister told me, "I'm glad she lets you in. If she feels like she needs to hide inside of her world I'm just so glad she allows you inside there with her." My heart was blessed. She was truly thankful that my sweet Ashley lets me go inside of those walls. I've thought a lot about that statement. I've even spent a couple of nights crying over it. It was a beautiful observation, but one that in all honesty breaks my heart. She's so right. Ashley Kate has a built a world around herself to keep others out. The minute we open the clinic doors, walk into a hospital, or answer a knock at our door she runs there. Inside her world she trusts very few people. Her daddy is allowed there. Her brother and sister get to come inside. My mom and sometimes Dave's get an invitation. Our dads are off limits. I think they remind her of a couple of her doctor's. My dad got to hold at Christmas this last year and she eventually settled into his lap and allowed him to sing a couple of songs to her and read a story to her and my nieces. Dave's dad keeps trying to win her trust and I think he finally go to hold her for longer than 2 minutes last week(which was a record). My sisters have been here for three and half days and she's not crying when they speak to her. They haven't gotten to hold her, but she will play with them and allow them to touch her hands and feet. To see them with her brings me to tears every time. They love her so much and want so badly to cuddle her just as they do all of our children. She's just not there yet.

Ashley's world isn't full of trust. She's learned the exact opposite. Most children are so trusting and thats part of the innocence they are born with. Not my Ashley. Her innocence is gone and she knows that the world is full of pain and that most of the time a stranger is the one who hurts her. You must earn her trust and it isn't easy. Ms. Sue has been coming around to work with her for almost 3 years and every time the door is opened she looks to see if it is her. If it is she stops what she is doing and covers her eyes, shakes her head and cries the whole visit. She knows that when Ms. Sue comes we are going to push her to her limits and make her work to go even farther. She doesn't trust her. Even on the days when Sue comes for reasons other than therapy Ashley still cries. Any middle aged man that walks into our home sends her into a frenzy. There is no controlling it. She doesn't trust them. If you wear scrubs, you are the enemy. Untrustworthy in Ashley's world.

The trust that Ashley places in mine and David's hands is bitter and sweet. I've used those words many times in this journal. Knowing she trusts us over any other persons on this planet is so, so sweet. She hangs onto me tightly. She reaches out and grabs my hand to hold. She rubs my arm with her soft, tiny hands when I sit next to her. She snuggles into her daddy's chest and tries to hide from her doctors. She cuddles under a blankets with Blake and Allie. She knows we won't hurt her. She knows she is safe and loved and it is a beautiful thing. The bitterness comes in to play when she feels betrayed. When we open the door and allow the nurse to come in to draw labs. When I sit on the floor next to Sue and strap braces on her legs. When I push her stroller through the doors of the clinic. When I sit across from her in the jet and allow them to strap her down to the gurney and work on her the entire flight. When I stand and do nothing as they push her farther and farther down the hall from me and do nothing to stop them. Her eyes show the betrayal. She trusts me more than anyone and yet I'm the one who lets these things take place. Bitter and sweet.

As I type my tiny pickle rolls around next to me watching Blue and kicking the keys on the keyboard out of nothing but meanness. She grins an ornery grin as I push her feet of the keys and giggles. How GRATEFUL I am to be a part of her world. A part of the small circle she trusts. To have been given this role in her life. My heart is so full of gratitude for this little life she has been given.

Trust. Its a hard one. Many times along this path I have felt the bitterness and sweetness of that word. Inside my world I have felt the pain of mistrust. Each time she takes a turn for the worse I have to decide. Do I or don't I trust Him? I mean, I know I trust Him, but trusting on those really, really bad days isn't easy. After all He allows these things to happen to her and to us. He allows her little body to struggle for life. He allows the hurt and the pain and the fear to come. When I ask myself who I'm going to allow into my world do I open the door and let Him reside there with me? Do I allow Him to hold me, my hand, my heart? Will I snuggle close to His chest to hide like Ashley Kate does with her Father?


Ashley's world includes me and my world includes Jesus. Its the way it is. Even when I don't understand the things that are going on around me. Her eyes search for understanding and she fights with all that she is to get back to my arms. Some days I feel the exact same way.

5/23/2008

The girls

We've grown up together. They were present the day I was born. We played together as children and still do even now as adults. As I sit and type at this late hour they sit and continue to play around our dining room table. The house is full of laughter and even though we are no longer children we enjoy laughing, playing, staying up past our bedtime and just being together. How blessed our home is tonight. For the first time since the birth of our sweet Ashley my sisters, the girls, my best friends, are here with my nieces and nephews to celebrate the first week of summer vacation. Ash is finally strong enough to be surrounded by those who have loved her and prayed for her since her very beginning.

Its an amazing relationship. Love, support, help, encouragement, words of wisdom, advice, giggles and games. The two of them are some of my very favorite people in this world, and tonight they are here. Close enough to feel their arms surround me as they hug me tight. Please tell me I'm not dreaming. I have missed this SO much!

