Ashley's Story

She will leave fingerprints all over your heart



Its quiet on the blog. I don't really have a good explanation for this except to say I'm processing a lot of thoughts that I just don't know how to share. Not with the world, not with my family, not with anyone.

Life has amazingly become normal...for now. Its not really normal when you look between the lines, but its my normal and I'm ok with that at this time.

I'll talk when I can...I mean write when it comes...but for tonight...its still quiet over here while I work within my own heart trying to prepare for the next legs of this journey.

I received a copy of a report this past week that has me reeling. Really it has silenced me and trapped me inside my own thoughts, fears, wonders, worries, and questions. Ultimately it will lead me to a decision that I may or may not be able to live with depending on the outcome. So as I work my way through it...I'll remain quiet.

Strange isn't it?

By the way, Ash is making her way back from this last infection. She's happy. Smiley. Exhausted from the toll it has taken on her liver and the progression of its disease, but she's getting back to her old self. Just requiring a lot more rest than usual. Still on IV antibiotics round the clock... but the latest cultures came back clear. I'm grateful. More blood work tomorrow. Taking it one day, one infection, one hurdle at a time.


First Day

How is it that I have these amazing, talented, beautiful, fun loving, compassionate, young people in front of me? Where did the time go? How did they get to be these people?

Two teenagers in our home is not what you think. There's surprisingly not a lot of drama, not a lot of attitude, not a lot of nonsense. Its actually a joy having them around. We enjoy them so very much.

So the first day of school comes with a lot of emotion...from me! I miss them when they aren't in the house, but I'm so EXCITED to see them grow into amazing young adults. Young adults who have their own circles of friends. Their own interests. Their own aspirations. Their own passions. Their own identities.

I'm looking forward to the hustle and bustle of fall. They both have so much going on that it makes our life busy but OH SO FUN! Volleyball, Cheering at Football games, Club Soccer, Club much to do to keep them out of trouble.

I find it hard to believe that I was even here this morning to fix breakfast, snap back to school photos, and see them out the door. What a blessing in my life. Ashley Kate didn't make a peep in all the chaos. She kept her eyes closed tight and her blankets pulled up. There are no back to school days for her...not yet anyway. We are considering starting up her home bound studies again. Such a hard decision for me. Wanting her to have it all and knowing she probably never will. I stay clear of most first graders this time of year because it hurts too bad to see their excitement knowing my 6 year old will not be joining them. Just one of the bitters in my sweets this week, but it will pass. It always does. There is far TOO much to be thankful for and that keeps me from dwelling on the sad for too long.

What will I be doing today? Are you sure you'd like to know? Christmas is coming to our house one room at time. I'm planning,planning,planning. Making my lists of what to put where and what needs to be picked up. I know it sounds crazy, but my life is exactly that...crazy. Never knowing where I'll be spending tomorrow makes today a priority and there is a lot to get done
to make sure the house is ready for the family if in fact we aren't here to celebrate with them. So on the outside our home will be decked for the fall and on the inside I will be decking the halls! Its really fun to be me...gotta stay busy, occupied, and exhausted or I have too much time to think on things that aren't near as happy.

Hope you and your kids have a great first day back. God bless.



Without hope...we'd have nothing.

Early Friday morning I quietly drew blood from Ashley's lines. Dave left for the hospital lab and I waited for him to return. He actually stood around and waited for the results to come in. Once they did we knew where we were headed. 51,000 platelets and we were gone!

I woke the older kids and simply said, "Throw your swimsuits in a back pack. We are taking Ash to the beach."

So this big brother...(so strong and handsome too:)

and this big sister...(who grows more beautiful by the day:)

had one of the best weekends of their lives...

making memories with this little sister(who we all adore).

As I sat on the beach and listened to the waves come in to the shore I smiled on the inside knowing that we were clinging to hope and not letting it go.

Our Ashley had made it to the beach. We had done it. With only two days left to spare of our summer we had actually taken her back to the beach one more time. The sounds of the waves put her to sleep each and every time I took her down to the water in just a matter of minutes. So while she slept, I took pictures. With my heart, with my mind, and with my camera.

NO regrets. NO wishing I would have just done it. NO wondering what if's. NO looking back over our shoulder. We CHOSE to LIVE and had an amazing, unforgettable time while doing it.

As we made the long drive home in the evening hours last night I listened to the giggles coming from the little passenger behind me and I said to Dave, "For Ash its not about the destination. Its all about the journey. She really doesn't care where we are headed...the ocean...the ball field...the doctor's office....she enjoys the journey. Its the getting there that puts a smile on her face."

What a journey its been and continues to be. I'm not even sure where we are headed, but I know that wherever we end up our family will have enjoyed the time we spent together getting there. Somehow I think that's more important than where we are actually going.

There are moments in this life we live that I wouldn't trade for anything...we had a few of those this weekend.

After a very rough last week we all needed to spend a few days hanging out together and we feel BLESSED after doing so.

Beginnings are scary. Endings are sad. Its whats in the middle that counts.
So when you find yourself at the beginning, just give HOPE a chance to float up.
And it will


Its more about her journey...

than her destination.

More tomorrow. Goodnight and God bless.



Tonight I sit surrounded by my family.

We are together.

So many nights over the last 6 years have been spent apart.

As I look at the face of my youngest child I find it so hard to imagine life without her in it. Who were we before the birth of Ashley Kate? I don't even remember that family.

I'm grateful for this moment. For the day we were given. For this night spent together.

While I'm working furiously to make memories with my children, all 3 together, and to sear into our hearts the way it feels to be a family, I remember all too well the way it feels to be apart.

May this time never end, may our moments together last forever, and my I never grow tired of hearing the laughter, the noise, and even the chaos that surrounds me when we in fact are all together.



Update 11:45 a.m. - Her vitals rock! Which seems impossible looking at her lab work. Blood pressure is perfect, temp great, heart rate in the low 90's, respirations the low 40's, and Oxygen sats 100%. Go figure? I was so afraid to get this set after being called by the lab. Defying the odds...again:) She woke up and asked to be taken into the family room. She is sitting up in the recliner(first time in days) and flipping through story books. Seriously, she looks better than she has in over a week. I just don't get it, but I'll take it.

I'm really, really tired(even after getting more hours of sleep last night than I have in all the other nights this week combined!), and I'm really, really having to force myself to get going and move today...

I'm really, really happy to be home today to do all the things I need to do. I'm just incredibly grateful to be in our home, going to both the kids schools today, running to the grocery store, compiling school supplies for my teenagers, and enjoying going out to dinner tonight with my husband.

