Quick post .... Marathon pictures ....

for the benefit of my East Coast in-laws.We are having a great visit with Lisa and Michelle,Marks sister and her daughter.We headed to Pepperdine to pop in on Taylor.It is insanely hot here.Like 100 degrees.Malibu seemed to be a good choice as it is usually a bit cooler there ... but no such luck.And with no air conditioning in the dorms,8 people,including her roommate, it was kind scary hot.We visited for a bit.Went to the campus bookstore and purchased some seriously over priced text books for her and then said our goodbyes.Taylor is loving college already.Embracing NSO,new student orientation week and participating in tons of activities.Taylor may be the baby of the older set and young for her grade but she really is pretty self sufficient and independent,contrary to what her sisters might think and possibly chime in.She is going to do great there and will certainly grow and thrive and blossom all the more in the upcoming 4 years.We came home, had a delicious dinner courtesy of Lisa and Michelle and finished the night off with a night swim and multiple rounds of various card games.Sans me.I don't do cards.Sorry Barbara Ann,my lovely mother-in-law!The night ended with an interesting first for us Californian's.Tim-Tams.Australian chocolate cookies that Lisa and Michelle taught us a nifty trick with, by taking bite's out of opposite corners of the cookie,using it like a straw and sucking up a bit of hot coffee where immediately the chocolate melts into a mouthful of rich chocolate.Sounds a bit strange.Looks,from the pictures,really strange but boy, for a chocolate lover like me ... delicious.Tomorrow Mark and Lisa,the boys and Michelle are heading down to San Diego.A whirlwind, turn around,one day trip to see Caitlin,Danny and Charlotte.Zoey and I are hanging back.Too crazy of a day for the little love.I will hate missing getting my grubby grandmother hands on Charlie though.She is smiling now and so darn cute ... Caitlin sent me a video of her smiling up a storm and her whole little body gets into the smile.You know how babies do that?Like they are smiling so big and so hard they are just going to burst ... that is how she smiles.So that is the quick update.More tomorrow after the San Diego run.Speaking of run ... I'm still indecisive but thank each and everyone of you for your loving words of concern.I am tossing around a few ideas and by weeks end will hopefully have solidified my plans.I have a few more test results coming in also so that will play a role in the decision as well.More to follow later this week on that.

* some picture rundowns:Jess and Matt trying the very yummy Tim-Tams with coffee .. looks weird but I highly recommend it.Then:We have Matt our resident EMT/paramedic,practicing his fine blood pressure techniques.Next:The view and Joe:Poor poor Taylor needs only go to numerous spots on campus and THIS is what she see's everyday.Things are tough all over,aren't they?Last:Taylor hanging with her little love in her dorm room.The rest of the pictures ....fairly self explanatory.

To the Max ....

