My First

Last night Ashley Kate gave me my first hug. It was the sweetest moment of my life. I watch her hug and squeeze her daddy over and over again and it warms my heart, but to have those tiny arms squeeze me with all the love she can muster was so very sweet. I thought my heart would burst! My eyes filled with tears as I told her over and over how very much she is loved.

Things went very well today. I was so scared about the removing of her central line. When Ash was in the NICU we watched as the doctor removed a central line in one of her roommates and it was brutal. It was the only experience we had to draw on and it was very frightening to think that Ash would have to endure that today. Her experience was nothing like we had witnessed. It was quick. It went smoothly. It was better than I could have hoped for. For the first time in two years I did not have to care for her line before tucking her into bed.

Our clinic visit went very well. Ashely is no longer taking ANY steroids! YEAH!!! We were able to stop three more of her medications and by the end of September she will only be taking her anti-rejection. We have gone from a list of 15 to 1! We are so excited for her! We will also be down to taking only one set of labs a month. This was such good news to us. That means that Ash will only have to be stuck for blood draws one time each month. This makes me smile. I really did not expect them to say yes when I asked, but when they did I smiled inside. We discussed the possibility of using horses in Ashley's physical therapy and the answer was no. They said that she has been immunosuppressed for so long that it would not be safe for her right now. Their answer was no for now but not no forever. We will re-visit the idea in a year. As we were leaving they said to us, "We would like to see you back in clinic a year from now." Can you believe that? A year from now? YEAH ASH!!! We will consider the possibility of her take down surgery next spring but we really have no idea if we will be ready to go through it at that time. We will just wait and see.

Its been such a positive visit. We met with friends each day and enjoyed their company so very much. How blessed we are to have met them all. Most of the people we came into contact with while in Omaha were absolutely wonderful and I believe with all my heart that it was not an accident that we came here. We will forever be changed by the friendships we made.

Well, we have decided to begin our drive tonight. We are going to lay down for an hour or two and then get up and drive as far as Oklahoma. We hope to be on the road by midnight. I am going to join Ash on the bed and close my eyes for a couple of minutes before heading out. I will visit with you all tomorrow. Goodnight and God Bless. Trish

Asking for Prayers

We are on our way to Ash's appointment with transplant and to have her central line removed. The closer we get to the time the more my hands are shaking. I hate anything that causes her pain or discomfort. Your prayers during this time would be greatly appreciated. I will update this evening. Thank you for praying. Trish

Sharing

If her story can point others to Him then it has been worth telling. If the pain in her life can lead one person to Him then I pray that someday she will see and say too, "That it was all worth it." If the long nights, the lonely days, the broken moments over the last two years can change my heart the way that they have then I will tell the Father, "THANK YOU for choosing me to be her mommy. For allowing me to love her. For bringing me to this place in my life where I can say to you, "It has been worth it." I am not the same and will never be again because He let me be a part of her story and He allowed me to share it with the world.

Today I had the privilege of sharing good news. To share with you that her lungs are free from tumors, and her body is free from lymphomas is good news. It feels so good to say that! Tonight I had the opportunity to share "the" good news of who Christ is and how much He loves us. It feels even better to say that! I got to share with a friend, a friend who I love dearly, what a difference knowing Jesus makes in my life and that He can make that difference in hers too. Without my Ashley, without her struggles, without her pain, without her transplant, without her story, I would have never had this chance. God is God and He knows what He is doing even when we don't understand. Trusting Him even when I was frightened and uncertain of the future was worth it. If one life, one heart, one soul comes to know Him then it has been worth it.

Please pray for my friend. God loves her as much as He loves Ashley. As much as He loves me. As much as He loves you. He can do great things in her life too. I believe that He can.

Thank you for sharing with me. You have shared your time, your talents, your most precious treasures with me. I will forever be humbled by your presence here on Ashley's story. God is using each one of you in our lives and I am grateful. Good night my friends. Trish

Good News, Good News

Ashely's scans are in and we just received the report. Its all good news! Thank you God! The remaining nodule in her right lung is shrinking. It is smaller than it was a month ago and that means if it isn't growing its not lymphoma! My smile is growing wider and wider by the minute.

The risk of it returning? That risk will always be there as long as she is on immunosuppresant drugs. She will be on those as long as she is living with another person's organs inside of her. So we do have a risk of it coming back, but it is a small risk. We will continue to scan her neck, chest, abdomen and pelvic areas every three months for the next year just to keep an eye on it, but her lymph nodes are all normal today and that is good news.

Today my heart is thankful and I imagine it will always be. God has brought our little Ashley through some very rough times in her life, but to see her today you would never know it. She looks and feels the healthiest she ever has and that is a testimony to the power of prayer and to the Father. Thank you for the part you play in her life. Your prayers for her are so appreciated and precious to this mommy's heart. Thank you for opening your hearts to our daughter and for loving her.

We are off to grab some lunch and then meet up with a friend. Have a great day. Trish

Happiness Is...

...Droopy eyelids. Warm quilts. Lights out. Prayers said. Thankful heart. Puppy in place.

Enough said. Good night my friends. You are loved and appreciated. Trish and Ash

I Just LOVE...

...that ponytail! Those eyelashes! Her tiny nose! Even that mouth that is sure to cause an awful lot of trouble someday. Ashley Kate is now awake and seems to be really, really happy. We are back in our room and she is ready for a party while Mommy is ready for a nap.

We made it to the hospital at 7:00 am this morning and had plenty of time to check in, shower, and get ready to go to CT. Our drive was great. No traffic. No trouble. No time crunch. We arrived in Omaha tired, but safe. Thank you Lord for taking such good care of us throughout the night.

I haven't seen the disk of her scans yet. I am going to lay down for a little while and then go back and pick it up. I'm not sure I will be able to figure out what I am looking at since radiology is Dave's department and not mine, but I am going to try and look at it anyway.

Well I promise to share more later, but for now I have got to close my eyes. My head is spinning and I can't see the letters on the screen very well. I 'll talk to you guys in a little while. Thanks for praying for us as we traveled last night. By the way, the Sentinels(Blake's soccer team) won the game 3-2 and I got some really cool pictures of Blake. I am so glad I took the time to watch the game before heading out on the road. Take care guys, Trish

Running

I am literally running in circles this morning. I can't seem to get a handle on all that I am trying to pack, plan, and prepare before leaving for this trip. The silly thing is that Dave and my mom have proved themselves to be quite capable(MORE than capable) of handling things while I am gone. I just want to make things as easy as possible for them while Ash and I are in Omaha.