Ashley is sleeping. Totally out. Her labs look...concerning. Really concerning in some areas. Her hemoglobin is low, hematocrit at a critical level, glucose very low despite having TPN running, bilirubin really high. In other areas things are not good, but improving. We have a few more platelets on board this morning, and her bun although really high is coming down. She's a mess on paper, and it is scary... but it is her life... it is the place we are in...and...she's home. Happy to be home. I'm sure we will be on the phone all day with different members of her medical teams trying to come up with solutions.

Thats all the news I have for now. I'm sure things will be changing throughout the day though. I've learned to be grateful for the normal and mundane, and hold on tight because it quickly spins out of control when lab sheets come back looking they did this morning.


Home and resting

Ashley Kate is home. She is resting in her bedroom, in her sweet little bed, underneath her own covers. She is tired, she is weak, but she's home.

As I pulled into the driveway and then turned around to unbuckle her seat belts she took her tiny finger and pointed to the ID band on her ankle. Tap, tap, tap...she asked me to take it off. It was precious. She knew that now she was home and no longer had to wear it. Its the very first thing she wanted. As we came into the house her head rested on my shoulder and that tiny finger of hers pointed back to her bedroom. Sweet, sweet girl. She wanted to be in her own bed. She's been sleeping ever since.

Dave and I have been catching up on all thats happened the last 4 days and trying to develop a game plan for future days. Its not easy. Its so, so hard to know that your time is limited and that your every decision has so much riding on it. Nothing has been decided and our opinions and time lines continue to change from day to day. The only thing I think we both know for sure is that we want more in depth vascular studies before moving forward. We need answers because all we have are questions. More choices. Hope.

Our goal for our dauther's life is that it be a life lived of quality. Not a day wasted. Not a moment taken for granted. We want more than anything for her to live and live a long life, but we also know that its not our decision.

Your prayers for us over the upcoming days, weeks, and months as we try and squeeze all the best days of her life that we can possibly get are so appreciated. Ash is a miracle. I think she may have a few more in her.

We will take it one day at a time. Battle each infection as they come. Continue to seek peace as we make decisions for our family. And live.

News of the day

Still no matches have been found for Ashley's transfusion. It is so unbelievable to me to think that it has gotten this hard. So unbelievable. The risk of giving Ashley an incompatible infusion is just too high. Even higher than the risk of having not enough platelets. If she were to bleed out spontaneously in an emergent situation is the only way anyone is willing to infuse an unmatched bag of platelets. light of this we, our team here, and our team in Omaha have all agreed to take Ash back home where she is most comfortable. Our ultimate goal is to save her line. It is the number one priority and so we are treating the infection aggressively. We have the ability and the equipment in our home to do exactly what is being done for her inpatient. We brought her over for a platelet infusion and it just hasn't worked out, but none of us could have predicted that.

Ashley's vitals signs are all very stable. She is no longer requiring oxygen support. We all believe she will improve in time. Its just taking a little longer and longer with each infection.

Her liver numbers are not good. This infection has hit her hard. Her bili is up from 1.6 to 20. She is glowing. Along with that high bili comes the side effects of severe itching, fatigue, and overall weakness. She sleeps a lot. We do not expect it to stay this way long term. Her history on Omegaven has proven that she does rebound once the intruding bacteria is killed off.

If we could find a match for her platelets we would infuse them. The problem we are having is that over the years Ashley's body has created several anti bodies that are actively fighting against the donor platelets. They have to test each donor's sample against her own sample and try to make a compatible match. Its so complicated. Many of you have donated and many more of you are willing. That act truly touches my heart. I don't know what to say. If you still want to donate blood it may match her and it may not but rest assured it will not go to waste. Someone will need it. Trust me when your child is in a position to need blood its the most beautiful gift you've ever received as you watch it drip into their body. It literally has saved Ash's life many, many times.

More time in our home with our little girl is our hope and prayer. More and more and more. Hopefully she will begin to perk up in the next few days as she realizes she's made it home once again.

Sweet Moments

A warm embrace...A helping hand...Joy...Laughter...Fellowship and Friends
Life is sweet!

shley Kate was surrounded by these sweet friends(and so many more) the night we celebrated her 6th birthday. There are so many things I LOVE about these images. The sweet little girls...the smile on Annabel's face...the way Kylie wraps her arms so gently around Ash to give her a hug...Miracles 1,2,3...Allie helping Ashley up off the floor...and the way Ash loves my dear friend Rachel back.

We were blessed that night and we will never forget it. Thank you so much for your presence in our lives and your attendance at her celebration. We love you Cathy and Annabel, Joan and Kylie, Rachel and Allie! Your friendships are a treasure that I hold dear. Not only in my life, but in Ashley Kate's as well.

Julie, thank you for capturing these images. They blessed my heart:)


Information Overload

As the days progress it just gets more and more confusing. My brain has been trying to process all the "new" information I am learning about Tcells and Bcells and antibodies and blood reactions and how that effects possible organ donation etc, etc, etc. Basically what I have learned is enough to confuse me to the point that I get it but I still don't get it.

As of 5:30 we have a donor that is O+, CMV negative, and they are currently mixing his blood with Ashley's to test for possible anti bodies she may have already that would react to the transfusion causing it to be ineffective inside of her body. We will know if its a match in the morning. Thats as close as we have come and I'm grateful to the husband of a friend of a friend of mine for going out of his way today and donating platelets specifically for Ashley Kate. Several people have donated and they are being ruled out or in depending on the particular antibodies Ashley has in her blood.

My head is still spinning. It has been for a few days, and I'm exhausted. Physically and emotionally. Life is so, so precious when I can force myself to ignore the bigger picture and just concentrate on the moment by moment. Its when I'm staring at this head on that I fall apart. Literally I fall apart. Yesterday was a hard day. Not because Ash is dying this time, but because the likely hood of her death happening so much sooner than I want is very, very real. I can't stand that thought. Every conversation with every physician ultimately says so. Although I know they aren't God, I do know that He has equipped them along this journey with us to be voices of wisdom and experience. He can and does do miracles in Ashley's life, but do I expect Him to have a bowel spontaneously appear in her body and spare her this part of the journey? No, I don't think that is the way He works. He has a plan to fulfill His own purpose and I'm sure I'll not understand this side of Heaven.

My heart is broken for my daughter. For my husband. For my son. For my Allison. For myself. I am powerless to stop from happening what is happening. I asked or yelled or cried out to a friend yesterday "What made Him think I could do this? I can't do this. He was wrong!"

