Ashley's Story

She will leave fingerprints all over your heart

7/31/2007

Just Too Quiet

A day without our sweet Ashley Kate's laughter and nonsense just doesn't feel right. She continued to sleep the entire day and is still sleeping as I type. The house is so, so quiet. We have become spoiled with her silly behavior and her antics. The kids have tip toed in and out of her nursery just hoping to catch her awake. We have all missed her today.

She has no fever and has not given up any more "offerings". For this we are really thankful. She just seems worn out. I have seen no signs of infection brewing so for now we are just letting her rest. My prayer is that she will wake in the morning smiling, ornery, and ready to give her therapist a whole lot of trouble.

I honestly don't remember what our life was like before our little one came along. The last two years have been packed full. When I think back over them one word comes to my mind that sums it all up. BLESSED. Our life has been blessed. Our home has been blessed. Our family has been blessed. From the moment I answered the phone to be told that our sweet Ashley had been born the Father has shown Himself. Sometimes He showed us just who He was in small, quiet ways. Sometimes He showed us His presence in very large, miraculous ways. Always He has been with us. Carrying our burdens. Listening to our cries. Collecting our tears. Smiling as we praised and rejoiced. Ashley's life has taught me who our God is and I will forever be grateful for that lesson. We are blessed.

Sure there were and probably still will be hard and difficult days, but when I see her smile those days fade away. The place that we find ourselves in today is a peaceful place full of gratitude, reverence, awe, and thanksgiving. Again I will say that He is good.

Thank you for checking on Ash today and thank you to all of you who prayed for her today. Someday I hope to have the opportunity to thank you in person whether it be here or on the other side. Good night and God bless. Trish

Feeling Yucky


Ash isn't feeling so good today. I'm not sure whats up with her, but we started our day with a huge amount of vomit that required a bath, a dressing change for her central line, and an ostomy change. She stayed awake all night and couldn't sleep. She was happy not fussy or uncomfortable, but had difficulty settling down to rest. Eventually I decided to just hang out with her and see what she would like to do. At 5:30 this morning I "tagged" Dave and he went to the girls room to take a turn(Allie had given up and gone to the couch around 3:00a.m.). At 7:00 Dave came and got me to try and help with the mess. She had yet to close her little eyes. She continued clapping, giggling, and playing through it all. We decided to stay awake and start the day. She practiced rolling over 5 or 6 times and then moved into the living room to play on her pallet. Around 9 she got really fussy and I just thought she was tired. I took her into the nursery for a nap. When I went back to check on her those puffy cheeks were very flush and had fever in them. She continues to rest but not peacefully. I am left wondering what is wrong. We had labs drawn yesterday and things seem to be fine. Her counts are still recovering from that last round of chemo, but they are inching closer and closer into range. I don't think she has an infection or anything. It just seems like she is feeling yucky this afternoon.


I'm feeling a little nervous just because of her central line and the fact that we did use it for her eye surgery last week. It is always possible to pick up a line infection when entering in and out of it, but I would expect her labs to have shown us something. Her eyes are still in the healing process, but I think they are looking better and better each day. I am going to wake her around 4 and try and get her to play for a while and see if she is interested in having a late lunch. Even when feeling yucky her sweet spirit shines through. She flashes that smile at me and it just melts my heart.

Its almost crunch time. I am busy planning(I can't tell you how many lists I have going) and packing for our trip. Only a few more days until our little gherkin will be 2 years old. I pray she is able to shake of the yucky feelings and will be able to enjoy her celebration. Your prayers for her today are so appreciated. Its tough to see her feeling bad when she has been doing so great. I just hope we figure it out so we can help her start to feel better.

Website Address

I always hesitate to post others blog addresses especially when I don't know them to ask their permission, but I think it would be ok in this instance. Amy has asked her readers to please cover them in prayer so I thought I would ask Ashley's to do the same. Her husband's name is Brandon and her son's name is Gary. Gary is about a year and a half old.

When you read her journal you will be touched by her faith. She knows who holds her life and her breath. She knows He has a plan and she is willing to follow His plan. She is just wearing out and her body is so very tired. I believe your prayers for her will make a difference in her days.

Thank you so very much for loving others. Trish

www.wilhoite.blogspot.com

7/30/2007

Burdened

I was feeling led to share my testimony this evening until I felt the need to stop by another blog for a quick update. Once I was there I knew why I went there first. Tonight I want to ask for your prayers. There is a beautiful young wife and mother by the name of Amy. Amy is fighting for her life,and she is tired. Her words are so painful to read. My heart aches for her.

I do not know Amy, but that does not matter. The Father has asked us to bare one another's burdens and I know from experience the strength that can be gained from the prayers of others. Her struggle and her pain is more important than any words I could share with you tonight. I trust you and I know that when you say you are praying that you really are. Thank You for your willingness to love others. I can't imagine how it would feel to know that I would be leaving my husband and my children soon.

May the Father wrap His arms around sweet Amy tonight and all of those who are hurting. Good night my friends. Trish

Just another day...

... and I am loving it! The children are having lunch around the table. The washer and dryer are going. Nora Jones is playing in the kitchen. My favorite candle is burning on the mantle. Our sweet Ashley Kate is hard at work AND enjoying her favorite blue puppy.




I know it looks like we are torturing this baby, but I assure you we are not. This is Ash in her stander working on strengthening her legs and ankles. She is actually getting really good at it. She can stand through an entire episode of Blue without fussing. Since she only gets to watch Blues Clues while she is working she tries to be really quiet hoping I won't notice it is on. Silly baby, she doesn't realize I am the one who started it for her.




She is getting stronger and stronger each day, and has begun trying to wiggle her way out of her stander on her own. She tries to lift her legs out of it and even tries to reach behind herself and unfasten the strap. She will never be able to escape this contraption on her own, but all of the twisting and turning is really good for her muscles. Ash doesn't like to use any rotation in her trunk area so I allow her to think she is escaping for a few minutes before I help her get out.



This last picture I just threw in just because I couldn't wait any longer. I know her eye is still bloodshot and a little swollen, but I wanted you to see how straight the eye is when she is looking ahead. It no longer stays turned to the inside corner. It still has a lot of healing to do before we can tell exactly how it will function, but at this point I think it looks better.

Well its time to pick up some of Ash's things so we can clear a spot for her therapist to sit. I guess I should go otherwise Ms. Sue will have to sit on top of this big green dinosaur. Talk to you later. Have a great day!

P.S. Morgys mama asked who took Ash's portraits(I still have some really great ones to share with you:). Dave and I just took Ash out to the pond and took them ourselves. I'm still learning to do that "relax" thing we talked about in Omaha and I couldn't bring myself to take her into a photographer. I'm so glad you enjoyed them. Take care.

7/29/2007

He's Just Too Funny

Allie and I spent the afternoon shopping for the last couple of items we needed for Ashley's birthday party. We had a lot of fun together and she was a really big help. She is so excited about Ash's birthday. One of the items on our list was going to Toys R Us to pick up the gift she and Blake decided to give her. The gift is just perfect for Ash. We really wanted to take it to Oklahoma with us and then on to Colorado so she could enjoy it during our trip, but the box was a little bigger than I was expecting so we "had" to open it today(the kids were so excited they really couldn't wait). Since we "had" to open it we needed to assemble it so the kids worked on attaching the handle and Dave worked on placing the stickers in the right places.

Let me just share with you that Ashley's daddy is just too funny(at least everyone except her mommy thinks so!). As he came to the headlight stickers this is what he said:

"Would you like googly eyes or straight eyes?"

In light of this weekends eye surgery and the different stages Ash's eye has been going through I didn't really think this comment was that funny, but laughter broke out across the room. The kids thought their dad was hilarious including our little Ashley Kate who was oblivious to the fact that her dad was picking on her. Silly girl, SHE thinks he's too funny. Needless to say I insisted on giving her new set of wheels nice, straight eyes. I know Ash is going to love this car because she loves for Blake to push her around the house on whatever he can find(blanket, walker, bumbo seat, stander, high chair). He pushes and pushes until his legs are burning and his back is breaking. I'm not sure if Blake or Ash is going to love this car more. It comes with a handle on the back so he won't have to squat down to push.

