Seasoned

Like a good piece of meat thats been marinated, thrown onto the fire, and taken off to be enjoyed. That's the image that came to mind as Dave and I hurriedly sat down to cram in what was supposed to be a long enjoyable lunch yesterday. I just giggled to myself. Yep, Dave and I have definitely been seasoned in this whole parenting thing.

We decided to take Ash out to lunch with us yesterday. My mom was more than willing to watch her while Dave and I enjoyed a lunch date, but since Ash had been cooped up in the house I thought she might like to get out for an hour or so. So to the office we went, picked up Dave, and then went out to lunch. We sat down to the table with our salads when Ashley was suddenly very fussy. So fussy that her seat in the stroller was not going to do the trick. She had been really fussy through the night and hadn't slept well so I thought she was just tired. I picked her up and she wasn't happy. So we wiped down the booth and sat her next to me still fussy and growing louder by the minute. I picked her up and held her close to me as she cried on my shoulder and then I felt it. A warm (too warm) fluid gushing onto my shirt. I slowly pulled her back away from me just enough to investigate and thats when I saw it. (Here is where the seasoned part comes into play. When you've been seasoned in transplant life with a tiny pickle there's not too much that can throw you.)

Somehow, someway Ashley's G-J tube had broken(probably the night before hence all the fussing?). The balloon that holds it inside the wall of the stomach had burst and approximately 4 inches of tube(out of the 15 inches) that should have been tucked into the jejunum portion of the small intestine was exposed. As was the hole in her stomach. "Ok," I thought to myself, "its noon time, the restaurant is full of people enjoying their lunches who need not to figure out that we now have gastric content, and bowel content, along with a frightening looking tube coming out of our child's tummy. Nobody deserves a shock like this on their lunch hour." So as I held Ash close to my chest (hiding her "extra part" the best I could) I calmly approached Dave who had gone back to the salad bar and said, "I would like for you to grab my purse and the diaper bag and meet us out in the car." Confused he agreed.

We sat in the parking lot with a now smiling child and held the g-j tube in her stomach as we waited for a return phone call from our GI doctors office. It didn't come for a while and then once it did they didn't know what to do and they were calling our surgeon's office. Dave and I knew what had to be done we just wanted to make sure there was nothing that fastened or held the other end into her bowel. The call wasn't being returned(it had now been close to 30minutes) so as soon as Nan arrived with a box full of supplies Dave pulled the remaining tube out of our child and replaced it with a g - tube. He then picked up the baby, stepped out of the car and said, "Lets go eat our lunch." So we did.

As we sat down to shove the food into our mouths before Dave had to be back in the office we began to laugh. "Life wasn't supposed to be like this, was it?" I asked.

"I bet you thought we would be chasing our toddler around the house, trying to convince her to eat her vegetables rather than pizza or the dog food didn't you", he said.

"Yeah, I really did. I never imagined I would be hoping she would eat anything including dog food by this point!"

We laughed for a while and then decided that we were proud of how calm we were(man am I glad to have him when these things happen!), how we handled our little "emergency", how much we loved Ashley Kate(and all her bells and whistles), and that life was better this way. Thats when the image of the meat popped into my mind and I thought to myself, "Ok, Lord. You can stick a fork into us now cause I think were done. We're pretty much seasoned and we've been in the fire a long time."

As I pulled into the drive way the phone rang. It was the surgeons office asking us to drive to Shreveport to allow the surgeon to pull out the remaining tube and replace it with a g tube. I just laughed and said we had already handled that and all was fine. We didn't need to make the drive over and that if anything went wrong we would head on over.

Yep, were seasoned. No big deal. The hole has been filled and we are now feeding Ash into her tummy instead of her bowel and so far so good. She seems to be handling it all just fine.

Conversations with Allie

Sitting around the dinner table last night Allie made this statement.

"Did you know that people who's brains don't work right are called retarded?"

Stunned, Shocked, and surprised to hear her use that word I asked, "Why would you say that?"

"Because I learned that today."

"Where?" I wanted to know.

"At school. If your brain doesn't work the way its supposed to then its retarded." she replied.

"Lets not say that anymore, ok? I don't like that word and I think it might hurt people."

Innocently she said, "Alright, but why does that word hurt?"

Good question I thought to myself. Why was my heart hurting at that moment? Why had the word shocked and stunned me and caused me to struggle for words? The stinging in my heart was too much to ignore. I tried to explain.

"Did you know that Ash's brain doesn't work right? Some people think she is that word."

"Well, I don't think she is!"

"I don't either, but her brain doesn't work the way its supposed to yet and I don't know if it ever will."

I could tell she too felt the sting. When applied to her baby sister the sound of that word was now not so innocent.

This morning I still struggle as I recall the conversation. Ashley Kate's brain is injured. It has been since birth. Something about it didn't form the way it should have before she was born. Does that make her retarded? She has spent multiple hours struggling for adequate oxygen on several occasions in her life. Does that mean she is retarded? I can't explain why it is so hard for me to type that word. It just is.

Earlier in the day Allie had come running into the kitchen to get me. Any time the older kids come running after one of us panic sets in. "What? What's wrong?"

"She talked. She really did. I heard her. Do you believe me?"

"Sure I do."

They had been playing with Ash's therapy ball in the nursery and as it rolled away she said, "Uh-oh". Not once but twice. I never heard her say it yesterday, but Allie insisted that she did.

This morning as I fought to keep my eyes closed as tightly as I could I heard this sound, "Uh-oh". Loud and clear. So clear I thought I was dreaming until I looked across the room into Ash's crib. You should have seen the smile on her face and the applause she gave to herself.
She said it. Allie was right. My heart is SO proud!

In our home, with our Ashley, the one God gave to us, the little things are big. One big scoot across the floor. A roll from side to side. The sound of "Uh-oh" coming from the crib. It may not sound like much to some, but to us it means so very much. We rejoice with each new event. We celebrate 2 feet as if it were 2 miles. We smile so big you would think the world had been handed to us on a platter. I love that! The feeling her success brings to our hearts. The gratitude that we feel. Life is better this way. We now live as if each day were miraculous and each moment a treasure. Nothing Ash does is taken for granted. She is alive. She is growing. She is happy. She is home.

I don't think I will ever forget the words that were spoken to us on the last day of Ashley Kate's transplant evaluation. "Now we have to decide "if" we are going to list her. We have to decide if there is someone more worthy of the organs than Ashley. Someone who would have a better quality of life." I think I know why the word we discussed last night over dinner stings so very bad. Although it wasn't spoken that day it was implied. Its the one word that stood between her imminent death and her chance at a longer life. Yes, I know all too well that Ashley Kate's brain is a little slower than it should be and that it is missing some very important mylenation around those precious nerves, but her life IS miraculous. It is nothing short of that, and it is through those miracles He has taught us how to truly live. For that I am forever grateful.

Never grows old

No, I'm not referring to myself. I think a few photographs of myself taken over the last 2 and 1/2 years could quickly put that thought to rest.

The sound of "it". Those words spoken from the children. The gestures that they each show in order to convey it. My heart sings each day as the three of them announce how much they love us. They could say it or show it over and over and over and I KNOW it would never grow old. Since the first time Blake stated, "I wuv you" as a toddler, or the first time our Allie girl grabbed so tightly around my neck that I thought she would literally choke me, or the first time Ashley Kate reached out to me, brushed my arm with her hand, and leaned that little head to rest upon me in an effort to hug me my heart became sensitive to their acknowledgement of their feelings toward me. There is something about hearing those three little words coming out of the mouths of your children that feels so good.