I am a little apprehensive about going without Dave. I'm just better when we are together. Hopefully this will be the last trip we will make to the transplant center until next spring. I know things are going to be fine. This trip is just a repeat of our last trip with the exception of losing the central line. Ash looks really good and I am looking forward to taking her to see so many friends.


We were able to move her CT scan back to 10:45 which gave us an additional 2 hours to travel. We should be arriving in Omaha around 8:00 tomorrow morning. We are going to be able to see most of Blake's game this afternoon before leaving. Unfortunately the school decided to bump the start time back by 30minutes so we will be missing some of it. Our schedule is so tight that even a 30 minute delay is too long to risk not making it there in time.

Today I am so grateful to share with you Ash has started eating again. I don't think I had told many people that she had stopped, but she had. Over the last two weeks we could not get her to take a bite of anything. Dave and I were beginning to get discouraged and concerned. On Friday afternoon she started eating around lunch time and has successfully eaten a little at each meal since. I am so thankful! I was dreading taking her back to Omaha with the news that she had shut down and was no longer eating anything by mouth. Now I won't have to. Ash has many, many obstacles to still overcome and I know that in time she will, but the eating thing is one of the biggest. Ashley only eats baby foods. She has an aversion to any table food, finger food, or anything that has a texture to it. She does not pick up a cheerio or a cracker like most toddlers. She will only take food from a spoon and it has to be a certain texture. We continue to try as we offer her many types of food, but she is stubborn and does not budge. We will actually be adding speech and feeding therapy to her weekly schedule once we return from Omaha. Along with the potential hippotherapy(horses) and her normal physical therapy(3 times a week) she is going to be one busy baby. My prayer is that one day she will wake up and have nothing on her schedule. How wonderful would it be to look at our weekly schedule and see no doctor's appointments, no therapy sessions, no anything under Ashely Kate's name. I'm not sure who will be more excited when that day comes me or Ash?


Yesterday we successfully sat through our first church service with Ashley Kate in over a year. It was such a blessing to be back. We sat in the balcony and she sat next to us like a big girl for most of the service. She looked so adorable all dressed up sitting on the pew. She read books, chewed on a few toys, and for the most part behaved herself. She began to fuss a little toward the end so Dave picked her up and allowed her to "rip" off his face for the remainder of the service. This of course delighted her! She smiled and grinned with each scratch and then began hugging him over and over again. She is just so cute! It was so great to see our pastor, our friends, and those who have faithfully followed her journey and prayed daily for our little gherkin. We are looking forward to returning after our trip for attempt number two.

I guess I should finish packing Ashley Kate's things. You know how much it requires to be a princess. She always has more bags to take along than the rest of us. I will be driving through the night so you will probably not see any word from me until tomorrow after her scans are complete. Thanks for praying for us today and for checking on her. Take care my friends. Trish

To give life

Dave and I went out on a date tonight. We were home by 9:45. At the conclusion of dinner we actually heard ourselves say the very words, "I'm too tired to go to the movie." "Yeah, me too. Lets run into Target real quick and then go home." All I have to say now is that I think that is PATHETIC! We are so OLD! Gone are the days of our youth when we were energetic and cool. These days going out to dinner and an errand are all we can handle.

We did enjoy some really great, uninterrupted conversation and some really great fish and steak. While waiting on our meals we began discussing our Ashley and the plans that God must have for her life. I've been thinking a lot about her life lately and this verse continues to play over and over again in my mind.

John 10:10

The thief cometh not, but for to steal, and to kill, and to destroy: I am come that they might have life , and that they might have it more abundantly.

These very words were spoken by Jesus Himself, and they have taken on a "realness"(I am sure thats not even a word) to me lately. The thief(who is Satan) probably thought that he had succeeded in Ashley's life. Her beginning and her conception must have brought him great satisfaction as he tried over and over again to steal and kill and destroy this tiny life God had allowed to be created. I am sure he thought he had won on more than one occasion. She struggled for life and breath and he celebrated in her pain. The thing I love the most is knowing that he is NOT all knowing like our Father is. Satan could not see the future that God had in store for our sweet Ashley. He could not see the many, many believers who would fall to their knees daily as they cried out for God to intervene in her life. I can just see him stomping his feet and throwing a fit each day as more and more people spent time in prayer. The hurt and the pain that we all felt as we helplessly watched her battle for life so many times must have brought a smile to his face, but he did not know the outcome. God was not finished with Ashley. He brought her through a neglectful pregnancy. Satan did NOT win. God brought her through a violent birth. Satan did NOT win. God brought her through a battle with NEC that many doctors did not see her surviving. Satan did NOT win. He brought her through so many struggles with her dying liver and her blood supply. Satan did NOT win. God brought her to transplant and allowed her to survive. Satan did not win. He brought her through several cases of sepsis, cardiac arrest, and PTLD. Satan did NOT win. The Father carried her through 18 weeks of chemotherapy and He allowed the tumors in her lungs to all but disappear. Satan DID NOT WIN. NO MATTER WHAT the future holds for our sweet Ashley Kate I am determined that Satan WILL NOT WIN. My God is too big. He has plans to give her life and to give it more abundantly. Whether that life be short or long our God will be glorified and Satan can just leave us alone. Our life with Ashely is blessed and Satan can not steal the joy that she has given to us. It can never be taken away.

This may sound a little crazy to some, but I believe that Satan is real and that my God is real. I believe the words of Jesus when he tells us about the thief's plan to steal, kill and destroy. I believe that God has a definite plan in mind for for my daughter's life and that each of her struggles will serve a purpose in that plan. Tonight I believe that Christ came to give life. Not only to my Ashley, but to you and to me.

He Opens and Closes

Ashley and I are making the 14 hour drive to Omaha, but I haven't decided when we are going to leave. Tonight we received word that our request for a flight was denied. I'm really ok with that answer. Obviously it is easier to make the hour and a half flight out there as opposed to driving, but I'm not the best passenger in the air anyway. It takes an awful lot of prayer to get me through the flight and each time we land I am amazed that we made it safely. I know it sounds ridiculous, but thats the way I am. Flying is not easy for me. Tonight I am just thinking that this time God closed the door on the flight and He must have a reason for it. We have been SO blessed to have our previous 3 flights to Omaha approved and I just can't be anything but grateful for the provision He made in those instances. This trip will take longer, but perhaps we will be better for it.

