Trip brings back memories and makes new ones!

We recently returned from our family summer trip to Colorado where we had a fabulous time!  I have made that drive so many times as a child-not necessarily to Denver, but to La Junta, where my Mom grew up.  My parents would pack us up in the back of the blazer  and drive all night across Kansas.  We would sleep pretty much the whole way-as I remember it anyway-my parents would probably disagree.  Then we would wake at my Grandma Flora's house! 

Our week there would be spent playing 'round the block hide and go seek', going downtown to get sodas from the real soda fountain at Woolworths, running all over town with my cousins Tony and Angie, spending nights at their house often, and watching Angie's softball games.  Often I would stay a week or two longer and it is the memories from those trips that I will cherish forever.   I remember one time staying the night with my Aunt Linda-I would have been about 9 yrs old-and we walked the two blocks or so to 7-11 for Big Gulps of soda and a huge bag of M&M's.  Back at her house we snuggled up with her dobermans, Camille and I can't remember the other one's name, but both big dogs that looked really mean, but were sweethearts!  We watched 'The Shining' that particular night-yes I was 9!!!  It has been my favorite scary movie since.  I hope we created some of those same cherished memories for our children on this trip-and I'm pretty sure we have. 

Brian, Hailey, Ethan and I returned after 9 days, but we left Parker there with my Aunts Mici and Kathy-much like my old summers were spent.  He is due to fly home this week, and in talking to him every night, I know this trip has been as great for him as my childhood ones were for me!

If I journaled every detail, I would need to write a book-so I have included some pics below I will write a short blurb about.  Many, many more pics are on my facebook page though if you are bored!

Our trip began after I got off work early on a Thursday morning about 7am.   Momma's new ride packed to the hilt with kids, suitcases, oxygen, wheelchair, cooler and Brian and I.  Ethan made it about 30 minutes before the temper tantrums started, a trend which unfortunately lasted much of the trip.  At one point I was ready to leave him on the side of I-70, but then we covered him with a blanket and turned on one of his CD's-must you ask who??? and he did ok.  For a little while anyway. 

We pulled into Thornton about 4pm and my Aunts were sitting in the garage with cold beers in hand.  Really.  Sitting outside in the garage and not melting from high temps and ungodly humidity.  The weather was beautiful the entire time we were there!  70 degrees was the average, and on the days it actually hit 90+, the fact that there was no humidity made it oh, so wonderful!!

The busy trip began!  Late night Thursday with dinner at a cool little brew pub with a gorgeous view of the mountains to the west!  Then up late talking and planning what we wanted to do while there.  I was really just so glad to be out of KC, I really didn't care what we did!  Being with my awesome aunts made it even better!!

Friday we went to see my cousin Tony and he cut my hair and cut and colored Hailey's.  Her first highlight ever!!  She was so excited! 

Hailey's highlight self photo!

Saturday night Brian and I had a date with my cousin Tony and his partner Jim.  We first hit Hamburger Mary's for cocktails, then off to Pagliacci's for absolutely delicious Italian food.  Then to Stueben's for after-dinner drinks.  Stueben's has been visited by Guy Fieri and featured on 'Diners, Drive-Ins and Dives' and is unique bar/restaurant in a mechanic's garage!  Our bartender was the very attractive Randy, along with equally gorgeous twin brother Ryan whom I let offer suggestions for my drinks.  My first was great with ginger beer, and my second was made with Absinthe and tasted like 140 proof Good-n-Plenty box of candy in a glass!  Needless to say we had two drinks there and headed home!  Thanks for a great time Tony and Jim-we miss and love you guys bunches!

Amelia, Parker, Madison (the dog) and Olivia

Aunt Jeanne and Oliva

Sunday afternoon we had a BBQ with my Aunt Jeanne and cousin Angie, her hubby Dustin and kiddos Olivia and Amelia.  Brian and Aunt Kathy made ribs, green chile, beef tenderloin, smoked chicken, corn salad, home-made salsa and I made 'summer beer' me and Aunt Mici to enjoy.  For those of you who would like the recipe just email me-it's a fabulous summer twist on regular beer.  All was going fantastic with a cornhole game, eating and enlightening conversation until a trip to the ER was needed for stitches for my cousin Amelia.  She got a little too friendly with Madison the dog and sustained a bite worthy of 5 stitches to her cheek.  Hence the bandaids on her cheek in the following pictures!  In our family-it's simply not a party til a trip to the ER is made. At least this time it wasn't the bald kid!!