One of the harder parts of Ash's life has been the separation we have had from our extended family in order to protect her. Mine and Dave's best friends are my three siblings and their spouses. We love them so much and have spent the last 15 years of our married life hanging out with them at every possible opportunity. Along with my siblings comes my nieces and nephews. Lots of them. Amazing, beautiful, talented children who we have watched from the days of their births as they have grown up. My heart is over flowing tonight as the children run from room to room slamming doors. There is lots and lots of noise in our house tonight and it sounds so good to my ears.

What joy it brings me to see my sisters reach out to touch Ash's little hands. To listen to the words they say to her as they make "friends" with the baby they spent so many years praying Dave and I would be allowed to parent. They love her so much and long to hold her and touch her. They will have an entire week here with us and my hope is that during that time she will learn to trust them enough that they might actually have the opportunity to hold her close.

Ashley has been very entertaining. She is happy and silly. Stubborn and spoiled. Sweet, sweet, sweet. The girls have laughed a lot as our little Ashley Kate showed herself all day long. I'm sure by the end of the week they won't think watching Blue each and every moment of the day is half as funny as they used too. They have no idea what they are in for!

I am looking forward to sharing my baby with the girls this week. We have so many fun things planned. I still can't believe they are actually here. Wow, God is so good and I am so blessed.

5/22/2008

Ughh!

There is nothing more frustrating to me then to have my journal "addiction" interrupted by a loss of access to the Internet. I have no idea why this silly thing doesn't want to work on some days, but for the moment it is up and running so I'm going to type as fast as I can.

Yesterday was .... well... let me just say it was... long. A very long day. Ash I ran from our pedi surgeon, to cardiology, to ultra sound, to radiology, to interventional radiology and then to the holding room for an hour and a half wait while we attempted to bust up some clots in her central line. We finally left the hospital a little after 4 pm. My sweet baby cried and cried and cried as each set of professionals did "their thing". She is so frightened of them all. Even though not one single procedure caused her any type of physical pain. She doesn't trust them and she thinks they are going to hurt her. Everyone was very understanding and didn't blame her for the reactions she had, but like I predicted the crying was exhausting and she slept very, very well once we arrived home.

The ultra sound techs told me that "all they could see was good news", but thats not official. I appreciated the information they offered and the way they treated Ashley Kate. The ultrasound lasted about an hour and she was very disturbed during the whole procedure. She had to lay very still and be held down as they searched for open pathways in her veinous system. God was very good to us and placed a father of two special needs children in front of the machine for us. He was so patient and kind to Ash. Not bothered one bit by her fear or her screaming. He gently wiped the tears off her cheeks and took his time with her eventually even getting her to settle enough to watch the screen with him as the red, blue, and green colors showed up. I have never been more grateful. He was amazing with her and my heart was blessed to listen to him interact with my sweet baby. His first question to me was, "Does she understand what I am saying to her?" and once I told him that yes she could understand but could not speak or answer him he took over from there. It was one of the best experiences we have had during an appointment yet. I left the room feeling so blessed for his two little boys, one who has down syndrome and the other who is autistic. God gave them a very special daddy just like He gave to Ashley Kate and I was thankful for that.

The plan for her central line is up in the air. The one thing that I found out for sure is that once it is decided to remove it she will have to be in the PICU for a whole week. This is very different from the removal of her other two lines. Why so different? Coumidin. It is a lot more complex since she is on coumidin. Every one knows we need to have the line removed, but everyone still wants lots of blood from Ashley's veins each week and they just can't keep up with all the needle sticks and pokes. I'm not sure what we are going to do. The longer it is in place the more at risk she is for infection and those infections are literally life threatening. I just keep reminding myself that God protected her for 14 months with her first line and then another 6 months with her second while she received her chemotherapy. I know He can do it again. The plan at this point is a 6 month treatment with coumidin. She has completed 2. We have a long way to go.

Her chest x ray was good. That is encouraging to know. We have been slowly switching her back to a diet that includes fat. The complications that could arise from the switch would be a re accumulation of fluid in the plural space of her lungs. So far so good and that is a huge blessing.

Now for the most encouraging part of our week. Are you ready for this?
Ashley Kate has eaten 3 consecutive meals of a full serving of baby food. Yes, I said 3 meals in a row! This is the biggest accomplishment we have made in almost 3 years of trying to teach her to eat. I know its only baby foods, but she has to start somewhere and it looks as if she finally has started. There are no words to express how encouraged my heart has been over this. She is sitting at the table like a big girl and eating bite after bite. Up until this week the most she had ever eaten is 11 bites of peas. She has now finished a full jar of green beans. A full jar of savory beef and vegetables, and a 1/4 cup of cereal .

I have a lot of exciting things to share, but its late and I'm afraid of losing my connection before getting it to post so I'm going to close. Thanks for all your prayers for our appointments yesterday. Things went as well as they could. Of course they didn't tell me we could stop the coumidin and blood draws, but I knew I was only dreaming. Hope you all had a great day. God bless. Trish.

5/21/2008

Off to...

...look for clots. Thats our plan for the day. Ash and I are walking out the door to head over to Schumpert to see our pedi surgeon and let him look around via the ultra sound to locate and hopefully get a "guestiment" on the size of the remaining clots and make decisions about the future of her central line. I am anticipating nothing to be painful for Ash this morning just irritating. She HATES to be held down while they ultrasound so the tears will be flowing and by the time we head home this afternoon she should be ready for a long nap from all the fit throwing. I don't blame her for not liking the doctor or their offices, shes too smart and remembers that all too often these "strangers" have to cause her pain.