Blake is playing soccer for his school during his off season(it only lasts about 3 weeks, but to him it might as well be an eternity). He is an excellent soccer player but gave it up two years ago in order to seriously pursue his dream of becoming a baseball player. His first game is Monday at 4:30 and I can't bring myself to miss it. I will already be missing a game on Thursday so missing the one on Monday is causing me a little stress. I would like to attend the game and leave for Omaha towards the end of it. In this case we will be driving non stop throughout the night in order to make it to Omaha in time for Ashely's CT scan. I realize it will be difficult, but when you have three kids you have to make time and sacrifices for all three of them. Blake would completely understand me not attending, but I also know that he has had to "understand" an awful lot over the last two years. If there is any way possible I can make this work then I am going to try. I am really hoping to move her appointment back a couple of hours if at all possible. If its not then we will pull in front of the hospital right around 8:00a.m. in time to check her in at 8:30. Again I believe that God is capable of opening this door and allowing me to make the game and make the appointment in time. We'll have to see how it works out.

Speaking of opening doors, we are already working on getting Ashely involved with the hippotherapy that one of our readers suggested(thanks Wendy). I was going to wait to write about the opportunity once I returned from Omaha since I have to get the ok from her transplant team regarding immunity issues before beginning. Our therapist actually brought the application and consents over Wednesday for me to take to Omaha. She really believes this could help with Ash's mobility. After she left on Wednesday Blake looked at me and said, " There is NO way dad is going to let you put Ash on a horse!" I think we can convince him of it, but Blake is absolutely against it. He thinks it is too dangerous. I just love the way he looks out for and protects his little sisters. I am praying that this might be one of those doors God is opening up for Ash and that He will be able to use this therapy to bring about some changes in her life.

I'm still trying to convince Dave that I can make the trip to Omaha in one shot. He isn't thrilled with the idea of us driving all night, but his mom offered to come with me and help out with the driving. I'm thinking of it as an adventure. Ash will be comfortably sleeping for the majority of it and she won't put up a fuss. She is the best traveler! Strap her in next to her stuffed Blue and allow her to watch an episode or two until she drifts off and we will be good to go. I really can pull this off(I think!).

The best thing about returning to Omaha is visiting with old friends. I already have the baby gifts packed for those expecting, the thank you for being so great gifts packed for those who never fail to put a smile on my face, and the gifts I picked up just because it made me think of you. I really am looking forward to catching up with the girls(Ash's nurses) again. God opened lots of doors for us as we were searching for the right transplant center and He actually closed a few before we headed off in the wrong direction. The path that led us to Omaha and the people He placed in our lives while there continue to bless me everyday. He knew that He had organs, the right organs, waiting for our gherkin and I am so thankful for His guidance and wisdom. She might not be with us if we had gone the through the wrong door.

Thank you for loving us and our sweet Ashely Kate. Thank you for your kind words and your encouragements. Thank you for your friendship and your prayers. Good night my friends. Trish

Amazing what Blue can do

Ash had PT with Ms. Sue today. As we were working Ms. Sue said she thought it was time to take a happy picture of Ashley during therapy. I smiled and said, "We can try," never actually believing it would happen. Ash can be the happiest baby as long as we let her play with what she wants and don't get into her space, but the moment we put our hands on her she loses it. I mean she really loses it. She doesn't cry because the therapy is painful. She cries because we are making her use muscles that she doesn't use on her own. For instance, Ashely's legs work. The bone structure, muscles, and nerves are all intact. She can use them. She just doesn't know that she can use them. Her brain or her joint mechanoreceptors aren't firing and telling her that she can. We're not sure why they don't. How do we know that it isn't painful for her to stand? Let me show you. This is a picture of Ashley standing before we turned on Blues Clues:

And this is the picture I took moments after the show started:



Amazing? Not a tear falls or a cry is uttered as long as she can watch her favorite blue puppy. If Ashley was experiencing pain in her legs as she stood on them she would not be able to stop crying instantly. She's just a stinker! Using Blue to our advantage is working out beautifully. She may resist and put up a fight in the beginning, but as soon as the music starts she is fine. What a silly girl she is.

She's had a really good day. She smiled and played for the majority of it. As soon as her daddy came in tonight she shared hug after hug. It was just so sweet. I love seeing the two of them together. As Dave works on his computer across the room from me on mine Ash sits in the middle of the floor playing peek a boo and making all kinds of noise. She has earned herself a later bedtime now that the kids are in school because she refuses to be quiet in her crib when she can see Allie across the room. Once Al is good and asleep we sneak Ash into the nursery and put her to bed. She really thinks she is something staying up later than Blake and Al.

Well I suppose I should get off of here and prepare lunches for tomorrow and iron uniforms. I just love the routine of being home! Thanks so much for being here with us today and for each prayer you have prayed for our gherkin. We truly appreciate those of you who are still with us. May God bless you and your families. Good night. Trish

Answered Questions

Every where I go people ask me about our Ashley. I find it amazing that her story has reached so many people. It blesses my heart to hear how she has touched others. When they tell me how they have prayed for her for so long this feeling of love and gratitude wells up inside of me and I just want to express to them how important they are to us. My initial reaction is to reach out and hug them or grab their hand or touch them in some way, but since many of them don't really know me I am afraid I would frighten them. I have learned to pause before I thank them and at the same time I am telling them thank you I am asking the Lord to please bless them as they have blessed us.

I am finding that with most conversations I am being asked the same questions. "Is she walking?" "Is she talking?" "Is she eating?" I don't mind the questions. Oh, sure on some of my more emotional days they may cause a little sting to well up in my heart because I am forced to say out loud that no she doesn't walk, she doesn't talk, she doesn't really eat, but for the most part it gives me an opportunity to share what she does do and those things are much more important than walking, talking, or eating. So tonight I am going to share with you some of the things that Ash does do.

Ashley does not walk, but her personality does soar.

Ashley does not talk, but her eyes and her smile communicate how much she loves life.

Ashley does not really eat that well, but her little body consumes all the love that surrounds her.

Regardless of the things that she does not yet do she is HAPPY, and that means the world to us. As time goes by we are finding out that she will have a lot more things outside of her transplant issues to overcome, but we will face each one of them just as we have the others. We will pray for her. We will be thankful for her. We will LOVE her. The rest are just details. God has plans for our little gherkin and we don't pretend to understand what they may be, but we know that He is working a good work in her life. For today that is all I need to know.

