Busy, Burdened, BLESSED

This summer is flying by at record speeds.  Our schedule with our two teenagers is busier than ever.  I've spent most of the summer on the road from this tournament or that, and I have loved every single minute of it.    At least all the minutes that I can stay awake for!  Traveling with Blake has been so much fun.  We laugh, sing, act stupid, and have an overall great time.  Making memories of being on the road with just the two of us, and I realize these are the times I will not regret.  We have had some success on the ball field and as always a few failures since thats the way it goes when playing baseball.  Last weekend we were thrilled to watch Blake hit a grand slam out of the park that just so happened to be in my home town where all my siblings and parents live.  It was SO exciting to have his grandparents, aunts, uncles, cousins, and close family friends there to witness.  He also had the amazing opportunity of pitching 5 innings at OU.  He did a great job and I was so proud of him.  Allie is in the middle of cheer camp this week.  She's exhausted, overwhelmed with all the new material, and having the time of her life as she learns to navigate the life of a high school cheerleader.  Visiting with her each night before bed brings a smile to may face and a little bit of sadness to my heart as I witness how very grown up she has become.  Last week as Dave dropped her off at an activity he called to let me know he was crying.  I questioned him as to why and his response cracked me up, "I almost cried after dropping her off at her very FIRST high school event."  I've always loved him, but when he shares how much being a dad means to him I really love him.  I was feeling very sentimental and then he added, "Then I really cried when they told me I had to pick her up at 5:45 a.m!"  And that is the other reason I really love him...he makes me laugh.   Allie has also been playing summer volleyball and basketball in addition to all the cheer stuff.   As those two summer leagues tapper off then the real work for making the team begins.  Two a days!  She never stops and never slows down.  Blake and I leave out early tomorrow morning to play at Rice in Houston for the next 4 days, then next week will follow that up with a tournament at TCU, and then on to Georgia for Nationals.  Busy, busy, busy.

Last night my dear friend and I were catching up on the phone when she received a call that her toddler had been in a near drowning accident at the neighbors pool.  I was instantly burdened for one who has loved us through the hardest of times in Ashley's life.  Knowing the fear and uncertainty that must be rushing through her mind all I could do was pray.  I tried to stay calm and be strong, but on the inside my heart was racing.  Totally racing not knowing the exact outcome except that he was awake and "fine".  I spent the night in and out of sleep hurting for my friend who was by her baby's bedside in a hospital room.  She's spent many a night next to me and my baby's bedside in hospital rooms.  Its a rare thing in this life to meet someone who loves you so unconditionally.  This is my someone.  She's my closest friend.  I'd go to the ends of this earth for her or her children.  Our friendship is a beautifully orchestrated event by the very hands of our God, and I'm thankful daily for her.  I woke this morning from a nightmare that was a mixture of her real life event last night and my sweet Ashley.  He spent the night in the ICU, they discovered he has aspiration pneumonia, and is on oxygen.  We are grateful for the sparing of his little life.  Grateful he will make a full recovery.  Grateful for God's grace in times where we need it the most.  Burdens are heavy at times in this life, but there are usually Blessings just around the corner that outweigh the heaviest of burdens.  In this case, sweet Brady is with us and my friend will rock her little boy to sleep another night.

Finally, I say we are BLESSED because our last set of blood cultures have NOT returned positive!  We have NOT received any middle of the night phone calls alerting us to positive growth.  For the first time in 9 WEEKS we may finally be clear of this monster bacteria that has been threatening the future of our Ashley Kate's life.  I can't express how blessed and relieved we are in words.  If all stays clear and nothing crazy happens Ash will spend her first day in more than two months without antibiotic infusion or lock on Friday.  I'm so excited and grateful.  So grateful!

Busy, burdened, but always blessed.  Life is a journey that speeds by us in record speed.  I'm doing my very best to take the time to remember the days and not forget the moments that cause me to pause, look up, and whisper my gratitude to the One who gives it all.