Monday we took a trip to Estes Park and up into Rocky Mountain National Park.  Because Ethan is permanently disabled, he received a pass which entitles him, and his entire party, admittance to any National Park in the US free of charge forever.   It was a lovely trip with the prettiest views ever!  We were nervous about taking him up to that high an elevation, but figured now or never.  Ethan is a member of our family and we didn't want to exclude him because of his oxygen need.  We just packed extra O's and up we went.   He had a meltdown at our first photo op, hence the picture of Brian holding him and the lovely temper tantrum, screaming look of pure pissed offness on his face.  It was actually quite hysterical for us, and as we laughed harder at him, the more mad he got.   We got to the top at Trail Ridge Store, an elevation of nearly 12,000 feet.  I had to have the picture of him in front of the elevation sign.  *many heart kids are not advised to travel to very high elevation, thus all the talk of elevation.  We were actually advised to go no higher than 8500, but what the heck-thus the picture. 

Anyway-he had another temper tantrum meltdown there so I grabbed him and high tailed him back to the car to warm him up-the temp up there was about 47 degrees.  So here I am running across a football field length parking lot hauling his 36 lb skinny butt, an oxgyen tank, feeding bag and him wiggling all over the entire time making it quite difficult for me.  By the time we reached the car, I needed to share Ethan's oxygen with him!!!  I'm in much better shape than I was, but doing that at 12,000 feet proves to be quite a cardio work-out!  

Down the mountain we went, passing snow still on the mountains, a herd of elk and a couple of huge Moose grazing in a field.  Beautiful I tell you, simply God's country at it's finest.  And the air was so clean and pure! 

The rest of the week Ethan had appointments at Children's Hospital of Colorado, which were finished by mid-morning, so we filled the afternoons with trips to the Water Park-Hailey and Parker and Aunt Kathy that is.  Brian and Mici and I  took Ethan to the Denver Zoo! 

We met my cousin Angie and her girls at the Denver Museum of Nature and Science and toured the pirate exhibit.  That night for dinner we hit Quaker Steak and Lube-a very cool bar/grill complete with a 100oz tube of beer called a 'lube tube'.  Yep, we drank 3.....

We went to the Denver Aquarium and did the Coors Brewery Tour.  Coors tour was neat-free and three free beers at the end of the tour!  They are brewing pre-prohibition beer from a recipe used in 1919 that is only available at the brewery.  It's called Batch 19, and my favorite by far!  I can't wait for them to release it nationwide.  If not, my Aunts will just have to make weekly trips to Golden and pick us up 6 pks to mail!!  And get their three free beers.....

the kids and Sharky at the Denver Aquarium

Amelia, Parker, Hailey, Olivia, Angie and Ethan at the Museum

Arrgh, a pirate's life we lead.....

There's his happy, smiling face.  At the Coors Brewery of course, you can tell he's our kid!!!

Batch 19, my new fave!  Good thing I can't get it here in KC yet!!

cute pic if the bald kid had been looking at the camera!


We had a memory making, fabulous time, and are ready to move out there.  Once Ethan got over himself and stopped having fits, oh, and pooped, he did so well with the easy to breathe in weather and cool nights.  I miss everyone so much already, and appreciate the hospitality of my awesome Aunts Mici and Kathy for putting up with us and sharing such a memorable trip with us.  And like all the other times I loaded up into a packed car and headed back to 'Kansas', tears were shed and promises were made to visit again soon.  This time, I know we will keep that promise and go back to the gorgeous state of Colorado very soon!

I had  to include this photo-jackholes who park in handicap parking without tags are my pet peeve!!  I'm gonna make up cards that look like tickets with this picture on it and start putting them on folks cars who park there so they know who they took a spot from!!!!

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!



Day 3-whiny + pitiful = exhausting!

love the tongue!

Sunday was a long day, especially since we didn't get to bed until after 3am because Ethan could not get comfortable and situated.  He was pretty sad-if we held him, he wanted in bed.  Once we put him in bed, he wanted to be held....and so on and so forth.  Exhausting is the easiest way to describe it.  For us and for him-since he's the one who doesn't feel good, I'm sure it's way worse for him!