This morning as I packed lunches Blake walked up behind me, placed his arm around my shoulder and said, "I love ya, mom". As Allie walked out the door she turned back around, ran up the walk and hugged me one more time then whispered, "I love you". Then as I checked on Ashley Kate(who had been moved to our bed sometime early this morning) she peeked open her eyes, squinted her nose, and smiled a smile so wide that I knew without a doubt she was telling how much she loved me. I covered her up, she closed her eyes tight, and while still smiling snuggled up under that comforter to go right back to sleep. Awake just long enough to say, "I love you mommy". I may never hear her audible voice again, but her eyes, her smile, her gestures toward us say it loud and clear. Our prayers were answered. She gives and receives love.

Their words have always been precious, but lately they have taken on such meaning to me. I'm just so sensitive toward the feelings they have in their hearts toward their Dad and I. Our time spent together has become so important. There is not another soul in this world that I would rather spend my time with. Blake, Allie, and Ashley are growing up. Quickly. Too quickly. Its really sad, but yet so fun at the same time. I am watching my little people become young people(at least two of them are. Our Ashley Kate is still a baby and she's almost three!). I don't know how many more days we have until they decide that loving mom and dad so much is no longer cool. I would like to think those days will never come, but I'm too smart for that. I've been there myself. I've watched my nieces and nephews go through that stage. I am now watching my friends children do the same thing. Oh, I know it doesn't last forever, but I don't look forward to the day when they realize we aren't that cool. For now I'm just gonna soak it up.

Our weekend was blessed. Lots of time spent together. Lots of fun memories. Ash looked good and felt even better. She began signing a couple of words and that was pretty exciting. Too bad the signs she picked up where actually things she has no interest in. Things like "apple". We just giggled and applauded knowing that she wouldn't take a bite of that apple for anything. She should have learned the sign for ball because all she plans on doing is throwing that apple across the room! Not too long ago someone had anonymously sent her a few books, and DVDs, and she loves them.

We met a few more of our blog readers on the ball field. That was exciting too. Its really fun to be sitting around and have people come up and introduce themselves to you. This weekend we had the privilege of meeting a seven year old named A.J. who knows all to well what living in the hospital feels like. He had the most amazing eyes I have ever seen! Absolutely beautiful. His mom brought tears to my eyes as she shared that she felt so much of what I write about. I could tell she meant it. She did understand and that encouraged my heart more than she will ever know. Thanks guys for making yourselves known to us.

Well, the weekend is over(for four days at least! Then we get to run away again for my birthday and another ball tournament) so I guess its time for the laundry, bed making, grocery shopping, and all that stuff. Hope you all have a great day. I'm off to get started. Take care. Trish

Sorry, Dave, but I just hade to share...

... a few more. I know you said not to and I know Ashley is begging me to stop too, but the last picture just makes me laugh out loud every time I look at it.

"Mommy, please don't show the world this picture, I'm never going to hear the end of it."



"Ashley, mommy loves you more than anything and so many other people do too so I have to show them how adorable you were being yesterday. Please forgive me."


Hope you all enjoy it as much as we have. Have a great weekend. We are off to Lufkin to watch our boys play.

P.S. For those who asked I found Ashley's dress on ebay. The lady who makes them is a nurse who has two little girls and has decided to stay home with them instead of working. She makes the dresses to help bring in money for the family. I'll try and figure out the name of her business and post next week(I ordered them for Ash last summer before her birthday and I forgot the name of the business.)

You can't fake this...

My favorite word to use when describing our sweet Ashley Kate is this: J O Y! You can't make it up, you can't fake it. Either you have it or you don't. She definitely has it, and I love her so much for sharing it with us. This picture makes me smile and I hope it does the same for each of you. No matter what your struggling with today, you can't help but feel a little better when you see someone loving life as much as Ash. Thanks so much for praying for this baby. Our home wouldn't be the same without her. Have a great day.

The Bravest Girl I Know

Tonight as we worked together changing Ashley Kate's line dressing Dave asked if I had ever taken the time to count her scars. In all honesty I think it would be an impossible feat. There are so many small ones from the multiple sutures they use to secure her central lines, then we have sets of them from her multiple chest tubes and the sutures used to hold them, then the incisions for the broviac lines, the larger scars from her bowel resection, re inastimosis, transplant, and heart surgeries. I wouldn't even know where to begin. Underneath her clothes she bears the details of her story. Each scar a chapter that tells of a battle and then a victory. As she lay there so sweetly allowing us to do what was necessary Allie walked in and I said, "Would you like to meet the bravest girl I know?" She giggled and said, "May I touch her yet?(she has not been able to for almost two weeks now because of her rash). I watched as Allie lightly touched the top of Ash's hair and listened as she whispered, "You really are the bravest girl I know".

Now as I sit and reflect on those moments I realize that I know more than one brave little girl. In all actuality I know several of them. Some better than others, but all brave just the same. Not only do I know some of the bravest girls you will ever meet, but I know a few boys too. When your closet friends become those who live in the halls of the PICU you are face to face with the bravest people you will ever meet. The little people we have grown to love have taught me what it is like to be brave. They have taught me how to face adversity head on. They have taught me how to live life to the fullest. How not to take even one moment of my day for granted. I have heard them scream out in pain as they endured procedure after procedure only to finish the day with a smile on their face as their mommy's rock them to sleep. I have cried for them, prayed for them, and loved them. These little people are my heroes and their mommy's have become my heroes as well.

I don't know how they do it. Day after day. Night after night. We all have the same goal. Life. Time. Memories. Normalcy. I have said it before and I will say it again, the road of transplant is rough. It can be easier on some, harder for others, and over for many. In the end I think we would all still choose to travel it. Without it the time with our brave little ones would have ended much sooner. I know for Dave and I we have placed it in His hands and we wouldn't trade the days He has given Ashley Kate for all the world. I still wake each morning and thank the Father for her life, her donor, her organs, her smile, and her presence in our family.

Some days are easier than others. For the time being our days seem to have gotten a little easier than some we have had in the past, but for our friends it hasn't been such an easy day. They face the possibility of rejection, they will soon board a plane for Omaha, and they will wait for easier days to come again. Big sisters have said their good byes and the first hand knowledge I have of watching Blake and Al say good bye to Ash makes my heart ache for them tonight. Again I will ask for your prayers. Kylie really needs them as does her mommy and her siblings.
Our hope is that it won't be too long before they are all reunited back home in Louisiana.

Bravery isn't reserved for those who are old enough to handle it. It can be seen in the tiniest of people. In our house the bravest people don't happen to be the mom and dad. The bravest ones who reside here are hands down Ashley Kate, her big brother Blake, and her big sister Allie. They face this transplant journey with faith that puts mine to the test, strength that is un matchable, and a love for life that is inspiring.

Again I thank you for continuing to be here with us. Your thoughts, your prayers, your encouraging words are such a blessing to us. You are loved and appreciated.

Another day in the life of...

...transplant. For us and our dear friends. Our little friend is 6 months younger than Ash, but she can literally run circles around her. She is tiny and beautiful and just as precious as my Ashley Kate. This month we have been blessed to be the ones who got to stay at home. They on the other hand, who are also blessed, have been the ones in the hospital. If you would pray for them tonight I would greatly appreciate it. Rumors of returning to Nebraska so they will be "close to home" not theirs but the "transplant home" are being heard and discussed and I just hoped they would have been given some time in their own home. Oh, how I know the struggle of deciding when to go and when its safe to stay. My heart literally aches for my friend. She has older children just like me and the thought of being separated again for an indefinite amount of time is heartbreaking. Please, please pray for our friends.

In our home tonight the little transplant patient has rearranged her ostomy for the first time since being placed on coumidin. Can I just share with you that had you walked in and saw the amount of blood in our home this evening you probably would have called 911 thinking someone was dying. Nope, just a two year old who decided playing with that transplanted loop of bowel on her exterior would be a good idea. Blake and Allie were terrified! As for myself I took a deep breath and jumped right into the middle of it all. Before Ashley Kate's birth I was so scared of the sight of blood. A drop or two would make me drop to my knees. Now? No big deal. Some days are bloody and some days are not. Today was definitely bloody and a little scary as I wondered if her blood would ever clot. Thankfully it did and she has labs in the morning so we will see what her hemoglobin and hematicrit(sp?) levels are.