Enjoy the rest of your week!

Made the list...

...barefoot toes in cool green grass.

A big sister who shares snow cones with a little sister.

Images of the trees outside my window through the bamboo blinds.  Seriously, its a beautiful sight to see first thing when I open my eyes.

Relationships that can survive disagreements, disappointments, and decisions that don't always make sense.  The knowledge that it doesn't matter what comes along, the person is what is important.

Her love of  Myth Busters.

Wearing my pajamas all day long because I don't have to go anywhere.

Knowing the joy that fills the boys heart when they come into the house and smell dinner cooking.  My guys love to eat.

Cucumbers fresh from our garden

Watching Ash snuggle her little self underneath her blankets

The sound of thunder rolling across the sky.

Ashley's desire to feel the cold rain on her skin

The inviting shade of blue in the pool.  The color alone makes me want to jump in.

7th birthday invitations

Allie B.

Conversations with Blake

Patterns

Tonight as I worked with Ashley Kate's meds I found myself staring at this beautiful little girl that lay sleeping so soundly.  I pulled back her pj's to expose one lumen of her central line and was struck by the new pattern of veins that had emerged just underneath her skin.  My eyes followed them across her chest and up her right shoulder and onto her neck.  I just stared at her.  For a long time I stared at those patterns across her torso, up her shoulders, down her arms, and onto her neck.

These were new.  I know her patterns like I know my own name.  Just something I can recognize, could even draw from memory if I was ever asked to(although I know I'll never need to have this ability:).  In the past couple of days this new branch of patterns has emerged.

I have two schools of thought as I stare at my girl.

The first is this, "Wow...her veins are really struggling. Clotting, scarring, becoming blocked by the long term intrusion of her central line."  Honestly, its very scary to see the hundreds of collateral branches.

The second is this, "Wow...its amazing how God created her.  Allowing her to compensate and continue the flow of blood to her body despite the intrusion, scarring, blocking, and struggling of her vein branches."  Honestly, its very comforting to see how much He is taking care of her.

Fear and wonder all mixed together.

Survival despite the obstacles.

Gratitude no matter the source of the pattern.

I traced those patterns ever so lightly with my finger tips.  Feeling the softness of her skin on my fingers.  Whispering to no one really how very much I love her.  I really, really love her.  In the stillness of her room my heart is overwhelmed with the goodness of our God and the gifts He has given me through the life and struggle of my youngest daughter.

Seeking Solutions

I just got off the phone with our pediatrician who has been battling alongside us against Ashley's line infection.

Basically we are all stumped and are seeking solutions to clearing this bacteria out of her catheter.  Both lumens of her central line continue to return positive blood cultures.  We have drawn 9 sets of cultures in the last 6 weeks.  All 18 bottles of blood have grown the same bacteria.

We are all in agreement that  her blood line is clear.  Otherwise she would be very sick, symptomatic, and probably hospitalized.  Thankfully this is not the case.  The bacteria has attached itself to the plastic catheter that resides inside of her chest.  At this time her blood stream is sterile.

A late afternoon conference call has resulted in an email being sent to the head of infectious disease at one of the countries top children's hospitals.  He is an expert in infectious disease and very well respected for his opinions.  We are all hopeful that his response will result in a solution to this infection.  For the time being we will continue the course we have been on for the last 6 weeks because although it has not resulted in clearing her line it has kept her blood stream clear.

The problem with 6 weeks of daily antibiotic infusions is that her kidneys and liver are being forced to metabolize the drug causing those organs to struggle even more on top of the other damages they have sustained since explantation of her transplanted bowel.

Its all very confusing.  Very worrisome.  Very complicated.

But...

She remains unaware.  Smiles every waking moment.  Giggles contagiously.  Lives fully.  Blesses those of us daily who have the opportunity to love her.

In the face of a serious situation such as this...what more could a mom ask for?

