She's back

Our sweet girl has made it back to us once again. Her happy, smiley self returned today and I'm anxious to get back to see her. Oh how I have missed our girl.

She and Dave had a great day. As great as hospital life can be. All her numbers are in normal ranges. Her kidney function is normal and her drug level is back to what it should be. After a tough week she has battled her way back from a very scary place.

This will be her first night off of iv fluids and back on full feedings. They will draw labs in the morning and will hopefully discharge by noon.

Dave and I are looking forward to having all the children home together tomorrow night. The most comforting feeling in the world is knowing their all safe in their beds when I lay my head on my pillow at night. We know we are blessed. So very blessed.

Better and better

Ash is having her best day yet. She's up out of bed. She can sit up on her own. Her swelling is going down except for her eyes. She is communicating her wants to her daddy and being very vocal when not receiving them. Her feeds are up to 25ccs an hour and she's tolerating.

This mornings lab work showed huge improvements. Her bun finally hit the normal range. It's the high end but it's normal. Creatanine is coming down too. We r now in a balancing game with her electrolyte losses. The goal on feeds is 85. Once we r there as long as her numbers stay stable we should be headed home. I really think it may happen this week.

She's been through so much this week. I'm just grateful to see the light at the end of this tunnel. We want to bring her home where she belongs.

No word on pathology yet but her turn around seems promising to us. We remain hopeful that her bowel is safe.

Trading places

Tonight I'm lying next to my Allison in a hotel bed in Dallas. My son is across the room from us already fast asleep. My sweet Ashley is fighting sleep in a hospital bed three hours west with her daddy sitting in the recliner next to her. After much discussion and an internal tug of war we decided it best to trade places. And although I'm glad to have some time with my older kiddos my heart is aching over my youngest. This is the hardest part of our life. The times that we r pulled apart from each other while our baby battles against her broken body. How I long for last week or two weeks before that or last month when hospital life was just a memory to her.

We saw progress today. Her kidneys are adjusting to the high toxicity and making urine. The catheter was removed and she passed the test. Two hours after it's removal she had a wet diaper. And another one tonight. That is a huge praise. Less than 48 hours ago the surgical team was very concerned about long term damage being done to her kidneys this week. Things get scary very quickly in theses tiny transplanted bodies. The kidneys were what prompted her move to the picu and tonight she is peeing freely all on her own.

Her swelling is going down and we r starting to recognize her once again. She even held a book today and started signing with her free hand. She won't sit up and isn't able to stand but she is making requests and losing her patience with us. This is all very positive.

Feeds were started at 10ccs an hour and she is tolerating them. Tomorrow we will advance them periodically throughout the day. We have no answers about how or why this all started. Pathology from the biopsy won't be in until Tuesday. The surgeon felt good about what could be seen but the cells will tell the true story. We r all hopeful that good news is coming back to us.

Watching the ups and downs of transplant life isn't always pretty. Neither is living it. BUT it is life and the alternative scares me more than words can describe. Ash loves living and fights harder than anyone I know to keep doing it. I'm so proud of her.

She does all the hard work. We are only cheering her on and honored to be chosen to do so. I love her so very much and look forward to seeing her smile, hearing her giggle, and watching her grow for the rest of her life. Thank u for all your prayers and encouragement.

It's been a long time

...since I have addressed any comments sent to us. This morning I would like to remind those few that choose to be awful toward us that your presence in our lives and here on our journal is COMPLETELY your choice. No one is forcing you to follow along this journey.

This is our honest account of what life in the transplant world is like. There are days when it is difficult. There are days filled with joy. There are procedures that don't go well. There are many, many people making decisions for our daughter and they r not always going to agree with each other or with us. We ALL want the very best life for our Ashley. We all are doing the best we can. The very best we can.

This journal is our account. It is written for us to remember where God has taken us and what he has brought us through. It is written for our family. It is written for our sweet Ashley. It is written for the thousands of strangers across the country who have loved our Ashley enough to pray her and her mommy and daddy through the most difficult of times.