Trusting and Teaching

Last night our sweet Ashley Kate chose not to sleep through the night. It really has been a little unreal around here lately. She has adjusted to her crib and her nursery so very well that it is now out of the ordinary for her to not sleep through the night(I find this an amazing gift from the Father!). Anyway at sometime in the very wee morning hours she woke and fussed a little longer than normal. At first I thought I was dreaming, but then I realized the fussing was coming from the monitor next to my ear. I tiptoed in the girls room and changed, emptied, tucked, and kissed her good night again. Usually she smiles at me while her eyes are still closed tight and drifts back to sleep. Last night she continued her fussing after I had returned to bed. I listened for a while and then tagged Dave. He got up to "check" on her and before I knew it we had a baby gherkin laying between us in our bed(he is SO weak!) He drifted off to sleep and Ash continued to fuss. I lay there next to her and reached out to place my finger in her hand. After a minute or two she settled in and began to sleep. Thats all it took. "Amazing", I thought. Here she was "holding" onto my hand and trusting that the rest of her night would be ok. Even in the middle of a sleepless night she continues to teach me life lessons. As I lay there next to our miracle I began to pray. If only I would live my life in such a way that all it took was reaching out and holding onto His hand. Ashley trusts us. She knows she is safe with us. She doesn't trust anyone else around her. Only us. Last night her trust in me spoke volumes. The next time I am afraid, unsure, or unsettled there is only one hand that I need to reach for. Its the Father's. He is trustworthy and He is so capable of making everything ok. Just as her daddy and I are her safe place the Father is mine. Even in the middle of a sleepless night I can go to Him.

Ashley and I will be traveling to Omaha next week. I am not sure how we are getting there, but we are working on the details. Our flights have not been approved just yet, and I am not comfortable with traveling on a commercial flight with her. We may drive. If thats the case then we will start out on Sunday. Unfortunately Dave will not be going with us. So its just me and the pickle. Tuesday morning her CT will be done. Wednesday morning she will see Oncology. Thursday morning she will see Transplant, and Thursday afternoon they will pull her central line(obviously if her scans show growth in the remaining nodule then we will re-evaluate the removal in case we begin chemotherapy again). The removal of the line will be the roughest part for Ash. It has been there for more than six months so her body has grown around it. There is scar tissue adhered to it and its not much fun pulling it out. The procedure is routine and they do it all the time so even though there are risks, they are minimal. The unfortunate part of having the line removed is that her lab work will now be down peripheral. Lots and lots of needle sticks for her from then on out. This part of her life will require much prayer. Her nurse and I have already been making plans for just how we are going to get through this. Just another part of post transplant life we will have to adjust to.

School starts tomorrow. Our schedule's are full. Ash looks good. Life is busy and blessed. Now that summer is ending I find myself excited at the possibility of actually spending the fall and holiday seasons at home. It will be the first time in Ashley's life that we will all be together for this time of year. God has been so good to us. I'm still learning and growing daily through her life and our experiences with her. I pray that I always will. Thank you for remembering her in you prayers today. She has come such a long way. Take care. Trish

A wish your heart makes

Allie's been dreaming again. She seems to always be dreaming up something. Like the morning she woke up and declared "I will meet Cinderella someday, Mommy. I really will as soon as you take me where she lives I dreamed it." She dreamed it. She believed it with all of her heart, and she began telling everyone she met. Her teachers, her coaches, her grandparents, people in line at the grocery store, EVERYONE. One day as we were driving down the road she asked from the back seat, "Mommy, How much did this car cost?" I was caught a little off guard wondering why in the world my five year old would want to know something like that. It didn't take long for me to figure it out. "Umm, I'm not sure I remember."

"A dollar?"

"Oh, no. A lot more than a dollar," I told her.

"Ten dollars?" She said.

"Lots more."

"How much more?"

"Thousands of dollars. I'm not sure how many."

Shocked and a little frustrated she proclaimed, "You could have taken me to see Cinderella lots of times with that much money if you wanted to."

Like I said, she dreamed it. She believed it. She set her heart on that meeting. Guess where she was in November of 2004? Thats right, Cinderella's castle. As she stood there in awe she whispered to me, "See mommy, she's right. Dreams really do come true."

Yesterday Allison shared another one of her dreams with me. As soon as she woke up she came in to ask me, "Is Ashley walking today?"

A little confused I turned to look at her and slowly said, "Noooo. Why?"

"I dreamed it. I saw her walking and jumping. She was walking around in our house. It was a really good dream. She was really happy. I was just wondering if she did it while I was still sleeping."

"No, Al. It didn't happen when you were still sleeping. I would have woke you up if it had. Maybe someday it will happen."

"I also had a dream about a giraffe. It was chasing me through some really tall grass, but I don't want to talk about it anymore." she said.

The part about the giraffe is a little confusing to me. I'm not sure what role that giraffe is going to play in Ashley or Allie's life, but if her heart keeps believing her baby sister will walk someday then I'm gong to keep believing it too. Her faith is strong. When mine waivers, and I start to wonder if we will be carrying our sweet Ashley Kate around on our hips when she is six, or seven,or ten then I try to remember how much Allie's heart wishes for Ash to walk and it encourages me to keep believing that she just might. Someday.

Its been an emotional day for me. Dave and I continue to work with our little pickle and her legs faithfully. Sometimes it seems as though something is missing. There is something somewhere in her that doesn't connect and remember to tell her to use her legs. As we work with her, we talk about all the possibilities. Its heartbreaking. I don't know if she will ever walk. I want so badly for her to have that ability. Its not within my power to give it to her, and as her mom it hurts. The thing that comforts my heart on days like today is knowing that He knows exactly what part isn't working right. He is not confused. I know He created her and He has plans for her life. If His perfect plan for her life does not include walking then I have to want that for her too.

Tonight our family is praying for her legs and for His will. I know my parents are praying that she might someday have the ability to walk. I know the kids are praying it too. Her daddy is praying it and so am I. Its just a wish our hearts are making and I know He cares about our wishes and dreams. If she never takes a step it will not change who she is to all of us. I would carry this sweet baby around every single day for the rest of my life if that is what He asked of me, and I would do it with a thankful heart.

Thank you for being here with us today, and thanks for listening and praying. You are loved and appreciated. Good night. Trish

The Joy of Parenting

Its the best job in the world. I absolutely love being their mom! Today I had the opportunity to make them all smile and that makes my heart smile. What joy it gives my heart to do things for my children. I can only imagine how much more it must do for the Fathers heart to do things for us.

This morning Allie, her good friend Chelsea, and I all had hair appointments at our salon. What fun it was to sit and pick out a new hairstyle for the girls. They both decided on a new layered cut that looks absolutely adorable on them. Our only requirement was that it had to be long enough to go into a ponytail for tumbling and soccer. They were so cute as they flipped and primped their new cuts in the mirror. I promise you the haircut instantly aged them from little girls into young ladies. It was shocking how grown up they looked. Thankfully it didn't last too long. Before leaving the salon both girls tried to pull their hair into those familiar ponytails they are famous for wearing. The smile our trip to the salon put on those little girls faces will last forever in my memory. I love being a parent!