Brian, Parker, my Mom and I went to Hailey's last volleyball tourney of the club season, while Grandpa Chuck hung out with E for a while.  Hailey's team took 3rd place and got bronze medals-and we got lots of great pics-will post soon! 

The Purple Team decided to go ahead and do an IVIG treatment on stinky, and started the Gamunex at 10:30 this morning-it just finished, and they will have one more set of vitals to take on him in 30 minutes -then he can be left alone to sleep.  Since he has never had an IVIG treatment, it had to run over 12 hours with vitals taken every hour-whereas normally it would only take 6 hours, or an hour if we do it subcutaneous at home.  I don't care how long it takes-as long as he's getting it and showing no signs of an adverse reaction-he can continue it at home! 

His oxygen has been weaned down to 1 liter-and he's maintaining in the low 90's.  He did have a bad episode this morning where he would only mouth breathe, and they had to put a mask on him and crank him up to 3 1/2 liters for a few hours.  He seems to be over that little meltdown now thank goodness-but that doesn't mean he spared anyone any other temper tantrums-those seem to be the norm today.  I'm hoping he wakes up Monday morning in a much better mood.  The only consolation for him right now is for us to ignore him and crank up his Taylor Swift CD-did I mention how much he LOVES Taylor Swift.  Turn on her new CD-thanks Phillips Family for getting it for him for his b-day-and he stops wimpering for a while, or at least long enough to listen to his girlfriend sing for a while! 

So that's where we are hanging for now-still no virus panel results back, and the adrenal insufficiency hasn't been determined yet to be worse or not-we should find all of that out tomorrow.  He's not out of the woods yet, and I will update as we know more.  In the meantime-Ethan sleeping means Mom needs to sleep, and he's sawing logs right now-so that 's my cue....

Please keep Brian's long time childhood friend Steve in your prayers, his Mother Marty (and like Brian's second Mother) is fighting Ovarian cancer right now, and things are looking pretty grim.  They live in Tennessee, and as much as Brian would like to go down there and show his support, we kind of have a full plate here right now.  Steve's dad, Roger, was my and Brian's wedding pastor and they have a very special place in our hearts, so please keep them in your thoughts and prayers for peace and comfort in the coming days. 

love, hugs and prayers,
K

Someone told Ethan we have plans.....



Ethan riding the big rig to the Mercy!



It's been a long time since we've had to keep our upcoming plans a secret from Ethan, but we seem to have fallen back into our old familiar ways of needing to do just that.   It started quite a few years ago....

we have plans to get family pictures taken?  Ethan gets sick and gets admitted.

we have plans to go to the Weston Irish Fest?  Ethan gets sick and gets admitted.

we have family in town for the holidays?  Ethan gets sick and gets admitted.

we set the date for Ethan's birthday party?  Ethan gets sick and gets admitted.

Seeing the pattern here??? We used to joke around that we couldn't share our plans with Ethan, or discuss them out loud around him-or we would inevitably be jinxed.
Well, leave it to the boy who loves his routine and adapts terribly to change-I have plans to run, and I mean RUN the Trolley Run for the first time ever tomorrow morning (I've walked it pushing baldy in the stroller for years)AND guess who's sick and in the hospital? 
My FAB 40th B-day party is next Friday, and we have some of my favorite relatives coming in town to celebrate with us, and guess who's sick and in the hospital?

Yep, you guessed it-Ethan. 

I know what jinxed us-we were in clinic on Tuesday doing the boy's intake interview for the Medical Coordination Clinic-and he was a PEACH!  I mean charming as heck!  Smiling, laughing, showing off for the new staff, following commands when we would ask to see his 'piggies' or tell him if he wanted out of his wheelchair he needed to raise his arms.  And he was ON!  We bragged about everything Ethan-height, weight, feeds, pooping, peeing -you know, all the important stuff.  I *gasp* even mentioned that I would like to see about getting back into the amazing Jodi Gamis -OT Feeding Specialist Extraordinaire-to work on some oral stuff that would maybe eventually lead us into some oral intake again someday.
 That was Tuesday morning. 

Wednesday was good. 

Thursday bad. 