With that said. Ash is making improvements. Things are starting to turn around. She has remained stable through all of this. Her kidneys are taking a beating. The most severe of her life thus far, but they are beginning to wake up and function once again. She began to put out urine yesterday. Her immuno suppresant drug IS toxic to her kidneys. That is just the facts. This morning the level is at 29.7. We need it to be between 3-5. Her face is severely swollen and her neck is as well. One arm matches with swelling caused by an infiltrated iv that albumin was run through forote than two hours. It is slowly improving. Ash doesn't look like herself and doesn't feel like herself. She is confused. She wants to go home. We wAnt that for het too.

I hold on to the image of seeing her dancing with her daddy across the rug in her room last thusday night. The smiles on their faces were ones I burned into my memory knowing in that moment she was as happy as I had ever known her to be. I cry today remembering that moment as I wonder if she lays there remembering it too.

Closer to home. Everyday we get one day closer. That is what we are fighting this fight for. Home with our Ashley. It can't come soon enough.

Unsuccessful

Things did not go well ash is in a lot of pain and has no central line. Please please pray for her to get well in the next couple of days. She needs to go home. This is a nightmare for us.

Surgery

Ash is in the operating room now. We r hopeful for placement but not confident. Please pray

Where to begin?

I'm not sure. So much has happened it's hard to keep it all straight in my head. I'll start with the basics. 36 hours straight of vomiting every thirty minutes . A bun level of 65 and a creatinine number of 2.68. Only 100ccs of urine in more than 48 hours. A prograf level of 30(should be 3-5). 65ccs per kilo of stool output. All of this earned us a stay in the picu . Along with that stay a foley catheter was inserted giving us a very confused and very angry 4 year old.

Things would like to spin out of control but I am doing my best to keep that from happening.

In all honesty Dave and I believe she is on the mend. She looks amazing today. Her labs don't, but she does.

So what happened? I wish I had a full keyboard to write it all out but I don't. I'm typing on the phone. I'll just say this... Treat the patient not the labs. Had that been done we would not be in this trouble with Ashley Kate. All of this could have bern and should gave been avoided. I'll explain if I ever get to a place with a real keyboard.

Tomorrow they plan on taking ash into surgery for a biopsy of the bowel and a central line. It's not what we believe to be in ashleys best interest but it is what is happening . I think we will be causing more problems and taking more risks than what the few answers that may or may not be found are worth. Our only saving grace on all of this would be to receive good numbers on her morning labs.

We want to go home we want our life back. This is not our life anymore and to be facing such uncertainty is really more than my heart can bare. Ash is so unhappy here. She is hurt and angry and confused. My sweet girl feels betrayed by me as I stand by and allow her to be hurt day after day. This is getting harder and harder the older she gets and the longer times she is given between admissions. Her mind can not understand what is going on around her and why I'm allowing it.

More than anything I want to wAke up in the morning And see that this was just a nightmare .

Test post

We can't connect to blogger so I downloaded a blogger app on my phone. This Is a test to see if it's working. If so I will peck out a blog on this silly phone.

Update

Ashley is back in the hospital in Shreveport LA again. I took her in Sunday afternoon and I would like to say she is looking better however since her arrival she has continued to go downhill. Not sure what is going on with her today but we certainly request your prayers tonight. I will post more when I learn more. My baby Gherkin and my wife are both completely exhausted and I ask that you keep them both in our prayers.

DAVE

Here We go ...Again

In case you didn't catch that...we are back in the hospital with Ashley Kate. Symptoms returned and she went down hill very quickly. Dave had her with him in Bossier this weekend in the RV at Blake's tourney and I was with Allie in Tyler at hers. He said she began vomiting around 3:30 this morning and in less than 12 hours we were in the same shape we found ourselves in last Sunday. It happened really, really fast this time.

Since her discharge she has been feeling great. Completely normal. Playing, smiling, laughing...living. No sign that she had even been inpatient except for the bruising all up and down her arms.