Its my hope that all the clots are GONE and the coumidin could be stopped and they would declare she never has to have her blood checked again! I know, I'm only dreaming, but a mom can dream can't she?

Have a great day. Tall to you later! Trish

5/20/2008

Just Because He Can...

... Doesn't mean He has to or that He will.

More times than I can count I have been asked questions pertaining to my belief in God or my lack of faith in His ability to heal Ashley Kate. I am in no way offended or angry by these questions, but this morning I am going to take the time to explain what I have personally learned in my own walk and in my own faith. This does not mean that anyone else has to agree or believe the way I do, it is simply my explanation of how I feel and believe. I'm going to do my best to explain.

In the beginning of Ashley Kate's life I really thought that God was going to allow her to avoid so much of what has ended up taking place. I believed that He would spare her many, many things. Why I thought that He would just because He could? I have no idea. I mean, she had Dave and I as her parents and we loved God and believed in Him and His ability to heal so didn't that mean that our baby would be? I have learned that is not the case. Healing may or may not be His intentions for our daughter. I don't know what He is going to do and trying to guess or figure it out is impossible.

I will never forget the day that Dave and I were driving down the road toward the hospital and I came to the realization that God owed me nothing and that He didn't have to heal Ash's bowel or spare her liver. He didn't have to allow her to survive and He didn't have to let her live. As I tried to explain to Dave the desperation I felt at that realization I cried hot, burning tears. Its like the tears were releasing an anger from inside of me as I spoke. I yelled, "He doesn't have to heal her just because I believe in Him! He is God and He can do whatever He wants!" It hurt me to know that in that moment. NO matter how deeply I loved my baby or how desperately I wanted to keep her from all of this the only one who could change it all was God and it was only if He choose to. Nothing I did could change His mind. He created her and He would decide what her life would hold. My heart felt pain like it had never before. My faith was shaky. My words were angry. My tears were the evidence of the hurt, the anger, the abandonment, the desperation, the exhaustion, the everything that my heart held. It would be nothing for Him to heal her, a small task for a God so big, but it would be everything to me. Why didn't He do it?

Through the years I have learned that He is God and His plan may not be mine. What He wants for Ashley may be different than what I wanted for her. What He allows for her to experience may be(and has been) completely different than what I wanted for her.

It is my personal belief that He never intended for this world to be full of the sin it is. He never intended for His creation to turn to alcohol rather than Him. He never intended for those He loved to choose a hit or a needle over Him. He never intended for there to be homeless, used, and abused people. He never intended for baby's to struggle to develop in wombs of mommy's who were unaware that a life fought for survival inside of them and who very likely wouldn't have cared if they had known. He never intended for baby girls to be born a full trimester early. This is my personal belief. He didn't intend for it to be this way, but He allowed it. AND OH, HOW THANKFUL MY HEART IS THAT HE DID! He allowed my sweet Ashley Kate to survive despite the sin in this world that surrounded her from her very beginning. He allowed her to beat the odds in that incubator. To survive a deadly disease that stole her bowel. To hang on for months and months without the ability to absorb nutrition and to grow. To breathe in and out everyday and keep on going while her liver slowly but surely deteriorated while organs were being sought. To overcome a transplant of 3 organs, a cardiac arrest, more life threatening infections than I can even keep up with, cancer in her lungs, rejection of those organs, battle after battle, odd after odd, to wake up each and every day with a smile, a twinkle, a joy in her eyes, and a love for her family He allows her to have.

Sin is real. Separation from God because of it is real. Innocent children reaping the devastation of the sowing of the sin of their parents is real. BUT SO IS GOD! and despite it all HE LOVES US and HE LOVES MY ASHLEY whether He chooses complete healing or not. It is His choice not mine and nothing I can do will change His mind or the path that He has in store for her.

Oh, I love my daughter and I hope and pray for healing and restoration of her body, but I also love my God and if He doesn't choose to heal her then His plan for her must be bigger than that. I don't have a lack of belief in His ability to heal, but I have to live everyday with her disabilities and learn to teach her to overcome the obstacles that she faces. That is my job and today the obstacle is the ability to draw blood from her veins. It hurts. No matter how many times it has been done. No matter how many children in this world have to have it done also. No matter how "normal" it is to her nurses to do it. No matter how many times I am told "its no big deal all the transplant kids have to have it done." Knowing that those needles hurt my baby hurts my heart so my prayer is that God would give her the ability to be so tough she doesn't even feel it when it happens. That is my prayer for my baby. The reality of her life is that her organs don't belong to her, they weren't created for her tiny body but for another's and since they reside inside of her she will always have to have her blood drawn to monitor them. Thats not a lack of faith in her healing its just what our normal is.


Just because He can do something doesn't mean He will, and just because He didn't choose to heal her bowel, save her liver, or keep her from requiring this transplant doesn't mean that we didn't believe He could. He just did things differently than what I thought He would in the beginning. He's God and He can do that. I'm just her mommy, He's her God and if I'm going to trust Him with my eternity then I think I'll have to trust Him with my baby too.

