She speaks

I think we are looking at 4 out of 4 extroverts in our children. That's what happens when two extremely loud and obnoxious people get married. The Nate and Cally show is obviously a dominant gene.

Winner winner chicken dinner!

For those that don't already know, we happened to win something for the first time in our familial life.  Last year there was a contest on a blog I follow called nieniedialogues.com  For those of you that live under a rock, it's the blog of a young mom that was in a tragic airplane crash 4 years ago where over 80% of her body was burned and her story of survival and life as a Mom and Wife.  So she has this annual contest to win some really cool "bucket bikes" also known as Madsen Cargo Bikes (madsencycles.com).  Last year, I entered and told Nate all about these bikes and how amazing they were.  Long story short, I didn't win, (enter violins) and I moved on with my sad bucket bike-less life.  This year, the contest popped up again and I thought second time's a charm.  So between an email from me and a secret one from Nate, we happened to win this amazing bike. We went down yesterday to meet Stephanie and the bike owner at their annual Madsen Bike Rally in Provo, Utah.  Before I move onto my moment, I will tell you that our bike is amazing.  It rides so smooth and the kids think it's the most amazing thing in the whole wide world.  We've already nicknamed her B.B. short for bucket bike and I hope it stays warm for just a few more weeks until we tuck her safely away until next spring.  I can already picture an older Evey riding the bike having the time of her life on our new family bike rides.  As my oh so beloved Ferris Beuler would say, "If you have the means, I highly recommend picking up one, it is oh so choice."

The last few days have been such a blur with Nate working 16 hour days and I wish we took better pictures yesterday at the bike rally with Stephanie and Mr. Madsen himself, but I'm afraid I was in a glazed over blur, from sleep deprivation and the shock of winning a longly-coveted bike.  Since I got into the whole blogging world a few months ago, I confess that's when I've discovered several others people life stories and craftiness and all other such things good and bad that come with blogging. In the small mormon world I heard of Stephanie's blog and always scanned through it, but never thought more of it than what an amazing story and good for her, for overcoming what she has. 

Yesterday, we were standing in the parking lot talking to Stephanie as she was ooohhhing and awwwing over our baby Evey and it was something that I probably don't have the right words to describe, but I'll try anyway.  Stephanie has been badly disfigured from her accident, but you don't even notice, because she exudes such a warmth that is indescribable.  Here I was watching this incredible young woman, that is definitely not her body, look at our little Eves with tears in her eyes who is also not her body and I knew Stephanie understood Evey in a way that only someone in a similar situation could.  Our bodies are such amazing gifts from the Lord, they are perfect in his eyes, some just happen to be a little damaged from the get go and some get damaged along the way, but they are perfect vessels to accomplish his plan.  Yesteday, Stephanie gave me a suprising gift, much much more than just an amazing bike.  It was a sweet tender mercy to see that the Lord's plan is absolutely perfect and he knows exactly what each of us need in our own "plans of happiness".   I know there are miracles being worked around us everyday, it's just our job to pause and look for them.

 

On the inside

If I had a dime for every time someone said - How are you doing it? Are you okay? You're so amazing. I'd probably have enough money for a fun night out. So enough about me, lets talk more about me.

Anyways, point is, I guess from the outside looking in it does seem pretty crazy, but from the inside looking out, I'll tell you this much, it's a sweet sweet life. We are blessed beyond measure.

Nate does a game with the kids at night where he does a story with Simon says while they all sit on the couch. I just noticed Evey's participating in the game as well. Smart, smart girl.

Hearts & Guts

More news on the Evey front.  We visited with the Cardiologist and the two holes in her heart are looking much smaller and the doc is optimistic they'll close on their own, even if they don't they said they won't do surgery on them because they're so small and won't cause any problems. One less surgery : yeah-uh!