Ash is TIRED! She is fussy and exhausted. She remains awake out of sheer determination and her stubborn streak. She is trying to convince us that Blue is the way we should go tonight, but this mommy is tired too and I say, "No go". We finally got a feeding pump this afternoon but it doesn't want to work. Can you believe it? Dave is trying to make it work, but if he doesn't then the hourly bolus feedings will continue for the third night in a row. Like I said its just another day in the life of transplant, and I wouldn't trade it for anything. Ash is here. Ornery and adorable. I would rather wake up with the alarm every 30 minutes to feed this little pickle then to have no little pickle to feed. I'll take this over that any day. Life is good.

Our weekend trip

So fun! Ashley Kate had a wonderful weekend away(as did we all). We left out of here on Thursday evening to make the trip out to the ballpark for the Tarheels tourney over the weekend. We took our time getting there and just enjoyed relaxing. We slept in late on Friday morning, fixed some breakfast in the rv and then got back on the road to finish up the last hour of our trip. Friday evening we spent the night playing games, watching the must see movie RV (that is if you travel by rv), baking cookies(to keep up with Friday night tradition before a big game), and then allowed the crickets and night time noises to sing us to sleep. Then Saturday we headed into the ballpark at Big League Dreams and let the games begin. What great fun we all had.

Ash loves the ballpark. She claps, plays, naps, and visits with all of our friends. We take long walks around the fields, she giggles as she hears the bats hit the ball, she brings books and toys, and just enjoys the opportunity of being outdoors and getting to stay there for a long time. Between games she naps in the rv , watches an episode or two of Blue, and cools off before the beginning of the next. On Saturday the Tarheels lost the first game 4-2. They tied the second game 3-3 which caused them to have to play in the first round of elimination play that evening at 8pm. We were all a little afraid of being sent home early, but after a long game of overtime the boys ended up wining against the team they had tied earlier that day(funny how things work out) causing them to go home early and us to stay for the second game of play. Yeah! Tarheels. Blake made a couple of incredible plays from behind the plate and that made it even more fun to watch. Dave and I were blessed to meet a few of our blog readers who snuck over to the ballpark to watch Blake play. How fun it was to visit with people we had never met, but who had been praying for our Ashley all this time. We met their children and enjoyed sharing ours with them. The next day of play was just of fun as Saturdays. The Tarheels won their first game of the day 8-6 and then moved into the championship game. It proved to be a battle of the bats(which is exactly how the Tarheels like to play) and we won it 14-12 by holding the opposing team in the last inning. We were all on the edge of our seats and couldn't believe that our boys were walking away with another tournament win. To say that we were proud of them would be an understatement.

Ashley continues to look stronger than ever. She is growing and happy. Her feeding pump went out around noon on Saturday and since we were out of town with no way to have it replaced we had to begin bolus feedings every hour on the hour to make sure she stayed hydrated and got her calories in. What fun I had waking every 30minutes through the night to feed her. Lets just say that I'm a little tired. We are still waiting for the new one to arrive this afternoon so its been almost 50hours straight of 2 ounce bolus feeds. Fun, fun.

Allie has had picked up some kind of rash from one of her classmates at school and hasn't been allowed to be close to Ash for over a week. Her heart is sad and broken because she misses holding her, but she understands and doesn't want Ash to get it. It could cause Ashley Kate to be hospitalized for a very long time and we are all walking around on eggshells hoping it doesn't spread. Thats why you won't see any pics of the girls together over the weekend in the slide show.

Ashley loved playing Pass the Pigs with us at the table in the rv and as you will see in the pics after 5 rounds of rolling her pigs she feel asleep sitting up. It was the cutest thing ever. I happen to love the pic of Blake and Ash wrestling. The smile on her face was priceless as he placed her in a head lock. She gets no special treatment from him. He's still a big brother and picking on little sisters is his job. Ash loves him to pieces. We had the best time together and are looking forward to a new week full of opportunities for Ash to learn and grow. We are so happy to be together, to be home, and to be living life as normally as we can. Hope you all were blessed with a good weekend too. Take care. Trish

Away we go!

Its been one of those weeks. Long days. Long hours at the office. Busy schedules. We love it, but every now and then if we can sneak away a day or two early then away we go. Tonight were lucky enough to get to do just that.

The Tarheels are playing in a tournament at the Big League Dreams Park in Mansfield this weekend and we are so excited. Their first game on Saturday will be played at Fenway Park(the replica at least). Its going to be so fun!

Ash is buckled in and ready to go. We are ending one of her best weeks yet. Its been months and months since I could say that she has had a whole week of good. Each day she just looks stronger and stronger and we are counting our blessings. She is learning, she is growing, she is moving(a little, only 2 inches today, but still trying to move). We have learned to make the most of the good times and have truly taken that to heart when it comes to family time, weekends away, and the day to day.

So we will catch up with you guys tomorrow evening and hope that the end of your week and the beginning of your weekend is blessed. Enjoy the good that surrounds you. Love you guys. Trish

Encouraged

It might has well have been a mile. We couldn't have been more excited if it was. The four of us sitting around the baby gherkin in the middle of the floor as she encouraged our hearts. It really was the most encouraging thing we have seen happen in months and months.

Last night Ashley Kate moved. Our daughter, the one who refuses to roll over, refuses to crawl or creep or stand or walk. She moved! All by herself. Across the floor. 2 whole feet. It was INCREDIBLE! I have no idea how she figured out this mode of transportation and I don't care. It was amazing. She sat in the middle of her pallet and all of sudden decided she would like to go somewhere. So she began to scoot. I'm not sure I can really give you an accurate description of how she did it but I will try. She was sitting on her bottom. Her legs were stretched out in front of her. Her hands were leaning on the floor up next to her feet. She decided it was time to go and she went. She pushed with her hands(something she has never done before and we have been trying to teach for more than 2 years with no success), moved her legs in and out, and away she went. Backwards, but away she went. At first we were stunned. It took us a moment to comprehend that she had decided it was time to move. Once we figured out what she was doing it was time to celebrate. The smiles on our faces as we all sat around her encouraging and applauding her were huge. I promise you it was unconventional. Something she came up with all on her own. You have probably never seen another child move in this way, but thats ok. What encouraged our hearts was seeing that she had a desire to get somewhere and that she had the ability to do something about it.

I'm still trying to process it this morning. Ashley Kate has the ability to move. We always hoped that she would, but had never seen her do it. She's almost 3 years old and for the first time in her life I really feel like walking is going to be a possibility for our daughter. Not today, but someday. There are no words to describe how blessed we have been. I just thought I would share.

2 feet or 2 miles, makes no difference to me. She can do it and thats all I need to know. Thank you God for showing up in our home again. We are grateful. Trish

A lot of growing up

Lately there has been an awful lot of growing up around here. Along with this sudden urge to grow up has come an awful lot of discipline too. Unfortunately as young people try and find there way and figure out what is supposed to come next they sometimes make mistakes and as the mom its my job to correct and teach into those mistakes. Oh, my the tears that are flowing these days from the eyes of our 10 year old! Little corrections that she makes into huge drama just because she is 10 and she is growing up. Fortunately I have been able to use the last two incidents to teach mercy and grace to my beautiful Allie and have had the opportunity to see the growth and the beauty increase inside of her heart.

