Tuesday, June 21, 2011

I Know! I Know!

I can hear the chatter now about how long it's been since I have posted.  I like to think ya'll missed me enough ;)   I have been away from the computer for so long because I have been knee freaking deep in getting my sh*@t back together after two years of total complete chaos.  I am insanely type A when it comes to organizing and being on time and having it together only its kinda hard to have it all together when you have a special needs baby.  Lord have mercy just when you get it together you wind back up where you started, as in the hospital. Oh yes, we are camped out in room 561 here at All Children's Hospital once again. Only after being transported via ambulance of course because when Pax does it, he does it right!




So here's the sitch.... Pax has not been eating. Eating is essential for him to maintain his weight while his heart works so hard. He is also a baller walker now and runs after his brothers stealing whatever it is they might have in their hands, which leads to piercing screams round the clock.  So between not eating and walking Pax is looking a little...shall we say... biggest loserish.  Not bad, in fact for an HLHS baby he is actually rockstarish.  The main concern is losing instead of maintaining/ gaining and 4 bites of cottage cheese for breakfast and 1 1/2 chicken nuggets for lunch just will not suffice.  Although I can't say I would mind looking into his diet plan. I kid people, I kid!  : )
SO we load up to come get checked out for a typical appointment yesterday and Pax decides when I am just 15 miles from home to start projectile vomiting all over himself and the car.  I have nothing and I mean nothing to deal with that kind of mess (i.e. note to self, put emergency beach towels in car for times like that)  My "emergency tupperware box" in the trunk contained diapers, wipes, paci's, nuts, fruit snacks, crackers and the like, but no towels. Clearly food is always a priority in our house.
So I pulled over, stripped him, used blanks to clean up what I could, called Cardiology, tried to get my and hands to stop shaking.  There came the adrenaline folks. I knew what was coming.  Off to the ER we went.  By 6:30 pm last night we were admitted in St. Pete.  Baby "McDreamy" couldn't so much as be phased by all the chaos, he was just tickled peachy at all the ladies gathering round to ooh and ahh at him and let me tell you, boyfriend milked. it. up.


In a nutshell, they think he has gastritis from being on Asprin for such a long period of time, as in his whole life actually, so we are going to start him on trial Zantac and see if that helps get him to eat. If it does then we found the answer, if not we keep trial and erroring. I am hoping she figured it out though. Cardiac wise he looks to be right where he should be.  Praise God!
He even got to get out of bed for 20 minutes today and take a gander at the outside world.  And I got to get my exercise once he got tired taking his wagon for laps around the unit. Yay for me! Pretty sure I have gained a good 10 sneaking bites of Paxtons mac n' cheese that he won't eat.




Prior to our big adventure yesterday we have been one busy family going boating, to graduation/birthday parties and loving the time at home with no school or schedule to worry about. We wake up and end up where we end up.  Last week we wound up at the Petstore and came home with two fish one named "Austin" and the other named "Mason"  appropriate I suppose ; )








(we're not the wild wild wests for nothing)

So we relish the little things. We relish where we have been and how far we have come in two years.  We relish that our single ventricle boy is walking and talking like it's his job.  We relish the hard and the ugly for they have made this side of it awesome and beautiful.  You can jump on board and go where this life is going to take you or jump ship and never find the glory in saying you've made it through the single, hardest time in your life.  While this journey is far from over, we have decided to stay on board and fight through the good and the bad.  For this....





And for this....


Eat it up friends!  As I was wagon walking this afternoon I saw a 14 year old boy fighting for his life just down the hall.  Daddy was bedside patting his hand as alarms sounded and doctors surrounded his bed. This morning as I went downstairs to find some sort of caffeine, I once again looked around at all the exhausted, worn down people trudging in the same direction as I.  They were clearly here all night not sleeping just as Pax and I had not.  They each had their own story, that I will never know, but I know the look, that exhausted walk and I know that we all fight our own fights, but here in this hospital I am constantly reminded to find my blessings and eat them up.  Every. single. day!  For we never know just how long we will have.  It's a sad lesson, but a good one just the same because we parents of sick children never take for granted the time we do have.  Seeing that 14 year old boy fighting for his life made me wonder if that would be me one day with Pax.  Truth is, its very, very possible.  Makes me sick to my stomach, but reminds me to hug a little tighter and laugh a little longer.  I hope you all will follow my lead.



****************

~J


ps~thank you morgie porgie puddin pie for stepping in and taking over for however long we are gone. you know i would be a complete wreck if i didn't know you were there to completely entertain, teach and spoil the boys. love you.

Thursday, June 2, 2011

Technical Difficulties

As evidenced by first glance at the blog when uploaded we are having a few technical difficulties at the moment.  My girl Jennisa will be on it in no time, she rocks blogs.

In the interim I apologize to all of my peeps that I have not gotten back to.  Two of three of the boys have ear infections and I am sick as well.  Luckily, Pax, thus far, is the least sick of us all.  Needless to say there is a lot of kleenex, antibiotics and lysol flying around here.   It's funny how I wake up feeling like some kind of crap, wondering how I will make it through the day, then I get this mad, crazy second wind where I run around accomplishing as much as I can knowing that the crash and burn is just around the corner.  Anyway, back on point, I apologize if I have not gotten back to anyone. My phone is near, but not a priority when I have two sick kids and one who is spoiled rotten (i.e. Pax) Yah boyfriend thinks the world revolves around him and it kinda does.  His way of letting me know what he wants next is to screech at the top of his lungs whilst pointing at whatever it is.  I can barely get my hair wrapped up before he's screeching at me for something. We are working on no with him, but god when that big bottom lip comes out I have a hell of a time not retracting.

Exhibit A:


Oh these boys rock my world. Whether it be Paxtons bottom lip or hugging my neck from behind while I am on the floor dressing his brother.  Maybe it's Mason asking me if I am his best friend to which I reply, "always baby".  Or Austin who screams to his brothers that I am "HIS Mommy!"   Three little boys who tear through this house like hell on wheels and yet I am so dang blessed to have each of them.


It's been a rough year. I have trudged waters I never imagined I would.  I still am.   I am not sure I could even put into words (and that's saying something for me) all that life has taught me this past year. There were days I wanted to give up, days I dropped to my knees begging, days I raised my arms in praise.  Days I felt joy I had never known and sorrow just the same. I have said hello and good bye.  I have begun and I have ended.  I have been whole and I have been broken.  I have laughed my belly laugh and sobbed sobs that were carnal.  I have felt more in a years time than I have ever felt in my entire life.  Most days I don't know what to make of it.  I question it, but in the end I trust in the journey. I trust in everything happens for a reason and nothing happens for nothing... So I continue on. Forge ahead. Do what I know to do and find joy in the most mundane places.  When they boys are riding  their "motorbikes" in the house (yes I let them, my walls are proof ; ) and they come at me full speed ahead and my jumping and squealing sends them into fits of laughter my heart swells and I feel it... that feeling we search our whole lives for.  True, raw love.  
I was reminded last week that it doesn't have to be huge to be awesome.  It can be simple blowing bubbles in the bath with the boys instead of Walt Disney or a 7-11 sandwich instead of a steak.  It is in the little things and the quiet moments that life lies.  We go to it when we need it and carry on from there.   
I had a wonderful weekend last weekend.  It was wild, crazy, soft and sweet all at the same time.  I will post pictures soon.  Tonight though, I am tired from being sick and caring for three amazing little boys in spite of that so I am going to go "night night".  I am going to crawl into bed, pull that pillow I love to cuddle into my body and head off to never never land.  I love it there. In my dreams....

Until next time. 

Goodnight moon,
J

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