We remain blessed.  Burdened but blessed.  Thank you so very much for your prayers for our gherkin.

My list

Tonight my heart is heavy with the weight of many things and I feel the tears welling up inside of me.  As I sit here in the dark wondering just how and what and if and when we will ever clear this infection from Ash's line I began to think of the gifts in my life instead of dwelling any longer on the worry and the fear.

So here goes...

Tiny hugs and kisses from a deliciously shampooed baby girl

A long car ride home last night with the very best 16 year old kid I've ever known

An afternoon visit from a friend

Laughter spilling out from our Allie and one of her BFF's in the back seat of our old car

The sounds of Nora Jones softly playing in Ashley Kate's bedroom tonight

Home.  The place I  come to sit, to escape,  to relax and allow the whole world to slow down if even for just a moment

A message found on my email tonight from my cousin with her plans to attend Ash's 7th birthday.  Thank you SO much for loving her.  It means the world to me.  Hope to see you there:)

Dave

Three baskets made in the game tonight off the hands of Allie B.

Giggles

The robin who hopped around my feet this morning as I watered the tomatoes in Dave's garden

Iced Tea

The phone call made to the office this afternoon offering to loan the bales of hay for Ashley's Acres to us.  Thank you Angie:)

Baseball and the little boy who grew up to be a young man that loves the game so much

My mom's willingness to be such a help to me

Grandma Mary's quilt and how it feels, smells, and makes me remember nights spent at her house as a child

Strawberry plants and how incredibly sweet those tiny blooms are.  I smile every time I walk out back to look at them.

Holding his hand

Her beating heart, breathing lungs, and survivor's spirit.

Grace

Thank you Teresa for the gift.  I dove into the pages this weekend and it came at a time in this journey where I had begun to fee lso weary.  The words on the pages are bringing me back to the place I so need to be.  I began my list of 1000 tonight.  Just thought I'd share the first 20.

Totally Loving...

Ashley's party theme this year!!!

As things begin to take shape I get more and more excited about my girl turning 7 years old.  I can't tell you how adorable she's going to be when she makes her appearance at "Ashley's Acres"!

We are busy hand making stick ponies, mason jar lanterns, table center pieces, burlap pillows, bandanna napkins, and picnic quilts!  This is so stinkin fun and a great way to spend our days this summer between baseball showcases, volleyball games, and summer league basketball.

I hope to have signs painted, the barn built, and a fence started by the end of next week.  Then it will be all about finishing up the many small details as we push toward the day we all enjoy an evening spent Down on the Farm at  "Ashley's Acres".

We currently have chickens, a rooster, a pony, and some baby bunnies coming as our special guests.  Still trying to locate a little goat and 40 square bales of hay.  Anyone know where or how to get a hold of square bales?  I'd love to lease them from someone since I'll only need them for one night.  I can't imagine how I'll dispose of that much hay if I have to buy it for keeps!

Just a little update and a reminder to save the date, Saturday, August 4, 2012.  Dinner will be served around 7.

Proof Positive

Just a glimpse at our girl and proof positive that she really doesn't look as though she's sick.  She is too busy playing and going about her business of being almost 7.  

Ashley Kate traveled with us this past weekend and between the games we spent some time at the park across the street.  Ash has more fun watching Blake and Dave act like little kids than she does playing herself, but what matters to us is that she laughs.  Oh my goodness she laughed and laughed at those silly guys!

I love this picture of her.  She's directing traffic.  Telling the guys where she wants them to go next and what she wants to see happen.  She spends most of her life with that little finger pointed using it to run our house.  I love her and her attitude!  Notice the wrists behind her in this shot?  He had just fractured the right one moments before crawling through a tunnel in an attempt to beat the time of the young guys.  We aren't young anymore.

I spent the morning watching my guys help my littlest girl play and play to the best of her ability.  What a blessing to have those couple of hours to relax and watch my girl at the park.  I sat back and witnessed the love from her big brother and her daddy flow through their hands into the life of our tiny girl.  

