Tantrums

Oh...My...Goodness!

Last night Ashley Kate met with a new therapist. The therapist was wonderful! As was Ashley Kate while relating to her. Dave and I are SO excited about this! We see so much potential just waiting to come out. She is fluent in ASL and taught us so much in just our initial session last night with Ash. She works with our physical therapist who happens to be the owner of Kids First Therapy here in Longview. Anyway, if you need the best PT in east Tx let me know and I'll hook you up.

But...thats, not what this story is about. This little post is about what happened at the end of our session with our sweet, sweet baby girl.

So, Ash spent much of the last half of her therapy session looking through and really enjoying the PECS book that was introduced last night. Remember me sharing about that a while back? The whole using pictures to communicate with others who may not know or be familiar with sign? Ashley LOVED the book that was brought. Problem being it was just an example of what is to come later. It wasn't hers to keep. Unfortunately for our sweet girl she's never played with anything that wasn't hers to keep, therefore, we have never taken something from her and told her that "no, she can't play with it anymore." Do you see where I'm headed? It was the funniest yet saddest thing I've ever seen happen. Honestly, it was all I could do not to laugh hysterically at my daughter's tantrum, but I needed to behave as an adult and as a parent and try to gain control of the situation. Notice I said "try".

Ash lost it. I mean totally and completely lost it! At the beginning of our session(remember it was the first one) her therapist asked Dave and I if Ash acted out. Huh? Of course not. She doesn't was my reply. At least, she never had before(except for the one time she just had to have that Signing Time DVD that I wasn't going to purchase 3 weeks before Christmas. Trust me that was nothing). "Does she bang her head on the floor or hit or bite or throw tantrums when she can't communicate what she wants. I mean, its normal behavior for children who can't speak." Uh, no was my answer. Of course she doesn't. She's pretty happy most of the time unless she's hurting. "Well, does she get angry when you tell her no?" My answer? I've never really told her no, so I guess not.

Boy or boy would those words turn around and bite me in the you know what in just a matter of an hour. I have never told Ash no. I have never seen her really not understand why she couldn't have what she wanted. I have never seen a tantrum like the one my princess threw last night. NEVER. I mean it when I say NEVER.

It was awful. It really and truly was. Dave eventually walked out of the room. Allie was demanding we just give her the book. She didn't understand why we were doing that to her. Blake? Thank God he wasn't home from church yet. I KNOW he would have been ANGRY with me for allowing this to "happen" to Ash. I sat there stunned trying to explain and sign to Ashley that the book didn't belong to her, but that she could read one of her own books. Our therapist explained and signed to her that it was her book and that she could look at it next week. Nothing was working. NOTHING. Ashley screamed, and hit, and banged her head, and scooted herself as close to the book as she could (that was now hidden behind the therapist). She signed please, then thank you, then please, then cry, then sad, then please, then thank you convinced we would hand her the book if she was just polite enough. Then she looked at me and signed for me to be sorry and to give her the book. She threw every single book of hers that I tried to hand her. I honestly did not know what to do. It broke my heart, but yet one little part of my heart was thrilled to see it happening. I'm not sure if you can understand that last sentence or not. You see our Ashley has been labeled as being around 6months old. No matter how intelligent she is since she can't(or refuses to) stack a series of 3 and then 6 blocks she just can't "advance" any higher on the evaluation forms. Its so frustrating for us as her parents. Ashley is so smart. She is always thinking. Always learning. Always proving "them" wrong. Maybe not in front of them, but every single day in her home she blows us away with her intelligence and desire to learn. So when she pulled out all the stops to get what she wanted it wasn't that she was just being spoiled or behaving like a brat. It was that she was being 3 (not 6 months) and that she was using everything she knew to use to achieve a goal. Her goal.

Now, in the end she lost, but the process was amazing to watch. In some weird sense. It just was. My sweet baby lay in her crib sleeping looking more and more like a little girl to me last night and all I could do was shake my head back and forth and share with Dave that I was blown away. Never again will I say that my daughter doesn't act up. If a therapist asks me if she acts out I'll pause a moment or two, allow a smile to creep across my face, and then nod my head yes. Yes, she can, and she might. Lets just wait and see.

I might even feel the tiniest sense of pride well up in my heart because you see, I've been on the longest journey of my life with this child of mine and its been bitter at times and then its become sweet only to return to the bitter. Last night was just sweet. It was oh so sweet and I'm grateful for it and maybe even a little bit proud. I hope you can understand that and I have a feeling that most of you will.

Enjoy your weekends. Were off to the ballpark in just a few hours and will return sometime on Sunday. If our boys do what their capable of it'll be a long one. If not then I'm sure it will be a learning experience and packed full of memories we can hang on to for a long, long time. Take care my friends. God bless. Trish

"She smiles everyday"

That's what her daddy said to me today at lunch. "Do you realize that she smiles everyday now?"

Its amazing. Honestly and truly amazing. We both were afraid, very afraid, that she had lost her joy, her happiness, her radiance for life forever. It was such an ugly time for us as we watched her deteriorate into a shell of unhappiness and discomfort. My heart hurt so bad over the loss of her smile that I didn't know how to describe it. The only person who truly understood what it felt like was Dave and between the two of us there was no need to even talk about it. I just remember lying in bed each night in the stillness once she had finally fallen asleep and wishing so badly for her good days to return. I cried most nights. I didn't know what else to do.

But now...things are different. She wakes up smiling. She stays smiling all day long. She lays down smiling and falls asleep with that smile on her face. Her eyes twinkle with all things ornery as she keeps us hopping all day long. I love that look in her eyes. I love knowing that she's dreaming up ways to keep me guessing as to what it is she's thinking of doing next. I love everything about this child.