Later that day we had a visit with the Gastroenterologist to talk about Evey's feeding.  Lately, during the day when she's taking her bolus feeds she gets excessively sweaty and irritable during feeds and has constant diarrhea.  The doc says it's likely she has dumping syndrome.   Really people?  Dumping syndrome... another classic in the medical world...good times.  So, apparently her stomach is just kicking all of her food straight to her small intestine, without even pausing in her stomach which is causing the symptoms we see.  So to solve the problem we have to slow her feeds during the day from 20 minutes to 40 minutes.  Good news is we can put her on the pump during those 40 minutes so I'm not held captive holding a syringe all day.  Bad news is, we are now back to packing the pump around, which isn't all that bad.  Other good news is most kiddos grow out of dumping syndrome as they get older and their stomach gets bigger.  Bad news is when she grows out of it we won't get to say the phrase dumping syndrome anymore.  You win some, you lose some.

I was visiting with a "special needs Mom" the other day who was really worried about her other children and how they were handling all the mixed attention they would get throughout their lives with a special sibling.  Immediately, I had the most calming spirit over me.  Owen, Eli, and Zoey chose this, they are going to be better off then even Nate and I are.  This is a group effort, this is the "supreme team" at it's finest.  We can already see it in them.  Eli and Zoe who tend to be a little rougher around our house, if you will, are so gentle and sweet with Evey.  It's quite the sight to see.  I love our little supreme team so much, they never cease to amaze me.  As you can see, even Zoey, who loves food as much as her Mom and Dad is even willing to share her precious treats with Evey.  I think Zoey should get paid to be Evey's new feeding therapist. 

It's such a good, sweet life.  The physically exhausted moments should never take away from the good spiritual ones.  I've found out that you can have constant comfort and happiness even when being completely spent physically.  What a wonderful thing, our Savior's plan.  I know he never leaves us and we're so blessed he's taking care of our little supreme team.  This is truly the plan of happiness.

Barium

We had a step forward with Evey this week, she passed her swallow study. How that works is they give Evey barium mixed formula and they do a continuous X-ray and see if she's still aspirating into her lungs while she's swallowing. It's pretty much the coolest thing ever to watch. Good news is she isn't aspirating anymore and we can go ahead and try to start to feed orally again. It's kind of a double edge sword because now there's the hope she'll start to suck on a bottle, because she finally can. Bad news is so far she has no sucking reflex with the bottle anymore. So we are just letting the formula dribble into her mouth while half comes out and half she swallows down. This is going to be quite the process, but I guess they don't call it speech "therapy" for nothing. I remember staying up nights when Owen was in the nicu crying while pumping desperate to be able to breastfeed him - little did I know. Now we just hope and pray little Eves figures out how to eat eventually. Thanks to modern medicine she won't starve to death because of her glorious "gangsta" tube. Thank you 2012.

PTM

I had a neighbor so wisely describe the chaos of packing for trips as Pre-trip mode. Very similar to another acronym that starts with a P and has 3 letters. It's so not easy being a female, curse you estrogen!

We managed a family trip to Bear Lake thanks to our favorite friends and only forgot our shampoo and conditioner. It was a festivus miracle. We remembered all of Evey's medical supplies, and her pump did not break like it did last time we attempted a night away. It was so relaxing and all we did was eat, talk, and play with our kiddos. We had access to atvs and other fun lake toys, but you know you're the parents of toddlers and babies when you'd rather sit around all day and talk than muster up energy to actually "play". We laughed how back in the day Pre-Kids we'd be the first to play and now all we want to do is sit around and have adult conversations. Thankfully we were able to do just that and now we can attack October with full force and muster up some will power to not single handedly eat all of the kids Halloween candy this year. Curse you Halloween!

Without further ado here's a look at how Evey's eating these days and here's the first official Johnson family photo in a purely natural state. It was taken with an iPhone and has not had a single edit done to it, yes we're kicking it old school and we have no shame of how we look in our raw form. Curse you photoshop that has set all of our standards way too high for photos.