Tonight we hosted a party for our Tarheels out at the pond. What fun we had watching our favorite group of eleven year olds run around together. Blake has been blessed with an amazing group of friends and getting them together to just be the "tarheels" is so much fun. The guys laughed and goofed and swam and fished and played backyard baseball and fixed burgers and smores until way after dark. Seeing the smile on his face as he just hangs out with the guys gives me such a feeling of contentment. God has really blessed my son and I am so thankful to have the opportunity to be a part of his life. I could sit back and watch him just be one of the guys for hours on end. Parenthood is great! I just want him to love being a kid for as long as he can. They have their whole lives to grow up and take on the responsibilities of this world. Someday I hope a smile comes to their face when they remember their childhoods.

Ashley Kate spent the majority of the day sleeping. She seemed to be feeling a little "wimpy" today, but on the drive home tonight she began to perk up. What did I do to bring a smile to her face today? I bet you could guess. I turned on Blues Clues. That's all it took to perk that little one up tonight. She looked at me with the sweetest smile as if to say, "That's what I've been waiting for all day Mom." I just giggled at that rotten little thing. We have tried everything to make her smile today and I didn't figure it out until 10:30p.m. I think she is starting to experience a little separation anxiety. She is never without one of us by her side, but it has gotten to the point that if Dave or I walk into the other room she bursts into tears. I'm talking big crocodile tears and the saddest cry you have ever heard. I just started turning back around and picking her up, placing her on my hip and taking her to change the laundry or answer the phone with me. This child is rotten, but oh so cute! I just love being her mom.

Its been a good day for us. Its been a day of normalcy. What joy it brings me to say that. I have just had a great day being a mom. No doctors appointments, no emergencies, no issues to deal with. We are blessed to have three amazing kids. We are blessed to be the recipients of His love and grace. We are blessed to have been given another day as a family of five. We are blessed so much more than we deserve and we are thankful. God is good. Good night. Trish

Guess who just walked in?

Its lunchtime at our house and guess who just walked through the door?


This is the smile she will wear until its time for Daddy to go back to the office. I absolutely love the joy that spills out all over her face!

The joy on his face is pretty great too! Ash brings such a feeling of happiness to our house. You can't have a bad day when this little one is smiling at you. We are so blessed!

Have a great day!

(P.S. please excuse the fact that she is still wearing her p.j.s. Its just been one of those lazy days around here. We're hanging on to the last few days of summer before school starts. )

She is such a Girl!

Moody? Emotional? Unpredictable? That pretty much explains it.

After yesterday's grumpy attitude I honestly had no idea what to expect from our sweet Ashley today. As I went to wake her this morning I could feel myself holding my breath as I tiptoed into the room. There she was. Rosy cheeked, smiling, eyes twinkling, and tiny hands clapping as I came around the corner. Ash was back. No more grumpy looks, fussy noises, or crocodile tears. The only explanation I could come up with is that she is a girl. Yep, I admit it. Tears for no reason at all can quickly turn into uncontrollable giggles. She doesn't necessarily need a reason for behaving the way she did yesterday. I've had days like that. Everything makes me cry. I can't seem to lose my grumpy attitude. Nothing has to be wrong all I know is that its just not right. We have definitely been created with a complex group of emotions and feelings. As I watched our tiny pickle play herself into exhaustion today I tried to figure out what in the world could have been wrong with her yesterday. I found myself being thankful that my salvation and my faith does not depend on the way I feel. Just as my love for Ash didn't waiver during her fussy day His love for me and His promises to me do not waiver. If I had to "feel" saved or "feel" that I was walking close to Him each and every day in order for my salvation to be real then I would definitely be in some trouble. Thankfully salvation isn't based on my feelings. I am so glad that it comes from His grace. Regardless of whether I "feel" saved or not He promises what He promises and my state of emotion doesn't have the power to change that.


Ash has been so silly and so sweet today. She has laughed and giggled all day long. She crinkles up her nose and smiles so wide her little eyes squint. She is such a joy! I just love her so much. She was nothing short of adorable. We really had a great day with her. As I type I can hear her daddy over the monitor as he tucks her into the crib. What a blessing it is to have her home with all of us. She isn't allowing him to leave. I have heard him say "Night, night Ashley Kate" at least a dozen times now. When it comes to tough love and allowing her to cry herself to sleep he is absolutely the worst at it. He tries, but that little pickle has him all figured out. She's not going down until mommy comes in and makes him leave.

God has been so very good to us. My heart is so full as I look around and see all the blessings in our lives. As you pray tonight would you please pray for a couple of our little transplant friends.
They continue to struggle and my heart is heavy for them. They and their families really need our prayers tonight. Thank you for checking on Ash tonight. I appreciate each of you who continue to pray for and love our little one. Good night. Trish

Take me Out...

...I mean Home to the ballgame! I should have sold tickets to tonight's game. Dave and Blake have the Rangers game blown up on a projector the size of our living room wall. The players are as large as life and its not enough for these two guys to just enjoy watching the game. They have laser pointers to help them study and analyze each and every play. I assure you my eleven year old is loving every minute of it. Poor Ashley Kate doesn't have the ability to get up and walk away. She is happily sitting on her daddy's lap and listening to the play by play. Allie and I have retreated to our rooms.

Our sweet baby pickle has been a little sour today. She woke up with an attitude and nothing I did could help take it away. She refused to cooperate during PT this morning and as soon as it was over she drifted off to sleep. "Ok," I thought. "She just needs a little more sleep." Nope. Her sour attitude continued and when it was time for her nurse to come and start her cytogam infusion she still had it. With each and every set of vitals she crinkled up her nose and the tears began to flow. I guess were all entitled to have a bad day every now and then. By the time Dave walked in the door she had stopped her crying and was happily playing in the floor. When Dave sat down next to her she leaned in and gave him a big hug. Too sweet! Over and over again she loved on her daddy until she finally drifted off to sleep in his arms. I'm trying not to take it personal. Perhaps tomorrow she will wake with a sweeter disposition.

I've been trying to unpack and catch up on the piles of laundry from our trip. Somewhere along the way I have misplaced Ash's shoes. I have no idea where they have gone so she has managed to escape spending anytime in the stander. I never really noticed that she only had one pair of shoes until today. All a girl really needs is a good pair of keds (especially when you don't walk), unless your mommy loses them while traveling. Hopefully they will show up tomorrow.

