Fallen off the wagon....again.

Yep, talking about me, but not talking about AA.  Talking about the weight loss battle I've been fighting, quite expensively I might add, for almost a year now.  I've fallen off the wagon, it's been an epic fail, and whatever new trendy terms you can coin to describe that I've managed to keep off the 20lbs I originally lost in the first 10 weeks of working out with James, but that's about it. 

So with the news of Ethan's upcoming surgery in 6-8 weeks, I got a wild hair up my ass and decided that would be the perfect goal to work towards.  Ya know, much like the Policeman's Ball, and my 40th Birthday were goal dates back in February and April.  Fruck-where did the time go?  It's freekin' July (well, almost. practically. might as well be dammit.)
Anyway-goal time, again.  30lbs in 30 days...yeah right says James, trainer extraordinaire.  But with that perfectly white smile and twinkle in his eye. But Nutri-System, Slim4Life, LA Weight Loss, Jenny Matthews and everyone else on the damn radio says it can be done...
Ok,  Let's be realistic-12lbs in 6 weeks is more likely. 
Ok, then I'm pushing for 15lbs-bring it on!!  

So starts my new regimen of running.

Yep, I wanna be a runner.  Why?  I love running clothes-not the men's shorty shorts we wore in 6th grade in 1983....the new cute women's stuff-oh and the shoes are pretty rockin' too.  Have I ever mentioned my love of shoes?  Quick Fact:  went on 5 day cruise in 2005 with Jody, sis, mom, step-mom and lots of other women.  Jody and I took about 30 pairs of shoes total between the two of us.  No lie.  My husband thought I was crazy.  Well, he still does, but that's a whole new blog post. 

Anywho....back to running.
Download the Couch to 5K on the new phone.
Load up the ipod shuffle with some new jams (love Niki Minaj's Super Bass-but most of her music is rated R -BTW)
laced up the running shoes.
reset my calorie counter watch to my new age of *egads* a 40 yr old Female, and reset my resting HR, weight, etc.
*FUNNY story about the calorie counter watch-was wearing it a few months ago and did my normal 500 calorie burn routine on the elliptical and when I was done looked at my watch counter and it said I just burned 2,687 calories!!!  Woo-freakin'-hoo!!  WTF am I doing this 5 days a week if I just burned that many calories in one hour???  I'm gonna be a size 2  by next week at this rate!!  Yeah, jackhole, watch counter soooo not right.  Reset and did same thing next day-487 calories burned-just like the damn elliptical said I did the day before. 

Sorry, keep getting off track.  Back to running:
Outside, decent morning weather, start with 5 minute brisk warm-up, then let the man's voice on my C25K tell me what to do next.  Before I know it, I'm like Forrest Gump, running round the neighborhood 60 seconds at a time.  And I'm loving it so much I decide to get crazy and run down the big hill on the busy street next to our 'hood.  Down the hill, awesome.  Up the hill, not so awesome, but I did it.  Crossing the street to get back to hood, and I'm right in the middle of a 60second run, so of course I can't stop to cross the street and step properly up the curb.  So I leap onto the curb with what I think is all the grace of a gazelle, and more like the lumbering elephant I am, I come crashing quite awkwardly on my right foot just right.  Well, really wrong, and my knee knows it.  Ouch, and many curse words follow.  And those of you who know me well, the F one is my favorite.
 
But I'm tough, and I wanna be a runner so bad. 
I keep going, thank heaven I was back to my 5 minute cool down walk. 

Home, ice, heat, ibuprofen and a little wine-I mean whining and it felt better. 

So, a few days later, and a couple more runs later-though with much less gazelle leaping, I finally get back to work out with James.  My right knee is killing me, it's on fire like a hot poker sticking through it. 
Again, I'm tough. I can do this.
He modifies one of the exercises I am doing so I can actually complete it, and I make through my hour of pure blissful torture.
After talking over my epic failure with James, he reassures me he is still willing to work with me, help me and set new goals (again) and help me get there. As always when I talk to him, I am motivated, and excited and feel like I can tackle the world. 

 once I get home I decide to run, again. 

And though it's not AA, I will admit this. 

My name is Kari.
and I'm NOT a runner.

But I'm back on the wagon.  And I'm losing that 12-15 lbs in the next 6 weeks.
Come hell or high water
and we've got lots of high water around here.