I am not strong. I am not brave. I am not equipped.

I am broken. I am hurt. I am disappointed. I can not handle the weight of the decisions that rest on my shoulders. I can not.

If only I could give her happy days and a carefree childhood and the very best life possible I would stop at nothing to do so.

So I sit and the tears fall over what has happened in her past, over what is happening to her now, and what is to happen in her future. How ridiculous is that! When I sit in this hospital room I feel as though the very joy she gives is stolen from me. I only see struggle and pain. In our home I see peace on her face and happiness in her eyes. Even when she's not feeling well.

Oh what joy she has to share with us! What a gift her tiny life is to us. I love her so very much.

I listened to Christopher Robyn say to Pooh, "You are braver than you feel, stronger than you seem, and smarter than you think," and then I cried. I really cried. I am not those things and even if I were it would not make this go away from my sweet Ashley. How I wish it would. She and I watched Pooh in the hundred acre wood about a thousand times yesterday and each time I heard those words I cried, and I prayed, and then I laughed. Sweet moments with Ash on her hospital bed. It seems as though she and I have spent a lifetime together in these silly old beds. I wouldn't change the sweetness of our time together for anything, but oh how I would change the circumstance if I could.

I just don't know

Morning labs are back and we don't have much news to "write home about". Things are getting a little more out of whack every day. Originally when arranging by phone with her physician this admission we both agreed that we were NOT looking for anyone to "fix" Ashley Kate. We simply needed some platelets. A little fine tuning. That's all we were looking for. So...

I just don't know... I mean, her platelet level came up to 14 this morning. Not much to celebrate, but still an improvement. Is it enough to take her home with? Well, its not as much as she came here with so she still needs an infusion, but they don't have any. No one really knows when they will get a match and no one understands why her body destroyed the ones we gave her on Sunday, but it did and so giving her the other half of that pack may cause problems for her in the future. I've never seen this happen before. I've never heard of it happening before. Its just a mess. The blood bank is still working to get a match for her. We all had hoped and prayed that her body would just begin recovering and making her own. I guess it made about 25oo. Did I ever tell you how many she is supposed to have? I can't remember but it in the range of 140-450 thousand. So when I say she has 14 this morning it actually means she has 14,000. Its just easier to talk in numbers like 11, 13, 14, 50, etc. I wanted to clarify that she does have more than 11 or 14 platelets. It was 11,500 that went up to 14, 000 this morning. Most of you probably knew that already, but in case you aren't familiar with the medical jargon concerning platelet counts I wanted to clarify.

In other areas of her lab work the WBC is better which says to us "the infection is getting "better". Her bilirubin is up. WAY up. From 1.5 to 17.6. Normal range is under 1. This tells us how her liver is processing this infection and the antibiotics. Not good is what its saying to us. Although she is still swollen and 3rd spacing she is very dry intra-vascularly. Her BUN has climbed to 56. Her creatinine is up as well. This tells us how her kidneys are functioning. So...again we all say no one is here to "fix" Ash and "balance her budget" or her lab sheet so to speak. Its near impossible to do so when she has an infection. I don't like the way it looks or the way its making her feel, but it is the way it is. She has a nice glow this morning from her elevated bili. She's had no fever for over 36 hours now. No breakthrough tremors or rigors since starting the two new antibiotics. Her cultures are showing no growth at just over 24 hours. They won't be declared clean until 72, but 24 hours is progress. She has a horrible, horrible wet cough. Thick, clear secretions that are coming up from her chest, but her lungs remain clear and sound good. She aches. Her body basically hurts from being overloaded in the tissues and dry in the vessels. She doesn't like to be touched, or moved, or picked up. She is awake and alert and communicating her wants and needs.

We are sitting here administering IV antibiotics exactly as I do from our home. That is all that is going on. We aren't correcting fluid status or her liver numbers or anything I don't do for her at the house. We are waiting on platelets. So she spends her days lying in a hospital bed instead of her own. She is surrounded by pumps and alarms and people coming in and out at all hours of the day and night. She's not complaining, and neither am I. Seriously, they are the kindest, sweetest, most helpful hospital staff I have ever encountered. They are just SO nice to us. What I am saying is that its more comfortable to be sick in your own home, in your own room, in your own bed surrounded by family. It just is. I just don't know though...we still have not decided what is in her best interest. Her physician will be in the OR for a few more hours and we will talk and decide when he comes to round.

The best thing that could happen for us today is for them to find a match for her platelets and to get an infusion started. Then this very complicated part of our life will be not so complicated if that makes any sense at all.

If we go home we run the risk of any platelets that have been donated and end up matching her going back into the blood bank and having to start all over again. Thats not really appealing to us, but on the flip side as the antibiotics kick in and start to get the line infection under control then her body may create a whole new batch of its own platelets and an infusion could be avoided all together. There are really no easy solutions any more. If a platelet transfusion can get this complicated then I think I finally believe them when they say to us, "There are no easy choices, solutions, or answers for Ashley anymore. Its all hard from here on out. "

Praying for Platelets

Tonight our prayers concentrate on platelets. We are asking that Ashley's body make some very much needed platelets tonight as she sleeps and heals. We still have not been able to receive the infusion we were admitted for. They don't have any platelets available at this time, but are working with the blood of donors who gave today trying to make a match that she won't create antibodies against.

We brought her in with a level of 15,000, it dropped to 13, 000 and the lab didn't believe what they were seeing. After her infusion of the "universal ones" last night her levels dropped again to about 11,500. Spontaneous bleeding can begin at a level of 10,000. She's dangerously close to that number. She could begin bleeding around her ostomy site, her g-tube site, her central line site, a nosebleed, etc. Just the removal of a piece of tape on her chest caused bleeding yesterday afternoon. Without platelets her skin is just that fragile.

Our hope is that her bone marrow will begin to produce and her body would generate a new batch of platelets tonight. If her numbers come up overnight then they would like to send us home with her to keep her safe from any other bugs or possible hospital acquired infections. She has not had any breakthrough tremors or fevers in almost 24 hours now so we are encouraged that this combination of meds might have it under control. After 5 days of frightening episodes it would be a blessing to not see her body ache and shake with the spread of the bacteria throughout her blood stream.

Everyones' best guess is that this infection caused her body to become so suppressed that she was unable to generate platelets and she depleted her supply. Her immune system is very suppressed and she's using all her energy to battle the bacteria and has not been able to make any new platelets.