Dance like no one's watching

So much to say, so little time.  I think it should be a requirement to go to an Autism Carnival and dance with all the kids, it's life changing.  More on Lady Evey coming soon.

Grills and Bridges

It seems like we've had a few marathon days in the last little while.  With the new addition of school and soccer and doctor appointments - it's official - we're a family of 6. 

Zoey has officially joined the supreme team children surgery club.  She was our last and latest to have surgery and it was a doozy. 

Zoey got a new grill today! (sorry for all the gangsta terms, there's just something about living in Utah that brings out the gangsta in me).  Zoey's teeth have slowly been disentigrating into nothingness and after a visit to the dentist we were informed, once again, that Nate & I's genes do not get along and that she was just born without the necessary enamel.  So they scheduled an operation where they would cap and fill all her teeth so she wouldn't have to walk around like an 80 year old until her adult teeth came in.  After watching 3 of our kiddos go under anasthesia we were all taking bets if Zoey would be a good or a bad drunk - verdict is in -bad drunk.

First of all, everyone thinks she's a 3 year old when she motors around talking like a 30 year old and is in the 140th percentile for height for an 18 month old.  Yes, that's right, 140th percentile.  Hello Volleyball pro, Tennis pro, Swim pro or super model??? She also has this terrible scab on her nose and mouth that makes her look like Charlie Chaplin from face planting in the driveway on Sunday, the dentist probably should have called Child Protective Services on us.  So I helped the anasthesiologist restrain Zoe without a blink of an eye while they were trying to gas mask her and apparently I was so good at it, the doctor said, "So you work in anasthesiology?"  Haha, no, not really, I work in the Mom/medical field of learning how to restrain 30-50 pound toddlers/wet seals during medical procedures and doctor appointments.  If only that earned me an anasthesiologist salary. 

Immediately after dealing with the backwards flipping Zoey coming off of anasthesia, we went straight to an Eye appointment for Eli because we have kind of noticed that his eyes might be turning inward.  So this is what the optometrist told us. Because of his large nose bridge (aka his mother's nose) and his small eyes with epicanthal folds (aka his dads eyes) it can make it look like his eyes are turning inward when his vision is just fine.  Hahaha, that's so classic.  So basically Doctor you're saying our son has a big nose and small eyes and it just looks like he's cross-eyed, awesome!  All I'm saying is can we really make fun of a nose that comes from an apostle?  I didn't think so. 

So that about sums up the day.  Grills and Bridges.  As I was carrying our super floppy 4 month old Evey, that should be strong enough to hold her head up by now, around the house today after doctor time, I had yet another epiphany of how worked up we get about these mortal bodies of ours.  We have these funny noses and small eyes, and these genetically messed up bodies, with these grand spirits inside. Note to self - focus more on spirit, less on big nose. I officially retract my super model comment about Zoey.  Lessons learned.

It's official...

For those of you that know Nate & I you're really going to kick out of this one. They've officially given Eves knees syndrome a name. No longer will I have to say Evey has 17q21.31 microdeletion syndrome, quite the mouthful. Drumroll please ... the name of Evey's syndrome will now be called...

KOOLEN SYNDROME

Oh sweet victory. Our daughter's syndrome has the word cool in it, could it get any better? I was rooting for Johnson syndrome or Seventevey, but this is actually better. It's named after the doctor who has been at the forefront of all the research with the 100 or so people with this syndrome. His a pretty amazing guy and regular gets on the facebook group page to ask us our opinons and to let us know about more research being discovered. So kudos to him, I think the syndrome should be named after him.

One of the most surreal things to me while in contact with other parents with kids with this syndrome is seeing how much they all look alike. It's like looking at Eveys' brothers and sisters, but knowing they're scattered across the world and belong to different parents. Its crazy to see that they look like their parents but that they all have similar features that make them appear from the same family tree. What a blessing modern technology is for us. I can't imagine being in the dark and not knowing other families and their Koolen journeys out there. Just saying the word Koolen is so much fun, I'm as pleased as punch.