And ibuprofen, ice and heat packs...

Happy Father's Day- Top 10

Happy Father's day to all Dads everywhere.  Especially to my husband and 'baby daddy' Brian.  On  this day just for you, I figured I would swallow my pride and finally admit that you have been *gasp* right about some things which I just stubbornly have refused to admit, and we argue about on at least a weekly basis.
 However-this admission is happening today, and today only-as a matter of fact, within 10 seconds of reading this post it will disenegrate, blow up, disappear, and be lost forever (insert the "Mission Impossible" theme in the background here)  So, if you accept this mission-know it is one-time only, as once gone, I will never, ever admit to them again!

I borrowed this idea from a favorite blog I follow:  www.rantsfrommommyland.com
Kate and Lydia are absolutely hysterical for the self-proclaimed not perfect, but perfect for our family unit-Mommies.

I've actually made it into a Top 10 list -I have to admit it was hard to come up with 10 things, but I did it!

10.  Ok, the baby really DOES have too many clothes.  It's kind of an addiction of mine, but heck, since we can't really buy him toys, what does it hurt to have 42 summer outfits and 13 pairs of shoes??

9.   I am a 'distracted' driver.  I am not quite ready to admit what you say that I am a 'bad' driver-but I will say I tend to be distracted at times by my phone, the radio, screaming at children or trying to text while holding a large mug of beer while driving on the way to bunco....

8.  I have an addiction to Coke.  The red, shiny like a Christmas tree ornament, cold can of divine happiness.  I don't do drugs-can't I have this one vice???

7.  I do pout.  Occassionally.  Only if I really think it will work, or don't get my way.

6.  I will be late for my own funeral.  I just want you to know that I come by this trait of tardiness naturally.   I think there is a gene I should be tested for, I'm sure it's been passed down for generations in my family.

5.  I have enough scrapbooking supplies.  But, much like #8, this is a legal addiction.  But if I don't buy it while I see it, it could be gone.  That fabulous paper pack that will look so great with Hailey's high school graduation pictures on it.  Some day...in like 4 years when she actually graduates, even though I've only made it to her 2nd birthday pictures anyway.

4.  I sometimes purposely wait for you to get in bed and get comfortable before asking you to get me a glass of water, turn off the light, or whatever annoying thing I can think of to ask you to do just to see if you will  get out of bed and do it.  Yep, I admit it-I say that I don't do it on purpose-that it just happens that way, but secretly, I sometimes do it on purpose.

3.  I am a closet hoarder.  Have you met my father?  That's all I'm gonna say about this one-at least it's an admission.  Again-a gene, passed down for generations.  It is nearly physically impossible for me to throw something away that I may use or need someday which seems completely and utterly useless to you.

2.  I have too many hair products and yes, get angry enough when my hair doesn't do what I want it to that I throw cans of expensive hairspray at the wall and punch a hole in it.  Not sure I want to elaborate on this one, kinda makes me sound a little crazy, huh?  My cousin Anthony will understand this one though, right???

and for the final, #1 admission I will post for all the world to see-one time....

1.  I will admit that I appear to others much more put together than we both know I really am.  I'm just a hot mess most days running around like a chicken with my head cut off, juggling way too many responsibilites that I can't seem to let go. 
But then again, honey, that's why you married me-cause I'm all that, AND a bag of chips...(oh, and I do love cheesy cliches like that)


Happy, Happy Father's Day Honey.  Thanks for being my baby daddy!

Tragedy in the Midwest

This last week has brought a great tragedy by way of devastating tornadoes to the midwest.  So close to home, Jopin, MO was hit last Sunday, and the town of 50,000 has literally been obliterated.  The death toll was at 123 last count, and they are still doing search and *rescue*.  Schools, homes, businesses and the hospital have all but been wiped out.

 My heart was hurting and I was crying while on the elliptical the other night watching ads across the TV screen asking "Have you seen this person?" with  phone number and brief description of a family's loved one's last known place on Sunday-and whom they have yet to find.  A 16mo old child ripped from his Mother's arms,  a husband and his two children at the Home Depot, a high schooler playing basketball with a friend.  I cannot watch the television anymore. 