Each evening this week, as I sit and read through the postings of all my friends,leave my comments,say my prayers for them,I go to post here and I go blank.Totally and absolutely blank.Not that there aren't things to blog about but rather blank because there is SO much to blog about.My mode of operation in my old age, when I am over whelmed,is to shut it down.Now I don't mean actually shut down my body because that is entirely impossible for me.I do not stop.Ever.And that's not exactly a good thing.As I wrote to a blogworld friend this evening,my type A personality doesn't allow me to really wind down or give into naps or resting or sometimes stopping to even eat.My saturated mind is much the same except for the fact that I have been blessed by the ability,no matter how entrenched in stress that I am, that my mind can and does turn off and I sleep like a rock.That blows my mind as I have a serious issue with anxiety and catastrophosizing things when things in life are at an all time emotional high.By shutting down I mean that I put things off for a bit,push it away, hoping it will go away or just placing in order those things that have to get done, with those things that can wait.Not all bad when it comes to finding methods of dealing with things actually.But a complete 180 to how I have normally cycled through life.So,because there is so much going on,physically and emotionally here,I have put off writing.Tonight is going to be fairly unorganized and random and pretty much all over the place.I'll start with me,which is not normally where I start and who knows,I might just get going and end there for the night as well.The stress of the last 9 months on my body has just been kicked up a notch.You see I have this pesky little heart thing.Revatively benign in most situations except for the fact that I have been having them while running.A trip to my favorite resident cardiologist,followed by a 24 hour holter monitor and a few EKG's revealed a bit more.A have something called a moderate QT wave.Now in the past,due to low potassium, I had Long QT syndrome.Which thankfully,with some supplements brought that back to a semi normal range.Because,in plan and simple terms.Long QT can be deadly.Now because I take a diuretic,for my Meniere's, which depletes potassium,I stand the chance of getting into some serious trouble.If I ate right and drank properly and wasn't in the state of mind I find myself in as of late,that,coupled with the Marathon,wouldn't be a big deal.But his concern is this:I push myself, due to the aforementioned type A personality,train like crazy for the marathon,take care of all that I have to take care of,and forget to take care of me.That combination could have huge consequences.Doctors recommendation,no marathon.My decision,I don't know.I truly do not know.All I know is that I do believe I am on the brink of being completely maxed out.As for the rest,the week shake down looked much like this:Jessica finished her CNA course and is looking for a job and making a decision on where to apply to nursing school.UCLA has a new masters program that is looking appealing to her and she is going to check deeper into that.Matt has is EMT certificate and his special ambulance driving license and has started some of his fire classes.Caitlin and Danny are doing fabulous.In the grove of parenthood and balancing school and a job,beautifully.We only wish they were closer in distance to us.Taylor is settled into Pepperdine and has a wonderful roommate.Her original roommate decided not to come about two weeks ago and as this world goes,the most amazing thing happened.A very sweet mom from the Dallas area happened upon my blog a while back.She has a 13 year old named Grace that happens to have Down syndrome.She is in fact a twin.After following us and praying for us she realized we both had girls going to Pepperdine.Both had already committed to other roommates but the strange turn of events found Taylor and Mackenzie now roommates!They are perfect together.Right down to both suffering from frequent debilitating migraines.They get each other and Kelly,Mackenzie's mom,feels such peace knowing we are here and that Taylor is there to watch over and understand what Mack is going through.A true blessing.The boys started school.None too happy.Wanted to hold on to summer a bit longer.As did I.They seem to be doing alright and I haven't heard from Joe's teacher so that alone is positive.And Zoey,she is Zoey.Her frustration at not being able to convey her needs and wants is picking up as is her frustration in not being able to get down and just go when we are out.She wants to be let down and it just can't happen out in the world.Can you see it?Zoey,rolling along the side walk.We just have to find a way to get her participating in her world.The week had tons more in it,culminating in Marks sister Lisa and her beautiful daughter Michelle coming for a visit today.We will try and pack in some fun stuff,which just might mean a trip south to visit the darling little Charlie.That's all I've got for tonight.If your still with me,thanks for hanging and thanks as always for your continued love,support and prayers.

*Miss Zoey getting to know and loving on her,never have met,lovely Aunt Lisa and the very sweet cousin Michelle.

All is Well ...