This morning another opportunity presented itself and the kiss on my cheek and the smile on her face are things I wouldn't have traded for anything. Sometimes the mistakes can be seen as blessings and can actually bring us closer. After coming out of the shower this morning Al suddenly realized she had left her backpack in grandma's car yesterday. Panic quickly set in as she realized her correction folder and her math assignment would both be counted late and points would be deducted. The tears began to flow and I simply said, "Its alright. You made a mistake and mom and dad aren't upset that your homework will be counted late."

"What?" she answered. "You mean I'm not going to be grounded this week?"

"No, you made a mistake and its going to be ok. Just have a good day and don't worry about it because we aren't worried about it."

"I just don't get it," she said. "Last week I was grounded for not getting my math done the night before and for not doing my corrections and this week I'm not?"

Dave jumped in and said, "Last week it was disobedience and this week it was a mistake. There's a difference. You chose to ignore being told to finish your homework and waited until we were walking out the door the next morning. This week you just forgot and thats ok. See the difference?"

With a lighter heart than when she sat down and with dried up tears she bounced up, kissed me on the cheek, gave us a little grin and with a shrug of her shoulders said, "I love you guys".

She left for school with a happy heart and in the end that is far more important than corrected assignments and math homework that is turned in on time. At least in our book it is. Allison Brooke is growing up before my eyes and the little girl I have loved is maturing into a young lady. Down came the pastel pink and yellow walls, the painted ceiling and its puffy clouds, the picket fence bed and flower garden gates and up has gone the deepest shade of purple, velvet, satin and lace bedding, a chandelier, and alarm clock. I cried tears of sadness and joy as I took down our little girls bedroom and put up our young lady's . She is a beautiful girl who still has lots and lots of growing up to do, but it has begun and my prayer is that her heart will reflect true beauty and when the time comes she will know how to grant mercy and grace to others.

Thankfully we have a baby gherkin is isn't complaining about the garden gates and picket fences in her bedroom. I think it has made the whole process a little easier on this mommy's heart.

A little Q and A

So many of you have asked me questions lately and I have yet to take the time to answer them. So this morning I have a few minutes and I thought I would try and answer the most commonly asked questions. In all honesty some of the questions that have been asked have not been answered because I have no idea how to answer them. When it comes to parenting questions and the like I feel really uncomfortable giving advice in that area. Each and every family is unique with its own unique circumstances and made up of unique individuals. What works for us may not work for you and it just feels kind of awkward trying to tell someone else how to raise their kids. From time to time I may share some of our personal experiences as I journal, but I hope that is not taken in the wrong way. I learned early on from one of our pastors to not criticize other people's children or how they raise them because you never know what your own are going to pull. Wise advice that Dave and I stick closely to. So here is my attempt to answer some of the easier question that have been asked lately.

1. The camera I use to take our photographs is the Digital Canon Rebel EOS. We bought it used on ebay from a photographer who had upgraded. It was an excellent buy and we have been very happy with it. Before this we used the exact same model only not digital. I use the Picasso program(which can be down loaded for free. just google it) to put soft focus or to crop our photos. Its so easy.

2. Yes, the majority of Ashley Kate's clothes are from Gymboree. For two reasons(not because I am an addict). Mainly for her comfort. Gymboree carries a huge line of stretchy, soft, comfortable clothes that can be mixed and matched in numerous ways causing me not to have to buy too many pieces to make up several outfits. Because of the location of Ashley's ileostomy and her g-j tube wearing any type of stiff fabric like denim or even some forms of cotton clothing very uncomfortable for her. She wears absolutely no waistbands that require buttoning, snapping or zipping. Since Ash doesn't stand and spends the majority of her time sitting a waistband can become extremely painful in a short period of time. This is my main reason for buying Gymboree. The second reason is Gymbucks. Its hard for me to pass up free money and when you receive Gymbucks, shop their sales racks and then hit the additional 25%off days its almost like getting her clothes for free. I love it! With Gymboree I know I'm getting great quality, fair prices, and cute looks for the gherkin.

3. No, I have never posted photos of our little yellow house. I'm not sure why I haven't. I have just never felt the need to. I don't mind showing you, I just haven't done it. The house is not "magical" as several of you have indicated. What is "magical" is what goes on inside of it. The people who live here and the way we live is as close to "magical" as I can make it. Not really "magical" just blessed. I have been accused of living a "Beaver Cleaver" life and that comment made me giggle. Life in this home is NOT perfect. It is normal. We have good times and bad, but we choose to concentrate on the good and thats what makes it so special. When you watch one of your children stare death in the face it changes your perspective on whats important. We only have a short time with these children and Dave and I intend on making it count. If we could hang out, vacation with, explore with, learn with, go to dinner with, or experience life with anyone in the world it would be Blake, Allie, and Ashley. The house itself is 60 years old with cracks in the walls, old wooden floors(which I happen to adore because I can hear the children running across them), not enough space, unplanted gardens(because I am waiting on the painter to finish the outside of the house rather than having the flowers trampled), no grass in the backyard(because we think playing basketball, kicking soccer balls, hitting baseballs, swinging, playing hide and seek, and jumping on the trampoline is far more important than "good" grass. We have our retirement to work on the grass once the kids are grown and no longer need the yard to play in), and faded siding. Put all of that together and its not that impressive, but it is LOVED and we are grateful for it and all that it represents in our lives. So once all the gardens are in, the girls furniture returns to their room, the painter leaves and I have the time I will happily post some pics for you guys.

4. Ashley's Amtryke is awesome, and it would be my hope that every single one of you with a special needs child would receive one. You can't buy them in stores. They are given as a gift to families who have children with a need for mobility or who have disabilities that could benefit from the therapy it provides. The pedals and the handles move together in a motion that works both the upper and lower body. For children like Ash who currently can't pedal themselves with either her hands or her feet there is and extension that allows us to push her along as we strap on her hands and feet. The beauty of the Amtryke is that it provides a normal activity for our children. What kid doesn't want to own and ride a bike? At the same time it is a wonderful physical therapy tool. I would encourage you to contact your local AMBUCS group and if you don't have one then let Dave and I know and we will do our best to get your child an Amtryke too.

5. We have been asked if Ashley's health will always be this fragile. The truth? yes. That is not an answer given out of a lack of faith in what God can do. It is just acknowledging that God created her the way that she is and that she happened to have a need for new organs. Organs that were not designed for her body, but for anothers. Because of this fact she will ALWAYS be on an immunosuppressant regime which will make her immune system weak in order for it not to attack the grafted organs. Can she continue to grow up and live a "normal"life? It is our hope, our prayer, and our desire that she achieve a relative state of "health" allowing her to do just that. Our hope is that Ash will have the same opportunities as our other children and we are determined to provide as many of them for her as is possible. Today? she looks great and she has 2 eyes showing! Her swelling has gotten better over the weekend and we are feeling encouraged. She is happy and silly and as ornery as ever and we pray it continues.

6. Does Ashley go anywhere? Yes. I don't take Ashley around large groups of people in doors anywhere. She has never been to Walmart, Target, the grocery store, or anything like that. We are very careful with where we take her and we try not to expose her to large germ pools. She does go outside. Anything that we are doing outdoors, or anywhere that we travel where we will be spending the majority of the time outside she goes with us, and she love it! We are SO blessed to have my mom and Dave's mom here in town with us. They are both available to sit with Ash if I need to run to the grocery store or to Target or to run errands around town. Without their help Ash would probably become sick more often because she would have to run with me to do the "necessary" things that moms and wives have to take care of. They have done a fabulous job of learning things like ostomy bag replacements, making feedings, pushing meds, and emergency care. I honestly don't know how we would manage without them.

7. The next questions are ones that I am constantly asked and have answered in detail many times before, but I don't mind. I won't go into detail again, but for those of you who are new to our journal or missed the answer then I will repeat the short version. Ash does not speak(she once did and the sound of her voice is truly the sweetest sound you have ever heard. Thankfully we have it on video.) , she does not eat (but we believe they both go hand in hand and once she acquires on of them the other will soon follow), she does not crawl, creep, pull up or walk. Yet. We believe she will some day.