I hope this makes a little bit of sense to you. I'm not upset by the questions, just wanted to let you know that I do believe that He has the ability to heal her, but I also believe He doesn't have to heal her just because I believe. His plan for her could be even bigger than that. You never know.

5/19/2008

Girls, Giggles, and Goodnights



Love this picture! Dave snapped it last night after he took Ashley Kate in to say goodnight to Allison. When I found it this afternoon it made me giggle. Those silly girls bring a smile to my heart. I just love them so much and to see how much they love each other makes my heart happy. Ash still had one pigtail in and she's just the cutest thing ever.

Our weekend was good. Not a successful tournament for the boys as far as championships go, but lots of learning opportunities on the field and thats what we're there for. "Its not all about winning its about baseball" according to Blake. I love his attitude. He is there to play the game, get more time on the field, learn from each experience, and hit the ball. He really gets it. Of course winning is great, don't get him wrong. He prefers to win, but the experience is what is going to matter in the future. Anyway, we had a great time.

Ash continues to look good on the outside, but on the inside we're not so sure. Her blood is messed up. Thick and "clotty"(I think I just made that word up) and just not right. We adjusted her coumidin dose again today and scheduled an ultrasound for Wednesday. If I could guess I would say that her central line is clotting off and there may be a possible blood clot around it. I pray I'm wrong, but its pretty suspicious to me and so I'm thankful to finally have someone look at the clots we are treating. The whole blood work/lab work stresses me out. I hate it more than any other part of her care. I wish it didn't have to be done, but unfortunately it is something she will always HAVE to have done. This morning I found myself praying for her and just asking God to make it easy for her. I asked for her to get so tough that she not care that they are sticking her. I don't know if it will happen, but I pray it does. I think she may lose this line this week which means we will be "digging" for veins again and hoping they give up a little blood so all her teams will be happy. I don't know what we will do when we can't get it. Just hold our breath and hope nothing goes wrong? I don't even want to think about it, but the truth is the central lines need to go. All its doing is making things more difficult in the long run.

Other than the lab issues she looks great. We are loving on her everyday. Actually every minute of every day. She just makes our hearts and our home happy. She and I are counting the days until school is out and Blake and Al get to hang out at home all day long. We can't wait for Friday.

Well, the grocery store is calling my name, and the kids are calling for food. I have to get the first one done in order to help with the other. I'll talk to you guys later tonight. Hope your day went well. Take care. Trish

5/16/2008

Waiting and Waving

Ash is sooooo ready to go. She has been waiting and waving bye bye all day long as I have run from room to room packing bags, uniforms, and equipment. She knows its Friday and that means she gets to get out of the house and go. Other than the occasional walk to the park and trip to the doctor's office she doesn't get to go anywhere except on Fridays. Fridays are the days we load it all up and head out to watch the Tarheels go to bat. She is so excited.

She really makes me laugh. This child communicates so well even though she doesn't speak. She can tell me exactly what she wants and how she wants to get it. She has been learning so much lately and our hearts are encouraged as she learns to sign more and more words. Her newest behavior this week is a lot encouraging and a little discouraging. She wants up. Problem is she doesn't know how to get up. When she is ready to sit up she grunts, reaches, curls, rolls, and does everything but push(which is exactly what it is going to take) to try and go from lying down to sitting up on her own. So when she has tried and is unsuccessful she has begun banging her head against the floor. Not good. I mean, its good that she wants to get up. The first thing it takes is having the desire to do it. The bad thing is that its a very unpleasant behavior and not that safe.

Yesterday I walked into the room and caught her scooting again. It was only the second time she had really done it. Since sharing it with you a few weeks ago we have tried everything to get her to go again and she refused. I was so excited to see her doing it again I began clapping for her. Now she thinks all she has to do is lean forward on her hands, bounce a few times and then sit up and start the applause for herself. She is so ornery! She is going to do things when she wants to do them and how she wants to do them and thats the way its going to be.

She is eating a few bites of baby food each day. Nothing huge and not enough to supplement any calories, but at least she's trying again. We are encouraged by that. She loves to drink water from a big girl cup and has started dipping two fingers into her cup and sucking the water off of them. Not a pleasant behavior, but a very funny one. Its like she has to test it out before she takes a drink. She had her daddy laughing pretty hard this afternoon.

There are days when I just don't know what we are going to do with this silly pickle, and then there are days when my heart is so touched just to see who she is and all that she does accomplish. She's going to get there (whatever "there" is supposed to be) its just gonna be on her terms. Its been a long, emotional week. Full of ups and downs and frightening labs, but all in all she made it through another one and we were blessed to be able to stay here in Texas. For that and many, many other things we are grateful.