Miss Zoey checked out fine.A few areas are still lagging in the labs.White count:2.99,normal is between 4.5-11.hemoglobin:She is rocking in that department,normal is 9.5-15.5 and she is 15.3.Red: She is 5.06,normal is 4.0-5.5 and finally,those pesky platelets are 111,000,still below the norm of 140,00-450,00.Her ANC is lower then we would like as we head into what is going to be a doozy of a flu season,especially the swine.My pediatrician warned me of it and our oncologist confirmed it.Our oncologist told Mark and I that two little loves,both with Down syndrome,undergoing treatment for AML,passed away on the 4th floor.I had heard rumor of this a few weeks ago from another parent.Saddened beyond belief,especially because we knew one of them.A sweet guy,3 years old and in his last round.Unfair and in my opinion,preventable but I won't go off on that right now.As for Zoey,she has only a 740 ANC.Which means,yes she has the ability to fight off some of the crap out there BUT she is borderline immunosuppressed or neutropenic.Anything 500 or below significantly increases your chance of infection.A normal,healthy ability to adequately fight off infection would be 1,500.Bummed about this for sure.The theory her oncologists is riding with at the moment is that her Bactrim is interfering with her counts.Bactrim is a prophylactic antibiotic,given during and for 6 months following chemotherapy, that is proven to be 100% effective in preventing a specific type of deadly pneumonia.So for now the benefit out weighs the risk.We will check her counts in one month.Leave her port in for another month and then decide which direction we go.It does occasionally happen that children undergoing chemotherapy and the months following,while on Bactrim, to be delayed in count recovery.The reason is that the components that make up the Bactrim and its effectiveness are actually similar to that of methotreaxate,a chemotherapy drug,which can reduce counts.Strange,but true.It makes sense to me that Zoey falls in this small category.One, because she is Zoey and that's the way she does things and two,during all her rounds,her ANC took FOREVER to come up to start the next.So,I'm at peace with things.As peaceful as I can be having a child cut loose from chemo just a short time ago.But peace,nonetheless.I want to leave you with a a story.Something that happened today while at the hospital.It was a reminder once again of how fortunate my family is and how blessed we are to be where we are and have Zoey, and the rest of us for that matter,doing more then alright.Today, while I sat in the lobby waiting on Zoey's labs to come back,I notice a gentleman that I recognized from the 4th floor.I had never actually met him before but you remember faces when you spend day after day,wandering the halls.I sat next to him and we struck up a conversation.His English was broken but no matter,we really spoke the same one,the deep abiding love of our children.His 8 year old son Steven, has ALL.He relapsed in February of this year.He will be going into the bone marrow transplant unit in a week or so and his 10 year old sister is his match.As we sat talking about our children,I asked how everyone was coping emotionally.He said his son was the rock.The positive one.The one who gave strength to those around him.I asked about his wife and he said she had passed away 4 years ago from an infection that went to her heart.My very own heart broke at that moment.I continued to listen as he told me he also had lost 2 brothers to cancer,one to leukemia and that his mother passed away from a brain tumor.My heart continued to break.He said he had remarried and had an infant son,4 months old .... who has Cystic Fibrosis ... what does ones heart do at that point?What does one say to a man,a young man,who had endured unspeakable sadness and STILL has hope and faith and belief that life is still inherently good?We stood,said goodbye,exchanged promises to pray for each others child and we parted.But I will never forget that man.Or his son.Or his family.Or what I am meant to remember forever and that is this:"Strange is our situation here upon earth. Each of us comes for a short visit, not knowing why, yet sometimes seeming to a divine purpose. From the standpoint of daily life, however, there is one thing we know: That we are here for the sake of others ... for the countless unknown souls with whose fate we are connected by a bond of sympathy. Many times a day, I realize how much my outer and inner life is built upon the labors of people, both living and dead, and how earnestly I must exert myself in order to give in return as much as I have received." ~Albert Einstein

That's all I've got for now.It's off to do last minute things for the first day of school for the boys and making sure Taylor is all situated to head to college ... tomorrow.I have deja vu,as I did the exact thing when Jess went to college.Jake was going to kindergarten and this year it's Joe going.And when Caitlin went,Zoey was being discharged from the hospital following her heart surgery.I literally moved Caitlin in and headed to the hospital to pick up Mark and Zoey.How's that for crazy.And the craziness hasn't stopped since!!!

And Monday Comes ....