We lost a lot of time with Ash over the last 8 months. Time that we can never get back, but she's making up for lost time. Just this weekend she threw out 3 new signs and has been using them daily ever since. One of them I had given up on just resigning myself to the fact that her stubborn streak was going to prevail and that she would never learn to be polite. She surprised me though giving me a renewed sense of hope that yes, I can teach this little lady to in fact behave like one. The sign "please" (even though she gets confused and mixes it up with "sorry") has brought me much encouragement in this area. She revealed to us that she knows the signs for bath, sorry, and please and that she can use them in context. Its absolutely adorable. She looks at the bathroom, signs the word "bath" and then promptly follows it up with the sign for "cry". It cracks me up! When her g-button is bothering her or a dressing needs changed she signs the word "hurt" to be followed with the sign "sorry". I've always talked her through her dressing changes and told her how sorry I was that it was hurting. So to see her sign "sorry" while the tears roll down her cheeks is actually a blessing. She is so bright and is learning from the things in her environment every single day. The sign "please" usually comes about when she is being too lazy to stretch, reach, or scoot close enough to a toy to retrieve it herself. She also uses it when asking to watch TV. Not even Blake can deny her this request and promptly gives up the ballgame to Wonder Pets or Blues Clues.

Life is amazing at our house. To watch our little girl smile each day is more than I thought we would ever see again. God is so good and its just so fun to be her mom and dad. We can't help ourselves. We're smiling a lot too these days.

Packing it Up

In order to make sure we didn't forget to pack the most important things in our little yellow house Dave and I got started this past weekend. We packed the littlest one first and the older two are to follow this evening.


Ashley Kate knew what was coming and she could hardly wait...


Once she was appropriately packed she...





nestled her little bottom into place and located her toes.




Then she grabbed hold of the sides and held on...


tightly as she waited for the fun to begin! We gave her one last run across the floors of our house.

At the end of the ride we closed the top of the box and tapped it shut. See you guys next week when my box arrives at the new house.

The reality of this whole moving situation began to settle in this weekend when I brought the mail into the house and discovered items addressed to our buyers at what will soon be their address and not ours. Ouch! That was both encouraging and disheartening all at the same time. I mean, I think thats a pretty good sign that they won't be backing out of the sale in this last week, but it also made me realize that its really happening. In just one short week this will no longer be our home, but someone else's. Its all so emotional for me.

I have packed something in almost every room in the house except for the family room. I just can't do it. Not yet anyway. I like sitting in there each evening with a candle burning on the mantle and pictures of our children hanging on the walls. Its comforting to me while the rest of the house is literally wall to wall moving boxes. Dave walks in each evening and another little piece of our home is sealed up in a card board box. Our bathroom retreat no longer has baskets of soft towels and candles lining the shelves. Instead its empty. The dining room table no longer has a place setting ready and waiting for each member of our family. Instead it sits there completely cleared of all evidence that dinner will be served. The nursery is losing its sweetness piece by piece as I fold quilts, pack baskets, put away toys all into those ugly cardboard boxes. In some ways an excitement is building as I imagine what it will feel like to recreate those places in our new home and in others its just sad to my heart.

I'm sure its going to be a long and emotional week for us. Once we make it through this week then the fun of remodeling, painting, decorating, and "make a wishing" will begin at the new house. That should keep me occupied for a while. Our closing day is just a week away, then we have a week to prepare the new house for Ashley Kate's needs before we move our little family over to the other side of town and just around the block from Blake's new school. Life is really busy these days and we are thanking God that our Ashley is feeling stronger and stronger each day. What a blessing it is to have a happy, "healthy" toddler to make this move with. God is good to us. So good that it blows my mind when I consider all that He has done and is doing in her life. Wow!

Hope your week is blessed and full of joy. I'll check in as often as I can with this silly computer. Only 8 more days until we have reliable service again. Yeah!!! God bless. Trish

Full Steam Ahead

Ash's Make a Wish interview went really well. She was in the silliest mood. As they walked up the drive she sat on my hip and waved hysterically like she'd known them her whole life. I giggle at this little girl who is so, so different from the one we've had over the last 8 months. She is a mess! An absolute joy to have in my arms. The interviewers came with a gift for Ash and that always makes me nervous. Ash LOVES presents(kind of like her mom!) but its not so much whats inside the gift that she gets excited about. Its the package the gift arrives in that makes her smile. Most new toys(unless its a book) she is very, very unsure of and really kind of afraid of. It takes are really long time to adjust to knew toys and so when a gift arrives that is hand delivered by the one who chose it for her and is excited to see what she thinks then I start to get nervous. As expected Ash giggled and played for most of the interview with the tissue paper. It made her SO happy. Then when we finally pulled the doll out of the package she freaked out. I'm mean really freaked. Covered her eyes and shook her head "no,no, no" like it was going to get her or something. I tried to explain as best I could that it would take her a few days or weeks to adjust to the doll, but that eventually she would love it. They giggled at her and just kept on visiting with us as I filled out paperwork.

They loved our "wish" and are going to do what they can to make it happen for Ash. We gave them a start date of July5(giving me 5 days to have floors laid and boxes unpacked) and they would LOVE to have it completed in time for her 4th birthday celebration which will be held on August 7th. All of our families will be in town to celebrate and they want to throw her Make a Wish party at that time too. So needless to say our new home will be bustling with activity in just a matter of days if all things come together like hoped. I'm not sure and neither were they if they can actually do what we had in mind, but what they can't accomplish then I know her daddy will. Either way it is such a HUGE blessing and such a humbling experience to meet this group of amazing people who love children like they do. I feel so blessed that they would choose to do this for our Ashley.