Its hard to tell what Ashley Kate's eyes are going to do. At this point they are a little googly and she hasn't learned how to control the new freedom of the left one. It looks a little silly, but I am hoping it settles into a normal position. Most of the time it seems to be looking straight ahead which is wonderful, but when she needs to look left or right it doesn't know which way to go. It has been really bloodshot today and looks very sore, but she acts like it doesn't bother her at all. She has an appointment in the morning with her doctor in Tyler. I am hoping to visit with him about what stages we should expect it to go through. It seems logical to me that it may take a few weeks for it to settle down. Regardless of what the eye does, I am just so grateful that she will be able to use her vision in both eyes for the first time in her life. I wish she could talk so she could express to us just what it feels like not to have to choose which eye to see with.


Its been another good day at our house. Sometime it feels as though its not real. I can't tell you how grateful we are for the normalcy our lives have taken on this past month. My heart was overwhelmed as we all sat down together for lunch around our table. Looking across the table and seeing our sweet Ashley Kate sitting in her high chair helping herself to a spoon full of green beans just blessed my heart. Life is good and we are happier than I could have ever imagined. God is good. He is good during the bad days and He is good during the good days. He has given us one more day with our little one and we are another day closer to celebrating two years of her life. Each moment is precious. Thank you for your prayers and your encouraging words. I pray your families were blessed with another good day as well. Good night my sweet friends and may our God bless you. Trish

7/28/2007

Caught off Guard


As funny as it may sound I sometimes "forget" that our Ashley was adopted. Yesterday morning we shared the pre-op waiting room with two other families. As we all waited our "turns" we enjoyed watching each other's children. At one point during our wait I was standing up and walking Ashley around the room to try and keep her mind off of her hungry tummy when one of the mom's asked me a question.

"Is she half Hispanic?"

Although the question itself was a fair one to ask, it completely caught me off guard and I am afraid my immediate answer only caused her more confusion.

"I don't really know."

By the look on her face I could tell her opinion of me was changing and I quickly tried to explain myself.

"Ashley was adopted and we aren't really sure."

"Oh", she replied and then finished by saying, " I was just wondering because her skin looks a lot like my children and they are.

I don't really mind the questions people ask. It gives me an opportunity to share a little of Ashley's story with them and when I share her story it allows me to share His story too. The beautiful thing about this conversation was it caused me to stop and think about how deep my love for my daughter is. It is so deep and so strong that she has never been anything but my daughter. A love so deep that it has allowed me to "forget" that she came to be ours differently than our Blake and our Allie.


Ashley's story has a beginning. A very private beginning that will be shared with her one day, but the every day story of her life is beautiful. The details of her beginning have never mattered to us. Her race, her history, her challenges could never change how very much she is loved. The every day story of raising our little gherkin has become who she is.

Ash looks and feels great. Her eye is adjusting to its new position. I can't wait for the swelling and the redness to go away so I can show you all how good it looks. As I type she sits next to me playing peek a boo with a blanket and causing herself to giggle. She is so funny. She pops her little head out from under the blanket and then claps for herself. She is doing better and better each and every day. I am so grateful for her life and for each day the Father has given her. She brings such a joy to our lives. Thanks so much for being here today. Thanks so much for praying for her today. Thanks so much for loving her today. You are appreciated. Good night. Trish

7/27/2007

Doing Great!

We are finally home from Tyler and Ash is doing great. She had no complications with the procedure and has done so well this afternoon. It took a while to get going this morning, but once they had her the procedure was over in about 30 minutes. Her eye is red of course and the lids are a little bruised, but from what I can tell she looks great. I think her left eye is finally straight. I am so excited for her! She hasn't opened them enough for me to get a picture yet, but I wanted to share with you how her eyes have looked in the past. The first picture is before either eye was worked on. This next picture shows what her eyes looked like after the first procedure . Her right eye looked fabulous, but her left eye still needed some work. The surgeon was only able to work on so many muscles at one time because of the risk of bleeding too much. We needed to wait for six months before finishing her left eye. We were called to transplant and one thing after another took place with Ash's health so her eyes were forced to the bottom of the list. I will never forget the first transplant surgeon we met last August. The very first words out of his mouth were this, "You sure are a funny looking thing. Somebody needs to have those eyes worked on for you." Needless to say he wasn't my favorite person . I had the urge to hit him, but thankfully I did not. Over the course of the next 6 months I learned to respect him and I can honestly say that I like him very much, but it didn't happen overnight.

Today went better than I could have asked for. The team of people were fabulous and they did an amazing job with Ashley. I can't thank them enough for taking such good care of her. Underneath Ashely's clothes there are lots of things that can be intimidating and sometimes nurses are afraid of her. Today God blessed us with very careful, compassionate, kind, and concerned care takers and it gave me such reassurance. It is never easy to watch them take her through those doors, but we made it through another round and I can't wait to post a picture of her new look. She is pretty fussy and a little uncomfortable, but overall I think she is doing great.


Thank you so much for praying for our little pickle today. It means so very much. Take care. Trish


P.S. I have NO idea why this post is black and orange. I am working on a new computer and I can't figure anything out. Oh, well.

7/26/2007

Worn out



Sweet Ashley Kate simply wore herself out today. She played so hard and so long that she couldn't keep her little eyes open. She was in her crib and fast asleep by 9p.m. I gave meds, flushed her line, cleaned her up and she snored through the entire process. I kissed her puffy cheeks and whispered how much I loved her and she still snored. That is one tired little lady.

The entire house is fast asleep and it isn't even 10:30. Dave is feeling a little under the weather and has gone to bed early. Allie has been at Pine Cove all week with her girl friends from school and she is exhausted. Blake had a hard practice in the rain tonight and he came home hungry and tired so he is sleeping too. I have to stay up until 2:30 so I can turn Ash's feeding pump off. She can't have anything past that time until she wakes up from the anesthesia tomorrow. She ate really well today and had a late dinner so I am hoping she won't be too hungry in the morning. We will be leaving for Tyler around 7. I started a movie hoping it will help keep me awake. Unfortunately I don't think its working. I seem to be yawning an awful lot.

I am anxious to get the procedure over with. If this works and Ash's eyes are corrected it will be so wonderful. I just can't wait to see how she will look. It may take a couple of weeks before we know if it works. Last summer her eyes were red and swollen for quite a while, but the right one turned out beautiful. She looked so different once it was corrected. I'm praying for a safe and successful procedure. Even though I have handed her over to surgeons more times than I can count it is still a difficult thing to do. I just have to remind myself that she is never alone and that I can trust Him to be there holding her when I can't.

It's probably going to be a long night. I will update and let everyone know how she is doing as soon as I can. Thank you so much for remembering to pray for her. I really, really appreciate knowing how much you love her. Good night. Trish

Sweetness!


I love this little one. She is so full of sweetness. The better she begins to feel the sweeter and sweeter she gets. She just smiles and giggles and plays all day. She truly is the sweetest baby I have ever known, and we are so blessed to have her in our home.

Ashley is doing very well on her new schedule. She is napping and sleeping ALL night in her nursery now. I have weaned her down to one episode of Blue and then off it goes. She fusses at me for a while and then eventually drifts off to sleep not to wake until I get her up in the morning. She is learning that the crib in the nursery is for resting and not playing. The crib in our room is still for playing(at least she thinks so). If I lay her in there she thinks the party is soon to start. I am so thankful she is settling into a routine. I can see the difference it is making in her attitude. Each morning she greets me with a smile and she can't wait for me to pick her up. I love this time with her. Once I am holding her she snuggles in close and pats me on the shoulder. It is so sweet. It only lasts for a moment and then she is ready to play. Our living room no longer belongs to the family. It has become a play room and therapy center for our sweet Ashley Kate. We have adjusted to stepping over and around her stander, her walker, her mats, her toys, her play pallets, her dinosaur(which she absolutely loves to play with and it has become our motivator for therapy), and her stack of books. Somehow she always manages to "convince" one or all of us to join her in her nonsense. At any given time of the day you may find her mommy, her daddy, her grandparents, or her siblings sprawled on the pallet encouraging her to play and discover. I love to sit back and watch her figure things out and see the look of satisfaction that comes across her face. She is such a joy and a blessing to us all. I continue to be amazed daily at the goodness of the Lord.

We will be checking in for surgery around 8:30 tomorrow morning. If all goes well we hope to back home by early afternoon. She will have some redness and a little irritation for a couple of days, but her activity should not be limited. This procedure should not be painful for her. My main concern is the anesthesia and her central line. There is always a risk of infection in her line when going in and out of it.