The hardest part about these admissions is that Ash no longer has a central line. Her line was pulled on her birthday last year and she has been without one ever since(the longest amount of time in her life!). So no line = multiple sticks. Many, many, many sticks and attempts at IV placement in her tiny arms. Ash has NO muscle tone or flesh on her arms. They are the tiniest, most skeletal parts of her entire body and the needles tear her up. Today was rough. 5 attempts with a bossy, take charge, "know it all" nurse that didn't sit well with me. She finally quit trying and the next nurse who tried did NO digging, NO struggling. Just one stick and she was in a vein with a patent IV. If I have learned anything over the last 4+years its this...ATTITUDE is everything in nursing care. Give me a kind, compassionate, understanding, nurse and things go so smoothly. The harsh, "I'm in charge", get out of my way while I take over your baby NEVER works. I truly wish their were personality testing that was a must pass in nursing school. 99% of our nursing staffs have been THE BEST people I've ever had the privilege of meeting. Its that 1% that can make a day in the hospital the longest of your life. So hears the deal...don't TELL me what your going to do. Discuss it with me. Don't tell me I don't know what medications she's taking at what strengths. Trust me I do know. Don't lie to the physician and tell him I was unsure about what the dose was. I KNOW what dose I've been giving every single day of her life. Don't act like you are going to take charge and run what is happening in our room. TRUST me...you are not. I'll ask for a staff change quicker than you can say it. We've been down this hospital road a time or two and I am a very competent parent who will stop at nothing to make this the easiest on my daughter as is humanly possible. I am kind, considerate and very easy to get a long with if you are the same. If you are not then you have NO idea what your getting yourself in to. She is our daughter, not just your patient.


Whew...thanks for letting me get that out. I'm actually at the house packing bags for Ash and I while Dave is with her. I'm trying to get things settled for the kids this week. Allie is out of school and will now be home alone for the week. Blake has finals this week and I need to get things in order and make it as easy as possible for him to function while I'm gone.

Ash is weak, dehydrated, and vomiting. She has low stool output which is a good sign. Her kidneys sluggish once again and she spiked a fever early this morning, but it broke quickly. We are not sure what is happening. There are no obstructions or dilated loops of bowel that we could find on film. Our hope is that we are dealing with a stomach bug. The "R" word is about as filthy of a curse in our home as you could imagine and it has not been mentioned out loud. I think it has been thought a time or two, but at this point no biopsy has been scheduled. For now we are staying put in Shreveport and it is my prayer that we will go no further.

I'm hurrying back over as fast as I can. My day started with a 6:30 drive to Tyler. After 2 soccer games I drove over to Bossier to see the championship game in the baseball tournament and then went to the hopsital. After a couple of hours I brought the kids back to Longview and now I'm headed back to Shreveport and Dave will return to Longview so he can be in the office in the morning. Lots of highway miles. Lots of driving. This is our crazy life. The only part I would trade about it is Ashley's shaky health. If I could give her a healthy body and normal life then I would in a heartbeat.

I will have no access to the blog while in the hospital. All personal sites are blocked. If Dave gets a chance he will update between office visits. Thank you for all of your prayers.

Blessed

We are blessed. Beyond words. Beyond description. Beyond understanding. We are simply blessed.

Ashley Kate arrived back home this afternoon, and the smiles on her face were priceless! She is exhausted, a little weak, very bruised and battered from the many sticks and IV's, but none the less she made it home. Crisis averted.

The best guess is that she did pick up a stomach virus. She became severely dehydrated which in turn caused her drug levels to become toxic and that caused her kidneys to shut down for about 48 hours. It was scary not knowing exactly what we were dealing with or where we were headed, but tonight I know how very blessed we are. Rejection is always a possibility. It will be forever. Never far from the minds of her teams of physicians or her parents. Anytime a bowel transplant patient picks up a virus you are in danger of slipping into rejection. Its just that awful for them. Ash's body did a major turn around and tonight she is re hydrated, no longer vomiting, kidneys functioning again, and drug levels close to normal. Close enough to normal to be safely released back home.

As I watch her sleep I know without a doubt that things could have gone the other way for us. She was that sick. I don't know that I have ever seen as weak as she was in the early morning hours of Sunday, and yet she's home once again. Safe and sound. God continues to bless us over and over again.

Life with Ashley Kate is a fragile thing. We take nothing for granted. Not one breath, not one day. I enjoy the littlest of things with my girl knowing all along that a huge price was paid for her to be here with me.