Friday TERRIBLE.  He came home from school on Thursday with a note that said he took a nap that morning and another one in the afternoon which he had to be woken from to participate in music.   That should have been our first sign...which we ignored.  First mistake. 
The second one was when Brian put him to bed at 7:30pm that night and he was still asleep when I got home Friday morning at 7:30am and we didn't take him in then.
Needless to say, I was not surprised when Brian woke me at 12:30 and said we've got to go NOW.

Rolling into Children's Urgent Care North with a kid like Ethan usually gets you taken right back.  Rolling in there with a kid like Ethan whose sats are in the 70's gets you downtown in an ambulance pretty darn quick! 

So, here we've been since Friday afternoon.  On 3-5 liters of oxygen at any given time, lethargic and crabby. 
Negative for Flu, RSV and Pneumonia-just some 'peri-hilar thickening and haziness' on his Chest x-ray.  Pretty normal for the bald kid.  Sats in the 70's-not so normal-even with 'hazy' looking lungs. 
He was initially admitted under Dr. Kaine-Ethan's Cardiologist for fear he was in congestive heart failure.  BUT-upon admission Dr Kaine came in and took a good look at E, and felt that CHF is not the case right now(Thank goodness) and transferred him to the General Peds team with the agreement that if anything changed over the weekend, Cardio would happily take him back.  We are ok with the transfer-though we love Cardio-I like the Gen Peds team too, and his issues right now are not cardiac related.  What are they related to?  My best guess?  The fact that he has been taken off his Immunoglobulin infusions since January due to an adverse reaction to the concentration of the brand we had to switch him to per our insurance. 
For those of you remember fall of 2007 and most of 2008-Ethan had 10 admissions in 9 months, was a DNR at one point and we thought we would never be bringing him home, let alone celebrating another birthday with him!  We visited Dr Portnoy in Allergy/Immunology and he found the cause....Ethan has CVID or Common Variable Immune Deficiency.  So almost two years later of us doing home subcutaneous infusions weekly of immunoglobulin-we went from all those admissions in 9 months to 2 in two years!  So, do I think that was the fix?  YES-especially since we had to stop the infusions in January and we've had more sick days than normal since then.
Why did we have to stop it you ask?  He started out on Vivaglobin-a concentration of 16%, which he did fabulously with for a year and a half.  They stopped making the Vivaglobin-so insurance switched him to Hizentra-a concentration of 20%.  Less volume, less time involved, but lots more reactions.  Site reactions lasting two days, flushing face antihistamine reaction lasting 24-36 hours, and overall just plain crabbiness lasting from start of infusion until about one day before we were due to give his next one.  All those combined made for a cranky kid and unhappy parents.  Per Allergy-STOP immediately before the reactions get any worse, and wait til you hear from us about starting him on a new one-once the insurance company agrees to that -and to pay the $5000 a month it costs.  And when did we get the phone call that all of this had been approved and he is due to get his first infusion of Gamunex C in the next two weeks???  Monday-yep, 4 days before admission!  Oh well, that's how our boy rolls.
Over the two years on the infusions, he built up a nice immune system, but having been off for a few months now-our luck ran out, and so did his immunity to itty bitty viruses like rhinovirus (the common cold)  and his body's ability to fight them off without needing to be hospitalized. 
The Gen Peds team has contacted Immunology and they recommended checking his IgG, IgA, and IgE levels while he is here, and if low do an emergent IV infusion of IG if needed to boost him up.  Easier said than done if we could actually get a good IV on the bald kid.  Only 4 sticks this time to finally get one in his foot made Ethan a very unhappy boy!   I don't think it will last to do an infusion through tomorrow if needed, but we will hope and pray. 
The Gen Peds team also contacted Endocrine about E's adrenal insufficiency, and the possible need to do some stress dosing of hydrocortisone.  YES was the answer-right away, right now and a higher dose than what we normally do at home during illnesses.  ALSO-they recommend a re-test of his adrenal function to make sure it's not any worse than before and that we don't need to be medicating him all the time instead of just in times of stress-illness, prior to surgery, etc.  Those results will be back in the morning, and the plan may change then.  All of the symptoms Ethan had which brought us in this time coorelate with Addison's Syndrome, and adrenal crisis.  I never put them together, because he has been so well in the last two years.  But when he was initially diagnosed with adrenal insufficiency, we were warned about a possible lethargic state, accompanied by low blood pressure and GI issues which could put him in a coma-like state and possibly death to which we would have to give him a shot of dexamethasone and call 911 immediately.  Fortunately this time wasn't like that -but well could have been had we let him linger on with this illness any longer before taking him in.  Honestly-we are pretty on top of the little guy and he crashed hard and fast this time-I had no idea I would see sats of 70 when they hooked him up at UC.  So I've learned my lesson this time, and I will be the crazy, over-bearing Mom now for a while again, until I feel like I can breathe a little easier.