I hope to take her outside a little this afternoon. She loves to sit in front of the windows and watch the hummingbirds and the butterflies in the garden. She squeals each time the door opens thinking she should be allowed to go out. She actually threw a temper tantrum the other day as Dave came home from work. I was holding her on the floor and she got so angry she was standing on her own and not even realizing it. I allowed the fit to continue because it was actually serving a purpose. Now we know that she can stand if she wants too, the key phrase is "if she wants too".

Thank you for your time and your prayers. Each one of you are so appreciated. I hope you have a wonderful day. Take care and God bless. Trish

7/25/2007

Tiny Feet


One day these tiny feet will take their first steps. One day these tiny feet will run across the floors in our home. One day these tiny feet will take her into her kindergarten class. One day these tiny feet will jump and play. One day these tiny feet will walk along the beach. One day these tiny feet will dance with joy. One day these tiny feet will chase after her brother and sister. One day these tiny feet might get her into trouble. One day these tiny feet will carry her down the aisle. One day I pray these tiny feet will follow Jesus, but for today these tiny feet just melt my heart.

7/24/2007

I just HAD to share

I had the photographs we took of Ashley printed today. There are so many precious and touching images of our little princess, but there is one that I just had to share with you. I know I have told you all how very much I desire to raise her to behave like a young lady. She will eventually act like the princess I know that she is, but right now she just acts like she's... 2! So, may I present you with my absolute favorite 2 year old birthday photograph of my SWEET Ashely Kate:



This my friends is my precious, almost two year old, BOOGER picking, princess. Do you see the absolute look of joy on her face and that ornery twinkle in her eye? The more I protest the deeper she digs. I'm telling you this child brings a smile to my heart. Who could resist such a photo? I can pretty much promise you that this one will not be made into a banner for her party!

Honestly we ended up with some absolutely beautiful portraits of this baby girl. I will be sharing them with you as we count down the days to her much anticipated birthday celebration. I just HAD to share this one first.

Ash did see her eye doctor this week and we have scheduled surgery for Friday morning. I am so thankful that God has worked out the details and that we will be able to put this behind us after Friday. My prayer is that she will do great during the procedure and that in the end her left eye will be straight. I don't know what time she will go into surgery, but it shouldn't last too long. Under 30 minutes I think. After she wakes up from anesthesia we should be able to bring her home. This little procedure is nothing compared to the work she had done on them last June. We expect her to do very well. She is stronger and "healthier"( I'm not sure you can really use that word when describing our Ashley) than she has ever been. Last summer she was dying from liver failure and her spleen was gobbling up platelets faster than her body could make them. I feel as though we are in a much better place entering this surgery than the previous one. To be honest, I wish it didn't need to be done, but I am determined to do everything we possibly can to help Ash overcome her difficulties. I just don't think I could look at her one day and say that I was just too tired or too scared to have her eyes fixed. This is our window of opportunity and we need to take it. Everyone agrees (all of her doctors) that now is the time to go for it. I would really appreciate your prayers. Anesthesia is anesthesia and it always makes me nervous. I will let you know what time as soon as I find out.


She is having a really terrific week. One of her best ever, and I am so loving being her mommy. Thank you so very much for being here today. Your time spent here is really appreciated. I hope this little image of our princess brings a smile to your face. Just look at what all of those prayers have done. God is truly good, and I am just as thankful for her nose and her fingers as much as I am for the rest of her. Good night. Trish

7/23/2007

Growing Up


This is my sweet Ashley Kate sitting on the bridge that leads to "Picnic Island" at grandma and graypa's house. Oh, what adventures await this little one!

I can hardly believe how very grown up she is. This is my 2lb 12oz baby gherkin. I shake my head and rub my eyes wondering how and when she started to grow up on us. My heart overflows with joy as I look at this picture. Some times the goodness of the Lord is nothing less than amazing. He has done great things in her life, and I just love her with everything inside of me. I am so grateful. She fought so hard for so long. God is good.

Tonight we took her to the pond to take her birthday portraits. She sat there and played and smiled and behaved like she knew what she was doing. I was just so proud of her and I love the shots we got. I can't wait to have them blown up for her birthday party. I am having a hard time deciding which ones I like the best.

Days like today help the bad days begin to fade. When I see her smiley face and watch her play without a care in the world my heart just glows. Ash is amazing and she loves life. She loves blocks. She loves books. She loves Blue. She loves green beans. She loves to walk outside. She loves her daddy. She loves just about everything(I wish I could say she loves everybody, but honestly she is scared of most people. We're still working on her social skills). The most beautiful thing about my Ashley Kate is that she makes those who know her love life too. She has taught me so much.

As I type she is in her crib in the nursery playing away. She knows she is supposed to be sleeping, but there is just too much to do. Allie lays in her bed with a mask over her eyes and the quilt pulled up to her ears. I wish Ash would be a little quieter, but Allie doesn't seem to mind. She is sleeping soundly while her little sister "talks" and "talks" in the dark. I'm ready to lay down too and I have so much to thank the Father for tonight that I'm not even sure where to begin. Lucky for me He can see inside my heart and He already knows how very thankful I am to be in this moment living this life that He has given. What a blessing it is to sit back and watch our little one growing up. Good night my friends and God bless you. Trish

The Nursery Part 2

A couple of you asked if I would mind sharing a few photos of our Ashley's nursery. I don't mind, so here is my attempt to give you a peek into what we believe our sweet Ashley Kate needs to grow from a tiny gherkin into a mighty dill. The nursery is my favorite room in the house. The ceiling is painted a sky blue with puffy white clouds that float across it. I so enjoy laying on my back and picking out pictures in the clouds with the girls. The walls and her crib are painted a pale yellow to help offset all of the pink bedding. The room is very small, but just the perfect size for a tiny pickle to play in. Finding a good angle to take photos was very difficult so I hope you are able to figure out what you are looking at. Enjoy!


I have no idea why this one came out so crooked, but I promise the room isn't built on an angle and the window hanging above her crib is level. I told you finding enough room to take photos in here is difficult. Anyway, this is the view from Allie's bed into Ashely's nursery. I absolutely LOVE the old farm window that hangs above the crib. I picked it up in Canton one weekend and I think it fits beautifully in this room.
This tin sign also came from Canton(I love to browse through the vendors whenever I get the chance to run over there). I firmly believe in the message portrayed here. Kissing those precious foreheads goodnight is the highlight of my day. I wouldn't miss it for the world!
This is one of the two doll house units we built for Ashley's room. We had to come up with a storage solution for her clothing and linens. They are built from floor to ceiling and firmly attached to the walls so that when she becomes a climber there is absolutely no way they are coming down(I'm dreaming big!) I love everything about them from the scalloped roof tops to the pastel edges we painted on the fronts of all the shelves. The picket fences are actually gates that open up to store more linen. I love a good set of linens(especially when they have her name or initials embroidered on them).
This next photo is one of my favorite pieces in the nursery. Its and old coat rack that used to be in the kids classroom when they were pre-schoolers. I simply "white washed" it in a pale yellow to match the nursery and added the little bird and nest to the top of it. It holds Allison's old dress up hats and the ballet tu-tu her daddy bought for her the Christmas before she was born. The wreath I wore on our wedding day also resides on one of the hooks. I don't know why I love this piece so much but theres just something about it that makes it fit perfectly into our Ashely's room.
This photo is just a close up of the farm window that hangs above the crib. At one time I had black and white photos of Ashley's tiny hands and feet behind the panes of glass. It was precious. I fully intend on putting them back I just took them down to paint the scripture on the wall and then we were called to transplant the next week. Its just something I haven't gotten around to doing yet since coming back home, but I will.
This is another angle of one of the doll house units. As you step into the nursery from Allie's room they are on your right and left. It was a perfect solution to our need for storage and it just made the nursery a little more magical once they were finished. The cross that you see hanging on the outside was a gift sent to our Ashely. It was given to her from a mommy who also has a Kate who was born at 28 weeks. Although we have never met, once I read her letter I felt as though I knew them and I envisioned us being old friends. I love the pastel mosaic pattern on the cross. It reminds me to pray for Kate each morning as I walk into our Ashley's nursery. Thank you Jule for the gift!
This is the last photo(I'm sure you are completely bored by now). Can you kind of tell where the doll houses sit in the nursery from this view? As I said they are on your right and left sides as you enter the nursery from Allie's room. She has a perfect view into her little sister's crib from her bed. The crib has to be my very favorite part of the room. Dave built this crib while we were expecting our Blake to be born. It was his, then Allies, then my niece Jessica's, and now it belongs to our Ashley. I gave it a pale yellow "white washing" and then sanded the heck out of it to make it look even older. I love anything that appears to be worn and well used. Just something about it that makes me think it was very loved and appreciated and in this case it has been. My favorite images of my babies happen to have been in this very crib. I still remember the way Blake looked as he lay sleeping inside of it. I remember my Allison playing peek a boo with me through the slits, and now I have precious visions of my Ashley Kate at home in her crib where she belongs.