I've seen bigger miracles happen in her life overnight, and I'm confident that her platelet count could indeed begin to rise on its own. I've seen God do bigger things than this many times when situations seemed hopeless. Home would be blessing for Ash right now, but only if she's in a safe "place". Tomorrow morning we will check levels and make a decision. Your prayers for platelets would be appreciated.


Look Who Woke Up

About an hour ago Ashley Kate decided to open her eyes for the first time all day. After a little coercing she actually sat up in the bed. She is now playing Fruit Ninja.

After 3 doses of lasix she's still up about 6 lbs. Mostly in her face and neck! Thanks to SVC syndrome. Her hands, feet and legs are swollen as well, but like I said its mostly in her face. At least she has eyes today!

One of her doctors came in this afternoon and we had a long talk. My head is still spinning from it and even though most talks from our physicians these days are necessary it doesn't make them any easier to have. Our options are running out. We all know it, and it sure does hurt to have to face that reality.

We are trying to decide where Ash would be the safest while waiting on platelets to arrive. She is dangerously close to the level where spontaneous bleeding can occur and if it were to happen then it would be an emergent situation. Still though the likely hood of it actually occurring is not high. They are considering sending us home for 24-48 hours while they work on acquiring the right platelets that her body will actually use rather than attack and consume. The expected outcome from last nights infusion should have given her at the very minimum another 50,000 on board but instead she lost 15,000. That result made all involved think she has created an antibody to the infused platelets and her body actually destroyed them. The blood bank planned on taking all the platelets donated today and matching them to Ash's type and cross to see if any came in that she could accept and use rather than consume. If a match comes then they will arrive here sometime on Wednesday. Sitting in a hospital is dangerous in itself with all the exposure to her very suppressed immune system. So...we are trying to develop a plan. First though they want to get her fluid status a little better so she won't have as much trouble breathing as she did overnight. The hope is that with the two drugs they are using on this bacteria that she might actually begin to make some platelets in her own bone marrow. The best thing that could happen for us tonight is for her body to make some platelets. She is literally at the lowest level she's ever been and thats including her days of chemo treatments. Pretty scary stuff.

For me one of the hardest parts about this cycle of line infections we are stuck in is wanting to know where they are coming from. Is it something inside of her or is it something we are introducing to her when access the line. I find myself second guessing everything when in all actuality she just has a chronically infected line. Its not me. Its not Dave. Its not us. I'd like to take the blame for it because then perhaps we could correct it, but like they said to me today, "her line is colonized and the best we can do with it is try and give her quality days in between her sick days". This current bug could have come from something as simple as brushing her teeth, or it could have come from inside of her, or off her own skin. There is no telling. Its just there and now we have to fight it the best we can.

We admitted for a platelet infusion. We can't get the platelets as of yet so do we stay or do we take her home? There is no right or wrong answer. She has a very wet cough now and everyone wants to get her out as soon as possible to keep her as safe as possible. Its a very fine line we walk these days. Trying not to slip on either side of it but rather stay safely in the middle of it. Unfortunately our "feet" seem to be a little wider than the line.

Still Learning 6 years later

I guess its true that you never stop learning. The amount of "medical" jargon and procedures that have made up the "sick" part of Ashley's life is enough that I could sit down and write a book about. Seriously, I never knew I could acquire this much information.( I have NO desire to go into nursing or the medical field. NONE. Even though it is often suggested by our physicians:) Its so much so that I tell Dave quite frequently that my brain is tapped out. Seriously, I can't retain new information( such as how to do something on the computer much to his dismay). Basically if I don't HAVE to know it in order to take care of Ash then it goes in one ear and out the other. Not intentionally, its just how it works. I think my brain is tired.

So...apparently there are two types of platelet transfusions. The type that is specific, given after your blood is type and crossed. Ash is o+. Then a type called autopherese?. The second can be given as a universal type donor and anyone can get them(I had no idea about this). Last night we did a type and cross as we usually do each time Ash receives blood or its components. I assumed we were giving her platelets that matched her blood type. Instead we gave her autopherese platelets in hopes that it would work because it takes 24hours to get the platelets type and crossed and receive them from the Louisiana Blood Bank. When the doctor found out how long it would take he decided we would try the "universal" donor type(since hers were so low). So this morning when I asked what her platelet count was I was shocked to hear that it had dropped even more. Then I began acquiring my new understanding of platelet transfusions. Hence...I'm still learning 6 years later.

To say I was a little confused and disappointed is accurate. This morning the lab told us they used the blood we drew for her type and cross for something else and so we did not order the correct platelets last night in hopes that the autopherese would do the trick. I just drew another type and cross and so the 24 hour wait for their arrival begins now adding at least one more day on to this admission.

In addition to the 2 hour platelet transfusion last night we gave a 4 hour albumin infusion. When we added all of that volume to Ashley's already third spaced, fluid overloaded body she began to have trouble keeping her oxygen saturations up. She's been on 40% oxygen support through a mask since about 2 this morning. She sounds very wet. You can hear the rattle of the water with each breath she takes:(

We also added another antibiotic into the fight against this bug.

When Dave left about 8 last night, Ash was looking better. She was alert, signing, being so so sweet, and cuddling with us while she played on her Ipad. I think we both felt she was turning this around. This morning I'm discouraged by the need for oxygen, the drop in her platelet count again, and her overall appearance.

We've had little to almost no sleep. Too much going on in here all night long. Between meds, blood draws, infusions, and vitals I was up and down about every half hour to hour until 5am. We did sleep from 5-7. I'm not really feeling up to getting ready for the day. I guess the reality of this world, the one we sometimes have to live in, has hit me hard today. I just want to step back over into our other world. The one we created for Ash at home.

Its a busy week for us at home. Its the last week before school starts and the older kids have a lot going on. Not sure how to pull it all off, but I'm sure it will all work out. They are old enough to pick up their schedules and find out where the rooms to their classes are on their own I suppose. I just really wanted to be there with them because thats what moms are supposed to do. If we make it home by the weekend then I should have time to get supplies once they pick up the lists from their teachers. I'm not feeling as hopeful as I was yesterday about being here for just a day or two. I sure hope I'm wrong.

I have full confidence that Ash will come through this infection. I believe its just like all the rest. She will perk up, the meds will kick in, and we will go home. As soon as we can get those platelets back up and pull this fluid off then we are going home. Please don't mistake my exhaustion for despair. Although I know in the world of central lines that infections are dangerous, this is just part of our everyday and I don't panic like I used to. This line has been chronically infected since its placement on December 28th. It is what it is. Its our life.