8. What type of doctor is Dave? He is a chiropractor. We have been in practice here in Longview for 10 years and we are so blessed! He loves what he does. Our practice is centered on natural health care, healthy living, and Jesus. Its a great place to work, to visit, to be a part of. God has blessed us with some of the most amazing families who are like minded in their approach to life. If you are a part of our practice you become a part of our family. Dave loves his patients. He prays for them. He serves them. He gives them the tools to improve their daily lives. He leaves the house smiling, happy to go to work, and returns the same way. Smiling and happy to have had the opportunity to serve. Some day I would love to share the many things we now see that God had in place over the years through Dave's profession that have been vital in taking care of Ashley Kate and allowing us to be her parents. God is just good like that. He always has a plan.

I hope this wasn't too boring, but that it addressed some of the most commonly asked questions. If you stuck with me this far then I want to wish you a blessed day. Hope it goes well for you. Take care. Trish

This morning...

I woke after a long, long night of wrestling, jostling for position, and fighting for covers to a beautiful sight. Our girls, the ten year old beauty and the two year old miracle, lay fast asleep in my bed. Their hair was a mess, their eyes were shut tight to keep out the rays of sunshine peeking through the blinds, their jammies were twisted, and their covers were in a tangled pile at the foot of the bed. My heart was overwhelmed with love in the early morning hour. I fell (literally) out of the bed and neither of them moved a muscle. So I tiptoed into Blake's room to find a sight just a beautiful as the one I had left. Our son, now so tall that his feet hang of the end of his mattress, lay sleeping soundly unaware that I had entered to look for a pillow and blanket for myself. I watched him sleep for a moment thankful that he was here in our home and not in the place I found him in my dream the night before. Here he lay safe and sound. Still twelve years old. Still in the sixth grade. Still a child. All was well. Next I moved into the family room to wait until the house awoke for the day.

As Dave attended an out of town seminar this weekend I found myself here alone and not liking it very well. Sure I had plenty to keep me busy like painting and re painting the girls rooms, running the kids to this place and that, taking care of and playing with Ashley Kate, trips to Walmart and Home Depot, etc., etc., but life just wasn't as fun as it normally is. I missed him like crazy. I asked the kids if they thought Dad missed me and Ash as much when were in Omaha as we miss him when hes in Dallas and they both answered with a loud, "YES". I'm not sure if they are right or not, but I've said it before and I'll say it again, we are just better together.

The weekend went smoothly enough while he was gone, but I'm glad hes back home tonight. I'm glad he was here to tuck the children into bed and to pray with them. I'm glad he is here playing with Ashley Kate as he sneaks in her adjustment. I'm glad he is here to talk my ear off about all that he and the girls from the office learned this weekend. I'm glad he is here to hold my hand as I fall asleep tonight, and I'm glad God gave him to us. Glad God gave him to Blake to be his role model. Glad God gave him to Allie to be her hero. Glad God gave him to Ashley Kate to be her favorite play mate. Glad God gave him to me to be more than just my husband. I'm glad God made us friends.

The house is silly again tonight. Full of laughter. Full of nonsense. Full of their dad and my friend. It really is a great house to grow up in (especially since the head of it still hasn't). Life is good and it is blessed. Good night. Trish

It doesn't take much

I learned a lesson today. A big one. As I spent hours and hours painting the girls room I learned that it doesn't take much of the wrong to make the right not right. Make any sense? I know it doesn't to you, but in the land of paints it makes perfect sense. So what I figured out is that the wrong combination of dyes was used to mix the paint that I bought yesterday and now I have the wrong color room. I had hoped the light and my eyes were playing tricks on me. I continued hoping this hour after hour as I continued painting until finally I went and checked the top of the paint can that I was trying to match and saw that it only takes a little of the wrong thing to make what you thought was the right thing all wrong. So tomorrow I will start again making the wrong right again. To be completely honest I left it up all evening(snuck out to the ballpark) and came back hoping that the wrong would have grown on me enough so that I could convince myself it was right. It doesn't matter how much I try to tell myself it will work its still wrong and it needs to be made right.

So as I contemplated all of this paint mix up through out the day I began to see the lesson for me in all of this right and wrong. It made me think of my heart, my attitude, my life, and my actions. Its just as true in life as it is paint. It doesn't take too much of the wrong to make what you thought was right wrong. Wow. A little bit of wrong goes a long way doesn't it? Huge!

When your talking paint changing the wrong back to right isn't really that hard. Sure its going to take some extra work. An extra trip to the Home Depot and a few more hours on the ladder, but in the end you won't be able to tell that I wasted a whole day painting the girls walls the wrong color. However in life it isn't always that easy now is it? Sometimes it can take years to right the wrongs. It can take repentance, humility, soul searching, admittance, commitment, and prayer. Thankfully we serve a God who is rich in mercy and forgiveness. He can take my wrongs and the damage they may have done and make them right again.

Tomorrow I will start again and make my wrong paint right. God works that way too. His mercies are new every morning and no matter what my wrong may have messed up He is willing to give me another chance to make it right. Just a little life lesson I found inside the walls of my girls room today.

Its been a good day. Ash is happy. Smiley. Silly. Feeling good. I love days like this when my baby gherkin has nothing to do but play and play and play. No sticks. No pokes. No pain. Just a day at home to do all those things that 2 years olds should be doing. At this moment she is playing Jingle Bells on her mini piano(quite loudly) and dancing to the sounds of it. Something about the tune is cracking her up and her cracking up is causing me to also. I love this girl and this life. Hope your day was blessed and I hope it didn't include the wrong paint! Take care my friends. Trish

Her New Look

I thought I would share with you Ashley Kate's new look(since it doesn't seem to be changing). This picture was taken this afternoon and I think its a pretty good representation of the swelling that remains primarily on the left side of her face. Her right eye opens a little more than the left and she seems to be able to see much better from it than the other. You can see a larger pocket of swelling on the left side of the eye and also on the upper eyelid. Although both cheeks are quite "cheeky" (and always have been since she is on prednisone) the left one is definitely fuller than the right. Its a little hard to see in this picture but under her neck and underneath her chin is a pocket of swelling as well. Some times, usually in the mornings, the swelling is quite severe and she has pockets of fluid across her forehead that you can actually see and feel. By late afternoon they are gone and her left eyes begins to peek out from underneath the eyelid. Our main concern with all of the swelling is her neck. So far it has not affected her breathing and this seems to be the first question all of the doctors ask as they examine her. Ashley remains happy and active. The swelling does not seem to be bothering her except for the left eye. I can tell she is frustrated by not being able to open the left one up each morning and she rubs at it a lot.

When I look at Ash I just see Ash. She's still beautiful. Most days I tell myself that the swelling looks better and isn't that bad. Every now and then I hear the comments whispered by others, or I answer questions of people who wonder why her face is so large, but like I said most days I just keep telling myself that it isn't as bad as it has been. Perhaps were just adjusting to it.

On the days that she wakes and her left eye is visible then I know its going to be a good day. On the days when its not open at all she seems to be grumpy and struggles a little more, but eventually it opens and her attitude changes. I am still hoping the clots disappear and the whole issue goes away, but in comparison to some of the other challenges she has faced this one is actually kind of small. The danger is still there, but at least she is home and she is happy. She has the opportunity to swing in the backyard, to ride her amtryke, to hang out with Blake and Allie, and to be rocked to sleep by her daddy. When you look at it that way it doesn't seem to be such a big deal.

Ash is doing well despite the clot, the swelling, and the new central line. In my book we have lots to be thankful for and to give praise for. Thanks for checking on the pickle today. Hope all is well in your home tonight. Good night and Take care. Trish

Up to my ears...