We are tired, and a little run down from the events of the last few days but I wanted to thank you for loving us, our girl, and our entire family. Your prayers are so appreciated and so cherished. When you pray for my daughter it touches the deepest part of my soul. I just wanted to say thanks. Love you guys. Trish

Update

Sorry for the lack of updates but the hospital we are in has all blogs blocked with there internet filters. Ashley is improving and the assumption is that she has a virus. We are waiting for improved kidney function and they are slowly weening her off the IV's. Ashley is older now and is having a hard time with the slow pace of hospital like. She is BORED! She wants to be outside swimming and riding her new bike. Thank you for your prayers. We will update again if there are any changes.

At the edge

Its so hard for me to wrap my brain around this place we actually live. The place where life is beautiful, things are good, our baby is happy, so very happy, and then BAM out of NO WHERE you feel yourself going over the edge, falling and swirling as if you've just stepped off the cliff.

We live at the edge. The edge of cliff. As long as you don't go to close to it then life is good. Its really good. I mean, we know the edge is there, but you can ignore it and just live life and find happiness in all the beauty that surrounds you. All the beauty that spans that cliff all the way up to edge. The very edge. But once you step to that edge then the ground starts to shake and the beauty tries to slip away. I find myself with broken, jagged fingernails this morning. They are caked with mud and dirt and grass as I will myself to hang on to all that I know is ours. The life we live on top of that cliff far away from the edge.

We've been on the beautiful side of this life since July of last year. What a run! What a magnificent, amazing, blessed, run of good months we've been given.

I brought Ash in to the ER in the middle of last night. Her fluid losses were getting out of hand and I could see she was getting too dry. We started an IV, drew labs and expected to admitted to the floor. I can handle that. No panic. We just need to get on top of this "bug" and rehydrate our girl. How I wish the world around me weren't starting to spin!

Ashley's labs don't look so good. They are probably the worst set of labs she's had in almost a year. In fact they are. They look ugly, but I've seen them much worse...so I'm not ready to worry. Elevated white count, acidic, kidney function is bad, and bilirubin is not good. Its the first time in almost 4 years, since receiving her new liver, that her bilirubin has climbed outside of normal ranges. Still I'm not panicked. I think she's got a stomach bug. I just feel like she does. So why are we all running around and jumping off cliffs this morning?

They've called for transport. That means an ambulance. Yep, she and I get to take a ride to Shreveport this morning. From there? I'm not sure. I know they will call Nebraska and just between you and me...I NEVER call Nebraska. I mean, not unless its ABSOLUTELY necessary. You know as well as I do that once I let go of the ground and allow us to slip over the edge of the cliff toward Nebraska then life gets ugly. For LONG periods of time. I love UNMC and I hate UNMC. Does anybody understand that? I wonder if its just me. They are amazing, dedicated, surgeons and staff but once you go you have to fight to get to get back home. I'm too tired to fight. I really am. Its been over 48 hours since I've had any sleep.

So... such is our life. Our beautiful, contented, happy, life. Its trying to slip out of my grasp this morning and I'm not ready to let it.

Please pray for Ashley Kate. Pray for Blake and Allison. Me...I'm good. I really am. Its my kids that carry the worst of this life on the cliff. My sweet Ashley as she fights to just live a normal life. My son who loves her more than he has words to express. His heart is heavy for her. My Allie, who will be devastated to come home this afternoon and see that Ash is not there. They are inseparable. Its going to hurt.

Friday afternoon she was splashing in the pool with her daddy and I and this morning she's lying on a hospital gurney ready to be loaded into an ambulance. It happens just that quick. My brain is trying to wrap itself around that.

Ashley's still ill this morning. She's been sick all night long. Her abdomen is rolling and rumbling and can be heard all the way across the room. She's cramping a lot and overall really miserable. I just gave her morning meds and my fingers are crossed that we can get through the next 30 minutes without losing them.

No sparkle in her eye this morning. She's fussy and tired and signing for her daddy(who happens to be away on business this weekend).

The kids have company this weekend and in all honesty its a nice diversion to keep them from worrying too much. They've both been up early with me this morning helping throw in loads of towels and blankets and fixing breakfast for their company since I'm trapped back in my room with Ash. Allie and her friends will spend the day swimming and Blake and his friend are attending a party tonight. What a blessing it was to look at the directions this morning and find out it is actually in our neighborhood just a few houses over from us. I won't have to leave Ash to take the guys.