The whole moving thing is proving to be so stressful! I'm afraid to pack up the house until the last minute just in case things fall through. I mean, how sad would I be to have an empty house and no where to go? The thought of leaving the house empty as we sit in it each night isn't very appealing to me either. On the other hand we have less than two weeks to be ready to go and the days are slipping away from me. I really don't know what to do. Pack or don't pack? There are so many phone calls back and forth between all parties involved that it scares me to pick up the phone. It seems like every day someone calls needing a check to pay for something. UGH! I just like to write checks for things like flooring or new paint or fun stuff like that. I wish all the other stuff would just end already so I could get on with the good stuff. Oh, well I guess this is the process or say they tell me.

Blake is leaving us for Arkansas tonight. My sister is arriving tonight as well. Then my niece will be going home tomorrow. Allie's trying to convince us to let her go too, but I'm not ready to have an empty house. Who knows when I could get her back? I miss them too much when their gone. Dave will be home in 3 hours and I KNOW he's ready for a slow, relaxing weekend. Its been one crazy week for us. Life is moving full steam ahead and if your not ready to jump on board your going to get left behind. At least in our corner of the world thats the way it all works. Anyway, I'm looking forward to seeing him walk up the drive so we can sit and chat. I sure miss him while he's working all day.

Hope you week was a good one. Ash continues to do well. She's struggling with a really messed up g-tube right now, but other than that and the issues it causes in skin break down she's happy and as ornery as ever. I like her that way. Talk to you guys soon. It sure will be nice when we do finally move and have reliable internet service again. Then I can visit with you as often as I'd like. Take care my friends. Thanks for checking in with us. God bless. Trish

Her Wish

Several months ago I mentioned that Ashley Kate had been approved by the Make a Wish foundation to have a wish granted. I struggled with the thought of what that meant. I mean, technically the guidelines state that the child has to be interviewed and that it is their wish not to be influenced by the parents. So...in the case of our Ashley just exactly how does that work? To be honest I never dreamed she would be eligible because she can't be interviewed to express to them what her wish might be. Imagine my surprise the day I answered the phone and they announced to us that they would like to grant a wish to our Ashley.

Like I said, that was several, several months ago. As you all know Ash has not been well for quite a while. The whole wish granting process was put on the back burner and almost forgotten about until recently. When we realized that Ash's quality of life was quickly and drastically changing once we stopped giving the drug Rapamune Dave and I caught the twinkle from her eye and contacted our wish granter.

Tonight is the night of our "interview". They are coming over to meet our smiley baby girl. I was told last night that we will have 4 interviewers/wish granters. I was also told that they all have followed or are familiar with Ashley's story. That can sometimes be a little bit weird. I often meet people around town who "know" me much better than I know them and it brings a feeling of enormous gratitude across my heart to think that they would take the time out of their days to read about ours. So weird, but incredible all at the same time.

Anyway, we think we have come up with a form of a wish for our Ashley. I have tried to incorporate things that I think might come tumbling out of her if she could speak to share with them all that she loves. Who knows, she might even sign to them some of the things tonight if she's feeling especially cooperative(those last two words cracked myself up. When has she EVER felt that way? Oh, well. I can hope can't I?)

So when dreaming of a wish for our Ashley I started with a list of things that I know she loves. Things like stars, apple trees, books, swings, music, etc. Then I took this list and dreamed about it. I read through several definitions of what a wish is and the one I loved the most was from Disney. "A dream is a wish your heart makes. So with that in mind we will present Ash's "wish" tonight and see if it can be transformed into something tangible.

From speaking with our wish granter briefly over the phone I think everyone is excited about her wish. I have no experience with the Make a Wish foundation and have no idea how it all really works, but from what I have read they are incredible people with huge hearts who love to put smiles on the faces of critically and chronically ill children. How could you not fall in love with people like that? I'm excited about the opportunity to meet them.

I'll let you know how it all comes together. I'm sure the details and the taking of the wish and making into something tangible for Ash are going to be fun and exciting. Just think if our Ashley had a place where she could play underneath a huge apple tree every afternoon or sit on a swing that hung from its branches, or could read a book under an actual starry sky, and had a library full of all the books she could ever imagine, wouldn't that be an amazing wish? What if real bubbles floated down from the clouds and sweet music played over her head with the sounds of birds softly singing on a sunny day? We are so hopeful that we can provide such a place as this for her to play, to be taught, to learn to walk, and to relax. Our sweet girl has quite a surprise laying in store for her and it is my hope that we have done a good job for her in choosing what her wish might be.

Stay tuned. I'll fill you in on all the good stuff as it comes along. Have a great day. Trish

She's Home

Our house is a little crowded these days, but I don't mind. I'm really enjoying it. My mom is here helping with Ashley Kate while I run errands before the big move. Allison came home, and I'm so glad she's here. One of my nieces came back with Allie, and then Blake's best friend is like one of the family. He's always here and we like it that way. So in our little house this week you'll find 8 people stacked on top of each other and its crazy fun! In the new house we'll never be this crowded and I'm afraid I'm going to miss it. The chaos that comes from such a small space is something I have learned to love. The noise, the tip toeing, the bumping into each other around every corner. These last couple of weeks here in this house are going to be precious times for my heart.

Tonight my niece piped up with a question. The kids were all huddled together on the floor painting a project and my mom was in the room with them.

"Nan, whats a bachelor?"

My mom answers, "A bachelor is a man who's not married and has to do all the cooking and cleaning and laundry for himself."

With that said our Allison announces, "Then I'm marrying a bachelor!"

I missed her and her nonsense so much last week and I'm thrilled she made it back home to us. On top of all her silliness we have made it to one of those major milestones in her life. I made a promise to her all year long that this summer would be the summer. She's not forgotten. As a matter of fact she has asked about it every single day since school let out. Tonight was THE night.

She tells the boys (remember their 13), "You guys are going to be present for the second most important day of my life so far. Aren't you excited?"

"Uh... of course we are. About what?"

"Just wait. Your gonna see."

And then it happened. About half an hour later she appeared from the bath with the smoothest legs she's ever had and you would have thought she had been handed the whole world. The smile on her face as she squealed, "It worked! I can't believe it! It really worked!" was the biggest I have ever seen.