I hope you enjoyed the little tour. God has been so very good to us through the years and I am so thankful for the little yellow house He has given to us to call our home. I have always believed that less is more, and it doesn't take much to make it feel like home. Our house if full of memories in the making and thats what makes it feel so special. I am so thankful to be back home.

7/22/2007

The Nursery

Tonight I tucked the girls into their room for the first time together. The nursery is an adorable little room that sits inside of Allison's room. From the first moment we walked through our house I could envision the nursery tucked inside of what at that time was the closet to what would become Allie's room. I'm sure you may be doubting how adorable a nursery inside of a closet could actually be, but I assure you it in no way resembles a closet. You would have never guessed it was once a closet if I hadn't told you. Anyway, my girls are both in their beds, inside the room that they share for the very first time, and I am loving the feeling it gives me.

We remodeled the huge closet in Allison's room shortly after Ashley was born. The kids helped us knock down walls and build doll house units(that store Ash's clothes and linens. They are the sweetest things you have ever seen!) and paint and decorate in anticipation of Ashley's arrival. We had no idea that we would have to wait for six months before she ever came home to see it. Allie asked night after night when Ash would be home so they could begin sharing their room. Once Ash did come home she was so fragile and so ill that we were never able to tuck her into the crib inside of the nursery. She had to be placed in a crib in our room, next to our bed instead. Allie tried to understand, but she was broken hearted. Several nights we spent our tuck in time talking about how much she was looking forward to Ash being in their room so she could help take care of her. She talked about how she couldn't wait for Ash to be big enough to want to sleep next to her. She was really looking forward to having her close by.

Last night was Ashley's first night to sleep in her nursery. She will be two in less than two weeks. She spent exactly one year of her two sleeping in cribs inside of ICUs. The other 11 and 1/2 months she has been next to us in our room. Last night I got brave enough to lay her down in the crib that was once Blake's, and then Allie's and is now hers. It was built almost 12 years ago by her daddy. She slept peacefully while I sat up and watched to make sure she was safe. This morning I went in to wake her up around 9 and I found her sleeping with both hands behind her head. She was just so cute and she looked as if she was always meant to be there.

Allie came home today. Tonight I tucked her into bed and then went and picked up her baby sister. As I brought her into the nursery to place her in the crib I could see the smile spread across that big sister's face. She had waited so long and I was thrilled to watch out of the corner of my eye as she nestled herself under her quilt and readied herself to be on "call". I have no idea if Ash will always be welcome in their room, but for now she is exactly where she belongs. After two long years of anticipation I can only imagine what dreams are dancing around in my nine year olds head.

7/21/2007

She's A Happy Girl


In the early days of our sweet Ashley Kate's life, the days before we had even met our tiny baby girl we prayed this prayer, "Father, let her be happy. Please allow her to give and receive love. " This was our prayer. We had prayed and pleaded with God for days and days. In the beginning Dave and I were given no access to her. We had no idea what obstacles she was facing. We had no idea how medically fragile she was. We only knew that she was here and that we loved her. My prayer quickly became, "let her be happy." When you are faced with the unknown and the list of possibilities is endless you quickly decide what is most important to you. This is what we decided on and this is what we prayed.

Each day as I look on her smiley face I reminded how much God loves us. He hears our prayers and He answers them. Oh, He may not always answer in the way I would like for Him too, but He does answer and in this instance He did allow her to be so, so happy. My Ashley has joy and happiness that spills out all over her face. All I do is say her name and she shares this amazing smile with me. She does so much more than give and receive love. God is good and He is faithful.

Today I am looking at my little one and realizing that she is now a big girl. In just two short weeks she will enter into toddler hood. She may not actually be toddling, but she is no longer a baby. She knows what she wants and she knows how to get it. Flash that smile, and presto we give in to her every whim. The other night at dinner as I was "forced" to hold open and read Good Night Moon for the millionth time as I tried to eat. I told Dave, "This child is out of control." He laughed and replied, "No she's not. She is in complete control and we are the ones who are out of control. We have lost it." How true! I just love her and her Good night Moon even if it is in the middle of dinner.

She has had a wonderful day. She awoke very happy and ready to begin her new schedule. This was her first day without being connected to her feeding pump for 20 hours straight. It was so exciting to see her experience her new freedom. She is now eating 3 meals a day and receiving 2oz. of formula in a bolus feed after she finishes her food. This allows her to be free from her feeding tube and pump until 7:00 p.m. She has done great! In just 3 weeks she will have earned herself another 3 hours of freedom as we stretch her tummy into taking 3 1/2 oz after her meals. Then she will only be connected from 10 until 10 allowing her an entire day without ANY thing being connected to her. Along with her new feeding schedule she is on a nap schedule as well. I wake her at 9a.m. and she eats her first meal at 10. After her mid morning meal she plays for an hour and then goes down for a two hour nap. Upon waking she plays another hour before her second meal and then spends the next two playing. At 4:00 she goes down for her second nap and is awakened at 5 to play for an hour before dinner. Then she stays up until 10 where she is hooked up to her pump, meds are given and she goes down to sleep (hopefully without Blue) until the next morning. We have had 2 full nights of sleep and it has been wonderful! Can you see me smiling? I love life without chemo! This is the first time she has been on any type of schedule in over a year. I am a happy mommy, and she of course is a happy baby.


I feel myself relaxing and breathing easier. It is wonderful. I know that we still have many, many obstacles ahead of us, but I also know who God is and what He has done so far in her life. She's a happy girl and her eyes, her smile, and her countenance reflect that. What more could a mommy ask for?

7/20/2007

Now for the good stuff

So many good and positive things were said while we were in Omaha. There was a little disappointment, but the excitement over the good stuff far out weighed it. I am going to do my best to share as much of it as I can with you.

EVERYONE who saw our Ashley had wonderful things to say about the way she looked. Keep in mind this team of doctors and nurses are the very ones who saw our sweet baby through the very worst days of her life. They have seen her before transplant when she was so weak and tiny and jaundiced. They have seen her go through transplant. They have seen her battle back from the edge time and time again. They are the ones who administered CPR to bring her out of her cardiac arrest. They are the ones who have fought to keep her alive. They are the ones who I am sure wondered just as we did if she would pull through. They are the ones who used the skills and talents God gave them to take care of a very fragile, very sick, very loved little girl. They are the ones who had a front row seat to the many miracles He performed in her life and in her health. I love this team of people and I respect their opinions and what they have to say. So when they tell me she looks better than ever it makes me smile. They thought she had grown, had matured, and HAD progressed. Those words were like medicine to a mommy's hurting heart.

Some of the biggest decisions made during our trip concerned Ash's future operations. We are going to wait until next spring to do her take down. We discussed her ability to remove her own bags and "finger paint" with blood from her bowel and they assure me she can not harm the loop of bowel that is outside of her abdomen. With this knowledge we have opted to wait and allow Ash to just be a little girl for awhile. Free from ICUs and hospitals and Omaha. We would love to give her the opportunity to feel good and see what she can learn and accomplish during this time. They did agree to allow us to return to her eye doctor and get the remaining portion of her strabismus correction completed. Ashley had the first half of the eye surgery last June and then we were called to transplant before it was time to complete it. They allowed us to keep her central line in hopes of getting her on the surgery schedule and having her eyes fixed. She has an appointment on Monday and we will know more after she sees her doctor. This surgery does not require her to stay in the hospital. She will be in and out in one day and will come home to recover.

We have also been allowed to reduce Ashley's medications list. She came home on 14 medications and now she is down to only 5. My favorite change in her meds concerns the steroid she is required to take. Her Prednisone will go from daily to every other day. YEAH!!! This is huge and it is the first step in weaning her off of it and hopefully she will be steroid free soon. We will also begin weaning her blood pressure med and in a matter of a couple of months she may be free of the patch that she currently wears. We are very excited about this. Two of the remaining three meds will be stopped at her one year transplant anniversary. So in September there will be a very real possibility of Ash only being given her Prograf(which will be a lifetime anti rejection medication) and her every other day Prednisone. These are huge changes in her routine and I believe it will make for a happier, more "normal" little girl.