Where we sit

I guess technically we sit in the PICU of Sutton Childrens in Shreveport, LA. We are waiting for the platelets to arrive. They've dropped to 13. The plan is to start infusing about midnight. Then we will give her some albumin and then some lasix. We are switching her antibiotic from Rocephin once every 24 hours to Fortaz every 8 hours. The bug shows its susceptible to both drugs, but we aren't getting great turn around results with the Rocephin after 4 days of treatment. No big plans on doing anything heroic. Just basic tank ups on the things her body is short of right now. I think we will be here a couple of days. Maybe get home Wednesday morning? Maybe?

The bigger picture suggests we need to clear this infection and get her listed ASAP, but when it comes right down to it...I'm having a really hard time with that. Its just so hard to give up Ashley Kate's quality of life right now. I know so many of you don't understand, and to be honest I don't always understand. Its just that I'm struggling with the knowledge I have of bowel transplant survival and recovery and all it entails. The odds are stacked against us in both scenarios. Either way we choose. Its going to be rough.

As a mom I'm haunted with the inability to spare her pain. I'm haunted with the idea of leaving behind two amazing young people with no one to take care of. I'm haunted by the absolute despair that surrounds a parent in a PICU situation when you are alone and frightened and exhausted. I'm haunted with images of my Ashley lying so still and so distant from me when intubated and fighting for her life. I'm haunted with memories of how hard it is to hold a marriage and a family together when separated by hundreds of miles for months and months on end under the most stressful of situations. Most of all I'm haunted by the thought of never bringing my Ashley back to her home. The truth is that I don't know if she will survive and the thought of that makes me shake inside.

If I could choose I would have chosen for this to never have happened to Ash. If I would have been given a choice...but I wasn't given a choice. The only choice I've ever been given was if I wanted to love her or not and that goes without saying.

So where do I sit when it comes to transplant? I sit in a very uncomfortable seat. There are no clear answers and no easy choices. If only you could see inside of our home every day and feel the joy and the peace that surrounds us when Ash is there. If you could have witnessed my big kids tending to her needs two days ago before I could make it down the hall to her. Blake on one side holding a towel for her as she vomited into it and Allie on the other side emptying out her bags to make room for it all to drain out instead of up. If you could have seen the absolute love and tenderness they showed her in those moments then you too would be having a very tough time taking her from them without the assurance of ever bringing her back to them. They LOVE her so well. If you could peek into our home in the evening hours right as Dave comes into the room and see the light in her eyes shine so bright at the sight of her dad. If you knew how good it feels to climb into my bed each night knowing that all three of those amazing children are safely resting under our roof. I love home more than any other place on this earth. I love it so very much not because its grand, or perfectly decorated, or shiny clean. No, I love it because its the one place that I feel complete and utter contentment in this world. No judgement, only forgiveness. No harsh words or condemnation, only encouragement and support. More laughter than tears. More good times than bad. More of everyone and everything that I love. We are at our very best when we are surrounded by each other. I love those people in my home more than anything this world could ever offer me. Keeping us a family is my priority. Its my job. Its what I do.

Transplant is in our future. Pain. Struggle. Fear. Separation. Financial hardships. They are all a part of what our future holds. I'm just not at the place that I'm ready to embrace it all again. Not yet. Please, not yet.

We were supposed to be at the beach this weekend. Just a quick trip to allow our sweet Ashley to feel the waves roll in over the tops of her tiny feet. A few more days of banking memories with our kids together. Its the one thing I had on my list to accomplish when bringing Ash home this past year that I had yet to do. Tomorrow I had planned to begin decorating our home for Christmas. Another distraction that I very much need and an assurance to me that it would be in place for Dave and the children even if Ash and I are called away. Something that I need to have done before I leave. This infection, this admission was not what we had in mind for Ash. She's been so strong and so happy and so good. Bouncing back time after time. Proving to the world that God is not finished with her yet. Instead I'm sitting here in the PICU being asked once again about DNR's and the like and to what extent we want to go if things take a turn for the worse. Not that its expected, but its becoming painfully obvious that we are at the place that the conversation has become necessary to all who care for our Ashley.

Your prayers for Ash are always appreciated. After 6 years of ups and downs I am so humbled by those of you who still care. Who still pray. Who still encourage. I guess selfishly I would ask that your prayers for my heart over the coming weeks would be added. I don't know how I'll ever say, "Its time, lets list again." I just don't know how to take from her all that she has and all that she knows. I don't know how I'll ever be ready.

The other night I shared with Dave that I LOVED Ashley Kate at 1 years old(when we first had her transplanted), but at 6 years old I more than LOVE my daughter and know that I can't do this world without her in it. It just seems so cruel. So unfair.

So thats where we sit tonight.


Klebsiella Pneumonia is growing in Ash's central line. Both lumens. It is showing that it should be susceptable to the Rocephin, but we will be looking into other possibilities since there has been no change.

Her platelets tanked to 15 today and she is in need of a transfusion.

Our physician in Longview had a death in the family and is out of town. There is not another physician in our town willing to even look at Ashley Kate. Not even for just a blood transfusion. So...we are being directly admitted to the PICU at Sutton Childrens as soon as we can get there.

Ashley Kate remains the same. All vital signs are strong. The infection is causing trouble inside of her body though and she has to have more platelets on board. Something as simply as a dressing change could cause a bleed and she would have no ability to stop it.

We are all on the same page. Not planning on a long hospital stay. Mainly going over to infuse and monitor then get her back home as soon as possible. NO one is looking to "fix" Ash. We all know there are many, many parts of her body that are "broken", but looking for a fix is futile and will not do anything but stretch out into a long hospital stay. We are all working to get her into a safe place so that she can spend her days in our home.

More Labs

Dave is at the hospital now with more lab work. Ash just doesn't seem to be responding to the antibiotics prescribed to her last Thursday. If it were the correct one we should be seeing some level of improvement by now and I just don't see any. She is huge. Miserable. Dry. Very thirsty. Feverish. Trembling. Etc. Etc. Etc. No change in her condition. None. I don't find that very encouraging.

We are giving fluid bolus', but if her albumin has tanked(which it usually does) then they wont stay in the vessels where she needs them. The fluid is just leaking into her tissues making her more dry and more swollen. I hate the whole cycle of infection. It seems as though you just have to chase and chase and chase the same issues until you get some kind of help from the antibiotic. I'm really hopeful that sensitivities will be in this morning or an ID or something new to help us fight this infection.