Sorry so long, lots going on with the little guy-will update as soon as we know more.

Good Luck Hailey!

Hailey's last volleyball tournament of the year is tomorrow-so GOOD LUCK CLUB NORTH 14-5's!  Play hard and play  to win-but most of all, enjoy the fabulous club season you all had!  I am so proud of Hailey's success and drive to get over her injury and back on the court!  Love you Hay Jay!!

love, hugs, and prayers,
K



Spurs & S'mores for our Seven year old!

Ethan Charles age 7 on 3/30/2004 
our very special lil' cowpoke!

Ethan is so done with his party!

love the look Ethan is giving Parker?!?!?

We celebrated Ethan's 7th Birthday in true cowboy style last weekend complete with cowboy hats, bandanas, sherriff's badges and s'mores.  Brian nixed the ponies-so we had to make due with a bandana on the dog!

I want to thank everyone who came and celebrated with us.  It means so much to Brian and I-mostly me-to plan and execute a party for our little guy.  I will admit, I tend to go overboard a little with him-we just feel so lucky each birthday we get to cherish the year we just spent with him, and plan for the next.  We learned a long time ago to never take our time with him for granted, and make the moments count.  So, really, these parties are more for me, as he could care less what everyone is doing at the house-though he does really enjoy the undivided attention he gets!

 Everyone always asks what to get him, and we struggle more and more each year with what to tell people.  So much so that Brian and I were arguing in ToysRUs ourselves -I wanted to get him a play gym with bright colors and toys above him to entice him to grasp at something.  Brian wanted to get him a "toy made for a 7yr old-not a baby" as he wanders down the Power Wheels aisle....sure Brian-let's get him a battery operated jeep, or monster truck-or even a Harley.  We could duct tape him in it and put his foot on the gas and let him go hog wild around the neighborhood.....I would put a helmet on him too-just for safety's sake....really??  WTF are you thinking?  I KNOW he is chronologically 7 years old, but he's not REALLY 7 years old.  Guess who won???  I'll just say Ethan is now the proud owner of a Baby Einstein Ocean Wonders Play Gym-which he enjoys quite well I must say!   Don't get me wrong, these are the exact times that I am sad for Ethan's challenges-buying 'age appropriate' birthday gifts, watching nieces and nephews and kid's friends get ready for baseball season,  having him be the first of 5 kids in our family to turn 7 this year-but will always be the 'baby'.  My nephew Kellen was having a hard time with that himself as he was looking at Ethan's cake with a '7' on it.  He couldn't believe Ethan was older than him and was very confused-Kellen's 7th birthday is in July. 
Anyway, I always get a little melancholy when his birthday rolls around, though I love our Holland-I know I will always wonder what Italy would have been like.....my special needs Moms will get my reference ;)
So Thank You to my family and friends who indulge me every year with crazy themes and birthday cake fiascos, and thank you for loving our litte guy!

I gotta throw out some Happy Birthdays to the other four 7 year olds this year:
My nephew Adam-April 5th
My niece Abby-April 15th
My niece Hana-June 29th
My nephew Kellen-July 17th

Can't wait to celebrate with you all too!

Blizzards, Balls, Sickness, Injuries-just another day in our lives....