Relaxing was the next thing that came up. We have been given the go ahead to try and relax with her a little bit. Not that they actually believe I will be able to accomplish this. What does this mean for us? It means that they said "GO. ENJOY taking her to visit your family.(this will include her birthday:)" We can take Ash into a restaurant, take her on vacation with us to Colorado as we watch the Tarheels play in a national tournament, take her out in public, and if I can figure out how to keep her quiet we can take her to church. She will not be able to go to the nursery because she does require special care with her central line, mickey, and ostomy, but if she would sit still and not jabber too much we might be able to sit in the balcony as a family on Sunday morning. This would be wonderful!!!

Food was next on the list. Ash can eat just about anything she wants except for sugar and sweets. She can try anything she would like. They even told me she could have sugar free koolaid(of course I would never do this, but it was nice to hear). Teaching Ash to eat will be a huge undertaking and we have been working on it, but just knowing we can feed her mashed potatoes brought a smile to my face. To this point she has only eaten organic baby foods and only had sterile water to drink. Her world is about to open up and we are excited about it. She can have a banana! I can't wait to see her try that again.

Of course we discussed her delays and the fact that she is not mobile at two years old, but our transplant doctor told us that if she has not made progress(which she BELIEVES she will) by the time she is three then maybe we will look a little harder at it. For now we are going to let Ash be Ash and continue working hard, but more importantly we are going to focus on loving this little one and enjoying each baby "step" she makes toward a more normal life. There will always be someone who out there who will want to label her and diagnose her with something, but we aren't really interested in those labels. Ashley is amazing and wonderful and her life is miraculous and we are privileged to be her mom and dad. One day at a time, one milestone at a time, one miracle at a time. This is our plan.

What a joy it was to visit with our friends. To share dinner, or conversation, or hugs, or lunch, or smiles in the hallways with them all. So many we didn't have the opportunity to catch up with, but we will see them next time. I couldn't bring myself to step onto the floor of the PICU. I'm not there yet with my own set of memories. A lot of tears were shed in those hallways not only for my baby but for my precious friends children. Someday I believe I will be able to go there, but this was not the day. I am just thankful to be raising my Ashley outside of those walls.


I know this post is long so I will close. Thank you for being here today. Thank you for praying and encouraging our hearts on this journey. Enjoy your evening with your families. Trish

7/19/2007

So much to share

I have so very much to share with you all but, we have just arrived home from Omaha and the busiest of our days there.

We had hoped to hear that all was clear and that there was nothing, absolutely nothing to be concerned about. We are so very close to what we had hoped. Let me start by saying that our God is amazing and He has done amazing things in the life of our Ashley and in this family. I know it is by His hand and His will alone that the scans look so very good. We had shared that there was a small, very small (6mm to be exact) spot that caused us a little concern. When we met with the doctor this morning and went over the radiologists report this spot caused them a little concern as well. The conclusion is this. It may be a small residual of the larger tumor that was once there. It may be scar tissue left on the lung from the large tumor, or it may be a little infection of something entirely different. At this point there is no way to tell. Our plan? Watch it and monitor it carefully. We will repeat the scan in a month and see if it has grown. If it has grown then it is more than likely more tumor that will need to be gone after. If it is gone(which is my prayer) then no worries. If it is the same size then it is probably scar tissue. I personally feel very positive about it not being cancerous. I don't know why I feel this, but the longer I think about it this is what I am feeling. To be completely honest with you this morning it stung me a little bit to hear that there was a small concern. Tonight I have more peace about it.

The other concern is her spleen. The oncologist feels as though it is a bigger concern than the remaining spot in her lung. Possible PTLD in the spleen? Maybe, but our transplant surgeon does not agree. The plan? Look at it again on CT scan next month. The report stated that it is larger than it should be, but it has always been large even before the diagnosis. Worried? I am trying not to be. We compared scans taken in November, February, and this week. Dave and I think it is the same size. We just have to wait and see what it does now.

All in all the appointments went well today. Like I said there is so much I want to write about and share with you. So many blessings and encouragements that were sprinkled in throughout our trip. I am overcome with the goodness of the Lord and how He has smiled upon Dave and I by allowing us to walk along side our sweet Ashley Kate. Each and everyday is a gift and I never want to take it for granted. I love being her mommy and I love watching what He is doing in her life. I promise to share more tomorrow, but tonight I know you wanted to hear this news first. Thank you, thank you, thank you a million times over for loving our Ashley and for praying for her. I will never be able to thank you enough for sticking it out with us. I love you guys. Good night. Trish

P.S. Holly, Thank you for having lunch with us today. You brought a smile to my heart. Kiss Caleb for me. Take care. Trish

7/18/2007

Before and After


This is the scan of Ashley's lungs taken Feb. 21st. The large, gray circles on the bottom are the two largest tumors that were located. When I first saw the pictures I was concerned. Then they held up a ruler to the pictures and showed me the actual size of what had grown inside of her lungs and I was terrified. We quickly decided that a lung biopsy, spinal tap and bone marrow biopsy were necessary to determine exactly what we were seeing. The rest is history. Part of Ashley's story.




This is the scan of Ashley's lungs taken on Tuesday, July 17th. Its pretty easy to see that those large circles are no longer there. Dave and I are hoping to hear that this part of Ashley's story is over. We are praying that tomorrow we are told that she no longer has PTLD and that chemotherapy is just history for her. God has taken her this far and I am believing that He plans on taking her a lot farther.

We still haven't discussed anything with her doctors but to say that we are encouraged is an understatement. When I saw Tuesday's scan I felt as though a very heavy weight had been lifted off of my heart and I haven't stopped smiling. We still need to hear the official words, but we are definitely sleeping better than we have in months. To see our sweet Ashley playing on the bed tonight and causing all kinds of trouble is a beautiful sight. She is amazing, and everyday she lives reminds me of God's grace and mercy. Walking through the halls of this hospital I am haunted by memories of the harder days. The days when I was so unsure of her future. At the same time those haunting memories strengthen my faith in Him. He brought her through those days and He has allowed her to spend another day with her mommy and daddy. Tonight we are nothing but thankful.

Thank you for your prayers. You have faithfully walked beside on us on the hard days as well as the easier ones. I know it has been difficult. Tomorrow I hope to share one of the easier, happier ones with all of you. Take care my friends. You are loved. Trish

Still Here

I just thought we would pop in the infusion center this morning for Ash's cytogam. Silly me. Nothing is easy for Ash. We began at 10 and we are still here at almost 2.

This is the 10th time she has gotten an infusion of cytogam and she has never had any trouble with the infusion before. Today her blood pressure and temperature are far two low and this is causing much delay. I have lost count as to how many times we have had to stop the pump. They even decided to give benadryl to help with the reaction(which has caused her to fall asleep) and we were just told that even when the infusion finally finishes we will have to stick around until she can wake up.

Just a little kink in the plans for the day, but we don't mind. Our concern as always is that Ash is ok. I'm not sure why she is struggling with this , but I am thankful they are being careful with her.

Still hoping to have time to connect with a few more friends before the day's end.

Getting Her Fix

We had such a wonderful time at dinner last night. We talked. We laughed. We visited. We laughed. We remembered. We laughed. We caught up on new jobs and wedding plans. We laughed and then we laughed so more. It was such a treat. Dave did find that Omaha steak he was searching for. It was a really great evening. We were so encouraged by their reaction to our Ashley. "She looks like a toddler" they exclaimed. It did my heart SO good to hear this. Thank you Em and Heather for inviting us out and for taking time to visit. You touched our hearts last night and we look forward to seeing you again soon.

Ash has been going through withdraws. This time its not drug related its Blue related. At this very moment she is sitting on her daddy's lap, getting her cytogam infusion, and clapping to Blues Clues. We only brought one of her DVDs with us and it got left in the car in the parking garage on the other side of the campus from where we are staying. So we thought this would be a good time to try and ease her into a little rehab. Let me just share with you that this morning we are VERY thankful for the Childlife services here at the hospital. They brought in three episodes and our Ashley's morning is going much better now that she is hanging out with Steve, Joe, and Blue. I'm telling you this is getting ridiculous, but we are trying.

From what we can tell by looking at the disk of Ashley's scans we are feeling pretty good about where she is. Its not official by any means but there are DRASTIC changes in the pictures of her lungs and we are very encouraged. We are looking forward to discussing them with Oncology tomorrow morning. There is just one small spot that we are concerned with where the largest of the 4 tumors was located, but it has obviously been attacked and reduced by the chemo and we are so thankful. We will share with you what tomorrow's discussions bring.