Being sick on the weekends pretty much sucks too. Whether your inpatient or out getting any kind of help is almost impossible. We never heard a word from the doctor on call yesterday about Ashley's labs and more importantly her low level of platelets. I'm not surprised. Irritated, but not surprised. I'm just hanging on till Monday battling this bug with the tools we've been given and hoping Ash can keep on fighting until someone shows up in the offices in the morning.

Vitals all remain strong. Thats the most important thing. Her organ systems are all functioning. If at anytime things change in this area then our plan will change too.

For now Ash is sitting up in her chair. She's not comfortable anywhere, but needed a break from lying on her back in the bed. She is tolerating the chair. We need her in a seated position to help the fluid drain down from her face and neck through those very occluded and scarred down veins.

Overall I wouldn't say that she's any worse and I wouldn't say that she's getting any better. Still sickly. Unfortunately for her she has to have a dressing change today and a shampoo. How I'm going to manage that at her current weight(she's close to 10lbs heavier with all the swelling) I have no idea, but it has to be done.



Sweetly sleeping

Where did they go?

Sweet Ash slept soundly for almost 20 hours straight. No matter what cares were done she continued to sleep through them. A few times she opened her eyes to see who it was touching her, but mostly she just slept. She's awake now. Has been for the last couple of hours. Not comfortable. Not happy. Just awake.

Her vitals are all strong. Dave and I have been checking them frequently. She is stable. She is peeing. Her lungs are clear. We had a CBC run a few minutes ago and a metabolic panel. I'm looking for clues. Signs that may tell me what this infection is doing to her body. We received a call back from the lab that told us her CBC was all good except for her platelets. Only 25 registered when spun out in the machine. If that is in fact a real number and not a mis calculation then she needs a transfusion. We are waiting to hear back from the physician on call. Our pediatrician is unavailable this weekend and so a doctor who has never seen and knows no history on Ash will be informed of her labs. The lab is going to call us with any alarming results on the metabolic panel as soon as they finish it.

Ashley is third spacing. Its just become the norm now with her line infections. Her body just can't handle them as well as it used to and she always morphs into a new shape thats totally not recognizable. Its scary to see, but we are becoming used to it.

We still have no sensitivities back or an ID on the bacteria that has invaded her body. Hopefully we will know more tomorrow.

I guess the biggest question looming currently is where did all her platelets go and why are they gone?


An attempt...

At putting my heart, my hurts, my feelings into words tonight. Just an attempt because truly I struggle to find the right ones to use.

Dave and I stepped out tonight to try and escape reality even if it were only for two hours, in the dark, holding hands, while watching a movie. Sadly though even the dumbest of movies can bring me to tears and cause my world and its reality to crash down around me. So as I sat watching Planet of the Apes nonsense with my husband tonight two words, or actually two signs caused me to hurt so deeply and sob so hard on the drive home that I became physically ill. Home, please.

As I literally feel apart on the short drive home crying so hard that Dave could barely make out my words the weight of it all came bearing down on my heart. As we pulled into our driveway I said, "That was a stupid movie about monkeys. I don't want to see that again." To which my husband replied, "Well...I didn't quite draw the same parallels between it and our life that you did, but I'm wondering ... so which one was Dr. L?" And then I laughed. Really hard. If you aren't in our transplant world at UNMC then that makes no sense to you and thats ok because if you are in it then you know why I was laughing so hard. I'm pretty sure Dr. L doesn't read this blog so I'm safe in sharing that with you all. And no...none of them reminded me of Dr. L. It was just funny.

"Home, please." Thats all it took. Why? Because when my sweet Ashley looks at me with tears in her frightened eyes and signs "home, please" there is nothing I can do. Nothing. I won't have the ability to choose that for her. I won't be able to say, "Enough. We are going home. NO more." Once we go back then we are back there until they say we can go home and that is an unbearable thought. Not only can I not choose when to take my sweet Ash back to her home but I lose all ability to make choices for her. Period. As I cried I tried my best to explain to Dave. CT scan? Whenever they say. Blood draw? For whatever reason any body sees fit. Back into the OR? No say so. Flip on the lights? Just because with no thought to a sleeping baby girls comfort level. I know, I know, I know that its all being done in her best interest, but it doesn't change the fact that it is being done without explanation, without being part of the decision making team, without my consent. Its just being done. I can no longer protect Ashley Kate from any of it being done to her whenever someone deems it the time to be done. I am merely a bystander. I will be informed of it and that is all. I can only attempt to comfort her through the process, but protect her from any of it...I can't. At what point do I yell, "Stop because its not longer being done for her but to her?" Is there a point that it comes to that? I don't know the answer. I truly don't.

What I do know is that we are in an impossible place. IMPOSSIBLE. I do not want my daughter to experience another moment of discomfort in her life, and yet if I do not allow that to take place then she will die. HOW is any mother supposed to choose in this situation? HOW?

She has yet another line infection. They are coming every few weeks. She has bounced back and recovered again and again over this last year, but that can't go on forever. We know that. Dave says we are at a fork in the road. One direction leads to death. We don't know when it will come or in what exact form ,but it is certain death. There is a cliff at the end of that road. The other direction has a small glimmer of hope shining at the end. What is on the other side of each bump in that road is unknown to us and one of those bumps may very well end her life, but there is still that small glimmer shining at the end. The other road is just dark. No glimmer. Just a cliff. One that we will eventually watch her fall off of. So...what do we do? Do we travel the road with the cliff at the end of it and try to make the most of every single day until we reach it or do we travel the familiar road with all those painful bumps along it in hopes of making it to the end where the light of hope shines?

At the end of each day my goal is for Ash to live a happy life. If I only knew how many days I could have with her then I think the choice for me would be easier. Tonight it all seems so cruel. So unfair.

Ashley Kate lays sleeping in her own bed tonight. She is weak. Really, really weak. Her pulse is strong. Her temperature is down. Her oxygen sats are high. Yet, she lies so still, so exhausted, so worn out from battling this infection. We still do not have an ID on what is growing inside of her blood stream. We still do not have sensitivities. We are treating with Rocephin because all we know is that she is growing gram negative rods. It could be anything from E coli to psuedomonas to Klebsiella. We just don't know yet. All we know is that she is out of it tonight and its frightening to see her lie so still and so unresponsive. My heart breaks to not see her twinkly eyes and sweet smile. This afternoon she pulled me in close to her and hugged my neck as tightly as she could. Tonight she doesn't even open her eyes when I kiss her forehead and whisper to her how very much I love her.