Its been an exciting day in our house.

In Ashley Kate's part of the world she continues to take tiny steps back toward her old self. We are so excited. She's eating again. Small amounts of baby foods, but its food and we are so excited for her. Then today she made me cry as I sat across the room from our girl and watched her begin to move. I couldn't speak. All I could do was sit there in awe as I watched her figure it out and remember how she used to scoot across the floors to get what she wanted. In that moment my heart was so full of joy and gratitude. Its been so long since I had seen any movement initiated by her that I had forgotten how beautiful that little "scoot" she created was to my eyes. Blessing abound all around her as she makes her way back to who she was before the last 8 months of struggle began.

Allie's home again and that puts us all back in the same place for a few days. Then Blake will be leaving us for a long weekend trip. Summertime is full of fun and I'm so blessed to watch the kids enjoy the freedom that comes with this time of year. Before too long the days will be gone and school will begin. They are packing as much as they can into these few weeks with their friends.

Life is busy and blessed. We are grateful. More than words can express. Hope your enjoying your summer as much as we are enjoying ours. Take care my friends. Trish

Life

Ash with her Gotcha Day Cake June 2009

I held our sweet girl on my hip this afternoon and beamed inside as I shared with her daddy, "She's got her life back. You can actually see the life in her eyes that has returned!"

Day after day she wakes us giggly and happy. Our sweet little girl who was born with such a passion for life has made her way back to us. She is so, so happy. All day long and late into the nights all she wants to do is play, play, play. What joy our hearts are overflowing with to see her once again have the ability to enjoy her life. It was a very long 8months, but one or two or seven now stretching into 8 days of feeling good again makes it seem like a distant memory. Our hearts are so grateful!

Ashley looks amazing. She feels amazing. Other than a leaking g-tube she has no signs of discomfort. Her eyes twinkle again and the color in her cheeks has returned. She is silly and sassy. Telling us all she can think to sign as fast as her little hands can go. This afternoon at bath time she let us have it. With a shake of her head, "no, no, no" and the swiftness of her hands she let us know that she would rather do anything other than sit there while we shampooed her hair and washed her back. At first she signed, NO. Then begged her daddy to pick her up. When that didn't work she pointed to the door and waved bye-bye. Then told us to drive in the car. From there she asked to go back to the living room. Could she just go read a book? All the while tears rolled down those scrumptious cheeks. I laughed so hard at her. It took a whole 10 seconds to tell us all of those things and then she just gave up and cried her little heart out. Oh, how I love this child! She brings out the very best parts of me. Of all of us.

Yesterday, I walked into our family room to find her lying on the floor, snuggled between two 13 year old boys. They had turned on her bubble machine(she received it for Gotcha Day this year and I have to tell you it was one of the best gifts I have ever purchased!) and it was raining bubbles down on their faces. Her little eyes were squinted and her nose scrunched up, but her smile was as wide as I have ever seen it and the giggles that erupted from inside of her were contagious. What an image! One I hope to never forget.


There is life in her eyes again and its the most beautiful thing I've ever seen. How I wish you could spend a moment or two with our girl and feel the zest for living that oozes out of her every part. I love her so very much and I had missed this part of her more than I even knew. Dave and I are enjoying each and every day with her. We can't get enough of the snuggling, the giggling, the playing, the everything.

Needless to say Rapamune is now one of the drugs on our DO NOT GIVE TO ASH list. Never again will I allow such a thing to steal her away from us. We know better than to go this route again. Our prayer is that God will allow the Prograf to do the job and keep her organs safe so that we might never have to look for another solution and never have to watch her suffer from such side effects again.

God continues to bless and bless and bless. Have a great weekend and I'll check in with you when we return from our weekend at the ballpark. On our way to Terrell this week. Take care. Trish

Happy Days...

...are here again!

Its been a full week since we got the go ahead to stop giving Ashley Kate the drug Rapamune for her immunosupression and since the day we stopped life has changed for her and for us. Our baby is not sick, not vomitting, not miserable, not stooling out, not TPN dependant, not anything but...HAPPY.

She has advanced from 2cc of formula an hour to 70cc in a week's time. The goal is 80cc. In a day or two she will be on NO TPN and back to full feedings. We will watch her for a few more days to make sure she adjusts and tolerates it all and then we will remove this central line from her body and give her a chance to be well, hopefully stay well, and just enjoy her summer. Our hopes are high and we are feeling more confident about her status then we have in over 8months. I realize things can change so quickly and that every day that this line is inside of her is a day that we run the risk of infection returning, but if you could see the smile in that face and the twinkle in her eyes then I imagine you would understand why we are feeling hopeful.

To think that something we gave her daily over the last 8months caused all of this heartache and struggle for her makes me sick inside. Dave and I KNOW that drugs are not good. We live, breathe, stand by, defend, and practice it daily in our lives. With Ash we have no choice but to use some of them to keep her organs safe, but look at what has happened to her with the use of this medication. Praise God we didn't lose her during all of this time. He protected her and now we have been allowed to stop using it and she is getting stronger every single day.

Currently she is only on Prograf and Prednisone(which you already know how much I HATE this drug) for her immunosuppresion. We are running her Prograf at the same levels we ran it last summer when she was doing so well. If the suggestion ever comes back up about cutting that dose back in half you can bet there will be a discussion over it. We've battled rejection 2 years in a row from cutting back that dose, then we've tried to add both Cellcept and Rapamune to her Prograf to keep her out of rejection with disastrous results. I realize those two drugs may work for some transplant patients, but they DO NOT WORK for Ash. We now know and will not be making the same mistakes. The concern with Prograf is the toxic results it has on her kidneys. The drug has a history of destroying kidney function and so monitoring of her kidneys is something the team will always do. Many of the transplant patients end up with kidney transplants later down the road and that is something we pray does not happen with Ashley Kate.