Tomorrow Zoey,Mark and I will head out at 6:45 am for clinic and another blood draw.I hate going there.I hate putting her through having her port accessed.I am certain though,that she hates it more.I hate the agonizing wait for labs.I absolutely hate every,single, solitary thing about this disease.Everything.I have no idea what to expect tomorrow.Better to not speculate.Speculation will only yield more worry about something I have not one bit of control over.So tomorrow I will do what I do best.I will gather Zoey up in my arms.I will travel the 40 plus miles with her.Sing and talk to her along the way.I will carry her through those all too familiar double doors.Distract her the best I can, when actually she knows all too well what is to come.I will comfort her and soothe her and wipe her tears.I will whisper in her tiny precious ears,how much I lover her.And I will pray.I will pray us both through the morning.

Mark headed to a Dodger vs Cubs game today with the boys and Taylor.Much to our resident Cub lover and Chicago hailing,Matt,Cubs won.I must also add however,much to afore mentioned Cub lovers dismay,Cubs did lose the other 3 games of the series.Sorry Matthew.Fun was had by all.As well as a bunch of junk.Much to this mother's dismay.Mark felt he'd appease me and tell be the boys had pizza.Bold face lie ...more like a Dodger dog.Don't get me started on me and hot dogs.They had a wonderful time and it was a perfect outing before Taylor heads to Pepperdine on Tuesday.Taylor LOVES her Dodgers,that's for sure.

Miss Zoey is doing great,really great,despite the latest.She looks good and is darling as ever.Charming and engaging.Happy as can be.Growing physically and cognitively.Stubborn as all get up.This girl knows so much but she hides it,if that makes any sense.Sometimes we question,does she or doesn't she on some issue and then in one quick moment,we'll all say,"Oh she SO knows what she's doing.One of her greatest strengths is her anticipation.When reading books she'll know which page is coming next and what will happen.For instance,in "My Friend Isabelle"(which I highly recommend on your children's bookshelves),there is a part where Isabelle and Charlie fight over toys and cry.The moment I turn that page she looks at me and makes a sad face before I say word one.That is just one,of many examples.She has also decided to fight a bit over naps and bedtime.So when reading her bedtime books,Like "Time For Bed",she'll contently read until we reach the last two pages,say where the little girl is going to sleep and then she begins kicking the the book furiously and begins wiggling like crazy to get off your lap and tries to make a quick rolling get away.Like she's saying,oh no you don't,your not lying me down.She is feisty and strong willed and attitude filled and I love each and every bit of it.I often have to turn away to keep her from seeing me cracking up when really I should not be laughing at all.But how can I not.This is what we have waited for.Spunk and attitude.I say bring it on little girl.Every ounce of it.Prayers for the spunky one tomorrow would you,please?

Whole lotta stuff going on ....

Another weekend has snuck up on me.I swear life seems to be going by faster and faster,the older and older I get.I seem to always say that there is never enough time and then I am reminded of this quote:“Don't say you don't have enough time. You have exactly the same number of hours per day that were given to Helen Keller, Pasteur, Michaelangelo, Mother Teresa, Leonardo da Vinci, Thomas Jefferson, and Albert Einstein.” ... alrighty then,no more excuses for me! The weekend is packed but what else is new.First and foremost, making sure Taylor has the last minute things she needs before she heads off to college on Tuesday.Yes,my "baby of the first set" is college bound.Hard to believe and I'll stop there cuz I might just start crying.Tuesday is also the boys first day of school.Third grade for Jake and kindergarten for Joe.People ask me if Joe is ready for kindergarten.My answer is always the same "Is kindergarten ready for Joe?Enough said.Next week starts with labs for Miss Zoey first thing Monday morning.Not looking forward to that in the least,given the fiasco and near mental breakdown( me!) of 2 weeks ago.But what am I to do?Got to do what we got to do.Zoey also has evaluations at CCS.CCS is a state program with services geared especially towards children like Zoey to help them find their way.We are so fortunate to have qualified for services, as it is normally based on income but in Zoey's case her status on the medical waiver and diagnosis of hemiplegia gets her in.I am most exited to get input and guidance in their medical equipment department.We are really seeing a need for a chair/adaptive stroller and seating for Zoey.We need to get her up and participating more in the world around her.She wants so badly to be down but her only mode of transportation is rolling and using her little legs against walls and objects to pivot and maneuver from one place to another.Ask Lacey and Ray ... they have seen her in action.Quite remarkable how she has compensated for her deficits.Hopefully we will have that equipment before years end.I think it will make a difference in Zoey's frustration in not being up and in the action.We also pick up her Sure Steps next week.Throw in five days of therapy and that is one full week.And that's just Zoeys deal ... I haven't even hit the tip of the iceberg for the rest of them!Oh,it just dawned on me ... AND My sister in-law and niece come on Thursday ... almost forgot about that.No offense Lisa and Michelle,just lost you a bit in the craziness.Let's see, have I forgotten anything?I am certain I did.I'll report on the rest another day.Just putting that in writing has exhausted me.Have a beautiful weekend everyone.Enjoy each other and throw in a prayer or two for Zoey if you would.I am not sure my heart can take a repeat performance.In fact,I know it can't.