My heart hurts. It hurts so bad. I don't wan't this time in our home with all of us together to ever end and yet I feel as though we are watching it come to an end so much sooner than we had hoped. Ashley and I will be back in Omaha one of these days and Dave, Blake and Allie will stay behind. The thought of that has tears rolling down my cheeks faster than I can wipe them away. Ash will hurt again. She will teeter between life and death again. She will have to endure the pain, the confusion, and the odds stacked against her once again. I hate that. I really HATE knowing that and being powerless to stop any of it.

So there is my attempt at putting it into words tonight and as I read it back I see that I failed. It doesn't even scratch the surface on all that swirls though my head and hurts my heart. Not even the surface.



In less than 12 hours we have a positive culture from Ashley's line. Makes my heart sad.

Gram negative bacillus is all we know at this point.

She has been fever free and sleeping all day long. Very, very tired as her little body fights against the bug.

Its hard to see her beautiful little face and know that her body is so incredibly broken. When I check in on her she looks so peaceful and so sweet. Like she's napping. Deception. Its like a cruel joke. I see such perfection and such beauty when I look at her only to be followed by the realization that nothing about her body and her anatomy is perfect. Its all broken and that breaks my heart. She has a central line, her one and only hope at continuing on in this life, and its infected. Again. My heart is broken.

Holding on to our good days as we fight our way through the bad ones.

We are waiting on meds to be called in. She is home and will remain here unless things take a turn. Her vitals are all stable and she's holding her own. Just resting.

Too Good to Last:(

Yesterday afternoon we were sitting in her physician's office in Shreveport. "She looks really good. No fevers? No issues? No signs of that line infection, huh?"

"Well, I guess we must have cleared it then. I'll see you guys in a month."

Seriously? A month between appointments is what we have been working toward for an entire year now.

A few hours later... lethargic, trembling, low grade fever, and nausea. I'm not joking. Through the night her fever spiked to 101.8 a must culture number in transplant patients. We took blood to the lab. I'm almost 100% positive its a line infection. I know Ash. I know her textbook symptoms. We are just waiting for growth to start to get some meds called in.

I guess it was just too good to last. She was well for her birthday though and that was a blessing. The heat was hard on her, and we allowed her to call the shots. She went in to cool off when she wanted to and made appearances outside when she wanted too. She's been a little off all week, and I thought she was just tired from all the activity. Maybe she was, and this infection just came up yesterday afternoon. Not sure, but either way its back into battle we go, and that makes my heart sad for Ash.


Ashley Kate's Birthday Carnival

Ok...this is VERY long. You do not have to watch it. I know its tooooo long, but there are more than 15oo photographs to go through. I love it. Love it all, but I understand that after about the first 25 your going to get really, really bored. They aren't in any type of order. I just couldn't do it. Its taking so long to go through the pictures=)

Details? Such as what I did to create it, games, concessions, prizes, entertainment, etc, etc. I'll have to write an entirely different post. There is just so much to talk about.

Mainly I tried to capture and share with you the spirit of the day. Its was almost exactly what we had in mind. Our guests are truly some of the best people we know. They all came out of their love for our daughter and that brought us to tears. I wish you all could have been there with us.

At the end of it all I stood back and realized that she really is still with us. She is growing and thriving and living. All things that we were told could not happen. She did in fact turn 6 years old and although I have no idea what this next year will hold for her or our family I do know that we are LOVE her more than ever. On this day we celebrated Ash and her life. That was our focus. If you did attend I hope that you were blessed and that you did in fact have a great time. I know we did.


Sneak Peak...

Ashley Kate and her birthday cake. Baked with love by my talented sister.

Ashley's Birthday Carnival was AMAZING. There are soooo many wonderful pictures that capture the spirit of the night. It truly was a celebration of her life and of those friends and family who have loved us and loved her for her lifetime.

Look at those feet. Only two guys I know with feet that size! John and Blake:)

These photos are just a peak into what is coming. Soon. I promise.

Our very own mid-way. Loved it!

The photographer's pictures are a thousand times better than mine and I'll have those ready tonight. I think=)

Allie, Jessie,and Brooke

We laughed and played and enjoyed the spirit of the carnival for hours.

Blake and his Allison at the Kissing Booth

I can't thank our friends enough for being here with us. Celebrating the life of our daughter with us and for carrying us in the good times as well as the bad.

Goofy Grandparents

We were silly. We were hot! I can't believe how hot it was out there. We were happy to have been given another year with our sweet Ashley.

Love this picture! Love these young men.

Stay tuned. I'm working on sharing all the details.

A HUGE thank you to some of the most amazing young people around for pitching in and volunteering to work the carnival for us. Friends and family alike. Each of you were a huge blessing to us.



To celebrate the life of this beautiful girl today!!!

Its finally here. Ashley Kate's 6th Birthday Carnival is today. Its going to SO MUCH FUN!

A good party is all about the details and I hope that I have not left one single detail unattended. Its been a joy to work on this project. An absolute joy. Its going to be a busy, busy day followed by the best birthday party I think I've ever planned.

We are so enjoying our 6 year old and Dave and I can't keep from saying to each other, "She's 6. Can you believe she is 6 years old!"


How could I have known?

Six years ago this night I lay my head down on my pillow after kissing those tiny foreheads of Blake's and Allison's. I closed my eyes and I'm sure I whispered some sort of prayer. I usually did. could I have known that just a few hours prior to that prayer being said one of my most heartfelt prayers had already been answered? How could I have known that a tiny, precious, miraculous baby girl lay in a NICU just a couple of miles away from my home waiting for me to come for her? How could I have known?

I woke up that next morning and went about my day doing those things that I usually did. I remember Dave came home for lunch and we had a normal, nothing special kind of meal, but if I had only known how our lives would be changed in just a few hours then I might have planned something special. How could I have known?

I loaded the car that afternoon with an ice chest and Blake's bat bag. I was hurrying to get Allie's hair fixed and get Blake in uniform. I had planned to leave for the Bomber's big pre- season tournament the moment Dave pulled in from the office. How could I have known that God had a different plan for my life that day? How could I have known?

The phone rang a little after 4pm and a sort of familiar voice was on the other end. "Do you have a moment to sit down?" I lied, "Sure, I do". How could I have known that very phone call would change our lives? How could I have known that our daughter had been born the night before? I think if I had known I would have lived my life a little differently that day. I think, but how could I have known she way lying all alone, so fragile, so new, so amazing? How could I have known?