Its been a busy week for us. Blake is busy, busy ,busy with baseball. I'm running around town getting estimates, taking measurements and choosing materials for the new house. Ash is playing with her Nan. Allison Brooke is out of town at church camp(and we are missing her silliness. I can't wait for her to get home.) We leave Friday for another ball tournament. Really looking forward to it after last weekend. We didn't get home until 2:30am Monday morning from the state tournament. Our Tarheels had an AWESOME weekend at the ball park, but feel just shy in the last inning of the championship game of earning their 5th state title. I don't think they were disappointed in the way the played though. They knew they had given it all they had and by the time the 6th game began at 9:30 Sunday evening we had no pitching and no catching left. Blake had already caught 4 games and couldn't pull out another one. He pitched the first 4 innings of the championship game and when he left the mound we were winning 3 to 2. The last couple of innings are kind of a blur because we were so tired, but at the end of the game the other team was at bat, the bases were loaded, the next kid hit a triple and the final score came out to be 8to4. We lost to the team we beat last year at the state tournament. So I guess that's ok. It was some of the best baseball I've seen us play all year long and it was so FUN!

Happy days are here again for our family and we are feeling so blessed. The big move is approaching and I still can't bring myself to pack up the main rooms of the house. Its going to be a busy end of the month if I can't get over the emotional issues of leaving this house! Then a few weeks after the move we will celebrate Ashley Kate's 4th birthday at the new house. Preparations are being made for a huge summer party and we are so excited!

Just wanted to check in with everybody. The internet is still hit and miss around here. Sometimes I have it sometimes I don't. Thanks for being here today. God bless. Trish

Gotcha Day 2009

Yesterday, June 7, 2009, was Ashley Kate's Gotcha Day anniversary. Our 4th one! 4! When I think of how BIG that number is I smile all over. Its bigger than 1, than 2, than 3. Its 4! I'll never forget the day we walked out of the court for the first time papers in hand that said Dave and I had the right to see our sweet girl, to be informed of all medical information, and to sit by her side until the day she came home to us. As we walked along the side walk an attorney walked with us on the way to our cars. The words he spoke sent chills up and down our spines. You see we had been loving this baby for 13 years. We had been fighting for her for two weeks already. We had been kept from her by a frightened staff at a hospital, had been forced to call strangers each and every night for those two weeks to remind them that this was our baby and that we loved her. We asked them to tell her that we were coming as fast as we could and that when they touched her tiny, fragile body to remember that they were the only hands she had ever known but that her mommy and daddy's arms were aching to hold her. They thought we were crazy. They treated us as such, but I didn't care. We faithfully made those calls each and every night so they wouldn't forget that she belonged to a family. One who loved more than words could explain. Anyway, when that attorney said these words I died a little bit inside.

"You may have been called to be the only hands that ever love her. It may only be for a short time. A few days, a few weeks, maybe a month, but your hands will be the only love she will ever know. That's special."

My heart was breaking. The judge warned us on the way out of the hospital that morning, "Mr. Adams, I'm afraid you and your wife my be heading for a broken heart. Be careful."

Dave turned to face her and answered, "Its too late. Our hearts are already breaking and we love her anyway. We always have."

With that said we raced out of that courtroom with document in hand and drove as fast as we could toward Ashley Kate. She was a little over 2 hours away fighting for her life.

So when I say 4, not 1, not 2, not 3, but 4 it is a huge number! God has given us 4 years. 4 beautiful years to tell the world that, yeah, we got her. He gave her to us and yeah, our hands hold her, they love her, they comfort her, they care for her, the treasure her.

The day she was born no one believed she had a chance, but I believed. The day she developed NEC they wouldn't tell us that she was dying. We had no rights. As we sat in court on that 14th day and we heard these words from the social worker, shared with no compassion and just stating the facts for the courts records, "There may not even be a baby left for them to adopt. She wasn't expected to live through the flight and we haven't heard anything." My heart dropped. Dave and I looked at each other and our hands held on to each other as tightly as they could. I still believed. She was ours. I knew it. My heart told me so. God had already done big miracles in this situation. I believed I would hold my daughter. She would know she was loved. Desperately loved and wanted.

Those early days of Ashley's life were nothing short of miraculous. Someday, I hope to have the opportunity to share each amazing moment with the world. For know I hide those things in my heart and I smile when they come to mind. It was in those days, those first 14, that the God of the universe became more real to my husband and I than ever before. If you only knew the things He did. If only I could explain then I know that all who heard the story would forever know that HE is real, He is alive, and He loves us. Even the tiniest of His creation. Like my Ashley. Someday, I believe He will tell His story through hers and so I continue to protect the details, the treasured memories, until the day my daughter is old enough to comprehend it all and then we will shout it from the roof tops.

4 years! Happy, happy Gotcha Day my sweet girl. You are so loved. Years and years before your conception, your birth, your life you were appointed this mommy and daddy and God laid it on our hearts to love you. I dreamt of you. I longed for you. I prayed for you. To smell your delicious hair, touch your tiny hands, kiss your soft,rosy cheeks brings me to my knees daily in thanksgiving. For you are so much more than I could have ever, ever imagined. You changed me, you changed us, you changed the world around you. I love you more than all the "manys" in this world Ashley Kathrine Adams. You completed our family the day you were born and we will forever be changed because of your presence. I love you, mommy.

116

That was the actual number of Ashley Kate's blood glucose. 116 is a very, very long way from 37! She looked far too good for me to believe that number could be accurate, but they were very concerned and wanted me to confirm that she was not symptomatic. They asked me to wake her up yesterday morning and my sleepy baby was not having it. Not because she was lethargic or unresponsive, but because she was tired and very grumpy. She refused to open her eyes, but she did shake her head "no" very defiantly all the while her eyes were closed as tightly as she could close them. She crossed her arms so that I couldn't pick her up and make her get out of bed. I was literally cracking up with the transplant coordinator on the phone as I confirmed that "yes, she is tired and still sleeping, but no she is not unresponsive". She was quite responsive in letting me know that she really didn't care who was on the phone asking for her to get up, it could have been the President for all she cared, it was NOT going to happen. Oh, this girl! I love her spunk!