Your prayers for Ashley Kate are greatly appreciated. Its been so long since she was sick like this. The memories are haunting and I'm so hopeful this will be a passing tummy bug and nothing more. She has no fever, no high stool output. Just vomiting and cramping. The most concerning issue for me is knowing the bowel inside of her is not her own. I'm just praying her body hasn't figured that out.

In the Pit

There is a place inside of me where my deepest fears lie. A place that I hide the thoughts that arise each time she doesn't look quite right, or acts a little too fussy, or just isn't herself. I try so very hard not to allow them to surface, but it seems the more I try to ignore them the heavier they become. The physical feeling that takes place inside my stomach, in the very pit of my stomach, is almost too much for me. I become ill as I fight against fear, memories, and worry.

Tonight I'm fighting. As I lay here with her next to me I will it to go away. To be a fluke. To pass. Yet its here again. It was here last night too. After making it through the day with laughter and giggles, swim time and play I breathed a sigh of relief and told myself it was over. Now, I'm not so sure. What is happening? Is our normal about to be turned upside down and inside out once again? Please, God not again. Never again. Please!

It began yesterday. She woke up, smiled at me, coughed and then got very still. Really still. I could see it on her face. She was willing it not to happen. Then...it did. Vomit. Out of nowhere it showed up. I cleaned her up, whispered a prayer, and the heaviness inside of me began. Her teacher came, school was over, she played and then early afternoon she got very still. I saw it coming from the look on her face, grabbed a towel and caught as much of it as I could. Her therapist came, she worked very hard and seemed to be feeling just fine. I didn't call Dave. I didn't want to think anything could be wrong. Last night 4 more episodes. We both went running down the hall with each cough, each whimper, each stir throughout the night. Then morning came and her eyes sparkled. They truly did. Dave and I had a conversation about the look her eyes hold each morning as she opens them up. It is something we have never seen before our Ashley Kate and something we've never seen in any other since. Its truly magical to see the life inside of her. Her day was wonderful. The fear was all for not. No reason to worry, just a bug of some type because she showed NO evidence of feeling bad all day long. But...

...its now after 11pm and I heard her stir, got up to check and just as I arrived next to her bed it began all over again. To pretend that I'm not sick to my stomach as I type this post would be ridiculous. My heart is pounding, my stomach is hurting, and my mind is reeling. Fear is an overwhelming thing. I know we aren't to succumb to it. As believers I know its wrong. It just is not of God, but yet it proves to be my biggest struggle. Its something I haven't gotten control of in almost 5 years. Before my Ashley was born I don't have a single memory of ever feeling it. Not true fear. Not like this. Not like I've experienced during her lifetime and that I'm fighting off at this moment. I'm terrified of it all slipping away from us. Terrified!

I don't know what is going on inside of her little body. It could be nothing and yet its the knowledge that it could be something that has that pit inside of me feeling so very heavy tonight. I hate it that I can't find peace. I hate it that I can't ever just breathe. I hate it that I always allow the fear to well up inside me. I hate knowing how bad the bad times can be and hate knowing how truly wonderful the good times are.

Father, please don't allow her life to change. Please protect her. Protect that fragile bowel. Protect her life. Protect her normal. Please, please, please bring peace and comfort and healing to whatever is going on. The one You love is not well tonight. Intervene. In Jesus name.

Recovery

My sister has made it to recovery. The surgery went well and now the hard part of healing begins. Its going to be a tough road for her, but so worth it once she's at the end. Thank you for your prayers.

This morning...

my sister is in surgery and will be for many hours. Any prayers on her behalf would be greatly appreciated. I'm a nervous wreck. Its a long, painful recovery but by this fall her quality of life will be greatly improved. I'm so excited for her. Nervous but still excited.