Ash should be finishing up her infusion in the next hour or so, and then we are off to grab some lunch. This afternoon and evening we are hoping to meet up with a couple more friends to hug necks, deliver paintings, and catch up. I am really looking forward to seeing them. I hope it all works out. Thank you for your encouraging words this week and for all of your prayers concerning this trip. We have lots and lots of things to discuss with our team tomorrow and we are excited about having some sort of plan for the upcoming months. As always you are loved and appreciated. Take care today and God bless. Trish

7/17/2007

Peek A BOO

I just opened my eyes(Dave and I drifted off while we were waiting on the pickle to wake up) and I saw her playing "peek a boo" all by herself as if she were waiting on us to come out from sedation. I guess shes ready to go! Her scan was finished by 10:40, but her sedation lasted a while longer. She seems to have woke up in a really good mood and is jabbering and playing.

This morning as we prepared to dress her we noticed that her mickey button was inflamed and bleeding. It looked terrible and seem to have happened over night. I am suspecting that the cellulitis infection she battled a couple of weeks didn't clear up all the way and has decided to show itself again. I put in a call to transplant and they said they would like to just take a peek at it this afternoon so we are preparing for a clinic visit around 2:00. Now that she is awake it looks better than it did first thing this morning, but we might as well be careful with it. Something is definitely causing it to flare up.

Last night we accidentally left one of our packages on the flight. It contained photos, Allie's paintings, and gifts for our friends we had planned on giving them. Our flight coordinator called this morning and let us know they had found it and they want to send it to us overnight. They are such a blessing! My heart was just sick about not having it, but I had decided we would just get back home and mail the things to them. So I want to say , "Thank You, Zack! You have been such a blessing to us and we truly appreciate you."

We are looking forward to meeting with a couple of Ashley's nurses for dinner tonight. Hopefully Dave will find the steak he has his heart set on. Tomorrow we are going to try and arrange to visit with one of Ash's transplant friends who always make us smile. There is just something about this little girl that makes you feel good all over. She was the very first person we met the day we came to Omaha and she stole our hearts from that brief encounter. Her name is Daisy and I have never met a person named more appropriately. Every thing I feel when I think of daises I feel when I think of our friend. She is precious!

Thank you for your prayers today. Dave and I are going to go pick up a copy of the scans and pop it in to take a little peek for ourselves. We primarily want to get a look at her lungs and see if we can tell a difference from what I saw in February. We won't really know anything until Thursday afternoon, but were curious. I hope you enjoy your day and that you know how much you are loved and appreciated by our family. You have been such a support and a blessing to us over the past year. Take care and God Bless. Trish

Dave's Plan

I am a guy, I like to keep things simple. So here is my plan for today. Get her in, get her looked at, get her out, then find a good Omaha steak. The rest is just details.

DAVE

7/16/2007

Better Together

We're here. The flight went very well. Ash did much better than I was expecting. She played a little and then slept the rest of the way. The flight crew was excellent as always. We have been so blessed by.this group of people. Everyone involved in each of our flights to and from Omaha have been fabulous. This is our third time flying with them and they do a great job. I am so thankful for them.

We didn't make it to the hospital until a little after 10:00 and then by the time we got Ash all fed and settled it was after 11:00. She has been jabbering and playing since we came off the plane. I think she may be winding down a little. Her conversations are getting a little quieter by the minute. Her IV fluids will begin at midnight and then she will be NPO until the tests are complete. We fed her an extra dinner late tonight to help her not feel quite so hungry in the morning. I hope it works.

I have such a peace tonight. I have been struggling for so long but things are just different tonight. Having Dave here with me is a definite source of strength. We are just better when we are together. I guess thats the way its supposed to be. He has the ability to make me smile and when I'm smiling life is good. As we walked through the halls tonight he would remind me of different things the kids had said or done in that particular spot and it just brought such joy to my heart. As the middle elevator opened up he said, "Thats the one Allie would have picked." He's right. She always chose the middle of the three so she would have a "50/50 shot". Of course it made me smile remembering her saying those words. We've laughed a lot. We've talked a lot. We've remembered a lot. I think all of that has helped with the anxiety of this situation. I'm glad he was able to come with us.

I really have no idea what the tests will tell us, but whatever it is we will face it with the knowledge that the Father gave this little girl to us to change us, to grow us, and to show us what faith is all about. She has definitely done all of those things and so much more. We love her more than my words could ever describe. She is a gift and we treasure each moment we are given with her.

Sheltered under the Shadow

We are almost ready to go. Ash and I have packed our bags and we are now waiting for Dave to finish his day at the office before leaving for the airport. I am trying to find the right words to accurately describe the way I have been feeling lately. I don't know if nervous or anxious or on edge or what would be the appropriate term to use. All I know is that it has felt like everything inside of me has been jittery and jumpy all last week and into the weekend, but today it seems different.

Yesterday afternoon between the games I was sitting under one of the shade trees and I found myself talking to the Father and thanking Him for that tree. It was providing us with just the right amount of shelter from the hot sun. It was providing us with protection from the heat. It was providing us with a place to rest as we waited. It was sheltering us with the shadow of its branches. I was loving that tree and I was loving God for creating that tree and allowing it to shelter us. On the drive home I was still thinking about that tree. What a great job it had done at making us feel so comfortable. I just couldn't stop being thankful for it.

Today I have been thinking a lot about the Father and how He stands next to me during such difficult times and offers me a shelter under the shadow of His arms. I keep imaging myself standing next to Him and I can see His arms around me. It may sound crazy to some, but it is giving me the peace I so need as we prepare for this trip. I'm just hanging out with Him and talking to Him about all that is happening around me. He really is a big God and I really do believe He has big plans for our Ashley. Even if things don't go the way I am hoping this week I still know that He is going to be standing there next to us providing us a place to rest as He stretches out His arms to protect us. It felt so nice under the shadow of that tree yesterday afternoon and it feels really nice hanging out under His shadow today.

Thank you for your prayers. I know you are praying because I feel it. Ash is really grumpy today. I wonder if she knows were leaving home tonight? Whatever it is I hope it passes so she doesn't seem hateful to everyone this week. I would love for her to show off her smile and her silly self while we are there, but I'm not going to hold my breath. She tends to get pretty upset and frightened when they are touching her and messing with her. Unfortunately that's what this entire trip is about. Everyone is going to be touching her. Please pray for her attitude to be as sweet as possible so the week isn't miserable for her. I will try and post this evening to let you all know that we arrived safely. Once we get her settled in and her IV hooked up for tomorrow's scans we should have some down time in our room. Until then take care and God bless. Trish

7/15/2007

Back Home and Preparing to Leave

We have just arrived home and our Tarheels did indeed win their 3rd state championship title. We had so much fun watching them play and do what they love to do. What a blessing it was to be there with them this weekend. The weather was so nice and the ball fields were surrounded by big, beautiful shade trees that provided us with the perfect seats for a championship round of games. As you looked across the fields and past the fence you could see the lake and the sailboats as they sailed by. It was really beautiful and it was even more enjoyable because the boys played so well. We are very, very proud of them.

Ash had a really good weekend and she now sits in the floor with her daddy reading princess stories and making lots of noise. I think she is trying to drown out his voice. The more he reads to her the louder she gets and it is actually starting to be very funny. She is so rotten and ornery! We are praising God for a GOOD nights sleep last night. Ash slept the entire night without ANY Blues Clues episodes. She was so exhausted from her run of all night marathons and refusals to rest that it finally caught up with her. We did not wake until 7 a.m. and it was probably the bests nights rest I have had in over a month. I was so very thankful. Tonight may be a different story. She is up and vocal and ready to go. I haven't heard her stop "talking" since we came in the door. She is really giving her daddy the what for in there.


Our Allie decided she would rather take the opportunity to visit her cousins this week instead of traveling to Omaha with us. She was allowed to go on one condition. She had to promise to call her dad every single night. She tends to go visit and then gets to busy playing to have time to talk to us on the phone and he told her this time she had to call and tell him how much she was missing him or she wasn't going. She just grinned a silly grin and said, "Sure, sure, whatever you ask." I have a feeling she won't remember. Although I am already missing her I am glad she is having so much fun. Blake is staying here in town with his grandparents because he has ball practice. His cousin has come to hang out with him this week and keep him company while Dave and I travel with Ash. They are already having a great time.