Sorry it's been soooo long since my last update!  As you can see by the pics-we have had a 'blizzard' in KC!   It actually didn't cripple the city too badly-I made it to work both days of it that I had to work-with the help of my husband's truck anyway!  Our neighborhood, and most the area did live with one lane of traffic for about a week-but definitely survivable!  The wind chill was too cold for kids to sled, so we spent some lazy days around the house-and me hitting the gym!





me standing in our front yard after the 'blizzard'

our front walkway

our driveway

 Brian and I and our awesome PD friends attended our second Policeman's Ball.  It was a blast, and raised funds for the families of officers killed in the line of duty.  It was a great night-ok all day event-with fab friends that started with pedis at 0930 and ended with breakfast at 0330.....with a whole lotta alcohol and laughs in between!  Looking forward to next year (right Oliver???)           ps....lots more pics(some slightly inappropriate) on FB


Policeman's Ball 2011
Love ya ladies-Andrea, Jenn, Michala, Andrea, Heather



Hailey's team placed 3rd in the Parkville Pow Wow out of 19 teams, and though she played awesome, she injured her shoulder at this tourney.  She has a partial tear of her rotator cuff, and a small effusion at her AC (acromioclavicular) joint.  In layman's terms....pain, pain and more pain.  No more volleyball for a while as she gets physical therapy to help strengthen her shoulder muscles.  She played in another tournament after the Pow Wow, and just made it worse.   So, per her surgeon and PT, with some rest and strength-her VB career is not over-just delayed.  There are 4 more tournaments scheduled, and she will probably be able to play in the last 2-maybe 3.  She's pretty bummed, but gets why it's important to take it easy at age 14 and not ruin it for high school!






On top of all that, Ethan has been a wreck for the last few months.  In the process of trying to figure out what is going on with him, we are worn slick with little sleep and a crying kid who can't tell us what is wrong! 

Is it his gut? 

Is it his immunoglobulin infusions? 

Is it is secretions?

ARGGH!!!

We've been to ill clinic, Pulmonology, ill clinic again, Medically Complex Clinic, his Pediatrician, andGI this week.....waiting for calls back from Allergy now.  Good news is-this week he has been the best ever-minus his Robinul for secretions and his immunoglobulin infusion, adding Prevacid.  So, who the heck knows whats wrong with him.  I stopped the meds and figured we would add them back in one by one as we saw symptoms that give us the need for them. 

AND.....Parker was diagnosed with Influenza A this week!!  So far all of us here are feeling pretty crappy, but none of us except for him have the full blown, body aches, coughing, sniffling, fever type of Flu A-including the bald kid.

Wow!  who would have ever thought I'd be posting that HE is the healthy one with a terrible virus in our house???? 

SSSSHHHH don't tell him!!

Speaking of the little bald guy, Ethan, is turning 7 in about a month.  It is so hard to believe he is actually that old.  Though my baby he will always be!  We will be celebrating with a low key Cowboy party at home complete with riding and roping! 

So put yer boots on, saddle up, and head on over for his

S'mores and Spurs 7th Birthday Party on Saturday April 2nd

I am fast approaching the big 4-0! and my amazing hubby is planning a bash to rival all bashes we have thrown.  Complete with a DJ-the fabulous sounds of DJ Dave Reyburn of Soundgate Productions,  my hubby and Aunt Kathy's famous smoking of pulled pork and brisket and Southwest Beans, delish cupcakes courtesy of a great friend and neighbor of my sisters, and of course lots of bubbly, beer and dancing into the wee hours with some of the greatest friends and family a girl could have!!  Anyone free on Friday April 22, head on over for an awesome time!

I have still been working out with my trainer extraordinaire, though have had a really hard time getting back into it since my surgery.  My diet is terrible, and with the lack of sleep and sick kiddos, my time at the gym has definitely suffered.  It is all just a bunch of bullcrap excuses, I know.  I just need to get my head in the right place and realize that I am not at my best as a wife, mother, daughter, sister or friend if I'm not AT MY BEST!  So, with that said, I am making a new pledge, tonight, here and now...it's hard core til 40!  We are trying to work 3 sessions a week for me with James into the budget, and that will definitely help keep me on track and more accountable.  I just have to keep telling myself-I am worth it, and I deserve it!  And we are buying a boat for this summer at the lake and my fat behind is not yet ready for a swimsuit!!!    So, if you are reading this and sometime between now and April 22nd see me, a hug, a word of encouragement, and a tackle to pull me off the Coke fountain will be much appreciated! 

Oh, and check out my trainer's new website-he has an incredible connection to one of the American Idols contestants Chris Medina.  Read it, and buy a bracelet to help out with medical expenses for Chris's fiancee Julianna!

http://www.jameshanton.com/

love, hugs, prayers, clean eating and cardio!

K

Bye-Bye 2010......Hellooooo New Year!!!