The day after

Its the day after Mother's day and I sit here thinking of the three amazing people I get to call my kids. I found myself staring at each of them for long moments all day yesterday and whispering prayers of thanksgiving for who they are. I am truly blessed to have them in my life. To gaze upon the face of our sweet Ashley and realize that she is still with us. Still living the life given to her is an incredible feeling. I watched her pedal her bike for hours and hours yesterday afternoon as I chased behind her and the smiles would overtake my face. I now sit a room away from Ashley Kate and I listen to her therapist encourage and praise her for cooperating. I can't tell you how rare that is. Not the encouraging therapist but the cooperation on sweet Ashley's part. My girl has a mind of her own! Some days she works hard and other days she works hard at not working. It all brings a smile to my face. Knowing she's in her special room here in our home learning and growing and becoming more independent(to the angst of some of her teachers!).

I spent yesterday at the ball park. It was Blake's first time to play in 4 weeks. What a blessing to see the smile return to his face. He's not yet catching, but had a great weekend at second base. The first time we saw him zip the ball over to first base for an out made us all gasp, but he was fine. No pain. None at all. I was so relieved. Soon after that play he made yet another one toward third base. Still not a grimace or anything. He really needed that and so did we. Assurance that his body did its work and healed the injury. What an amazing creation of our God. His arm is tired today. Not sore just tired from being weak. He still has some rehab to do and it may take a few more weeks to build it up to where it needs to be for him to catch, but we are all so encouraged by what we witnessed this weekend. I love my son and I love watching him back at playing what he loves so very much.

Tonight is Allison's athletic banquet at her school. I will be presenting the athletic awards for her basketball team. Some of them are obvious. Based solely on the stats. Highest points scored pretty much equals offensive player of the year, most rebounds equals the defensive players of the year, etc. etc. Then there are those awards for the most improved players that I truly believe only their coach would be able to see. Those players you watch as they get better and better with each practice and with each experience you give them on the court. We also award for outstanding spiritual leadership and those were really easy to choose as well. The two girls from each of my teams came to mind instantly when thinking of this award. Then I have two more awards to give. One for MVP ( I only choose one girl out of 14) and Rookie of the Year (who obviously has to be a sixth grader). I would have to say that these last two awards have me excited. Not hard to choose either of these. I looked at my list of players and their names literally jumped off the page. I'm pretty excited for each of these girls (and super excited for one of them=) she has no idea its coming!).

School is winding down( I'm smiling as I type that phrase). Two weeks for Allie, three for Blake and Ashley. Lazy days of no where to be are calling our names. I love having the kids hanging out all day long. I love having the house and the pool filled with their friends all week long. If Ashley could have her way she would spend every hour of the days in the pool. Unfortunately she can't. I only have so many ostomy bags a month and changing them every time she comes out of the pool is getting exhausting! I love the every day of nothing special to do that makes my life so special. I think I'm more excited about summer than the kids are!

So this week we have a couple of soccer practices, a couple of baseball practices, two nights of hitting lessons, a guest spot for Ashley to show off her Amtryke at the Ambucs meeting, 9 therapy sessions, a riding session at Windridge, the banquet, and a few other here and theres before Dave goes out of town for work over the weekend. Its 9:45am on Monday morning and I'm already tired just thinking of the week ahead! Life is busy, but even more than that its blessed. What a great season we find ourselves in.

Have a great week. Thank you for all the special Mother's day messages. My job is the best in the world and so are my kids!

Up and Running

Wow, its been a while! but here we are up and running once again(finally)!

Our computers have been down. One down and the other completely out. Its taken us much longer than I had ever anticipated to get them going once again. My last two posts were actually written on Dave's office computers because mine had been out for a couple of weeks. Now as I look back at the date I see its been close to a month since I had an actual functioning computer in our home.

So...what have we been up to?

Crawling, snacking, riding bikes, walking, horse back riding and swimming. Yes, Ashley Kate is doing all of these things. Not all completely independent but still enjoying them every day. I have much to share in the way of video if I can get it loaded. The bike riding video is enough to bring you to tears. She is doing such an AMAZING job. She looks SO cute on her big girl Amtryke. We are so, so proud of her.

In addition to all of her growing developmental progress she too is actually doing some growing. Her legs are getting longer and longer. They are also developing a little bit of muscle tone which is an incredible thing all in its own. Her hair is long and shiny. So pretty. Her skin is turning an envious shade of brown as she sits at the soccer fields each weekend. Her feet have grown two sizes and she is now wearing a size 7. She is losing yet another tooth(still I find this crazy). Her weight is actually holding steady at about 37 lbs. She is thinning out though because of those longer legs. She is up to a size 5T in most of her clothing. Her baby toys are all but gone as is any sign of our tiny little gherkin. She is growing up before our eyes and will be 5 years old before we know it. As soon as school is out we will begin building the props for her birthday party. I'm so excited about it!