Well, its time to load 'em up. Were off to Louisiana this weekend. Hope you enjoy your time with your families. I know I'm going to enjoy mine. Talk to you soon. Trish

5/15/2008

Listening and Longing

Ash and I spent a good part of the afternoon listening to her sweet, sweet voice. Tears rolled down my cheeks as my almost 3 year old sat applauding the sounds of her own voice. The voice we haven't really heard in 16 months. We miss it. I think she does too. She loves to see this clip. I don't think she's confused by it. You can see her thinking while she listens. It makes me think she remembers. Remembers the sound of it, the ability to use it, the words she used to make with it. She wants to speak so badly. She works and works at getting something out, but it doesn't come. She really and truly does not know how to make the words come out, and I am at a loss because I really and truly don't know how to help her. It makes my heart sad. For her and for me. She has the sweetest sounding voice I have ever heard.

I say the words to her over and over again and she smiles the biggest smile. I love that she recognizes her own voice. She wants me to play it over and over and over again. I oblige her. It makes me just as happy to hear it.

I think I may have shared this clip with you before, but sadly its the only clip I have of her speaking. How I wish I would have known that a few weeks later she would lose the ability to speak. Dave and I laid in bed for months listening to our baby gherkin say, "my momma" all night long. It made us giggle how she would "talk" us to sleep. I wish, I wish, I wish I would have taped it, but I didn't. Just one of those hard lessons I have learned. Make each moment special. Take the time to enjoy them. They won't be there forever.
video

Tonight I listen to her coo and giggle and although I long to hear her say real words like "momma" again I find my heart thankful. Thankful that I have the opportunity to lie in my bed and listen to her for another night. The tears still fall, but many of them fall because I'm just grateful. Grateful to have the sweetest baby girl across the room "talking" us all to sleep.

No Posts? No Internet.

Trish doesn't have access to the blog today. This won't be a long post but wanted to let you know that despite her crazy lab work the Gherkin looks great. Her labs are still all screwed up and we are waiting to here from somebody, anybody, from any of our 3 teams about what they would like done. Good news is her BUN is back to normal. Bad news is her liver enzymes remain a mess, her glucose is dangerously low, her albumin is pretty low, her blood is still way to thick, and lots and lots of other nonsense based on the blood work. Who knows what comes next? We just wait and thank God that the pickle is playing and oblivious to the mess goin on inside those veins.

Thanks for praying guys.

Dave

5/14/2008

Dave took the Ark

So that leaves us stranded today. With the amount of rain that is falling outside my window an ark is the only appropriate mode of transportation, and since I can't find ours I assume Dave must have needed it to get to the office. Hopefully Ashley Kate will be cooperative today and not require a trip to the doctor or you know where. Her blood is still pretty thick, but I think the lab might be able to manage with it today. I hope. Everybody, Nebraska, Louisiana, and Texas, want to see her labs. When you add us to that mix I think that qualifies for everybody.

The nice thing about the rain is the way it sounds falling on the roof top in the kitchen. Its such a beautiful sound. One of the main reasons I wanted this little yellow house is because of the description the previous owner gave us of that. The ceiling has been taken all the way up to the rafters and it looks old and crusty. Just exactly the way I like things. Well used, worn, and loved. The sounds are amazing as I stand there folding laundry. You can kind of get lost in them and nothing around you seems to really matter. I love that feeling. The feeling I get when I step inside our house. The world is locked outside and home is inside. It feels so good!

Late last week when I received the first call from transplant I was enjoying an early Mother's Day dinner with my in laws. The call came out of nowhere and quickly sucked me back into transplant life. I had been busy hiding out in the world of real life. You know the one that doesn't include hospitals and the like? The second call came while I was leaving the grocery store. I stood outside on the side walk, basket over flowing, and took down the instructions I was being given on the back of my receipt. The third call came Monday afternoon while I was helping serve lunch at the school. On each occasion I took a moment to smile, whisper thank you, and enjoy the realization that I was home. Home for real. I was no longer living inside the walls of a little room in a PICU somewhere. The doctors couldn't just poke their heads in the door and talk to me. They were calling me to do that because Ash and I were out living life, enjoying our family, and taking care of business. It felt good to know that and yet still a little haunting to be reminded how quickly it could all change.

So today Ash and I are hanging out, folding laundry, thawing out chicken for dinner, and listening to the rain fall on the rooftop. Never mind the fact that shes already been through 2 ostomy bags, peed all over the bed during the changing of one of them, decided to throw up projectile style, torn up a whole box of kleenex and thrown it across my bedroom, had her blood drawn, and broke the telephone all before 11am. Life is beautiful. Home is wonderful, and the hope that we are here to stay is remaining as strong as we can keep it. Hope you have a blessed day, and if you live around this part of the country I hope your Arks in floating order today. Love you guys. Trish

5/13/2008

Why is she dehydrated?

Good question. No one knows. We spoke with our doctors in Shreveport this morning and they wanted her pediatrician to "put an eye on her". So we made the appointment, ran her up there and he agreed with me that she doesn't look dehydrated. She was actually crying while we were there and the tears were flowing. Still he ordered another IV bolus to be run and it has two more hours to go until it is complete. The extra 1/2 normal arrived mid morning and I have made the new formula recipe and included the extra fluid. I also increase her hourly rate so that she gets more fluid than she was. We will attempt to draw labs in the morning and if we are unsuccessful then its off to Schumpert we go and the line will probably be removed. Thats the plan at this point.