*I cleaned the alcove in our closet and made Zoey a little space.She's not sure what to make of it.I am going to hang a sign that we had from her first birthday party which said:"Princess Parking All others will be TOAD".Zoey is not at a stage where she is able to play independently by any means but one day I have a dream that she'll spy her little space,light up,climb in her chair all by herself and play away.It is so hard keeping her occupied because Zoey is so not a toy person.Not at all.She likes people,their faces,their voices,the boys chaotic play,being held by them.Only people.That's her thing.Take for instance the picture of her and the nifty toy I saw on a darling girls blog.I ran out,bought that sucker and well,the novelty has worn off already.She just shows absolutely no interest in toys.Throws them most of the time and smiles while doing it.Books she likes.Music she likes.Toys she doesn't.Oh well ... the social butterfly in her makes up for it and keeps her content.If Zoey has a room full of people to play with and put on a show on for,she is all good!

*Bracelets ... didn't go out.sorry:(!Tomorrow ... for sure.

"Friends are relatives you make for yourself." ~Eustache Deschamps

Look who came to play!!It's Mr.Jax and his amazing family.That's right,the lovely Rugg family came Monday and hung out with our crazy crew.We swam and ate and chatted it up till way past the kids bedtimes.Even Miss Zoey's.It was almost 10:30 when the meltdowns began and we were forced to call it a night.But let me tell you,we had an incredible time.As if we have been life long friends.Well,we certainly will be now,I know that for certain.Zoey was smitten with everyone.With an extra something,something for Ray and little Carter.And then there's Jax.I absolutely fell in love.In between two of Zoey's chemo rounds, a bit back,we did get together briefly when they were in town but this was different.More time and no rush and and as Lacey put it,she was much less nervous to hold Zoey because last time she was so scared of passing germs along to Zoey during treatment.We really had an opportunity to sit and visit and hold each others precious little loves.Jax has been hit so hard.So many obstacles to overcome and he just keeps pushing forward and fighting through it all.I sat with him and wished I could make everything better but my magic wand doesn't seem to work as it use to.The Rugg's hopefully will be making a move in our direction before too long.Tons of things to put into place before hand though.One of the biggest is heading to Boston for Jax's heart repair.I am also hoping they can find their way to Dr.Shields at UCLA.Jax is in an almost constant state of seizing due to a hypoxic brain injury he suffered in June 2006.Dr.Shields is one of the premier doctors in the country for treating IS,it's accompanying hypsarrthymia,which,in a nut shell is chaotic and catastrophic brain patterning, as well as an all around guru in the world of pediatric epilepsy.We adore him and trust him implicitly.I truly think Dr.Shield's would be an invaluable source of insight and knowledge when it comes to trying to bring Jax's seizures under control.I'm kind of obsessing on this aspect of the amazing little Jax.I think it is because I see it in his eyes,that half smile and look about him that tells me that if someone could get the upper hand on the seizures,Jax would break on through ... feel free to tell me to shut up anytime now Lacey! So yeah,there you have it ... we love all the Rugg's.We feel blessed that they could squeeze us into their hectic vacation schedule and we are praying that all their dreams of a move and career change will happen sooner rather then later.Most of all we pray for the very sweet Jax, that he will get to Boston soon,fly through his repair and begin progressing forward like he so very much deserves.Thank you Rugg family for spending time with us but most of all thank you for your unconditional friendship.Your family represents the beauty found in this crazy world of blogging and for that we feel blessed beyond measure.