Once again the family is going to be separated, but thankfully it will only be for a short period of time. Dave and I have been discussing our goals for this week and the things we would like to have accomplished while we are in Omaha. We are making a list of our questions so we won't forget to cover something during our short visit. I am really praying for answers and direction as we prepare to go. As nervous as I am about flying(I am really the worst passenger in the air you have ever seen), the cancer, and the scans I am also feeling blessed by the friendships we developed during our time there and the opportunity to visit. God really did bring some amazing, encouraging, and supportive people into our lives during our stay in Omaha. Along with the development of those friendships He also brought each of you into our lives and we are truly better people because of it. He used you to minister to us in so many ways and I really believe I would have fallen apart without you. Thank you so much for being part of Ashley's story and for being part of our lives. I hope you know how much you are loved.

Ash is still hollering in the other room and Dave came in and asked me if I had any idea what she is talking about. I really have no idea, but I can say that I am thankful to hear it even if it is becoming a little loud. Maybe she is trying to let me know all the things she thinks her little princess self needs to take with her on this trip. I really am going to try and limit her to only 2 bags. We'll see if that happens or not.

Thanks for checking on our sweet Ashley Kate today. I hope you had a wonderful day and I will visit with you tomorrow. Good night and God bless. Trish

7/14/2007

Hanging Out

Well its almost 4:30 and Ash and I are just hanging out together doing laundry. I have given up on sleeping and am hoping she and I will enjoy a little nap tomorrow. The good thing about being up all night is that it gives me plenty of opportunity to get the things around the house all caught up and by morning light the house will be shiny clean and laundry free. Yeah us!

We are very excited about this weekend. Our Tarheels will be playing in the state tournament in Dallas. Due to the amounts of rain here in Texas it has been three weeks since the boys last played any ball. All of their tournaments have been cancelled. So if tomorrow happens without a cancellation we will all be thrilled. I'm not sure that we are expecting a state title this year since they haven't taken the field in so long, but neither have the other teams in the Dallas area. Last year our Tarheels were blessed with two State titles and a National runners up. It was very, very exciting to see them do so well. They plan on traveling to Steamboat Springs, CO in a few weeks for their National tournament this year and they have been working hard to raise their own money for the trip.

Tonight we enjoyed just hanging out around the house together. The kids decided they would like to have breakfast for dinner and that they would like to cook it themselves. That was really fun to watch. I sat back and smiled as I listened to them share cooking tips with each other. Blake tried to convince Allie that she would really like crushed red peppers in her eggs if she would just try it. No going! She asked him to just leave her eggs alone and let her have them the way she has always eaten them. She and I are so much alike. Dave and Blake will try anything at least once and Allie and I are content to just keep things the way they are. They were both so very funny. Ash wasn't going for bacon and eggs. She settled on herb chicken, pasta and green beans. I am so proud of the way she has been eating lately. Since her chemo cycles have ended she has regained her appetite and is really enjoying food. This week she made huge progress by eating a level three baby food. She did so well learning not to gag on the thicker and chunkier food. She also surprised us by taking a few bites of a cracker. That was real progress.


I went to tuck the kids in and found them in opposite rooms tonight. Allie said she couldn't sleep in her room because she thought she heard a bug in there. I looked and couldn't find one, but there was no convincing her of it. Blake decided he would sleep in her room(it takes a real man to handle all of that pink bedding the night before a big game) and slay the "dragon" bug if it decided to attack.

Just before 5:00 tonight I got the call that the insurance approval had been worked out. That was such a huge blessing. I am so appreciative to my friend on the other end of the phone who worked all day figuring out what to do. It looks as though we will be flying out around 7p.m. Monday evening.

It seems as though my sweet Ashley Kate has finally drifted off to sleep. I don't think I'll join her at this hour because I would probably not hear the alarm at 6 if I did. I might as well just fold the last two loads of laundry before jumping into the shower. I hope you all have a great weekend and have the opportunity to do the things that make your hearts smile. I know we will be smiling if the rain holds off in Dallas and our boys can actually swing their bats a little. Take care today and may God Bless you. Trish

7/13/2007

Details

It looks as though a few important details concerning our trip to Omaha may have been overlooked. Things like a "prior authorization for consent to be treated out of state" from the insurance company. Just a little detail I stumbled across two days ago. I had no idea that this was necessary. No one ever mentioned it to us before and some one has always gotten one without needing us to secure it ourselves in the past. I know it was a God thing that I found out about this before we flew out there. What does this mean for us? It means that we absolutely, positively can not take on the costs of next weeks scans, tests, infusions, and appointments. So we may not be going.


I have always taken the attitude that I am not going to worry about the financial struggles of Ashley's care. It does absolutely NO good to stress out about these things. I trust God to provide for her care and He always does. If the funds are there to get her what she needs then they have come directly from His hands. If they are not there at the time then I wait to see what amazing, miraculous thing He has in store next because I tell you that He always has a plan to take care of it. I'm a little frustrated this morning to discover that it takes 3 to 4 business days to acquire this important number knowing that the air ambulance flight WAS approved for Monday and all of her tests are scheduled for next week, but what can I do? Nothing but pray and wait.

So this morning I feel as though everything is up in the air. I have been on the phone for days struggling with insurance and it looks as though it will be another one of those days. Let me make perfectly clear that I am MORE than grateful for the insurance coverage. Without it they would not have given Ash her transplant and she would not be with us today. Like I said, God always takes care of the details and I just have to wait and see what is going to happen in this situation. He will either have us wait for some reason known only to Him or He will make a way to get us the number ASAP.

Raising this little gherkin has never been easy, but it has been so worth it.

Cancers

Not sleeping well tonight. The closer it gets to Monday and our return trip to Omaha the more I find myself wondering, wishing, hoping and praying for the tests to show a complete remission. As I lay in bed and think of cancer and how it seems to be surrounding me this week the tears fall freely from my eyes.

A couple of years ago I knew no one with cancer. The disease had yet to make its way into my circle or my family. I never gave it much thought. Lately, especially this week it consumes my thoughts.

Cancer has now touched my circle. It has invaded my family. It has invaded my circle of friends.

My heart aches for those who are battling this disease. You can't see it outwardly, but it is fighting to destroy them. Nicole has cancer. Amy has cancer. Sweet Heather has cancer. My dear friends father, Sam, has cancer. My pastor has cancer. My daughter has cancer. My aunt will bury her son this week. He died of cancer. It is a disease that seems to come out of no where. It attacks the strong. It attacks the weak. It attacks the old. It attacks the young. Tonight the knowledge of these precious ones who are fighting for their very lives attacks my soul.

I cry out to the Father to heal them. To heal their hurts. Physical and Emotional. My sweet Ashley Kate has no idea what battle she has been fighting. She doesn't understand what is going on and I thank God for that. I see this as His mercy. She continues to laugh and play even on the hard days.

Two things that my Ashley does not have going for her in this fight. The first, it was diagnosed within one year of her transplant. The likely hood of it coming back and trying to take her life is very, very real. The second, she has monoclonal cells rather than poly clonal. Upon diagnosis her little body had already begun to make single antibodies rather than producing several.

Something my sweet Ashley Kate does have going for her. She has a body of supporters who faithfully pray for her. She also has a heavenly Father who loves her and who I BELIEVE has a bigger plan for her life.

If the cancer is still there and if they tell us we have to go another round with it then I will trust that it is in His plan for my little one. The thought of it showing up in her scan next week causes huge tears to fall, but if her battle can bring glory to Him then we will accept it and keep fighting. If one life is changed by what He is doing in her life and in her story then it will have been worth it all. She is tough. Not just a baby gherkin anymore. She grows stronger and more alive with each passing day.

She sleeps and I lie awake afraid to turn Blue off for fear of waking her. She rests with no knowledge of what is in store for her next week and I pray for rest to come to my mind so that I may sleep too.

7/12/2007

Your Never to Old

Dave just came in from tucking the kids into bed. I could hear a lot of commotion coming from that side of the house, but when dad tucks them in he usually causes the commotion. The kids love it! I asked Dave, "Ok, what did you do to our son?" (I could hear Blake squealing)

"Nothing. Why" He said with a grin on his face.

"I could hear him squealing like a girl. You did something to him didn't you."

"I had my arms wrapped him around and I whispered in his ear your never too old for a zerbert."

"NO! Dad. Don't Do it."