I think Ash and I will be traveling to Omaha a week from Monday. It will be a repeat of last months visit. CT scans, oncology, and transplant. The only thing we will do differently is remove her central line. In just a couple of weeks we will no longer have to care for, flush, and protect the line that goes directly into her blood stream. After two years she will finally be free. We are very excited for her. Removing it will obviously be uncomfortable because of the length of time it has been there, but she will be much safer without it. Just another stepping stone in her story.

Well, its time to tuck the pickle into bed. Thank you for coming here today and for praying for our Ashley. Your time has made a difference in our lives and we will forever be grateful. Take care my friends and God Bless. Trish

A Beautiful Place...

... is where I find myself tonight. After a much needed week of fun, reflection, and relaxation we are back. Back to the place in this world that we have been led to. It is no accident that Dave and I are who we are, raising the family that we are, in the place that we are. How very blessed we are to know that He has called us to do the things that He has. I wouldn't trade places with anyone in the world!

We spent an entire week in the beautiful mountains of Steamboat Springs Colorado. Dave and I absolutely LOVE a beach vacation, but after being spoiled by the magnificent beauty that surrounded us this past week we have decided our next family vacation will have to bring us back to these very mountains. God has created an amazing world for us to enjoy, and having our sweet Ashley Kate put her tiny toes into this very waterfall had to be one of the sweetest moments in my life. Not only did He create this very waterfall, but He also created this little one who I get to call my daughter and the combined beauty of them both was overwhelming.

Ashley is a living, breathing miracle and each moment of her life reminds me that He holds a plan for each of us. There were days when it became very difficult to see past the "mountains" of obstacles that stood before us. Six months ago if you would have told me that she would be placing her toes in a cool mountain stream or looking out across the Rocky Mountains or sitting behind home plate as her brother pitched in the opening game of a National tournament I would not have believed you. God knew the plans he had for her. Plans to prosper her and not to harm her. He loves her and regardless of the struggles He allows her to endure I KNOW that His plan for her life is beautiful.

Ashley really enjoyed our time in Colorado. The weather was beautiful and we had the opportunity to do the things we love the most. We watched Blake and the Tarheels battle some of the best teams in the nation. Thousands of teams played this season from all across the nation. 60 of them qualified and played in this tournament. Our Tarheels finished 24th. We are very proud of them. Blake played two positions this tournament. He pitched the first two days of play and then he caught for the rest of the tournament. He did an amazing job and Dave and I thank God for the talent and opportunities He has given to our son.

Now that we are home we are busy preparing for the beginning of school. The kids are finishing up their summer activities and attending back to school reunions with their classmates. Ashley will receive her last cytogam infusion tomorrow and we are making plans to have her central line removed. I may be flying out to Omaha with her next week to have her follow up scan on her lungs. We are looking to see if the remaining spot in her lungs has disappeared, stayed the same, or grown over the last month. Our prayer is that it has not grown. She looks better and stronger than ever and we hope to be finished with chemotherapy forever. If we do go to Omaha we will have her line removed while we are there.

Thank you so much for checking on her. Posting while in the mountains was proving to be very difficult. We missed visiting with every one and are happy to be home again to share our Ashley and her story with you. Your continued prayers for her are appreciated. Take care and good night. Trish

Treasured

We wanted to share with you a little piece of a gift that was given to our sweet Ashley Kate by her grandma on her second birthday. Just like our Ashley it will forever be treasured.

As I've thought of my gift for you to celebrate two years,
The more I remembered my eyes filled with tears.
My precious, sweet Ashley, what a treasure you are
There's no doubt about it, you're one of God's bright stars!

You were given to us when you were tiny and new,
But even before your beginning God had BIG plans for you!
And you've touched many lives right from the start
and caused wonderful changes in many a heart.

So as I thought of the treasure He created in you,
I took those thoughts with me and before I knew,
I had found a special box; a treasure not of gold,
But one of pure silver with a story to be told.

The box shows rare beauty; it's creator made sure
That the silver he used was shiny and pure.
And the treasure inside it is equally grand.
A collection of memories wonderfully crafted by man.

Each charm this box holds reminds me of your time on earth.
Beginning with the very first day of your birth.
Another one brings to mind that you are dedicated to Him.
And another makes me think of you being given life again!

There's one to remind you to take time to pray.
And another to remember you are loved every day.
Yes, Ashley, my gift is a gift to be treasured,
I pray it serves to remind you that love cannot be measured.

And just as reminders of events will be added to your box
God will open your heart and remove any locks.
And He will add to the treasure He created in you,
And as you grow and develop we will all get to view.

The beauty inside you we already see is there.
Placed by Jesus Himself through His love beyond compare!
Happy Birthday, sweet baby. I love you so much.
And I'm so thankful to have you to hold and to touch!!!

Grandma

At the Ballpark

We had our first day of play at the ballpark yesterday and Ashley Kate was the Tarheels biggest fan. Our good friends gave Ash a t-shirt for her birthday that said "I love my Tarheels" with the #7 printed on it. We loved it and she proudly wore it in support of our favorite catcher #7, Blake Adams(of course the t-shirt is pink!)

The Tarheels did a great job yesterday. Blake pitched the first game and we were so proud of him. We came out on top with a score of 20-5 in that one. During the second game Blake caught(which is his favorite position). Our Tarheels battled back in the 4th inning from a score of 8-0 to tie the game at 8-8. In the next inning we took the lead 9-8 only to end up losing when the home team had last bat and came out on top 10-9. Overall the Tarheels start this morning 23rd of 60. We made it into the Division 1 brakett and now we will have to play our "A" game to stay in it. I think the boys are up to the challenge. This morning we face the Oklahoma Stixx who are ranked number 10. The majority of the other teams in our brakett are out of California. We definitely have some good baseball to play.

Ash is loving the cool weather and the scenic views. It is so beautiful here in Steamboat, CO. You couldn't think of a better combination. Mountains and Baseball and a happy baby. We are loving it. Take care and we will get some pictures posted this evening. Have a great day! Trish

Promise

Just wanted to let you know that I promise to share pictures of Ash's party as soon as Dave joins us here in the beautiful mountains of Colorado. I am having a lot of trouble with posts and I need his help. Thank you for your patience. I want to share with you.