Just a little update on Owen - we had his first parent conference today since starting his second year of preschool at the Pingree Center for children with Autism. He's officially at age level for almost everything except fine motor and is now being integrated into the "typical" preschool that they have on campus with "typical" kids. I would have never guessed 2 years ago that our flapping and head banging non-verbal boy would be where he's at today. Early intervention and the amazing staff at the Pingree Center have helped our little dude in so many ways. We are now having to think about mainstream options for kindergarten next year and what the future plans are. What a good dilemma to have, choosing a school for your son to be mainstreamed in. One word - blessed.

Update on Evey - she has gained a pound and a half since her g-tube surgery and is thriving. The older brothers and sister are starting to pay attention now that I lay her on the floor with them. Below is a small glimpse of what happens when she's on the floor with them - if Evey can make it through the Zoey gauntlet, she can make it through anything.

a love story

Pardon me, while I indulge myself for a moment.

As Nate & I are adjusting to our new lives, we are uncovering all sort of new things in our marriage. So I thought I'd uncharacteristically reminisce about how the Supreme Team began.

It was 6 years ago almost to the day that I met the Natronius Johnson. I had just turned 25 and had an epiphany after tearing the ligaments in my knee, for the second time, that it was time to slow down. I guess, not so much an epiphany, but the lord smiting me, physically, so I had no choice but to reevaluate life. The week before I met Nate, I had a Saturday night prayer fest with the Lord telling him I knew it was time to start looking for my companion. I told him that I would no longer chase after the dude bro dudes (as I like to call them). I told the Lord that it didn't matter if he liked the same music, or snowboarding, or that he was a superior athelte. I promised him that as long as he loved the lord and the gospel as much as I knew I did, then I could compromise with everything else.

Enter Nate. Nate was a beautiful looking man that would walk into church, sit in the side bench and pour over his scriptures all throughout church. He never would lift his head up and he never talked to anyone, so I thought, that's the guy for me. Quiet, sullen, and devishily handsome. He did manage to perk up and give extremely intelligent answers during sunday school, so I knew he was wicked smart. Little did I know that I was being fooled. He happens to be more extroverted than me and quite the social butterfly. Ends up, he had just given up on dating, and decided to retreat from socializing because none of his girlfriends over the years had turned into marriage.

Enter Cally. I was a sunday school teacher in our ward. The sunday after my talk with the Lord I strolled into church on a mission. We were studying the Old Testament and my lesson that sunday was on Job. I could always count on Nate to fill in all the details of the doctrine that I dont have the mental capacity to retain, especially within the Old Testament. Thing is, I never knew Nate's name. I just called him "the smart kid" because I could always turn to him for the answers I needed during Gospel Doctrine. After my lesson I went into the hallway to track the "smart kid" down. I went out once, couldn't find him, went back into class. I decided to try one more time after sitting in class for a few more minutes and I ran right into him in the hallway. I waltzed up to him, trying desperately to disguise my nervousness, and I punched him in the arm (awesome second grade flirting move) and said, "hey smart kid, I need your help on something." I told him I thought Job was super underrated in the church and wondered why we don't talk about his story more. And that was that...we talked for an hour and a half about Job and eventually got around to learning one anothers' names and exchanging numbers. Nine months later we were sealed in the Bountiful, Utah temple - and 6 years later we find ourselves on this adventure called life. By the way, just in case you're wondering, because of my pact with the Lord, he did take care of everything else. Ends up Nate and I have everything in common, from sports to music to our sense of humor, he is without a doubt, my 100% perfect match. So I didn't have to compromise on anything in the end.

