Easton update

I know many people follow this blog to keep up on Easton.  He's causing trouble again.  Big surprise!

About 4 months ago we did a sleep study on Easton and the results were that he has 7 episodes an hour where he briefly quits breathing and o2 levels drop to 85%.  At that time we visited an ENT about removing his tonsils to open up his airway and give him more room to breathe.  His lungs have a hard enough time on their own without having obstructed breathing.  We were told that the risk of surgery for Easton's age, diagnoses and current lung condition was far riskier than the episodes he was having.  A major concern after removing the tonsils was that swelling of the airway can occur and his happens to be floppy... which would just be bad, bad, bad.  I was told to elevate the head of his bed and make him sleep on his belly.  Oh sure, no problem.  Since that day, I have checked on Easton at least 3 times a night (when I say check I mean poke him until he flinches just to be sure he really is breathing) and flip him back to his belly.  Of course he prefers to sleep on his back with his feet in the air.  Crazy animal.

Fast forward to Monday.  I took Easy to his Pulmonary check up and was concerned they were going to up his steroids because he sounds like a purring kitten no matter what I do.  I can give him his rescue inhaler 5x a day and it doesn't go away.  Imagine my surprise when they said his lungs actually sounded clear for basically the first time ever in his life (Gasp!) but the noise was more from the obstructed airway.  His tonsils have doubled in size in 4 months.  They are now a 4 on the tonsil scale and have to be removed and soon!  There was no reason to repeat a sleep study because the results would be at least twice as bad as before and that would only scare me, not help in any way.  Awesome. Guess how much I have slept the last two nights?  Zip.  Zero.  Zilch.  God, I love that boy.

So.. now the challenge is getting someone to do the surgery.  Remember the ENT who told me a few months ago about all the crazy, scary risks involved with operating on someone in Eastons condition? Yeah.  He isn't too hot on this idea.  Don't worry because the Pulmonologist called him and told him there was "no question" that it was happening.  Apparently they hashed it out and agreed that the risks are in fact reversed now and it has to be done as long as the Paediatrician is on board.   Next, the Pulmonolgist meets with her and she has reservations and concerns but agrees its a tough spot but only one answer.  She wants him at Hurley so she can check on him.  I've been told that the Pulomonolgist from Hurley will be well aware of his case, the ICU is right there if we need it and his pediatrician is ready to make decisions after the surgery.  Is it just me or is this the most dramatic scene you've ever heard unfolding over just the DECISION to operate??  I'm feeling overwhelmed and scared to death about this.  I used to be good in hospitals but now I can't stand to hear a monitor beep.  Its like horrific flashbacks of the worst time in my life.  The surgery is scheduled for Jan 31 at Hurley.  He will be staying at least overnight and hopefully he will surprise us all and have ZERO complications and come home.  I pray those little lungs can rally one more time and tolerate being put to sleep and the operation.  Please keep the little fighter in your thoughts and prayers.  I do believe he has been through too much to let tonsils take him down.  We are going to enjoy a nice quick trip to Florida before we tackle these bad boys and hopefully help him to breathe easier once again!

The journey continues...

A New Year!

The holidays have come and gone and the new year is upon us and full of promise, right?  I think so.  I think that as cliche as that sounds- there is something to be said for re-starting the calendar.  Its seems like it means there are new opportunities, new adventures and new experiences to be had.  I'm not sure why it doesn't seem that way from a random Tuesday to Wednesday, but it doesn't.  You have to get a new calendar to feel that way... or at least I do.  2012 was a good year for the Clark's.  Nobody was hospitalized.  Not once.  Easton was discharged for the last time on 12/31/11 and we intend to keep it that way.  Matt didn't have to play the single parenting even though my wife lives in the house but isn't allowed to stand up role one time.  It felt a little magical:)  Even though our original plan of four children turned into three after Easton scared the daylights out of us- its all good.  It actually feels awesome to know that we are moving on.  The baby making years are fun and exciting and there really is no feeling like the one of pushing a baby out, I mean welcoming a new baby into your house, but it also feels good to move on.  We have lived it.  We have had someone in diapers since 2007 and it is pretty awesome that within this year, we are done-zo!  Not that I really mind changing a diaper but ya know, its not that fun.  I realize as your kids grow older, their issues can be more complicated and have struggles of their own but there is no denying the day to day life gets easier.  When everyone dresses themselves, brushes their own teeth, fastens their own seat belts, gets their own drinks and wipes their own booties, it has to make life a little easier on the parents.  This year, I have so many things on my list that I want to accomplish.  I think 2012 was about getting back on our feet after a rough ride but now its time to get down to business and start making things happen!