That night things didn't go exactly as we had planned, but how could I have known that God was at work behind the scenes? I didn't get to peek through a nursery window at our daughter. I didn't get to see her face. I didn't get to meet her or hold her or kiss her. No, it would be three LONG weeks before any of that took place. In the tears that fell on my pillow that night how could I have known that God in all His wisdom was at work? Laying it out according to His plans to prosper her and give her a future? How could I have known? I didn't have His eyes and I didn't possess His knowledge. I only KNEW that she was mine. I only KNEW the pain of being denied her. I only KNEW that some how, some way this was the child Dave and I had waited for. Had longed for. Had prayed for. How could I have known that our path to her and her path to us would be laid out by the very hands of the God Who created her? How could I have known?

How could I have known that 6 years later I would be remembering some of the most exciting, most painful, most confusing nights of our lives? How could I have known that in those long nights that we waited and prayed and pleaded for her and for His will to be done that He would be growing us into who we HAD to be in order to be called her mommy and daddy? How could I have known? I couldn't see. I didn't understand. I didn't know.

How could I have known that the road ahead wouldn't just be filled with giggles and coos? How could I have known that she would spend the next 6 months of her life in a NICU bed hundreds of miles away from her nursery? How could I have known that I would travel those highways day after day after and sit night after sleepless night next to her tiny incubator just waiting to bring her home? How could I have known?

How could I have known the lengths I would go to for one of my children? How could I have known how deep a mother's love truly is? How could I have seen the AWESOMENESS of our God without those days spent in that NICU? HOW?

Tonight I listen to her giggles and tears fall. How could I have known how incredibly special it would be to celebrate her life? How could I have known? 6 years! Another year after being told it would never come? How could I have known that she would make it to this day? How could I have known that when I brought my frail, dying, fragile 5 year old baby home last August that she would defy the odds and that her life would once again announce to this world, "Not yet, He's not finished with me yet, not yet."

How could I have known that our Father would use the birth, the life, the story of a tiny baby girl to grow and mold and change the hearts of this family? How could I have known? I wanted, I needed, I prayed for a what I thought would be a beautiful, perfect baby, but how could I have known what He had in store for us was SO MUCH MORE than our hearts could have EVER conceived? How could I have known that her tiny, broken, not perfect body would be the instrument He used in our lives to bring us to our knees?

Ashley Kate, I knew I loved you before I ever met you, but how could I have known how amazing it would feel to be loved BY YOU? I couldn't. Only He knew. What I didn't know He did, and does, and always will. May my eyes not lose sight of that, may my heart not grow weary of it, may my life NEVER be the same because of it. Happy, happy birthday baby gherkin. You my sweet could I have ever known?

The HAPPIEST of Birthdays

Good morning Ashley Kate,

Its here! Its really here, Ash! You did it. You made it to today and I am SO proud of you my sweet, sweet girl. You are 6 years old! How blessed are we!

Ashley Kate the light on your face, the twinkle in your eyes, the joy of you smile, and the precious sounds of your laughter do not reflect the pain of this past year, and I am SO grateful for this. Instead you radiate peace and happiness and contentment and a zest for living that I have rarely seen in any other. I know without a doubt that the Father has given you a very special heart. A heart that only sees good and only feels joy. You know no sadness. You refuse to let any struggle keep you down. You give and give and give back to this world and to our family despite the hard days you have. Ashley, I love you so much more than words could ever tell. Each day I give you a thousand kisses and I drink you in while I have you so close to me. You wrap your arms around my neck and squeeze so tight that I feel every ounce of love you have to give in that moment.

Every day with you there are a thousand things that bring me to my knees. Just to see you open your sleepy eyes each morning and greet me with a tiny smile is enough to make me thankful to our Father for my whole lifetime! That is just the beginning. Your hugs, your kisses, your smiles, your giggles, your ornery attitude, your stubborn will, your independent defiance of disability, your precious face, your yummy smell after a bath, your long hair, your presence in this home, your snuggles, your love of animal sounds, your new fondness for shoes, your silly interest in Myth Busters, your favorite spot, your everything brings me to a place of gratitude. An honest feeling of gratefulness that is so raw and so pure and found in the simplest of things. Ash, I love you for giving me that. Without you I know I would have never grown to this place in my own life. So many things I once took for granted and now see as gifts. Absolute gifts from a loving God.

What do I hope for you in this 6th year? A MILLION things! More than anything I hope for you to feel the love of all who know you. To feel loved Ashley Kate is the very best of things. To know you have a place to call home, a family to surround you, and a God to protect you are the most precious of gifts. Despite anything that comes your way Ash if you know in your heart these three things then I know you will overcome it all. I wish desperately that I could promise you there will not be anymore struggles, or scary days, or painful times. If only mommy could make that promise. Since I can't promise you that I will promise you this instead. I will be near you on those days, through those struggles, and in painful times. You will not endure them alone. Your mommy will go there with you, she will fight to protect you, and she will pray without ceasing for you until we make it back to happier places. We will do this together Ash. Never a day will you be asked to fight alone. Never.

Sweet Ashley Kate you are so loved. Did you know daddy loves you and mommy loves you and Blake loves you and Allie loves you and Jesus loves you? Did you know?

Happy Birthday baby gherkin. Today is a day of celebration. A day of joy. A day of happiness. It is the day the Lord had made and it is the day He gave to us a gift that we so desperately needed in our lives. Its you!


So Unbelievable!

Here I am only days away from Ashley Kate's 6th birthday, and I find it SOOOOO unbelievable to be at this place. Seriously, we have been planning, constructing, painting, sewing, and organizing for so long that I'm almost giddy with excitement that she is in fact going to turn 6 years old.

A year ago I was pleading with an Almighty God, our Father, begging him to allow her to be 5. I so desperately wanted her to hang on till her 5th birthday. In those weary days I couldn't see a year down the road. All I could see was making it moment by moment. Its been such a hard year for our family, and yet it has been a year FILLED with precious moments, memories, and joy. Its hard to swallow the hurt, but as it goes down a sweet, sweet taste is left behind by all the good days we have in between the bad. I'm not sure if any of that makes sense, but its the best description of what life has been like in our home.

We still cry lots of tears if we allow ourselves to sit still for too long, so I just don't allow that to happen to any of us for very long. I keep us busy, busy, busy living. Family life is the most precious part of my life. Its what I thrive on. Keeps me going even in the tough times.

We are a mere 3 days away from our tiniest pickles 6th birthday and only 5 away from the most precious carnival party you have ever seen starring the most precious 6 year old I know. I'm SO excited and its so hard for me to believe.