We have been in the process of slowly switching Ash's formula from the non fat formula(because of the chest injury, chylo thorax, she had in February) back to neo cate, but that change should not be causing dehydration. She is still not "losing" fluids in any way that we can figure out. Her stool output is normal and she's not vomiting. She is making urine and her enteral feeds are being tolerated so I have no idea why she is dry vascularly. I just can't figure it out. She has started to tremble a little and that is one of the side effects of dehydration that she usually presents with.

Dave and I are concerned. Those little red flags that we hide in the back of our minds are starting to pop up. He said over lunch how easy it is to forget that she's just so fragile. The good days are much more fun than the bad and we aren't looking forward to problems. We are hoping all this extra fluid does the trick without triggering any kind of respiratory issue. You know how famous she is for shifting fluids to all the wrong spaces. I am staying on top of her blood pressures, temperature, and heart rate. We know the drill. If any of the three pop outside of the norm then off to the hospital we must go.

Yikes!

Just finished attempting to draw blood for Ash's labs this morning. Somethings up, but don't know what. This child looks better than she EVER has, but her blood is messed up.

I struggled to get blood from the line, it was thick(something that should be impossible with the amount of coumidin she is taking). By the time I could get it into the tubes it was already clotting. Again this should be impossible because of her coumidin. What is going on?

As I tried and tried to get it to flow into the little tubes, a clot(where did that come from? shes on COUMIDIN!) broke free and blood squirted all over the bed, the headboard, the wall, and us. Yikes! It looked criminal in our room this morning. Allie's eyes were huge! I'm surprised she didn't get sprinkled herself as she waited on me to finish so I could fix her hair for school.

I remember a night in the hospital when she was so dry it was almost impossible to get any blood to flow from her veins, but she was really, really weak and sick. She looks nothing like that now. She is happy and silly. Strong and ornery. Her heart rate is good and her blood pressure is fine too. Nothing makes any sense.

I 'm just sitting here waiting for the lab to call me and tell me the blood is not any good. I don't think they will be able to run any tests on it because of its thickness, but I tried anyway. We really need to see what her PT and INR levels are. We also need to know the BUN and sodium levels. Hopefully they can do something with what I sent.

Never boring around here. There's always something going on. Praying this is quickly resolved and not that big of a deal.

5/12/2008

Fluid Update


You sure couldn't tell it by the amount of spitting our little lady is doing(notice the drop falling from her chin?), but according to her blood work she is erring on the side of dehydration. It makes no sense to me. She looks better than ever, is not vomiting, not stooling out, not anything(except for spitting). She is making good urine. Her FK levels are a little high, but not alarming. I have no idea where her fluid is going, but its not inside of her vessels. In the past I have always been able to look at Ash's appearance and tell you within days of her becoming dehydrated. She usually becomes very irritable and thirsty. Not so this time. So what do we do?

We gave the bolus over the weekend, today we are adding more to 1/2 normal to her formula recipe and are increasing the amount of cc's per hour that she is receiving. We will draw more blood work and check her chemistries again on Thursday and watch her closely. At this time that is all we can do. Hopefully it means nothing and hopefully this is not a red flag or indicator of anything brewing underneath the surface.

So this is what we know and now we wait. At least she's happy and knows how to spit, right?

Eye of the Beholder

When I look at my son I don't see the freckles across his face that haunt him. When I look at Allison Brooke those pesky cowlicks that make her crazy each and every morning before school are not what my eyes focus on. When I see our baby, her chubby face, crooked eye, or scars don't pop out at me. When I behold my children I see nothing but beauty. Nothing less than amazing. Nothing but who they are and what they mean to this mommy's heart. The "flaws" that seem so large to them are nothing to me. I love Blake's face and every single freckle that he has earned from the hours and hours of hard work and dedication he puts in out on that field in the hot sun. Allie has the most beautiful hair. I love to brush it, to curl it, to play with it. She wakes in the morning with it scattered around her face, cowlicks and all, and she has never looked more beautiful than in those early morning moments. Our baby pickle, each and every ounce of herself is miraculous. There is nothing about her that I do not view as the direct hand of our God. In my eyes they are beautiful. All three of our children. Each part of them.

Why then is it so difficult for me to remember that our Creator feels the same way about me? I am His creation, His child, His beloved. There is nothing about my make up that He does not find beauty in. All too often I think we compare our selves to what this world has deemed as perfect, beautiful, or acceptable. We focus on what we are surrounded with rather than what we are filled with. This has been my struggle as of late. Feeling unacceptable and inadequate.

This morning I am starting over (again). Its so easy for me to lose my focus when it comes to myself. So easy for me to ridicule or degrade my own self. When I view who I am I forget that I am who He has created for me to be, and despite my shortcomings He loves me. Loves me so much that He was willing to go to the cross for me. Just as I see the beauty that lies within the hearts of my children, He finds that beauty in me too because I am His child.

This world is a busy, busy place. I run from here to there and fall in the bed at night feeling broken and bruised from some of what I am faced with( I am sure many of you can understand). Ugly things reside outside the walls of my home and some of those things try to steal my focus from what is truly important. Its not about my dress size or my flaws, its about my heart. Its not about Ashley Kate's struggles, its about her triumphs. No matter how large or how small they may seem on the charts or the scales of this world.