*Zoey LOVED Ray's Dodger hat and it's a good thing Ray loves Zoey because she is about the only one who could get away with tossing his beloved Dodger hat to the floor repeatedly ... it was so cute!

My Beautiful Chaos ...

The house was absolutely bursting with life this weekend.Just what I needed,coming off the past week.We had ALL the kids home together at one point or another.Of course the "boys",Matt,Danny and Brandon, were here as well.Brandon actually heads to college in Arizona on Tuesday.He's off to play football at the University of Arizona.We will sure miss him around here.I think Miss Zoey most especially.He is an outstanding young man.One we have been so proud to having hanging around here for the better part of almost two years.He is going to do great.We know that.It's just Taylor's fragile heart we're most worried about.As for the rest of the crew,Jess did head up to San Francisco for a friends wedding but by Sunday evening we were all under one roof.Of course the day had to come to a close at one point or another.Danny,Caitlin and Charlie had to get back to their own life in San Diego but that is just how it goes.I'll take what time I can have with them and know how lucky I am that they even want to venture our way.Speaking of Charlie ... she is just perfect.Delicate and oh my,is that little peanut strong.Charlotte just turned 5 weeks old and if you can believe it,I do have multiple pieces of video evidence if need be but Charlotte rolls.Yes,rolls.Put her on her tummy and she rolls to her back.Never have seen anything like it in my life.Zoey was so great with her.Danny and Caitlin also brought her a darling baby doll to love on as practice too.For the most part,Zoey was so very gentle,with the occasional ever so quick "extra pat" but other then that she really just wanted to be close to her.When Charlie was crying,Zoey would make a sad face and was very concerned and had to be brought closer to check it out for herself.You can see her doing it in a few of the pictures.The boys played the very proud uncle roles and the rest of us certainly soaked up our time with her too.I always dreamed of having a large family.I never believed it would actually come to fruition,so when we are all together,I gaze around and am filled with such gratitude for these lives I have been blessed and entrusted with.Everything always somehow circles back to Zoey and her life and the gifts with which it brought.I think, or rather I know, we stop and cherish the days like the last few we have had, just a bit more fully.After the journey of the last 9 months,how could we not.After the scare of the past week, we are called to all the more.

*The past week has left me a bit behind on getting bracelets out so if you have placed and order,please know they will go out tomorrow.Thank you for your patience and understanding.

"One can see clearly only with the heart. Anything essential is invisible to the eyes." -Antoine de Saint-Exupery."The Little Prince"