All About Ashley

Ash, Now that you are two and are no longer a baby, I wanted to share with you a few of your favorite things. You have grown and matured into a big girl and I am so proud of you. As you grow your lists of favorites will change and grow along with you, and I don't want us to forget a moment of your life. So here it is:

Favorite Food: Green Beans

Favorite Toy: Roll around Dinosaur

Favorite Color: Pink(although you look really great in red)

Favorite Animal: Dog

Favorite Show: Blue's Clues

Favorite Song: If your happy and you know it

Favorite Game: Peek a boo and Patty Cake (its a toss up between the two)

Favorite Person: Daddy

Favorite Time of Day: Morning(you ALWAYS wake up with a smile on your face!)

Favorite Blanket: The quilt Aunt Toni made for you

Favorite Doctor: Dr. Antonson (he can always make you smile)

Favorite thing to do: "veg out" with a good episode of Blue

Sweet Ashley, you are wonderful! I love every single thing about you and each and every minute I get to spend with you. I will forever be thankful that God picked me to be your mommy. Keep growing. Keep learning. Keep believing. Your going to be exactly who He wants you to be.

Dear Ashley Kate,

It was two years ago today that mommy answered the phone and you entered into our lives. On this day, August 5th, my world expanded , my faith deepened, and my arms opened.

My sweet Ashley we may not have held you in our arms the day you were born, but from the moment we knew you were here we have held you in our hearts. Mommy and daddy love you more than you will ever know and we are the ones who were handed a gift. That gift was you. You are priceless!

Its been two years. Two years of laughter. Two years of joy. Two years of pride. Two years of snuggles. Two years of memories. Two years of tears. Two years of struggling. Two years of surviving. Two years of blessings.

Ash, God gave you a spirit of joy and strength. You have such a beautiful mixture of the two. You are full of sweetness and spunk. Just enough of each. You have been so fragile and you have been so tough. We are so proud of who you are.

There are still days when I look at you sleeping in my arms and I can't believe that you are mine. Even after all we have been through. Ashley I love you and I will always love you. There is NOTHING that will ever change that.

We celebrate your life, and we celebrate your God. He created you in His image and He loves you so very much. My prayer for you today is that one day all of your dreams will come true. Mommy's sure did. Ashley, dream big. Dream what others may think is impossible. Dream as wide as your mind can conceive and as big as your tiny heart can hold. Mommy and daddy will be next to you cheering you on and praying for you every day of your life. Happy Birthday my sweet, sweet girl. I love you, Mommy.

Happy Birthday to Ashley;.......

The way I sing you should count your blessings that you read that and did not have to actually her me sing it.

My Gherkin is 2 years old and her party was fabulous. I cannot describe to you how good it feels to say that Ash is 2. I have always believed that Ashley would be around for this day, but in the back of my head somewhere there was a place that has always tried to keep me prepared just in case she did not. Yesterday was a celebration of LIFE and Ash has shown our family how to live it more abundantly. She made it to 2 and she is looking better and stronger than I have ever seen her. At the conclusion of her party our family formed a big circle around her and we went around the circle each taking a moment to pray for and praise all that God has provided to our family over the last 2 years. What we have been a part of has changed each one of us for the better. It was impossible to hold back the tears as so many in our family prayed for Ash and for us as we continue to face future challenges. It was equally difficult to hold back the tears as we reflected on all God has brought Ashley through. I am so thankful to each member of our family who was there and so glad they were all able to celebrate with us. I pray for the family who lost their child so that mine could live and ask that you take a moment to pray for them and lift them up. I also ask that you and your family consider becoming organ donors. It is very easy to do and can offer life to another. If you are interested in becoming an organ donor please click here.

On a personal note I would like to thank my wife, Trish, for being the best mother Ash could have ever been given.

Trish and the girls have been driving all day. They started in Oklahoma and are headed for Colorado. I think they have seen just about enough of Kansas for one day. You people in Kansas have one long state. They just called and said they have made it to Denver where they will stop for some much needed rest.

Thank you for loving our little Gherkin (who is pretty big now) and for celebrating her life with us.

DAVE

Whirlwind

We literally blew into town(you just have to love that Oklahoma wind!) around 6:30 this evening and we haven't stopped yet. One of my very favorite parts about coming into town is being tackled with all the hugs and kisses my nieces and nephews give. I have missed them so very much the past two years and my goodness they have grown up. Our first stop was to take Ash to the place we are staying so that she could get out of the car and stretch a little. She is absolutely the best baby. She travels so well. She plays and rests and plays and rests. She didn't even fuss for a minute. I love her so much and I LOVE being able to look in my rear view mirror and see her smiling back at me. It always brings me back to that very first day we came home with her. After 6 long months in the NICU in Dallas I couldn't believe she was finally in that car seat. To tell the truth that day seems as though it was a million years ago. So very much has happened in the last year and a half.

While Ash and Nan stayed in to rest and hang out I went into party mode. I have party stuff packed in every single inch of our car. There are boxes and packages all the way to the top of the ceiling. It kind of looks like I am driving the Beverly Hillbillies truck around town. Thankfully I will be able to leave the majority of it here after tomorrow and not have to travel the remaining 14 hours with the car looking as it does now.

To say that we are a little excited about tomorrow is a huge understatement. We are thrilled to be celebrating. Dave and I spent so many days wondering if she would ever have another birthday. I feel so blessed. Blessed more than my words could ever describe. Our daughter is here. She is turning two years old tomorrow. She has healthy organs. She is living and growing. She is a miracle. The first thing I noticed when I saw my sisters was "our" necklace. We all still wear the charm that a friend of mine sent to me while I was in Omaha. It brought a smile to my heart and to my face as I hugged their necks and told them that I not only "expect a miracle" but I brought a miracle with me for them to love. Our God is SO good.

I still have so much to do tonight. It will take us at least two hours just to inflate all of the balloons tomorrow. I picked up the new photo banner of Ash before leaving town this morning and I was blown away by how great it looks. I just can't wait to display Ash's banners tomorrow and fill the place with pink balloons and flowers. Its going to be so perfect for our little pickle. More than anything tomorrow is a celebration of the goodness of the Lord. He is the reason we will assemble together and have the opportunity to love on our two year old baby. My heart is so full!

I will not celebrate tomorrow without remembering some very special people. Without the gift they gave our sweet Ashley would not be turning two years old. They are never far from my thoughts and are always in my heart. Our donor family will forever be linked to the life of our sweet Ashley Kate. I look at her and I am reminded of the loss they still grieve. Thank you God for this family and for what they have given to us.

Tomorrow will be filled with fun and laughter. It will be filled with hugs and kisses. It will be filled with thanksgiving. It will be filled with those we love so very much. Tomorrow we will celebrate the life of our youngest child and the miracle that she is. I wish you all could be with us because you have become an extension of our family. I promise to share photos of our gherkin and her birthday celebration with you. Thank you for loving her. Goodnight and God bless you. Trish

So Blessed to Share Her

We did it! We went, we went inside, we watched. It was difficult at first. A panic feeling came all over me as the gym began to fill up with parents and children, but then around the corner came a blessing and it was all ok.