...in laundry. Blake brought a bag a wet, smelly clothes back from camp along with a smile that stretched all the way across his face.

...in mud. I decided to move the edge of the flower beds which resulted in stomping around in the mud. I am now in desperate need of a pedicure!

...in water. The siding on the house needed to be washed. What a mess it turned out to be.

...in boxes. I started to prepare the girls room to be painted and had to pack everything away. Dave will be out of town this weekend and I have a project in mind.

...in toys. Ashley Kate must have played with every toy she owns this afternoon. You can't even walk through the family room.

...in bubbles. Allie decided she needed a bubble bath tonight. In the jacuzzi! She is now shiny clean and my bathroom is not.

...in family life. Things are busy, and crazy, and fun, and exhausting, and all that stuff. I am so happy to be home!

...in gratitude. I couldn't be more grateful for this life of ours. There is nothing about it that I don't love.

Blake and Allie are quietly sleeping. Ashley Kate is "growling and grunting" in her crib across the room. Hope is dreaming about the things puppies dream of. Dave is already snoring and its starting to get loud enough to distract me. I am winding down and making plans for what kind of things I can jump into tomorrow. Its been a good day at our little yellow house(which is now clean since I gave it a bath this afternoon). God has blessed us with more than we could have ever imagined and I am thankful. Ash and I are home, in our beds, surrounded by those we love. I'm going to rest well tonight. Hope you do to. Goodnight. Trish

Smothered

If you were given the opportunity to be smothered by something, anything in this world what would you want it to be? Money? Admiration? Chocolate?

Tonight I found my answer. Pickle Juice!

I sat in the family room and watched our youngest daughter smother her daddy's face in kisses. They were both so tickled at her actions. He was lying on the floor in front of her and he would say, "Ohhh, love daddy" and she would literally fall forward onto his face and smother him with all the love she could muster up. It was the cutest thing in the world. Sure his face was getting sticky, and sure he could barely breathe, but the smile on both of their faces was so amazing! If I know anything with absolute certainty in my life it is this; Ashley Kate LOVES her daddy!

Our appointments in Shreveport brought no clarity or answers. Just another set of appointments that are needing to be scheduled. I don't think the swelling is going to go away. From what I have learned her thrombosis is pretty much here to stay. It will probably continue to have better days than others and in time may improve a little, but ultimately the vascular surgeon said he can't tell me that her face and neck will ever be "normal" looking again. He would like to have another veino gram done to compare to the one that was done a few weeks ago. He would also like to have her central line removed as soon as possible. The only problem with that is the need to draw multiple labs a week. He saw that as ridiculous and wants everyone to agree to monthly lab checks for all of her levels across the board. His suggestion was to figure out a proper FK dose and proper coumidin dose and then pull out that line(easier said than done). Then he would like us to drive there once a month, have Ashley lightly sedated, and allow a femoral stick to draw the necessary blood work while she is sleeping. She would never know it had taken place and everyone could have as much blood as they would like without putting her at risk for more clots with this current central line and without taxing her little veins that are so difficult to access. This was his idea. Now getting everyone to agree with it may be a whole different story. I sat and listened and am now trying to process all that he had to say. Perhaps this would work? but to be honest I just don't know if it will. This whole vein/lad work/ blood clot/ swelling issue is a nightmare. There really are no easy answers. So nothing was really accomplished today. Ashley remains swollen indefinitely and my skin has too thicken up so that the comments that are whispered each time we go somewhere won't bother this mommy's heart.

Tonight I want to thank you for your prayers and for your continued time spent here. There are so many of you who continue to leave encouragement for us daily and it blesses my heart so very much to hear from you. Thank you for praying for us, for our transplant friends, for baby Lauren, and for the others we mention from time to time. God continues to hear our prayers and work in our lives daily. I'm just so thankful He brought each of you here. If you would pray for our little friend Kylie tonight and for her momma I would greatly appreciate it. Transplant life is hard, and bowel transplants have certainly earned a position as one of the most difficult transplant roads to walk. Each and every day can hold its own set of problems. Kylie's little tummy is hurting and so is her mommy's heart. Please pray for our precious friends tonight and know that you are being smothered in my gratitude for loving us and loving Him enough to love others. Good night my friends. Trish

Choices

Early on in our parenting Dave and I learned a valuable tool. We were taught about choices and how to parent the children with the ability to choose the outcome of their actions. What I thought I was being taught for use with my children has actually become a lesson in my own adult life.

As the children were younger and obedience seemed to be a harder concept to come by(you know those terrible twos, and threes, and sometimes fours?) we would give the children a choice. They knew that they could choose to do what mommy and daddy had asked or they could choose not too. Choosing to obey would bring joy to God's heart, to mommy and daddy's hearts, and to theirs. Choosing not to obey would bring about consequences. Consequences of their own choosing. They could choose joy or they could choose chastisement. It was placed in their hands. As we asked then to put away their toys, to hold on to our hands, to put on their shoes, etc, etc. we would follow it by saying, "Do you understand what mommy wants you to do?" Their response would then be, "yes, mommy". At that moment they acknowledged their understanding and they took the choice into their own hands. I would like to say that each and every time they did it right and chose obedience, but that would be a fairy tale wouldn't it? I can say that they were much happier toddlers, more obedient children, and have grown into amazing young people (who occasionally choose not to do what they have been asked the first time and still require parental chastisement).

Anyway, I say all of this to share with you that in those early years of parenting Dave and I learned to make choices as well. We learned that we have the power to choose how we will live our lives, how we will go about our days, how we will parent the children, how we will spend our time, how we will handle the rougher times in our lives. I think we have grown up through the years along with the children. As I think of our day to day over the past two years with Ash I see that we have been faced with some unthinkable choices, some unbearable days, some amazing miracles. I see that we wake up each day not knowing what it will hold for her or for our family and I see that we have chosen life. Chosen to live her life with joy, with happiness, with forgiveness, with faith, with fun, with friends, with family, with each other. I choose not to dwell on the harder times, on the unknowns, on the disabilities, on the struggles. I choose to celebrate the little things that are actually big things for her. Things like learning how to point to her nose. We are SO proud of her! It took her a whole week of trying every day, multiple times, over and over and over again, but she has learned it. Now I'm trying to choose what comes next. The eyes or the mouth?

Yesterday Dave came home for lunch and told me his new goal this week was to choose to walk in the door after a day at the office with more energy than he left with that morning. I can't tell you how that made me smile. Last night we took the girls on a bike ride/walk to the park. We spent the first 2 hours he was home enjoying time with our girls. He and Allie rode their bikes while Ash and I walked behind them. Ashley Kate cooed and giggled the whole time. Allison Brooke talked her our ears off as she showed us all the tricks she could do on her new bike. Dave and smiled as we tucked them to bed last night knowing we had made the right choice.

Today I am choosing to not worry about what will be said in Ash's appointments. I see that her left can't open up because of the swelling and I know that something is wrong, but I am choosing not to let it worry me. We will travel to Shreveport, make a plan, and let God work it out for her. I am choosing to trust today and that's what I can do. Nothing else is within my power so for today that's my choice. Your prayers for Ash and her blood clot issues would be greatly appreciated.

P.S. I wanted to say thank you to a couple of people for the things they have done for Ash. Joyce, she loves the food! The Velcro has proved to be great for building her strength. She loves to separate the pieces into two halves(and throw them at us). We have had many hours of fun play. Thank you! Melissa, the fabric choice on her blanket was perfect! It makes me smile every day. Thank you for taking the time to make it.

Her Breath...