My pregnancy with Zoey was strange from the get go.The obvious being my "advance maternal age".Well,that wasn't exactly strange, just not the norm amongst my peer group.The beginning days were filled with uncertainty.Viability and the such.It seemed to take forever to see her little heart beat.Forever,in that according to my very high HCG levels there should have been a flickering of something and speculation based on the high numbers, of maybe a few flickers.Instead nothing.We prepared for a miscarriage and then viola,one more ultrasound and we had one beautiful and strong heartbeat.Things settle in.I settled in with the idea that I was going to look more like this child's grandmother then anything else come high school graduation but what the heck.My baby was healthy and that was all that mattered.Or so I thought.Week 19 in my pregnancy yielded my level 2 ultrasound.Everything looked great.We had "chatty Cathy" as a tech who became mysteriously and eerily quiet once she started scanning the heart.Mark of course thought I was over analyzing things as usual, where I knew in my very own heart of hearts, something was not right.Said technician left the room with some lame excuse and soon returned with the doctor.Here we go.I just knew I was right.I hate when that happens especially when bad news follows.I just knew it and wished that I didn't.They said they saw a tiny hole.Minor defect but wanted me back in two weeks to meet with the specialist who would be coming in.Two weeks went by.Not much worry.Lots of babies are born with minor heart defects.Many of which close without surgery.Still,all was good because my baby was healthy.Or so I thought.Two weeks again passed quickly and by the time I found myself lying on the exam table,that "tiny hole" was a whole different story.This hole had a name and it was Atrioventricular Canal Defect Complete and it was anything BUT tiny.I was told at that time I only had a few weeks to "decide "what I wanted to do ,which left me bewildered for only a moment until I realized they were asking if we were going to continue the pregnancy.I was shocked and sickened by the thought that I or anyone for that matter, had the option of choosing to end a pregnancy of a life already,in my opinion,living,at this stage of the game.Instead that direction of the conversation was quickly halted.The doctor went on to tell me that although my baby,a girl,had no other markers,this type of defect was primarily found in children born with Down syndrome.Okay.Fine.No big deal.I seriously asked very few question in regard to that and went on to what I felt was still the number one concern:What about the heart?Did I want an amnio?No I adamantly replied and said yet again ... what about the heart?After briefing me on the basics,I was sent packing.We snapped out of our fog fairly quickly and started doing research as to who and where was the very best place to gather info and begin addressing this now major heart defect.We were determined to do anything and everything to ensure our baby had the best chance at life.Thus our odyssey with Children's Hospital of Los Angeles began.We could have never known on that October day how life altering that in-utero diagnosis would be and how,almost three years later, it almost feels as if it was the very least of Zoey's medical issues.The road to surgery was long and arduous.Her very balanced,very treatable,very fixable heart defect quickly took a turn for the worse the very moment she was born.Her multitude of complications had her born into a status of heart failure and we would spend the next 5 1/2 months keeping her stable and growing to reach surgery day.It is not until we look back at her pictures prior to surgery,that we see so clearly how very,very sick she was.Today marks the 2 year anniversary of Zoey's heart repair.A day that found Mark and I not filled with one ounce of trepidation,rather immense relief that Zoey had made it to this day.We left the rest to God.Our roller coaster NICU days more then prepared us for the machines and the tempo of the cardiac unit and the resiliency and fight in our tiny baby took care of the rest.Yes,there were a few hairy moments during our stay but after a mere 8 days we left the hospital with a "new" baby.Zoey was pink ... not gray.Zoey nursed(She first BEGAN to nurse at 5 1/2 months!) and tolerated feeds .. no gagging or retching.Zoey smiled ... something we had never,ever seen.Our days since August the 13th 2007 have taken us on detours we could have never imagined.Not all good but most truly magical.Zoey was blessed with an absolute perfect heart repair,something they questioned as Zoey began to grow because as is true with Zoey and Zoey's way of doing things,her defect was larger then most.Of course it was ...isn't that the way Zoey has always done things?Uniquely Zoey.We have been saddened over the last 2 years as that perfect fix and it's integrity has been compromised,mainly by the nasty effects of ACTH and now chemo.But least we get discouraged, we have only to look at this remarkable little girl and her indestructible heart and her impenetrable spirit as she continues to pave the way for all of us as we journey forward together.

*These were two of Zoey's first ever,in her entire little life,ever smiles!They were before being released from the hospital and Mark was the very perfect,very proudvery teary eyed,recipient of them!Daddy's girl all along.

As I finished writing this and reflected back on the past few days,I am struck by the pace of our lives and how quickly and unexpectedly we must constantly and continually be changing gears.Our emotions can be all over the place on any given day and sometimes any given moment.... and that is just when we are talking about Zoey!Throw in 5 others and a marriage,forget about your individuality .... and oh,my,gosh ... we SO,SO,SO need a vacation!!My dream is a big old decked out motor home though ... now that would be nice for getaways ... a girl can dream,can't she?