I looked up and in walked a very dear friend of ours who has loved our Ashley and prayed for Ashley from the very beginning. I was so blessed to see her. What a joy it was to have the opportunity to share our sweet Ashley Kate with her. As I began to fill out our paperwork she offered to hold Ash and it was ok to actually say yes. To watch her cuddle our sweet girl and rock her to sleep was incredible. Ash rarely allows anyone to touch her and very few people have ever had the opportunity to hold her. It gave me such a feeling of normalcy to watch my friend love on my baby. Such JOY! What a gift the Father had in store for me this afternoon. How exciting to finally be able to share her with the world a little bit.

Dave came in from the office late tonight and exclaimed, "That baby is cuter than I have ever seen her!" I think he is right. She gets cuter and cuter each and every day as her little personality blossoms. Tonight she is rolling around in her crib and playing with her toes as Blake entertains her. He is jumping around and acting silly and she loves it. He leans into the crib and she grabs his face with those tiny hands to tell him how very much she loves him. She is learning to give the sweetest hugs. She really does give and receive love. God has been so very good to our family. He could have stopped with allowing us to love her, but He didn't. He has allowed her to not only receive our love, but to give it back. To be loved by our sweet Ashley is so incredible. Her little eyes light up when we walk in the room and that smile just spreads and spreads.

I had planned to have all of the packing completed by tonight, but it didn't happen. I have Blake and Ash packed and that's about it. We are all going to end up in Colorado together eventually, but not until Wednesday. Blake will arrive first early Monday morning, then the girls and I will arrive sometime Monday evening, and then Dave will join us Wednesday night. With the guys traveling separately from us they require separate bags and then we have all of Ash's "necessary items" and then Al's and mine. Not to mention all of the ball equipment and uniforms and such. Our house is wall to wall piles and lists.

We will be traveling for a good portion of tomorrow, but once we arrive in Oklahoma I will share with you how Ash is doing. We will be working late tomorrow evening on a few final details for her party and then on Saturday we will be turning the venue into a magical place. I am so excited! Just try to imagine more pink balloons than you could ever count. She is going to be one happy baby.

Well the birthday girl is fussing in her room and I am the only one still awake. I get to go check on her and kiss her goodnight one more time. Thanks for being here. Your presence on her journal still blesses me. I so appreciate those of you who are still praying for our pickle. Take care and good night. Trish

Our First Outing

I'm trying really hard to grab a hold of that "relax" thing we discussed while visiting in Omaha, but after two years of not relaxing with her its not that easy. Today I am forced to try my hand at it. Ash will probably do just fine, but me...I'm not so sure. Just thinking about taking her in some where is causing my heart rate to go up and my breathing to become labored.

Allie is trying out a new tumbling gym this afternoon. Dave's schedule is full, Grandmas is out of town, and Nan has other obligations. This leaves me. I will be driving Allison and a friend to the new gym(30 miles) away and taking our sweet Ashley with me. The bag is packed, the stroller is loaded, her keds are on, and her "pony tail"(if you can call a tiny sprig of hair on top of her head a pony tail) is in place. We will be going inside. I have told myself over and over again that we WILL be going inside. I have gotten so used to sitting in the car with Ash while the other kids have activities, birthday parties, or practices. Dave and I even take turns going into restaurants with Blake and the Tarheels after a game. Sitting in the car to keep Ash safe is just what we have always done, but today I will break out of that habit and "relax" a little bit by sitting inside the gym while Allie tumbles. My fingers are crossed, I'm holding my breath, and I'm all prayed up. Lets see how it goes.

As soon as her class is out we will rush back to Longview to pick up Blake to take him to practice. This will be the last one before we head towards Steamboat Springs,CO and the National Tournament. We are so excited for them. Our Tarheels have worked so hard for this trip and we just want them to have a great time.

In two short days Dave and I will be the parents of a two year old(again). Life is so sweet and we are so blessed. Her party is going to be such a treat. We are looking forward to celebrating and fellowshiping with our entire families. I can't wait to share the pictures with you.

Well its time to load up and start this little outing. I'll let you know how it goes. Take care. Trish

Choices

The kids have all fallen asleep and Dave and I are enjoying a little quiet time together. I have been thinking a lot lately about choices so I decided to ask him what he thought were some of the better choices he had made. He looked at me for a moment and then answered,"I chose a salad from Fazolis today instead of tacos from Taco Bell." This was not quite what I was expecting so after I quit laughing at him because he had entirely missed my point I gave him a look like "are you serious?" He came back with this. " I chose you, and I chose to have three children instead of only two and I chose a great profession. " Redeemed? Absolutely. Now he was getting it.

This afternoon I watched Blake entertain our sweet Ashley Kate, and I was thankful we chose to listen to His call. Tonight I walked into the girls room and saw Allison leaning over the crib to kiss Ash goodnight, and I was thankful we chose to follow our hearts. Tomorrow morning I will wake up our tiny princess and be greeted with those sleepy eyes and her sweet smile, and I know that I will thank the Father for choosing me.

Figuring it Out

I spent some time on the phone this morning with our transplant coordinator and it looks like we may have figured it out. Ash's blood work this week looks as though she is low on sodium bicarbonate. This is actually one of the meds that they decided she no longer needed while we were there. She was only on 10mls at night that we would add into her feedings, but perhaps that 10mls was what she needed to keep her chemistry balanced. Anyway, we are waiting to get a new script sent so we can add it back in and see if things straighten out. Hopefully she will be back on track soon. She hasn't had any more nausea and her shaking has stopped, but her urine output is not as high as I would like it to be. She continues to not have much of an appetite today, but she is awake and playing.

Ash has been making progress during her therapy and again today we saw her do things she didn't know she could do. Ashley is standing up along the couch(with assistance from her therapist) on her own legs and pushing herself off with her arms. This is so HUGE! She is full weight baring on her own two feet and she will stand up straight and tall and turn her head around if we start a Blue video for her. That little blue puppy has become a great motivational tool in our home to get Ash to do the things she doesn't want to do. Even though she isn't feeling her best today she still impressed us with what she is capable of doing when we give her a little push.

I just wanted to give a quick update and let you know we are working on figuring out what caused her to feel so yucky yesterday. Thank you for praying for Ashley Kate. Your time here and your encouragements are so appreciated! Have a great afternoon and God Bless. Trish