Proof positive that life is good and we are blessed even when things around us aren't always great.  

Still Growing

Its been one month and one day and Ashley Kate's central line is still growing gram positive enterococcus faecalis.  Never in the very complex history of her life has she had an ongoing in infection for this length of time.  I'm beginning to fear that this may be the one that we are unable to clear.  What all that means is kind of up in the air with no clear answers.  My heart skips a beat or two when I stop and think about it for too long.

On the other hand she is doing amazing in spite of the infected line.  It is obviously not a systemic infection at this time.  She may run a low grade fever for a little while each day and her renal panels are all out of whack but other than those two issues she is just fine.  She is happy and playful and funny and opinionated and her normal 6 year old self.

Its hard to balance the very sick inside with the very normal outside.  I know she's sick with a life threatening infection on the inside of her.  She really is very sick.  She's just unaware of that fact.  I love that about her and I'm so very grateful that its not affecting her quality of life of this time.

Each time we draw cultures I find myself becoming more and more discouraged as the phone rings and I see it is the hospital calling.  I know so many of you have ideas and advice or suggestions on how to treat this line infection and I do appreciate your sharing.  One thing that we have to balance in the world of transplant is the ramping up of her immune system.  She still houses two donated organs inside of her little body and many times the treatment options, especially the all natural(which of course is what we would love to be able to use with her) do exactly that...strengthen the immune system...which in turn may cause her to reject her organs.  The last thing we want to add to this complex situation is a bout of rejection.  It would be devastating to her well being at this time.  We have to balance so many things when dealing with Ash and her organs.  Its not a simple case of "just an infection".  Its very, very complicated.

We have had some ups and downs lately.  Seems like one thing leads to another and another another and I find myself trying to keep my head up.  Just normal life stuff thrown into the mix of line infections and transplanted organs.  Two dead car batteries, a flat tire, a broken wrist, and positive cultures twice all in the same week can begin to over whelm.  Like I said, normal day to day stuff, just seems magnified when running on little sleep.

On the positive side of things Blake had his first summer tournament this past weekend and played really well.  He hit an amazing shot that left the field for a two run homer and it just happened to happen in front of some scouts that were there watching.  He had met one of them the previous day and after watching him catch two games they had some great things to say about him.   Makes a mom and dad smile when chasing a dream with one of your kiddos to see good things happen for them.  He has a full schedule this summer and we will be traveling each week to a new location.  A week from today he has his first major try out and all though we know its a long shot to actually get chosen we are so excited he was given the recommendation and formal invitation to attend.  Just a small step closer on the long, long journey of playing college baseball.  Two more years to make it happen!  He is playing ball with two of his closest friends and a great team of players with an amazing coach that he respects.  It all adds up to making it the summer of a lifetime for him.

Allie is busy, busy training for volleyball as she prepares to try out for the high school team in just a month or so.  She's also playing some summer league basketball and trying to decide if it is the path she wants to pursue in the next few years or not.  I'm a little nervous for her as she plans to play 4 sports and cheer next year in addition to everything else she is involved in. I know without a doubt she is capable of doing it all, I'm just worried about that knee of hers.  She's an amazing athlete and so very talented.  She continues to grow and mature more and more each day.  She keeps us laughing with her fun personality and keeps us on our toes as she grows more beautiful by the minute.

Life never seems to be simple, it keeps getting busier and a little more complicated as the days pass, but more than anything we are so very grateful to be living it together.  Ash is home with us and she's happy and we couldn't ask for much more than that.  With Blake and I traveling 4 out of 7 days a week it may be a few days between posts toward the latter part of the weeks.  Just easier to leave the computer at home and concentrate on spending time with him while I can.   Hope your all well and enjoying some time with your kiddos now that school is out.  Thanks so much for loving our sweet Ashley and for continuing on with us.  Talk to you soon.  Trish