This morning Dave and I will be at the new house choosing flooring and getting an estimate. I imagine I'll need to be sitting down when they tell me how much it is going to cost to get 3100sq. ft. of new floors laid. Oh, well its got to be done and if I can afford to have nothing else done in the new house for the next 10 years this is on the top of my priority list. I just can't live with carpet. The whole germs trapped where you can't see them creeps me out. Especially with Ashley Kate's lung condition. Since she spends most of her day on the floor playing I have to have them redone. Hopefully there will still be a little money in the budget to take care of a few other things too, but if not we will be moving in anyway.

Once we finish at the new house then we are loading our little family in the RV and taking off for the Dallas area. The Tarheels are playing in DeSoto this weekend and we are so excited to get to watch Blake play this weekend. Allie will be heading on toward Oklahoma to attend camp with my nieces in Kansas next week. She is so excited! Its the first time we have allowed her to go without us and she promises to wash, dry and fix her hair each day. I really hope she does. I hate the idea of her not taking care of herself. She got some super cute outfits and is so, so looking forward to it all. We've had her packed since Monday! My mom will be coming home with us this Sunday for a few weeks to help with Ash so that I can pack, run errands, and make decisions for the new house.

Things continue to run at full speed around here and we like it that way. When we do lay our heads down at night I assure you none of us have any trouble sleeping. I think sleep is one of my favorite things as a mom. Such a pity I don't get that much of it! I often wonder why I hated nap time so much when I was a kid? If I could figure out how to re-instate that into my day I would be thrilled!

Hope you all have a great weekend. We are really looking forward to ours. Take care my friends. Trish

She's in Love

With her daddy and her daddy is...


in love with this little girl!

Its moments like this in our little yellow house when Dave comes in from the office that I'm really, really trying to convince myself will be at the new house too. After all its not the house that makes it home its the family, right?

I snapped these photos around 8pm last night and then the whole story about the lab work took place at 9pm. I just got a call from Nebraska letting me know that her blood sugar was only 37. 37! Thats so dangerously low that its not just alarming it warrants a call from all the labs, doctors offices and surgeons' who have ever taken care of her. The symptoms of blood sugar this low are lethargy and non-responsiveness. Based on these photographs I just can't believe that level is correct. I really can't believe it. I'm working on getting a glucose monitor right now(Dave's mom is borrowing one from a friend) and then we will be checking blood sugars throughout the day. If it is that low then the team in Nebraska said they will have to figure out a way to get us some glucose to straight push into her line and try to get it at least as high as 60 although they want it to to register between 75-90. She looks amazing this morning. She really does and so I'm not in a panic except for the part about needing blood for all of this monitoring.

I can assure you its never, ever slow around this place. They or shall I say she keeps us hopping on a daily basis.

You Are Amazing, God

Just a day or two ago I shared with you my desire to show Blake and Allison the power of our God through the raising of our sweet Ashley. I also shared with you the mistakes we make in doing so when we allow fatigue, or worry, or stress to take over, but just as I have heard my whole life "our God is a God of second chances". Last night we were given that chance to share the power of the God of our universe with all 3 of our children and it left me humbled, in awe, speechless, and grateful.

To stop and think a moment or two about how big this world is, how many people are in it, all the issues, the problems, the souls that our God is intimately involved in might leave you thinking or wondering if He in fact hears your prayers, has time to answer them, or even cares about what is happening to you in that moment. Let me assure you my dear friends that Yes, our God does care, He does love you, He does know what you are going through, and even when no understanding can be found He has a plan. I just know that He does. Even though I have that knowledge, convincing Blake and Allie of that is sometimes difficult when there are no words during the rough days of Ash's life. Last night, our God came to meet us where we all sat, surrounding our tiny girl, who had NO interest in listening to our pleas on her behalf. Instead, as I was praying for her she fussed at me to get me to open my eyes and when I did not she planted one right in the center of my forehead causing me to crack up while I was talking to the Father. When I looked up at her she smiled, signed the word "book" then "apple" then pointed across the room to show me exactly which of her books had the apple tree in it and that she would like for me to get it for her. Oh, my how this child make me smile, and I have a good suspicion that she had her Creator grinning from ear to ear as well.

As I went to change Ash's TPN late yesterday afternoon I realized that there was NO blood return coming out of her NEW central line. Yes, the line that was placed in her two last available sites, the one that was placed Monday morning of THIS week. Yes, that line. Instantly my heart broke. I did everything I could think of. Literally everything. Finally I just pushed Heparin into the line and decided to let it set. Disappointed, I walked away. For hours. I couldn't bare to think of it or talk about. I didn't even call Dave about it. I tried to imagine that it somehow wasn't happening. About 9pm last night I withdrew the Heparin and began to work on that line once again. Nothing I did could make it budge. I shared with Dave what was going on and we began to discuss our options. The hospital. The ER. Shreveport. Find someone working in the local ER's that we knew who might help. None of it sounded appealing after seeing her have such a great day. I just couldn't bare the thought of taking her into the hospital. Dave tried the line and failed also. We used all of the"tricks" we have learned over the years and tried all of the things I knew our doctors would try. Nothing was happening. At the same moment we looked at each other and said, "We could pray over her."