Cheers to saying good-bye to 2010, a pretty darn good year for our family:

Ethan had only 1 hospitalization the whole year

We moved into a wonderful home in an awesome neighborhood

Hailey made a club volleyball team, and is doing fantastic in 8th grade

Parker is learning to play the saxaphone and has made some great friends in our neighborhood

Brian and I have both lost 20lbs each and are continuing down the path of healthier lifestyles

We took a FABULOUS vacation to Disney World, and got to see my kids first experience in the ocean

These are but a few things I can say about 2010 that made it a great year, and though we may be sad to see such a great year go, we are only looking forward to making new, wonderful memories in 2011!

We had a great Christmas, spent with family and friends.  We tried not to go overboard on the kids since I hadn't been working for about 5 weeks, but I still feel like we got everything they asked for!  I got a couple new beads for my Pandora bracelet, a new Bose alarm clock/radio/CD player for my nightstand, and  12 more weeks at my personal trainer!  I'm still not sure if those gifts are meant to be insulting....after all nothing says 'I love you, honey' like an obnoxiously big alarm clock reminding me to get up off my ass and get to the gym, huh???  Oh, well-no insult taken, just happy to have 12 more weeks of James kicking my ass into skinny jeans! 




Hailey and Parker's new hoodies



Brian and I at his squad party



Ethan's new North Face jacket



My beautiful children



I finally went back to work the week of Christmas, my entrapped nerve started to heal nicely, and I even made it to the gym a couple of times.  Though I will have to say today was the first day I even pushed myself very hard, and I did manage to do a steady 50 minutes on the elliptical!  I am hitting the gym hard 6 days a week until the Policeman's Ball in February-gotta look smokin' hot for it!

We took Ethan to the dentist on the 27th.  It was time for his cleaning, and he has had two really loose baby teeth that I'm pretty sure have been bothering him for a while now.  I made Brian go with me to hold him because I was pretty sure Dr. Erica was going to yank those puppies out and since I was also pretty sure that Ms Kim was not going to want to inject him up with numbing stuff, I didn't want to be the bad person!  Yep, I was a coward and made Daddy hold him.  Ms. Kim and Ms. Whitney got his teeth all cleaned and pretty and white, and then when Dr. Erica came in, Kim showed her his two loose teeth, and before I could count to three she had flicked 'em both out!  Of course that was followed by some serious yelling, and real tears, but once the bleeding stopped, Ethan was just fine!  Once again, a huge thanks to Family Dental Care for taking such great care of our special little guy! 



Ethan at the Dentist.  Look Mom, two teeth all gone!!  (the two tiny holes on the bottom middle -his permanent teeth were already trying to grow in!)



We have added  a new member to our family....introducing Heidi, our German Shepherd!  A fellow copper found her in the inner city and couldn't keep her because she already has 3 dogs, so she got a hold of Brian, and we took one look at her and fell in love instantly!  She has been living on the streets for a while, as she is pretty underweight and has whipworms, but she is an awesome dog!   Someone spent some money on her, because she has already been spayed, is leashed trained, potty trained, and kennel trained.  But she is not microchipped.  We had the clinic check twice because if she does belong to someone else who is missing her like I know we would be, we wanted to make sure she got home.  But no, and we haven't seen any signs up looking for her, so now she's a Rawley!  She and Harley are getting along marvelously, and though initially very timid, she is coming out of her shell nicely now and starting to act like a playful puppy.  She has quite the personality! 

That's about all for 2010, as the year is now 'last year' I look forward to what 2011 brings our family and yours.  I will post our New Year's Resolutions in a few days, as we are going to sit down and discuss what we as a family would like to accomplish in this glorious new year.  We have already had some discussions along the lines of helping others, and devoting more time to charity, and of course the all time resolution to get back into church (you got us Andrea and Michala!!)  I have already started one of mine by comitting to a bible study class with my sister Kim and my Dad's wife Teresa.  We are starting out with the book of Esther, and I am looking forward to starting it in another week.  (Don't choke Wolz....)

Most of all, we just hope to have a safe, happy and healthy new year, to keep all of the wonderful friends we already have and adore, to mend any broken fences with estranged family and friends, to continue to make new forever friends and to never forget where we come from and that with dreams and goals and drive and determination anything is possible!

Much love, lots of hugs and many prayers for your New Year to bring you the best!