Beauty is truly in the eye of the beholder and when I look around me I choose to see it.

5/09/2008

Play ball!


This is her new favorite toy. NO baby dolls, no blocks, no tea parties for our girl. Give her a baseball and let the fun begin. As you might imagine it puts a huge smile on our Blake's face. She's such a silly girl!

We received a call from our transplant team this afternoon. Somethings up with Ash's blood work. They were concerned because her "BUN is dangerously high and her sodium is dangerously low". Not words you want to hear when speaking of Ashley Kate. The funny thing is that she looks better than she ever has. We had no idea anything was up with her. She is happy, playful, and full of energy. So tonight we are running a normal saline bolus here at home in hopes that things will straighten out without having to make trip to the hospital. At the moment she is throwing the baseball with her Nan and shows no signs of dehydration or trouble. She's not vomiting, not stooling out, not anything. She's just happy. We plan on drawing labs Sunday morning to see if this did the trick. If not decisions will be made at that point.

Outside of this little fluid issue things have been going pretty well. Her FK and Coumidin levels are a little out of whack so we have been playing with the doses. Her liver enzymes are acting up a little too. It always makes us nervous to hear from the team, but hopefully none of these little issues will cause her to have to spend anymore time away from home. She just looks so great and we are so grateful for each and every good day He gives to her.

5/07/2008

The Cutest Thing I've Ever Seen!

Presenting... drum roll please... Ashley's 1st PIGTAILS!!!
With Bows, and



Without.




This mommy's heart is happy. Her hair is finally growing back and we might end up with a full ponytail someday to boot! I just wanted to share.

P.S. Sorry about the poor quality of the photos. I was in a hurry trying to capture the moment before she pulled them out. Take care. Trish

5/06/2008

Thats How I Roll

Every single morning Dave and Blake find themselves sitting in the car waiting, and waiting, and waiting on...Allie. Not a morning goes by that she isn't the last to wake up, the last to get ready, the last to walk out the door, and the last to be in the car. On the other end of our destinations she is always the last to get out of the car as well(which can be frustrating when waiting to lock the doors especially on rainy days!). This morning was not unlike every other morning of this school year. As she took her time buckling up her seat belt her daddy announced,

"From now on I'm going to call you "Dilly Dally Allie." To which she replied while nodding her head,

"That's just how I roll, Dad."

I can't tell you how hard I laughed tonight as Dave shared the account with me. That girl is every bit of a mess as her momma and it brings the biggest smile to my heart. She can be absolutely impossible(as can I), but she is such a blessing in this home. I thank God daily for my oldest daughter. She has my attitude and her daddy's quick wit and sense of humor. Oh, how I love her!

Speaking of rolling, Ashley Kate and I spent a good time "rolling" in her therapy room today(aka: her nursery only now it sits without her crib inside of it). She did such a great job today! She and I played ball together as we worked on the B sound. She refused to say it, but she amazed me with her new skills of stopping, catching, and rolling her giant therapy ball. She is getting so strong and it is so exciting! I just smiled ear to ear as we played ball together for over an hour. After playing ball she became very interested in the flowers on her rug. She would reach and point to them and then rub her fingers across them. I was watching her and repeating the words, "Flower, pretty flower" when I noticed what she was doing. She would look at the rug, touch the flower, and then cut her eyes over to the wall. I watched as her eyes searched for something. It took me minute to figure it out, but eventually I saw what she was doing. She has giant wooden flowers attached to the wall around her room and she was looking for the flowers that matched the ones on her rug. It was amazing to see her little mind at work. Once she would locate the flower she was ready to pick another on the rug and then start the process all over again. I kept encouraging the "game" by saying, "flower, pretty flower". Oh, how my heart soared as I "played along with our little pickle. She is so smart. She is learning and exploring the world around her more and more every day. I so badly wish she could talk and tell me what she is thinking. I just keep hoping for someday. Someday she might. I can just imagine the talks we will have.

She looks so good. I'm just blessed by her presence in our home each and every day. Ornery and stubborn. Silly and sweet. I love this baby girl with all my heart. I don't think I will ever get over the feeling of awe that she brings to my heart. How in the world did we get to be the lucky ones she knows as mommy and daddy? I am just so grateful.

It was a good day. I am so close to getting all of the finishing touches completed in Allison's bedroom. It is turning out really beautiful and I hope that I will be able to share some pictures of it with you by next week. I am loving her big girl room just as much as I loved her little girl room. The twinkle in her eye each day as it continues to come together is priceless! I'm tired. Really tired, but it is SO worth it. My "Dilly Dally Allie" is precious and I love that she "rolls" the way she does.

Hope you are tucked in your beds, your babies are fast asleep, and your day was as blessed as mine. God's really, really good isn't He? Take care my friends. You are loved.

P.S. Cindy, I received the package yesterday and we LOVE it! I will have to take a picture of Ash sleeping on that pillow for you. It is so precious. Thank you for all the love and time you put the gift. It was truly appreciated. Take care. Trish

He didn't have to...



..give us moments like this, but I'm so thankful He did.