Honestly, I said mine in a half hearted way not really and truly believing our God would show up in our home at 9pm on a Wednesday night, but Dave's faith surely must have been stronger than mine. Then we called the kids in to our room and we surrounded our sweet Ashley and began to talk to our Father about this central line. As Dave and the children prayed for Ash I could feel my faith getting stronger. Dave's strong voice, his heart for his child, his belief in His God and the power that he knew HE had. Blake's faith, the words that fell from my son's lips, the bold requests he made to the GOD of the whole universe. My son knew our God intimately and I could hear it in the strength of his words to HIM. Then that sweet, almost melodic voice of Allison Brooke. Tears stinging my eyes as she asked her GOD to "please help Ashley and to make the blood come out." I was strengthened by their words and then I prayed. In the midst of the my prayer the "punch" was thrown and received by my head and as I sat cracking up at this miracle child of ours that had taught us all how to truly pray I believed that our God could indeed open this line and change things for us.

The children retreated to their rooms, Ashely lay on her back with before mentioned book held up over her head and Dave began to attempt the line once again. I stood back and watched as the tiniest trickle of blood pulled back into the saline and the smile broke out across his face. "Get the kids and get the tubes you need for lab work. I want to keep the flow going." I called the children in to witness the power of our God and ran for the syringes and lab tubes. We were able to marvel together at how much our God cares for our sweet Ashley and we were able to draw the blood needed for this weeks lab work. Smiles crossed the faces of the children and I gave Al a high five and said to her, "Our God ROCKS!" She grinned so large and nodded her head yes before she left skipping from our room.

Can I say a loud, "PRAISE GOD!"

It may seem small to some of you reading these words, but to a family who has been to the brink of death with this child, who has grieved more times than I care to admit over the losses in her life, who has watched struggle after struggle, and who wants nothing more than to take the pain out of her life, this was HUGE. SO HUGE.

Every once in a while I think God shows up just to remind us that He is in control. He heard my desire to show the children His power this week and He came to meet us amidst our boxes, on top of our unmade bed, in the middle of our circle, and laid His hand on a little piece of plastic that had been inserted into my daughter's leg and exited out of her side. That is the kind of God that He is.

You ARE amazing, God. Thank you.

I have no idea if the line will continue working. I really and truly don't. I hope that it does, but even if it does not last night God was here among us and its something I don't think any of us will soon forget.

I hope you are encouraged today. No matter what your circumstance. He cares. He loves you, and He's patiently waiting to be invited so that He might show up "amidst your boxes, on top of your unmade bed, in the middle of your circle". Take care my friends. You are loved. Trish

A good day

I don't know if you can tell by the look on this sweet face or not, but we have had a good, good day. Ash is feeling better today than I have seen in months. She is full of smiles, full of silliness, full of sweetness. In this photo she is trying to sign the word "book" to me but not willing to let go of what Blake calls "the magic carrot". No matter what is going on, tears, tantrums, surgeries, stitches, dressing changes, honestly it doesn't matter what is breaking her heart if you hand her the "magic carrot" she immediately gains control and life is in that instant a little better for her. There's nothing really magic about the carrot except that it holds bubbles inside of it and she knows that. You may recall seeing this "magic carrot" in her hand in the pictures I shared from last weekend. She's never far from it. I pack it with us no matter where we go. Its a piece of security for her. A little bit of happiness when things in her world begin to become not so happy anymore. I love this silly girl and that silly carrot(it was the only thing in her Easter basket this year that she showed any interest in).

Last night Dave and I had to change the dressing on her new line for the first time. She never likes dressing changes, but I have never seen her actually feel pain from one of them before. Mild irritation at being held down, but never physical pain. Last night was rough. Really, really rough. This line in on coming out of her left rib cage. The catheter that extends to the outside of her body through the opening is actually larger than one I ever remember her having. She is bruised and bleeding and has more stitches holding it in place than I ever remember her having. She screamed and screamed. Growled and kicked me so hard I almost dropped everything in my hands and almost had to start over. Dave was holding her hands and arms down, but she is so long now that its impossible for me to control her legs and her feet while I am working on her. I never want to put it her through this again, but we will. Once a week. Every week. Until she no longer needs this line. Its in a very miserable place for her. Really miserable. Our hearts were breaking and the kids ran to hide in their rooms until the screaming ended. Then Allie begged me not to ever put her through that again and demanded to know the reasoning behind it. "Why can't you just leave the one on that's already there!" I tried to explain the whys behind it all, but at eleven she doesn't understand it all. All she knows is that Ashley is hurting and that we are the ones causing it.

But today...she's happy. So incredibly happy! Such joy radiating from her countenance. How I wish my countenance could shine like Ashley Kate's does on her good days. This child is so amazing. So precious. So wonderful.

I'm grateful for this day. For the sweetness of my youngest daughter. For her "magic carrot" that can even make the tears from last nights dressing change quickly disappear. For the rain I hear falling on our roof top. For my son who sits by my side as I type visiting with me "just because"(we are actually going over pictures of him batting this season and critiquing them for this weekends tournament. Fun stuff! Seriously, I love doing this with him). For the shopping trip I took with Allison Brooke this afternoon and all the things she said that cracked me up. For the opportunity we have been given in the selling and buying of our homes. I still can't believe we are leaving this house in a matter of weeks. I keep snapping just one more picture of this or that not wanting to forget the memories and the homecomings Ash and I have had in this home. Blake told me the only reason he is sad about leaving this house behind is because he knows this where Ash feels safe. I shared with him that I believe she feels safe here because she knows its where we all are and I'm hoping it won't take her long to feel the same way about our new home. I'm not sure if I was trying harder to convince him or myself of that. Anyway, still I find myself grateful that things have gone so smoothly for us during this whole process. Its been a good day in our house. Our little yellow house. I'm hesitant to pack too much because I still want it to feel like our home each night when we walk through the doors. Last night Dave and decided we could wait until the last week to pack the rest of it all. That way it still looks like home. We are really attached to this place. It cracks me up!