Now THIS was the news we were hoping for ....

No leukemia.As simple as that and as complicated as that.Nothing about cancer is simple actually.Diagnosis,treatment and life after.That is if you are so lucky to be on the other side of treatment.And mark my words,we know how very lucky we are to be on this side.Reminder came this morning as my very dear friend,against my instructions,showed up at Children's to lend her support.My friend Laura is mommy to Angel Luke.Laura and John know all too well the roller coaster ride of pediatric cancer.Their little guy battled so courageously for almost 6 months.Their other side of treatment is far different then ours and as long as I can carry on with gratitude for where Zoey is right now,in this moment, then I will have learned as I should have, from the gift of Luke's and others like him and their journey.My friend Michelle,who has been my rock since day one of Zoey's birth, also insisted on coming along and the company of the two of them made all the difference in my mindset and ability to focus on the task at hand.I love them both for getting up at ungodly hours to be there beside both Mark and I.The ultimate in selflessness.Up at 4am.Out the door at 5am.Check in 6am and procedure at 7:30am.It was one of our most easy flowing admissions to date.No fuss.No hold up.Just bing,bang,boom and before I knew it I was being ushered back into recovery to be with Zoey.I found her as I had left her.Smiley,waving and in great spirits.Then the wait began.Dr.Gaynon said results would be back soon after she was out of recovery and true to his word,they were.No leukemia.Wow.We were speechless and elated and so very grateful.Now the question remains,"What is causing her platelets to either not produce properly or what is causing those platelets to be consumed?"He suspects some organ damage due to the chemo.Specifically her liver and spleen.He was also slightly concerned Monday as her hemoglobin was 15.2.That is high and can be indicative of heart disease.So it looks like we will be checking out the little loves organs over the next few weeks or so.But the huge news of the day is Zoey remains,in this amazing moment,leukemia free.Can you hear me taking a deep cleansing breath all the way over here?These were a tough couple of days.Our minds went to all different kinds of places but we stuck together as a family.Remained strong and positive and prayed like crazy.And then there were all of you.Again a tremendous outpouring of love and support through comments and phone call and emails.Once again sustaining us and humbling us as we continue to journey forward with Miss Zoey.This child of ours keeps us on our toes.A sentiment reiterated by her oncologist today.I wish I thought that this would be the last number scare that we would be facing.I know in fact it will probably not be.The question remains:How will we deal with the curve balls that are sure to come with this territory?Gracefully and with dignity like Zoey I would hope but when I am in the the thick of the uncertainty that ability becomes far too difficult to wade through.Recently I followed a comment to this darling little guy.His mom had this quote at the top ... I just loved it.

"LIFE IS NOT ABOUT WAITING FOR THE STORM TO PASS.. IT'S ABOUT LEARNING HOW TO DANCE IN THE RAIN."

It seems as though we have all passed through many storms over the last 2 1/2 years.Sometimes I have danced and other times I have barely kept my head above the raging waters. But all the while our guide through those storms has always remained constant and consistent.That guide has been a tiny child who's indomitable will to survive whispers and often shouts, DO NOT GIVE UP.The other beacon that has shone brightly has been or faith.Yes,there have been moments of doubt and brokenness but that faith is and continues to be the core of our existence.For each of these moments that we face, we pass through the human emotions of fear and anger and always circle back to the undeniable belief that the storm will pass.Maybe not always in the way we would want it to but it will pass and we will find our way to another day.My inadequate words of thanks comes to all of you.As I said in an email last night to a long time reader,I so wish Zoey could wrap her little arms around you all and give you one of her patent hugs.I thank you all for her and on behalf of our entire family.Our hearts overflow with humility and gratitude.I leave you with the picture of the little warrior,all tuckered out from her very long day.More tomorrow:Tomorrow just happens to be an anniversary of another incredible milestone of Miss Zoey Grace.