...make a sunset so amazing, but I'm so thankful He did.

...choose for the water to be so blue, but I'm so thankful He did.

...cause a breeze to be cool, but I'm so thankful He did.

...arrange the stars in the sky, but I'm so thankful He did.

...create splashes of color across on open field, but I'm so thankful He did.

...give the trees shade to share, but I'm so thankful He did.

...allow a giraffe to get so tall, a kitten to be so soft, or a puppy to be so fun, but I'm so thankful that He did.

...give us a Blake, an Allie, or an Ashley Kate, but I'm so thankful that He did.

...Love us like He does, but I'm so thankful that He did.

... bare my sin on the cross, but I'm so thankful that He did.

Just a few things I found myself grateful for last night as Dave and I made a quiet drive over to Canton to retrieve the stranded RV. He tried to study for a lecture as I observed all that was around. The sunset, the splashes of yellow flowers across the fields, the beatuy of the pine trees, the cool air, the evening. Life is really good. Our backseat held a miracle, buckeld tightly in her carseat. Our home held Blake and Allie tucked warmly in their beds. My heart held gratitude for this life and all that we have been given. We enjoyed visiting about everything under the sun. From baseball to church doctrine and in the end we decided that its Jesus we believe in and thats all that really matters. The time spent together was really good for us. We needed it. After a busy day with little time to actually connect the drive was a blessing and not a chore.

...allow the RV to break down over the weekend, but now I'm so thankful that He did.

Funny how He knows just exactly what we need.
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5/04/2008

Sometimes life gets in the way of...


...living life.

but not this weekend. It tried, but we prevailed and didn't allow the bumps in our road to steal the joy that we set out to find.

My 34th birthday was Thursday and we loaded up the family that evening and slipped away for a few days to celebrate. Destination? Canton, Tx. First Monday Trade Days. Let the fun begin!!! (for me at least. I'll have to admit they all tried to be good sports about it). Then on to Dallas for a weekend of Tarheel ball.

So what did our weekend entail? Rest. Relaxation. Shopping. A Tornado(a 1/4 mile from the RV we lay sleeping in!). A competitive game of Sequence. Lake side chats. Fishing. Romps through the reeds. Bamboo sword fights. Cricket lullabyes. A breakdown( the RV not us, a mere 3 hours before we had to be in Dallas for the opening game of the tournament!) More "uh-ohs" then we could count from our little pickles mouth. Lots of laughter. Warm chocolate chip cookies. A rescue from our parents. A ride from Blake's coach. A tow truck. Mexican food. A 6-5 win. A 2-0 loss. A 13-3 blow out(in our favor). A tough 10-8 loss. A huge birthday SURPISE! and the most delicious cake you've ever tasted. Memories made with my sisters. Belly laughs that caused us to snort! An unforgettable birthday that just kept going.

Its been one of the most wonderful of my life. Just hanging out with the people I love the most. I couldn't have asked for anything more. Our children are happy and "healthy". Dave and I are so blessed! Ash looks amazing and feels so good. She is absolutely adorable and this afternoon she blew us away as she signed "more drink" when she needed some water. We are the proudest parents around. Each day she learns new things and her ability to live life to the fullest encourages me more than I can describe.

Even when life tries to get in the way of living blessings abound. Tornados. Stranded RVs. Hitched rides. A borrowed vehicle. Nothing could steal from us what God has blessed us with. We have beautiful children, great friends, the most amazing family, each other and so much more. It truly was a happy, happy birthday.

5/01/2008

My birthday blessing

Two years ago today I took our tiny baby girl(a whole 11lbs) to yet another doctor. It was the morning of my 32nd birthday and we went with such high hopes. A fresh set of eyes, a new look, a new opinion. In a matter of minutes my hopes were crushed, my world was spinning, and my heart was broken. Our nine month old miracle was dying. We knew it, but had not yet heard it. In a matter of months, according to this doctor, her liver would fail completely and her life would end. Our time with Ashley Kate was running out. We needed a miracle. I spent my birthday in tears. Dave and I both cried the entire day.




This morning I woke up to that miracle. How blessed my heart was to see that God was still working miracles. He had a plan for Ash's life and for mine. Although I will never forget the pain and devastation felt two years ago today, I have a living, breathing reminder that it is God who is in control of our days. I am going to have an incredibly blessed 34th because this little pickle is still here causing as much trouble as she can. When I look at where she was then and see how far she has come now my heart is over joyed. This child is a gift and having her here with me to celebrate my 33rd and now my 34th birthdays is more than I would have imagined on that day. God is so, so good and merciful and I am so, so blessed.

She lays next to me kicking the keys of this keyboard with all the orneriness inside of her. She is amazing and beautiful! I love her more than I ever knew was possible and she is such a part of me that I couldn't imagine life without her. Its only 9am and I have already been so blessed. I can't imagine what more my day could hold.

Thank you Father for this life. For mine of 34 years and for hers. Thank you for loving us and for being the giver of good gifts. My heart cannot hold all that I feel when think of how you have worked in our lives over the last year. You are good. You are amazing. You are God. Thank you.



Its going to be a great day. My heart is already smiling. Trish