Then today, the sirens sounded at our house, funnel clouds spotted all over the KC metro area.  My kids spent an hour huddled under their art class tables, or in a hallway.  I, watching the TV and texting reports to my sister and her son stuck in a building at the zoo while on a field trip,  to my step-mom stuck in a stairwell at work, both listening to the sirens all around them, and not knowing what was going on.  After what had recently happened in Joplin, everyone was anxious and scared that we would be next.  Those of you who don't live where tornadoes occur, drills are done as early as pre-school age here, most all of us have homes with concrete basements and little tornado boxes packed and down there ready for us with water, tennis shoes, a flashlight and weather radio-of course ours has a TON more, but to each their own.   But being prepared, does not make it any less scary. 
Though today's storms not nearly as bad as what tore through Joplin on Sunday, a small town near us-Sedalia, MO, was hit by one-no loss of life-but again, loss to homes, businesses and schools. 

The response to Joplin by friends and family members to help has been amazing-my sister Kate, an EMT with KCFD loaded a bus Monday evening headed there to lend a hand-along with 5 additional ambulance crews and numerous engine companies.  One of KCPD's Tactical Teams and a Traffic Enforcement team have been there all week-the reports coming back from a friend, and a wife of one of the Traffic guys, is just gut-wrenching.  A dear friends husband is packed to leave with his Tactical Team tomorrow and is humbled at the thought of being sent to help these people and though is leaving his family-hopes to help provide some comfort to those in need-in his words, he "only wished he could have gone sooner".  Andrea is proud of you Troy-and I to be your friend!  An officer who works for Brian called us Sunday night, and was already headed down to lend a helping hand-something Todd is known for!  And I've only named a few of the people I know who are down there helping this town dig out and find family members and hopefully in all that ruble-maybe a miracle survivor. 

Please keep the town of Joplin, Missouri and it's residents, in your thoughts and prayers in the coming months as they try to come to terms with the tragedy Mother Nature bestowed upon them this sad day in May.  Please pray for their peace, and their survival will to rebuild and move forward.  Please keep those sent to help in your thoughts as they perform the daunting task of trying to find survivors, though know they will most likely be giving families the much needed closure of losing a loved one.  Please donate blood over the summer to help replenish the amount our local banks have sent down to Joplin. 

And most of all-tell those that you care for how much you love them, how much they mean to you, and how you would be lost without them. 

For we are never promised tomorrow.

We only have today.

Make it count.

Heart Walk 2011

Ethan 1 hour post-op open heart 6/2005

Ethan 6 days post-op open heart 6/2005

It's that time of year again, the AHA Heart Walk is right around the corner.  We will again be walking with CHD Families, in honor of all our kiddos affected by congenital heart defects. 

This year is different for us though, as Ethan has always been a 'heart kid' without the typical problems of a 'heart kid'.  The majority of his struggles in the past have been because of his Chromosomal anomaly 18q-.  Yes, he had open heart surgery at 15 months old, but came through with flying colors and was home 9 days post-op, meds for a few months, follow ups for life, but nothing like the struggles some of the kiddos I know have gone through. 

This year is different-Ethan is in heart failure and no one knows why.  His pulmonary valve is leaking greatly, causing the majority of the failure.  This valve was created 5 years ago during his open heart repair by opening his pulmonary arterty to allow for greater blood flow-due to the size and constriction it was causing, and a 'flap' was made to work like a valve.  We were assured it would continue to work for Ethan well into his late teens-he is almost 5 years out from that surgery and it is already failing. 

So why is this walk even more so important to us? Because all the funds raised through the CHD Families team members will stay right here in KC to help figure out why something like this happened to Ethan.  To hopefully help answer some of the questions all heart parents have-

why? 

how?

and can it be fixed?

Unfortunately for too many parents I know, those answers will come too late.  Too late to help their child.  But it's not too late to help so many others.  Please consider making a donation to help answer those questions, because though too late for some, it is only with those answers that we will someday be able to put an end to precious lives lost to congenital heart defects. 

No donation is too small-feel free to mail a check made out to the AHA to me-email me and I will send you our address karawley03@yahoo.com

or donate on our online page at:

http://heartwalk.kintera.org/kansascity/ethanrawley

Thanks to those who have already generously donated-Grandma Sharon and The Clapp Family-thank you so much for helping us reach our goal!!