Ashley Kate is still the sweetest thing. Beautiful and smiley. Cuddly and silly. She loves her daddy more than anything and continues to ask when he will be home all day long. She can say the word "UP" when wanting to be held or helped to stand. She can also say "HIP" when wanting a snack. This works for pretzels, crackers, chips, or french fries. She thinks they are all called chips. She's not actually biting any of these snacks, but she can lick them till they are soggy at which time she tosses them(literally) and requests another. You should see the snack piles on my floors(or perhaps maybe you shouldn't)! Ash is happy. She is feeling better than she ever has and we are so, so happy for her. There are moments in our days when I am overcome by emotion as I steal a glance at our girl. The normal times I so desperately longed for day after day are here. What a gift a day at home truly is. No drama, no fear, no worry. Just a day of snacks, laundry and playtime. I wouldn't trade the mundane for ANYTHING!

In the quieter moments of my days I find myself praying for her. For her to talk, to walk, to eat. My mind drifts to ideas of a take down procedure and a life free of ostomy bags and break down for my girl. Still I'm not ready to jeopardize her current quality of life and risk a hospital stay where the days and the events are so unpredictable. For now we are happy and I'd like to keep it that way for as long as I can. In the back of our minds we know how quickly her life can change and so the idea of electively choosing hard times is not that appealing. Still I wonder what her life will be like when the bowel is placed back inside of her abdomen and the only visible evidence of her transplant will be the scars. Someday we may choose this for her. Just not today.

Allie is as feisty as ever. Getting into her fair share of scrapes. That girl of ours is an absolute beauty(still crushing on the same young man at her school and thinking I am none the wiser). Lots of drama in the winding down of her sixth grade year and I can honestly say that I'll be glad when its all over. There are lots big decisions being made for Allie and we still haven't come to final over any of them. Wondering where she will be attending school next year is the biggest. We love her school for so many reasons and then there are so many reasons that we don't. Honestly the tuition burden seems to get bigger every year. She would love the same opportunities Blake has been given and I think she deserves those, but its REALLY hard to think of sending her into a public school situation. Anyway, lots to pray about. She is playing some of the best soccer of her life and I can't describe to you how proud we are of her as we watch her on the field. We are also trying to decide if she should switch to club soccer to have a better shot at playing on the high school team. Soccer is just one more reason we are leaning toward moving her out of her current school. They won't allow her the opportunity to play and this is what she does. Anyway, her team won the league title once again and will be traveling to compete in the Tournament of Champions in Dallas in a few weeks. Before that tournament they get the opportunity to play in another tournament in Tyler. So our girl is excited. Really excited.

Blake is healing. Its been one of the hardest times in his life. For him and us. This week he is working hard at rehab. He is really hoping to play in this weekends tournament, but I'm not sure he will get the opportunity. This Saturday will be 4 weeks from the time of the injury and healing was said to take place between 2-5. He is hopeful. Not at a 100% yet, but he hasn't been able to swing a bat or throw a ball all of this time. I'm hoping he hasn't lost his season over this. He loves the game so much and just wants his life to go back to normal. In other news, he was inducted into the junior national honor society. Along with his closest friend, his girl friend and her closest friend. That was an honor we were all so proud of them for. They are such great young people. They really are. I couldn't be more pleased with the group of kids Blake has chosen to surround himself with. Just quality young people. He has had a great year( I think Allison(his girl friend) has had a lot to do with that. He remains a joy to parent. A true joy. I look at my son and my heart swells. He is so much like his dad. The very best parts of his dad are inside of Blake. I love that!

School is almost over. Summer can't come soon enough. We plan on hanging out in the pool, on the ball fields, perhaps making a quick trip to the beach at some point, and celebrating our miracle girls 5th birthday. Life is blessed. Some days are harder than others, but you can't deny how very blessed we are. God is good.

Hope life is good in your homes. Missed you guys. Trish