2012 was also the year that our family and friends rallied around us and helped us give back.  The Team Easton Gives Back benefit was a night we will never forget.  Raising over $27,000 was an incredible feeling and I know it was appreciated.

First off, I want to focus on health in all areas.  I want to celebrate the fact that my family is healthy.  Easton obviously doesn't have a clean bill of health just yet but I have faith that those lungs are going to decide to get their act together.  Soon.  I'd like to get him into a position where he doesn't require daily drugs but I can't complain about where we are from where we were.  Slow and steady, my little turtle.  He will get there.  I'd also like to mention that for having sucky lungs and the most horrific immune system I have ever seen- he sure is fast (which is why I love the irony of calling him my turtle:).  And naughty.  And a little on the crazy side. Clearly, nothing will stop this baby so look out world! 

Matthew and I have been really involved in fitness for the last year and it feels so good.  Its really not about wanting to look a certain way but its incredible to see what your body is capable of.  Many know that I have not had an easy road in this department but I feel stronger and healthier than ever.  I'm looking to see just what this body is made of and be ready to kick some serious a*s if I ever need to!  Not really.  Well, kinda.  I joined Matt in the crazy world of Cross Fit and as scary and intimidating as it was at first, its necessary.  My favorite thing about it is that I really think its as much a mental challenge as it is physical.  Its scary.  I mean we run around, climb ropes, jump on boxes, lift heavy barbells over our head and jump under them, jump rope, play on rings,  sit up, pull up, stand on our heads and so much more.  Who wouldn't want to do that?  Your body may look and feel like a war zone but its so much fun.  YOU should go do it!  If we can, so can you.  Its good for the soul to step outside your comfort zone and you'll never feel better than you do when class is over.  Its a high... without the drugs and hangover.  "Take care of your body, its the one place you have to live."  Jim Robin.

Next thing I want to focus on is creating more traditions with our kids.  We have certain things we do at Christmas and different times of the year but I want to create more traditions that my kids can pass on to their own.   I like the idea of an expectation that a family will have something to look forward to each and every year at different times.  I like no excuses.  I want to take time to realize  how young and impressionable my kids are and teach them to roll with the punches.  Life is certainly not always easy but Matt and I do a pretty good job of forging ahead and I want make sure my kids have the same attitude.  Lessons are taught by example and with a little less chaos in our lives, I'm hoping to have the time to express valuable life lessons within our everyday life.  Three little kids overwhelms me at times but I'm going to give it my best shot to slow down and enjoy them while they are little and begging for my attention before they are older and ignoring me.  

I also want to have more date nights with my husband, I want to get rid of my Mommy-Crisis Mini Van, I want more girl time with friends, I want to do less laundry and buy more furniture, I'd love to go to Florida 5 times and spend less time worrying about things I can't control.  I'd like to find the perfect haircut and have more patience than God.  See, its all about balance and I'm looking for the perfect one!

We have family pictures this weekend.  This is always an adventure.  To make things even more interesting, I've decided to do them in the snow.  Like I said, I'm up for the challenge.  I'll share the finished products soon!

I hope that all that read this start the year out with a bang.  I'm starting  mine out with strep throat but look at me, I'm still living the dream.  Take the good with the bad, roll with the punches, love your family and friends and take care of your kids.  There you have it.  Your 2013 advice from yours truly.

Happy New Year!