I included some of my favorite pics of our boy below-all of these were taken by a dear friend Brandi Wisdom of BNW Photography-friend her on FB and see all her gorgeous work!  The very last picture was taken at our home-Ethan had been in the hospital and had just come home-she didn't want to mess up his routine, so she and her husband packed up the stuff they needed and headed to our house!  The middle pics were taken in the playground in front of Children's Mercy because Ethan was IN the hospital at the time we were scheduled to have our family photos taken, and instead of rescheduling-she packed up her stuff and headed down there to take our pics.  She has always been so patient and wonderful with all my kids-but especially Ethan and I just had to share these with you. 

How can you look at any of these pics and NOT want to donate to help him and all the other precious kiddos out there just like him?????

Ethan Charles Rawley Oct 2010

Ethan laughing at his Daddy hysterically Oct. 2010

FAVORITE. PICTURE. EVER.
Nov 2009-taken by Brandi Wisdom BNW Photography

Ethan-Nov 2009 (taken outside Children's Mercy-Ethan was hospitalized
and Brandi came down and took our family pics-hence the IV in his hand!)

Christmas 2007

Home Sweet Home-tweet Jesus!

Carepages won't let me post the update for some reason-so it's on here! 

We will all be sleeping comfortably in our own beds tonight, no more cage crib for Ethan, recliner chair for Brian, or couch bed for me!! 

Got home late this afternoon, after much discussion of taking Ethan to the cath lab to look at his pulmonary vessels and valve.  After the Anesthesiologist put his stethoscope on E's chest and listened for about 2 seconds he put the kabash on taking him to the cath lab!  Ethan has to go under anesthesia for a cath, and only a handful of anesthesiologists at Mercy do the cardiac kids and only when they are in tip-top shape and it's not an emergency.  The team was thinking they might keep him through the rest of this week and get him in the cath lab before letting us go home.  The problem is that since he has been on Lasix for the last week, his lungs sound really wet-he is coughing to move stuff around, but Ethan is not strong enough to have a productive, clearing cough.  Hence-not safe to go under.  We are ok with that and happily took our little guy home.  He will sleep on oxygen for the next few nights-as we are starting to see some swelling in his feet and slight color change again.  We will watch him closely and we see Dr Kaine again in two weeks for an echo and ekg and overall assesment of how the home meds are working.   If needed, we can just put the van on auto-pilot, cause it sure knows its own way to the Mercy!  I'm half tempted not to unpack a darn thing.  Kinda like my theory of going to clinic-if I pack a bag, he doesn't get admitted, if I don't-well, you know that story well by now!!

This is short and sweet, cause everyone here but Brian and I are in bed, and we are headed there shortly.  I want to say Thank You to all our family and friends, our neighbors and the KCPD Care Team-you all helped make a very stressful situation much less so!  Most kids take a village to raise, this one a country-and you've all been a much appreciated part of that by helping out with meals, the other kids, coming to hang out with us at the hospital, phone calls and emails of support and of course lots of prayers! 

We love you all very much!

Good night, sleep tight, I know we will!!!

Prince William got married, Prince Ethan moved out of the PICU!

Yep-that's right, Ethan's out of the PICU and back on 4 Sutherland tonight.  I'm sure Kate and Wills understood us missing the Royal Wedding whilst the bald kid was hospitalized.

I didn't want to put every update on this blog, as Ethan has a carepage dedicated strictly to him-so feel free to follow the events that have led us to where we are today by following this link-it also goes back quite a few years and if you need some help sleeping, feel free to read all about our little Prince!

http://www.carepages.com/carepages/EthanR/updates

if you've never read his carepage before, you will have to create a log-in with password-don't worry no crazy emails or spam-just a great way to keep friends and family apprised of everything when the last thing I want to do is call and tell the same story to 15,000 people. 
Yep, cause I know 15,000 people who would want to know what's going on in my kid's life....

Anyway-missed the Royal Wedding today, so I am planning to throw my own version of one real soon-
what girl doesn't want to wear her wedding dress again?  and what girl doesn't want an excuse to wear one of those crazy-ass hats?  I have the solution.  Calling all commoners, don your wedding dress, flip-flops for comfort and the craziest hat you can find or create and let's have a Royal Reception!   Complete with tea and crumpets and beer, cause what Princess doesn't like a good, cold beer?  Bring your Prince, or not, actually probably not, we will surely have more fun without them anyway! 
So, let me get the Palace cleaned and the little Prince home and I'll set a date,

A Royal date, and you're all invited!