We laugh, all too often, about how our first conversation was about Job. We have had a whirlwind life from the second we got married and everything seems like it's on fast forward. We joke, how maybe if our first conversation had been about rainbows and butterflies we wouldn't have had all the bumps and bruises that we've had over the last 6 years. One thing we do know, is Job is on our short list of people we want to talk to right away after we die.

With the arrival of Evey, we know she's going to be our third companion through life. We hope that she gets to come on our missions with us, she would be the ultimate companion in our trio. We are learning how important it is to stay on top of our marriage game even when our gas tanks are running on empty. 100% of our energy is going into the fearsome foursome, but Nate and I have been wisely counselled over and over again that number one is and always should be our companionship, children second. Even if it means we're bonding over a plate of our favorite onion rings up at Primary Children's Hospital. So this is my public declaration to the Natronius. Thanks for putting up with your sometimes heartless wifey. Thanks for being the smartest man in the whole wide world and for respecting me as your equal. Thanks for giving me four amazing children and for teaching me that being a Wife and a Mom is so much more fun then snowboarding or going to concerts. Because of you, this mortality is so so worth it. Here's to you baby bubba and all the many more missions the Lord has in store for us!!!

Double Salmon Ladder

Only one out of our four children can hold still for a picture. Eves is by far our best behaved child. Late one night Nate made a collage of the monkeys, so that's officially our family picture for the next little bit.

Speaking of not holding still, Owen's newest obsession is American ninja warrior. If you haven't seen it, stop reading this blog and google "double salmon ladder". Owie has been climbing everything and anything around the house while yelling, "double salmon ladder".

I'm super grateful that his fixations are on some pretty cool things, he has great taste. My favorite is watching Eli try and follow him and make the jumping of gaps between furniture. You can see Eli's thought process, he totally pauses and you can tell he's like this isn't going to work out for me and slowly gets down. Ninjas or pirates for Halloween...parenting decisions are so difficult.

Eyes on the prize

Lately Evey has been going crazy with the smiles. A lot of the time I'll walk into the room and she'll be looking up at the ceiling just grinning from ear to ear. When I see her looking heavenward it makes me a little homesick and also reminds me to constantly keep my eyes heavenward. Eves knees strikes again.

And then there were 2

Once upon a time 4 years ago, I had just gave birth to Owen at 34 weeks. We knew he had a nicu stay ahead of him so we buckled down in anticipation of a road unknown. The second night we were in the hospital Nate woke up and told me about a dream he had. Owen was learning to walk while there was a baby boy laying in the corner. Unfortunately for Nate he got the typical 2 day postpartum reaction, I told him he was crazy. Fast forward 6 weeks to my postpartum check up and wouldn't ya know, I was pregnant.
10.5 months after Owen was born, Eli came superman style Into this world (fist-first). During that first year we talked about how they'd both be in preschool at the same time, and it seemed like light years away. Well, the light years have arrived and the boys are both officially in preschool and are on the same soccer team. I'm not a nostalgic person, but there's the mom inside of me that's wanting to press pause for a moment, just so I can fully appreciate the boys growing up. I love these little dudes and I can't wait to watch them go on their missions together and take care of their sisters.

Heaven help the other members of their soccer team, they have no idea what's coming.

Nana boot camp

Evey must be feeling better because she is all smiles. I think pulling the slime out of her left ear must have restored her hearing because she's all sorts of alert.

When I was on bedrest with Eli we lived up at my parents house for 2 months. While there my mom, aka Nana was on a mission to teach Owen to crawl. All it took was a week and nana boot camp was a great success and Owen learned to crawl. That's the ongoing joke in our family now - if you're ever trying to teach your kid anything send them up to nana and papas for a few days and they'll be taught in no time.
So last night as we were wrapping up Swiss days in midway with the fam, my mom went over to Eves and got her smiling for a whole hour, nana boot camp wins again.

It was a very blessed weekend and yet another huge reminder that the lord knows exactly what he's doing and that there's no such thing as coincidence, we're never ever alone in our "moments".