I'm so thankful for good days. Although I don't like the bad ones, I truly believe its the experiencing of the bad that makes the good so very good. We are blessed!

Witnesses

Hebrews 12:

"Wherefore seeing we also are compassed about with so great a cloud of witnesses, let us lay aside every weight, and the sin which doth so easily beset us, and let us run with patience the race that is set before us.

Looking unto Jesus..."

In the darkness of yesterday morning as my sweet, snugly, baby girl sat sleeping in her car seat I turned on the radio in an attempt to keep myself awake as we made the drive to the hospital a little over an hour away. As the man on the radio read this scripture it came alive to me like it never has before. I mean I've heard this particular verse several times in my life, but yesterday something was so very different. Maybe it was from being so sleepy or maybe it was something given to me from the Father yesterday? I really don't know, but either way I have been so encouraged by what I "saw" on that drive.

I began to picture a great crowd. A crowd of "witnesses" maybe? A crowd who was surrounding me, but yet still a great ways from me. Perhaps a cloud of witnesses of those who run this race before me? The best way I can think of to describe what I "saw" is to share with you an image of me running. I was a runner in high school. Sprinter and hurdler mainly, but in the off season I participated in cross country to stay in shape. It was at one of these meets that I would like you to picture me. If you've never been to a cross country meet then let me share with you that it is very different than a track meet. A track meet takes place around a large oval track. All racers in every event run along the very same, very smooth lanes around that track. In cross country this is not the case. The course is what we run. It is never smooth, never the same, never oval in shape. We set out on a rather long course. All beginning at the starting line and running as hard as we can to set our place in the race. Once you have fallen in to your place you begin to set your pace. The course goes over hills, across creeks, around rocks, and seems to go on forever. The best part about these races or at least the parts I remember the most from my experience is the "cloud of witnesses" that spaces themselves along the course. The "witnesses" encourage you as you run past, some of them waiting until you have passed them and then making their way down toward the finish line to be there to cheer you on as you cross it, but others making their way to several spots along the entire course to be there to encourage you as pass that mark, then the next, then the next. They in essence are running the race with you.

Yesterday morning this is what I pictured on my drive. Those witnesses who have run this race before. The one I feel that I am running. Those who have been here, done all of this, and made it to the end. They were there surrounding me, encouraging me, and cheering me on. Oh, what peace I felt as the smile crept across my face. I am not alone. There are those who have survived the transplant journey, who have raised their chronically ill children, who have made it to the finish line and they were there encouraging me. Just knowing that they had survived and picturing them cheering for us, for Ash, for Dave and I. What a blessing that early morning drive and those words of scripture were to me.

I'm sure I've taken this scripture out of context in some form or another, but its days like yesterday when the words of God become so vividly real to me that I feel they were written just for me in that moment. I've thought of them all day long. I've been encouraged by them. Picturing a course with witnesses, experienced runners, those who have done this, placed along my path just to lift me up when I feel as though my feet can not bare to carry me one more step. It is times like this that keep me focused on our goal. Not only to raise our sweet Ashley Kate, but also to do it in a way that ministers to our children, to our family, and to our friends in a way that will please the Father. If I were to be honest with you, and you know that is always my goal while journaling her story, I would share with you that there are days(a lot of them lately) when my eyes have lost focus of this goal. When I have been so discouraged and so exhausted with her being sick for so long that I didn't care how I made it to the end of the day. All that mattered was making it. There have been so many nights lately where Dave or I one will say at the end of the day how "tired we are of Ash being sick". We have said aloud how much it hurts to watch her struggle with all that she does and we have said some of those things in front of Blake and Allie. Never intending to take away from the blessings and the miracles God has given and has done in her life. Just allowing the weariness of our souls to spill out when we should have guarded them more closely.

In the end of this journey, wherever it may lead us, my goal is for my children to know the power of God, to have witnessed His loving kindness, and to show them how precious, how very precious the baby sister they love so very much is to the One who created her and placed her in our family.

That "cloud of witnesses" has brought me back to that place and today I'm very grateful for that early morning drive with my tiny girl, and even more grateful to have been blessed with the opportunity to bring her back home with me and show Blake and Allie how good God is.

Success

Ash and I made it home in record time today. The line placement was successful. She has a fully functioning central line coming out her left rib cage area just above her g-tube. Carefully placed away from her waist bands and not entering into any of the breast area(her surgeon blessed my heart when explaining to us his goal of not entering that area foreseeing that someday in her future it would be important to her. Its as if he overlooked the numerous scars all over her shoulders, chest and abdomen and still felt it important enough to protect this for her. Not many of our surgeon's have ever considered or placed much thought about her future when choosing where to cut on her. This mommy sure appreciated his thought process.)

We arrived home at 12:20 and promptly fell asleep. For the entire afternoon. As a matter of fact my sweet girl is still sleeping and I just woke up. I realize its shameful, but I am so exhausted. I truly am. Its been a very long, very hard May. My mom is on her way here to help me get through this next month and I couldn't turn her offer down because I am just that exhausted. What a blessing it is to me that she realized it and is so willing to drop it all and come to help. Truly a blessing.

Blake and Al are at grandma's house with friends enjoying every inch of summer. The pool and the pond have called their names and they have answered loud and clear. I know their having a great time so sleeping all day with Ash hasn't made me feel to guilty. I absolutely would not have done that if they had been home.

Dave is working late and Ash is sleeping so I might just pop in a movie so that I don't have to think too much, fix a sandwich so that I don't have to cook too much, and sit real still so that I don't have to move too much. I'm looking forward to a good month. Full of health for our sweet girl(I counted the days on my calendar while she was in surgery this morning and she spent exactly 3 out of the 4 weeks of the month in a hospital room.) I hope! Her Gotcha Day is coming up this weekend and I'm so excited to have the opportunity to celebrate it. That should be fun! Thank you for praying for her today. Talk to you later. Trish