Ethan with his Zhu Zhu pet on his shoulder!

3rd admission in 11 days....I'm feeling 40 now!

Yep, since my last post about Ethan being admitted, he has gone home and come back twice in 11 days.  After the first admission he was home for 2 days and at his follow-up discharge appointment in clinic on Friday the 22nd, they took one look and listen at him and put him back in over the weekend.  That admission they finally did blood work because his chest x-ray again showed no solid pneumonia, and his virus panel was negative for everything.  The blood work showed an elevated white count of 17,000 (high end of normal would be 11,000) which indicates an infection of some type.  They started him on some antibiotic and sent him home on Sunday once they got his oxygen weaned down to room air while awake and 1/4 liter while sleeping. 

Sunday day and evening he was marvelous!  Back to his normal self, laughing, rolling around, just all around acting like a goof ball.  I put him in bed and on 1/4 liter of O's just to be safe, only to be woken at 1am hearing him fuss.  When I checked on him, he was working really hard to breathe, looked to be a little puffy around his face and neck, hands and feet, and began retching.  I turned his oxygen up to 1 liter and he seemed to get a little more comfortable, but he was very fitful the rest of the night and pretty miserable.  All day Monday he was not terrible-but not great.  He continued to retch, so I kept turning his feeds down throughout the day-but when the vomiting began at 5:30pm-I knew we weren't going to be staying home for much longer.  At the ER his sats were 82 on 1 liter so in he came.  He is on 4 Sutherland room 3 right now being followed by the Purple Team again whose attending is Dr. Keith Mann.  I was thrilled to find out that Dr. Mann is the attending this week and going to be taking care of Ethan!  He is the physician who began the Family as Faculty program where residents are assigned a medically complex kid to home visit, follow to clinic visits and just try to get an overall view of what it's like to have a kiddo like Ethan.  We had two residents assigned to Ethan whose rotation was in February where they visited our home and got to know a little about our special guy and our lives.  Anyway-I am a HUGE supporter of the program and thus of Dr Mann and feel lucky he's taking care of us this week!

Where are we right now???  Ethan's blood pressure is running a low, his heart rate is high, his oxygen is on 1 liter to keep him above 90, he coughed most of the morning so far, and his hands, face and feet are puffy.  His belly and chest are distended now too.  His white count is up to 27,000 after having been on antibiotic for 4 days indicating it's not touching whatever infecction he has.  His BNP, or brain natriuretic peptide, one of the labs they did last night was elevated-WAY elevated-3,350, whereas <100 is normal.  This is the lab work used to indicate that congestive heart failure is likely.  Soooo, he is getting an echo today, an x-ray of his belly, some more lab work, and a dose of lasix.   He has never been in congestive heart failure before, and it just may be some right sided failure this time due to his respiratory compromise, or it may not be.  The echo will give us more definitive answers, and what we see him do with the lasix.  Right now we are in a holding pattern.  I will update as we know more.  In the meantime we are hanging out listening to Taylor Swift and I'm catching up on the first 3 seasons of Grey's Anatomy!

Below are a couple of pictures from my Fabulous 40th Birthday party from last weekend-I have tons more-and will load them on my FB page soon.  I want to say Thanks to all of my family who helped pull it off while Ethan was in the hospital!  My Aunts Kathy and Mici, who stayed with us last weekend, helped get all the meat smoked and made the beans and salsa and corn confetti salad, did laundry, and dishes, and kept Parker busy while we ran around.  My cousins Tony and Jim and sister Kim who set up the clubhouse tables and decorations and made the place look fabulous!  Michelle, who made all the delicious cupcakes!  My Mom, who made the potato and macaroni salad, and cut and blinged cupcake toppers.  My Dad and Teresa who went down to the hospital and sat with stinky during the party so he wouldn't be alone.  Thank you, thank you, thank you everyone!  It was a wonderfully, fantastic party that won't be soon forgotten, I love you all very much!  To all my friends and family who atttended-thank you for the gifts and cards and for being there.  One thing I've learned in the last 40 years is that I have some pretty amazing people in my life that I wouldn't trade for the world!! 

Gotta run-Ethan is not comfortable and is wanting to be held-which is quite an ordeal in itself!