...blew across my face in the early morning hours and woke me from my sleep. I opened my eyes and watched her breathe in and out. It was one of the most amazing moments of my life. She was so close to me that I actually felt each little push of air as she exhaled and her breath was effortless, and cool, and sweet. Never in my life have I been awakened by something as precious. I kicked at Dave under the covers and as he fought to keep his eyes slammed shut I told him I could feel her breathe across my face. He smiled, eyes still closed, and said "uh-huh". I closed my eyes tight too and concentrated on how amazing the moment was and I fought to stay in that bed for as long as I could. I hope that I never forget the way it felt and I pray that I never cease to be grateful that she has air in her lungs and the ability to breathe it.

She has had a great weekend. We spent it at the ballpark in Nacodoches watching her big brother play his heart out. Dave and I had the privilege of watching our son play one of his strongest games ever and oh how it blessed our hearts. He really did an amazing job. On top of the baseball our family had 3 great days of memory making opportunity and we enjoyed every minute of them. We laughed, we played, we ate, we hung out, and we just loved it! We have been so blessed! Ash looks stronger than she has in months. Her face continues to be swollen and I'm not too sure that it will ever return to its "normal" size. Despite her changed appearance she continues to melt our hearts and bring laughter to our home. She is a happy pickle and I wouldn't trade that for anything.

We did manage to get an appointment with both the pediatric surgeon and the vascular surgeon for Tuesday of this week. I'm not sure that anything can be done for her, but they want to follow her through the course of her blood clot issues. We were supposed to have a vascular ultra sound last week to check on the size and position of the clot, but it was not done and they don't know if they want to do one now. I'm a little confused as to how we can keep track of the clot without one, but I'm trusting that they may know something that I don't yet know. She has been on the coumidin for close to a month now and originally I was told she would need it for about 3 months. The sooner she comes off of this medication the better as far as I'm concerned. It is so dangerous!

Well, its been a busy weekend and we are looking forward to another busy week. Blake leaves tomorrow morning with his class for a 3 day get away to Pine Cove. Allie has decided to purchase a new bike with her birthday money she has been holding on to, and tomorrow is the big day. I am hoping to get the flower beds planted. Dave will be attending a conference in the Dallas area toward the end of the week. Ashley Kate has her appointments in Shreveport and then has a full week of learning, playing, and growing ahead of her.

We are so grateful for the "normalcy" of the days we have at home. They are so sweet and so full of life. As I wake each day I am reminded of why we miss this little yellow house so much when we are away. Its a great place to grow up and I'm so glad Dave and I are getting to do just that with our Blake, our Allison, and our Ashley.

Hope your weekends were blessed. Take care and I'll talk to you all tomorrow. Trish

ARE YOU KIDDING ME?

Here is our sweet Ashley Kate. Her eyes have finally opened up a little more and as you can tell they are still squinty. All I can say to those who have been offended is this, "ARE YOU KIDDING ME?"

Dave and I would welcome ANY child, from ANY country, of ANY race into our family. Our hearts were and are very soft toward the children of China and originally thought that is where our daughter would be born. In this case God had other plans for us and gave us Ashley Kate who was born here in Texas.

We are the LAST people in the world who could be accused of being racists or insensitive. If we offended our Chinese readers we are deeply sorry, but in NO WAY were our comments racist.

No matter what happens in this journey whether we are having good days or bad days there are always a few people compared to the hundreds of loving, compassionate, and sincere who want to attack us, criticize us, or say a loud " HA, HA, you get what you deserve" to us. I guess you can go ahead and try to tear us up , but the joy that comes from loving this child will NEVER be taken away by those words.

We are happy people. Thats it. Plain and Simple and we have been taught to be grateful for every moment of this life. Thanks for loving Ash and checking on her today. Have a blessed weekend. Trish

Live Life!!

I had the wonderful opportunity to speak to about 24 people I have never met today. At lunch I spoke to a group of 12 Realtors about stress and what impact it has on ones health and after work I spoke about sleep at a weight loss center. A year ago I would have been absolutely terrified to do public speaking and now I will do it anywhere at anytime. What caused such a change in me. It was the lessons I learned from a teeny tiny little pickle named Ashley.

I would have never guessed that God would use my own daughter to teach me so many valuable life lessons. That little girl has taught me so much about what is and what is not important in life. As I was wrapping up one of my lectures this evening I said some words that I have learned through Ashley's Story. It sounded so simple to me but had a profound effect on one particular lady in the room. She asked me to repeat it and when I did I noticed she was writing it down. At the end of the lecture she came to me and showed me what was written just to make sure she had taken it down correctly. She asked if it was my original quote and I chuckled and told her it was. It made me laugh that something a tiny little girl taught me was making such an impact and the nice little older lady.

"If you are going to be alive, you might as well live"

A few weeks back when Ash was "stuck" in the hospital and Trish and I began talking about the need to get her out and back in our home these words were something we began to consider. Ashley is alive and thus we decided it was time to let her live. Live Life, not just be alive in a hospital room. And living she is. She is home. She is with the ones she loves. She doesn't even know her life is any different than normal. She doesn't know that not all kids have tubes coming out of them. She doesn't even know that she should be eating. She doesn't know she should be walking and talking, she just lives life and does it with a joy that so many never discover. Tonight I want to encourage each of you to live life. Don't just walk around being alive, start living. Live for fun, laugh more, love more, call up an old friend, send someone a just thinking of you card, give someone a hug just because, tell your spouse, your pastor, your co-workers or your boss how much you appreciate them, do something you love but haven't done in a long time, honor and praise God with all that is in you. The littlest pickle has taught me one of the biggest lessons of my life and for whatever time I have left, I plan on living.

Goodnight,

DAVE

No new photos

I'm sure you have probably noticed the shortage in Ashley Kate photographs that have been or shall I say not been posted lately. I am struggling with her appearance this week. She just doesn't look like herself. We had hoped and had been told to expect her facial swelling to start to disappear within a week or so of treatment for her blood clot issue, but that has not been the case. To be quite honest she looks awful! Her entire face is puffy and swollen, but the left side continues to cause us much concern. It has bad days and then it has worse days. Today has been one of the worse days. She woke up with the left eye swollen shut once again and has struggled with a very heavy upper eye lid that keeps her from opening her eye. She looks miserable.

I have been trying and trying to get a follow up vascular ultra sound scheduled. Our discharge orders requested one at 2 weeks, 1 month, and again at 2 months then a re-evaluation of her condition would be made a we would decide to continue coumidin or not. When I say I have been trying that is all that has happened. For some reason this is proving to be difficult and with her lack of improvement in the swelling department is is even more difficult as I wonder if the clot is getting bigger instead of smaller. Today's attempts at scheduling this appointment just reduced me to tears. I don't know why. Maybe it was because the pediatric surgeon I was told to follow up with wouldn't see her. Maybe it was because I was told he was sending her to a vascular surgeon. Maybe it was because he doesn't want to give the referral to the doctor he wants her to see before he will see her. Maybe it was because they aren't even sure if this new vascular doctor will even accept her as a patient? Maybe it was because I am going to have to try and get her pediatrician to make a referral to a doctor he doesn't need her to see and has no idea that she needs to see. Maybe its because this new doctor is in yet another hospital making that 8 that she will have been seen in during her 2 years of life. Maybe it was because I just wanted to scream out, "Enough already! Let her be a little girl!" How dare me, right? Maybe I am just tired of the run around and the fight and I am just wishing that getting to this doctor and that doctor could be "easier done than said" rather than "easier said than done".

Why I shared all that is beyond me, but it came tumbling out. I guess because I wanted to explain why I'm not posting pictures this week. Honestly our sweet Ashley's face is frightening. Her eyes are puffy and squinty. Dave thinks that once she does begin talking she will speak Chinese because she spends the majority of her life looking through squinted eyes. That makes me giggle. Can you just imagine waiting for her to speak for this long and then she does and we don't have a clue what she is saying to us? Her cheeks are huge! It looks as though she is storing nuts for the winter. There is no bridge to her nose. Its just huge. It's really hard for me to see the expressions on people's faces when they see her. I know they are wondering what in the world we are feeding this child. The answer? Nothing. She doesn't eat.