"Your getting a zerbert or a kiss from me so which one is it going to be?"

"Neither I'll just take a hug."

"Nope! Which one?"

"I'll scream in your ear"

Dave said, "So your gonna scream like a little girl. In my ear?"

"Yep", Blake said proudly.

So Dave takes in a deep breath preparing to lay one on him and then the commotion began(hence all of the girly squealing in Dave's ear).

After much nonsense that they both thoroughly enjoyed Dave decides he will settle for just a hug.

"Ok, ok, I'll take a hug, but not a wimpy, girly kind of hug. Its gotta be a real one."

Blake agrees and while hugging his dad Dave places a quick kiss on his shoulder.

The wonderful thing about this story is that you really never are to old to be loved on by your dad. I am so thankful that Blake, Allie, and Ash have a dad who loves them like he does. Tonight I was reminded that not every house and not every child has a dad like Dave and my heart breaks for those who are missing out.

Today I'm Thankful For:


Cribs with fresh Sheets

Nursery's with soft Music

Babies with puffy Cheeks

Naptimes that allow Mommies to Rest

Warm blankets quilted by Grandma's


Hair that comes back when Chemo is finished
(even though it is brittle and unruly)

Tiny hands that I can Hold

Little people who loved to be rocked

Smiles that spread from ear to ear

Giggles that fill the rooms of our Home

Story books with pretty princess' and Happy endings

Clothes made of soft pink fabrics

Moments given to make Memories out of

Good Friends and Family to share it all with

Sitting here today I find myself being being overcome with thanksgiving for all that the Father has surrounded me with. Its moments like this that I know I am where I am supposed to be doing the things I am supposed to be doing. I am content and it is a wonderful place to find myself in. Thank you Father for loving me so much and for trusting me with all of this.

7/11/2007

You could have called her...

...Carol. You know like ABC."

"What are you talking about?" , I asked.

"Allison, Blake, and Carol. That would have been a lot easier!"

I couldn't help but laugh. Dave and I are forever calling Allie "Ashley" or Ashley "Allie" by mistake. Tonight Dave handed Allie an envelope to give to me to send out and Allie asked him why her name was on it. "It's not." he said. "Yes it is", Allie said. "No, I put Ashley's name on there. Didn't I?" "No, daddy you didn't." Hence the conversation about Carol.

I really love having this mixed up problem. Each time I see the two of them playing, giggling, and hanging out together it just blesses my heart. The Father has given us so very much and I am so grateful that our sweet Ashley Kate is here.

I realize that she looks as though she has been in a fight in this picture, but I assure you she did this damage to herself. These are a few of the results from the "rearranging of the bowel" disaster. Not only had she covered herself in blood, but she had scratched her own nose in the process and caused her eye to swell. She looks absolutely awful this week, but I love her anyway. Tonight while she and Allie were playing on the bed together I grabbed the camera to sneak in a few snapshots, but as soon as Ashley Kate heard the camera click on she began to smile and pose. We laughed and laughed at her because she smiled each and every time I held the camera up. I wasn't looking for a posed shot. I was trying to catch her off guard, but she just felt like smiling for the camera tonight. She is such a silly pickle.

Today I spent some time reading a couple of blogs and somewhere along the way I "stumbled" upon two very precious women. I say "stumbled", but I honestly believe that I was led to find them both. I have never met them and probably never will, but through my sweet Ashley's story I have learned that it doesn't matter. You can love and pray for people whom you have never met and they can touch your heart. I am asking each of you to please, please lift up these two young women who are battling cancer tonight. They are both mommy's. One to a little boy who is only 18mths old and the other to a 12 year old young man. They have very different kinds of cancer. One is just beginning her fight and the other looks as though her fight is coming to an end. One is searching for the Father and wondering if He loves her, and the other is clinging to Him knowing how very much He does. They both are hurting. Not only do their bodies hurt tonight, but their hearts are hurting as well. I will leave you with their first names only and I will trust that you will pray. You have stood in the gap for me so many times when I had no words to pray. You have brought our baby before the Lord in the early morning hours, in the middle of the day, and all through the night. I trust that you know what a difference your prayers have made in our life and I believe they could make a difference in the lives of these beautiful women too. Their names are Amy and Nicole. I don't know too much about either of them. I just feel led to ask for your prayers for each.

I bet you can't guess what I am listening to tonight. If Steve and Joe don't move out of our house soon then I believe they will be the end of my poor husband. He is so exhausted, but he can't tell that ornery gherkin no any more than I can. If only she was old enough to start the programs over all by herself. I'm telling you this is an addiction and we must find a way to make an intervention happen(SOON!). Good night my friends and I pray you rest well with no sounds of Blue, or Clues, or Handy Dandy Notebooks running through your heads. Take Care. Trish

She has Us...

...(her mommy and her daddy) right where she wants us; wrapped around those little fingers!

Our sweet Ashely Kate is absolutely rotten! There is NO denying it. I must face the facts. This little girl has conned us and we have fallen for it. She slept ALL NIGHT LONG from midnight until 8a.m at her Nan's house without her favorite puppy Blue. Can you believe this? My mom came in this morning ready to share all of her wisdom and how she had gotten our little pickle to rest so well. Except I have a little problem. I have ALREADY tried EVERY SINGLE thing that my mom did. NONE of it works for me. I tell you that little girl has set us up! She is absolutely the funniest and orneriest little person I have ever known, and I think she is wonderful. I love this child so very much it doesn't even matter that she has taken us prisoner at night along with her accomplice Blue.

After singing myself to sleep with the words "We just figured out Blues Clues because were really smart" I slept so well. It was fabulous! Today at lunch Dave came home and told me he woke up singing the same song. All I could do was laugh which in turn made our sweet Ashley Kate laugh too. We are so messed up! We actually have been brainwashed along with our little pickle.


We tried switching to the new DVDs that grandma brought. All she did was cry big, huge tears down those puffy cheeks until we turned them off. As soon as she saw Blue running up that sidewalk to her front door she along with her tear stained cheeks began to smile and applaud. It was so funny. What are we going to do with her? I have started using her addiction to my advantage. I know its probably wrong but it works so I'm using it. The only time she is allowed to watch Blue in the daytime is when she is in her stander. Tricky huh! She hates the stander, but she loves Blue so once the show starts she stops crying, lifts her little head up, and stands up straight and tall. I think that's pretty clever. If she is going to veg out on that program she might as well do a little therapy at the same time. I'm telling you we are having to get creative with her. She is just too funny.

In case I haven't shared it lately I love this baby. She is the most amazing person. I love spending every day with her. I love playing with her. I love rocking her. I love wiping those tears off her rosy cheeks. I love watching Blake and Allie talk to her. I love seeing her cuddle up with her daddy. I love who she is, and I even love being the one who "gets" to stay up with her through the night. I just love her and I am so glad to be her mommy. Everyday with Ash is a gift and we are so very blessed.

Monday is coming too quickly for me. I am getting nervous about the trip. I am trying to distract myself by working on her birthday party details, but with all the phone calls back and forth dealing with appointments, hospitals, insurance, hotels and the like it is making me crazy. I really just want it to be behind us. In the back of my mind I know I am frightened about the scans. She will be scanned early Tuesday morning, but we won't be told the results until Thursday. She is scheduled for MRI on Tuesday, an infusion on Wednesday, and appointments with Oncology and Transplant on Thursday. In between all of this we have made plans to have dinner with a couple of our favorite nurses(we are so excited about this!), and we are hoping to make plans with one of our very special transplant friends(we can't wait to see Daisy), and another friend of mine who is one of the nurses moms. These parts of the trip I am actually looking forward too. It will be a crazy week, but hopefully we will bring good news and definite plans back with us. We are praying for clear lungs, no tumors and no signs of spreading or growth. Wouldn't that be great? I know God has done bigger things in Ash's life and this is not too hard for Him.

If you think about it today would you please keep my family members in your prayers. My aunt's son passed away from cancer this morning and my mom is now on the road traveling. I also have an unspoken request on behalf of one of my siblings and any prayers would be so very appreciated. I have been blessed with an amazing family and each of them are precious to my heart. When they hurt my heart hurts for them and how I wish I could take the tough times away from them. Broken hearts, grieving hearts, and frightened hearts are all very familiar to me, and I find comfort in knowing that in these situations just as in my Ashley's that our Father in Heaven is never caught off guard or surprised. As always you are loved and you are appreciated. Thank you so much for coming to Ashley's story today. May God bless you. Trish