Some days I wish there was a way I could hang a sign around our necks explaining to the world what this child has lived through and what a miracle she is. Perhaps it would keep them from staring? Perhaps not.

Anyway, she is still beautiful its just not the same beauty you are used to seeing and so for now I'm not sharing her photographs. The whole blood clot, swelling, lack of much needed appointments on our schedule is weighing heavy on my heart and I don't really know what else to do. I just pray that somehow it will all work out and she will be ok.

Edited: I'm laughing through my tears as Dave just walked in and having no idea what I typed in this post said to me as he leaned over in Ashley Kate's crib," We have the best of both worlds. You originally wanted to adopt a baby girl from China and I wanted to adopt locally. Look what we got!" He then proceeded to do a traditional Chinese bow into the crib and officially kiss "Miss Ashley Ming Li Adams" good night. I love this guy and I love what God has done in the life of our family.

Several of you have asked what the address of Nate and Tricia's blog is. The blog I mentioned this morning is cfhusband.blogspot.com. Tricia is in surgery now and will most likely be there through the night. Please remember them in your prayers. As always there are two sides in transplant life. The recipient and the donor. In order for Tricia to receive her new lungs and new life another life has ended today. Bitter and sweet all at the same time.

Time

Before creating Ashley's Journal I had no idea what a blog was. I had never seen one, read one, or heard of one. Since the creation of Ash's and the telling of her story I have become a follower of a few that I hold dear to my heart. Most of them tell stories from other mommy's perspectives and are filled with the day to day care, celebration, and struggle of their children's fragile lives. What encouragement I have found on particularly difficult days of Ashley's life by reading the hearts of these other mothers. There is one blog however that is written by a husband and it contains the story of not only his wife but of his micro preemie daughter. What an amazing journey God is taking them on and what an encouragement it is to see the way they are walking it. This morning they received "the call". That is the call for the donated lungs that his wife must receive in order to be granted more time. I'm praying this is the last call they will need to receive and that the lungs will be the ones God set aside specifically for Tricia.

Time. It is the most precious thing we have. When you have faced the day knowing that your loved one's time is running out and when you have held the tiny body of your child next to you night after night knowing this could be the last one you are given with her then time becomes all you have. I wake each morning and thank God for another day with Ashley Kate. I thank Him for giving us more time. I spend each moment of the day looking at her face and realizing that our time with her is a gift. A gift not to be wasted but to be lived. Without our "call" she would be gone by now and our time with our youngest daughter would have ended. I can't imagine life without this ornery pickle in it. She has grabbed on to it and hasn't let go and we are so very, very thankful. Thankful for our call, for her gift, for the time we have been given to love her.

If you have never considered organ donation then I ask you to please, please consider the gift you would be giving. Time is precious and to those of us who have stared the clock in the face as our children desperately hung on we know that without the gift of organ donation our time with them would have ended. April is organ donation month and I love knowing that the gift of time and a new life is being concentrated on just as new life is budding all around us. I step into the yard and see the new grass, the bright green leaves appearing, the robin's hastily building their nests and I am aware that the time we are given on this earth is a gift. Soak it in. Each moment of the day. Find joy in the little things that surround you.

Nate, Tricia, and Gwenyth, I pray today is the day your new life begins and your time together is extended. God bless you guys today. Trish

Moving Day

Sort of... at least for Ashley Kate. It was in fact moving day and we have just finished rearranging the furniture in our room so that we could move our baby gherkin's crib from her nursery into our room. After spending the last week bending over into her portable crib my back has had it and so has my energy level. The crib re-location was very, very necessary. On top of that, we need space. Open floor space to work with Ash as we try and try to encourage her to move. The only space we could come up with in our little yellow house was the nursery and with the crib inside of it there is none. So now we will have a really adorable therapy room complete with comfortable rug(since all of the floors in our rooms are hardwoods) to get down to business. Tomorrow morning I will be moving her therapy mat, ball, gait trainer, and amtryke into the nursery space. Currently each one of those things reside in a different room inside our little home because we have NO extra space to store them.

We actually considered moving the family this spring and were all on board and ready to go, but when Ash became sick again our finances took another turn in that direction and we have decided to wait a little longer. We hope to have a long stretch of "health" and time at home in order to rebound enough to take on a higher house payment that will afford us the extra space we desperately are in need of. None of us are too upset about the change in plans. We love our little house and hate to even think of moving some day, but life is very different for us now then it was when we bought it and along with the changes in our family we will eventually have to make a change in our home. I just know that God knows our need for more space and tonight I rest in knowing that He also knows what is best for us. The actual moving day will come when it is supposed to come so for now I will just keep rearranging to meet Ash's needs.

As we finished assembling her crib Dave looked up and said while fighting a grin, "I can't believe we have a 2 and 1/2 year old sleeping in our room." I just smiled and replied, "soon it will be a 3 year old and then a 4 year old and probably a 5 year old." Our "rules" just don't apply to Ashley Kate. Things might be different, actually I know they would, if she didn't have a central line she pulls at, an ostomy bag she removes so that she might "finger paint" with her own blood, a g tube she likes to pull out, etc., etc., etc. Perhaps the day will come when she will be free from all the "extras" and allowing her to cry it out as she fights sleep wouldn't be quite as dangerous as it is now. Until then, (especially while she is on coumidin) when she isn't sleeping neither are mom and dad, and she has the privelage of residing in our bedroom(something Blake and Allison were never allowed to do).


Anyway, I'm tired. Ash and I hung out until 4a.m this morning. Neither of us had a nap today and we are ready to sleep. I am refusing to put Blue on and she is refusing to lay down and sleep without a fight. As long as she is allowed to lay between us in our bed and pull our hair, our eyelashes, our lips, and anything else she can get a hold of then life is good for her. We can't help but smile about it because we wouldn't want it any other way. She is ornery and adorable and she's here. We may be tired, but we are grateful.

I wanted to let you know that I was made aware of a website that has been created to keep people updated about baby Lauren. www.caringbridge.org/visit/laurenwentz is the address. I know what an encouragement it has been to us to here that so many are praying for Ash so I would encourage you to leave this family a quick note to let them know your are praying for their baby. Thank you so much for loving others the way that you do. I was so blessed to here that so many of you had begun to pray for this baby. I have no idea what God will do, but I know that He loves baby Lauren as much as He loves my Ashley Kate. That is one thing that I do know.

Sincere Request

This morning I sat down to write to you the story of our night with little miss Ashley Kate, but my thoughts and my heart have been directed and focused on a request I found in our guest book. Now I am reaching out to each one of you who have so faithfully prayed our sweet Ashley through the roughest moments of her life.

There is a 4 month old baby girl named Lauren fighting for her life this very moment. Not the result of a broken body, a transplanted organ, or a birth defect. The result of a severe beating by her babysitter. Her mother is a transplant nurse in Omaha on the adult floor. I share all of this with you because I trust you and the one who shared with me is reaching out trusting you to join us in prayer. I know that the little girl is on the ventilator and that is all I know. I can't promise you that I can keep you updated on her condition because I personally do not know the family, but I can promise you that God is listening and He cares what has happened to this child. If you would pray it could result in miracles. Just look at our Ashley.

I do not understand this. I do not know that God will heal this baby. I do not know what to say to this mother who stands next to her child willing her to breathe. I have no answers, but I know this child is loved. By her mommy and by her Creator and my heart breaks for Lauren this morning as I hold my very own miracle.

I trust you will pray. I know you will. Thank you for being the support that you are to us and to those who you may never know. God bless you. Trish