Thursday, May 30, 2013


What is normal? I can tell you this much, not a single one in our family is normal. Sometimes it's hard to decipher who has special needs in our family, as it varies from minute to minute, even amongst the adults.  Nate & I do our very best to get our kids out of the house to remind them that life isn't about being dropped off at relatives and going to the doctor and hospitals.  Lately, they've been looking for minor ailments to have an excuse to go to the doctor or the hospital.  They've grown to love the doctors and hospitals and I'll be shocked if they don't all end up in the medical field in one form or another when they're older.  So this is what our family does when we're pretending to be "normal".  Riding bikes, soccer time, and hiking around the mountains.  We can still do everything we love with just a little more prep time.  There's no other 5 people I'd rather pretend to be normal with than them.  They make every day so worth it.

Friday, May 24, 2013

Orthopedics 101

The day we've been waiting for has arrived.  It's the answer we knew was coming and now we can make future plans. We had Evey's one year appt with our orthopedist and her scoliosis has gone from  a 43 degree curvature to a 60 degree curvature. She has what the MDs like to call a thoracic insufficiency. So yes we will be getting spinal rods through what they call the veptr procedure.  She'll get those surgically placed in August and then we are in this for the long haul. Bad news is we are committed to surgery every 6 months for the next 14 years. That's at least 28 surgeries. Good news is the Dr here at primary's is one of the best in the nation and he helped develop the veptr procedure. Other good news is that this will hopefully help Eves to learn how to sit up. Hooray. The last good news is she's a champ and does surgery so well and Nate and I happen to really like the dessert bar up at the hospital so we'll all manage just fine. 

Sunday, May 19, 2013

High Five

We have officially entered a fun phase with the boys.  They are now writing cards to their parents, telling us stories, pretend playing everywhere, and turning into full fledge boys.  We love it. Now if only we could get Eli & Zoey to stop fighting like cats and dogs and we could be in full blown parenting heaven. Nate & I keep trying to tell them, you two are our exact personalities and we get along great.  If anything it makes Natronius and I grateful we met in our mid-20s instead of during the volatile toddler years.

On to the Eves knees.  So what we know to date, without our big appointments this week is that she is aspirating again on the formula she is being fed through her g-tube.  This happened when she was 3 months old, which is why we initially placed the feeding tube.  This time we don't exactly know why she's aspirating, but we do know that it has caused a full blown pneumonia. We are on oxygen at home, breathing steroids, oral steroids and a heavy antibiotic.  She seems to be doing better than a few days earlier and I have eeked out some old school Evey smiles.  We also moved her G-tube to a GJ tube. Nate so wisely told me it's no longer the "gangsta tube" it's the "gansta-johnson tube".    Boo-yah! What that means is she's getting food directly into her intestines and not her stomach, which hopefully should prevent the vomiting spells.  This week we are meeting with the ENT and the Orthopedist where we will await the scoliosis plan and see if she is swallowing properly.  We also added doctor #16 on to the magic specialist list...wait for it...a pulmonologist.  That doc will keep an eye on her lung function because it looks like her scoliosis is pressing on her lungs so she's losing some air capacity...awesome!

We are quickly approaching Evey's 1st birthday next week and because she can't hug me, hold onto me, or babble at me, we've developed some secret signs.  My favorite thing to do with Evey is to do high fives.  When she's happy and I want to know if she's okay, I hold out my hand and she reaches up and claps my hand over and over.  I never thought a high five would be the key to my heart, but it ends up that's all it takes during the long days and sleepless nights to remind me of what a privilege that it is to raise this glorious, pure, little lady. 

Tuesday, May 14, 2013


I've always been a mercy kind of girl.  I feel like mortality has a way of inflicting justice on its own, and because of that justice has never been a worry of mine(no surprise there). Those things have a way of working themselves out.  I love mercy, I love the lord's mercy, and I survive on his tender mercies.  Evey ended up back in the hospital with back to back viruses that turned into pneumonia.  I had an epiphany at 4am in the ER that with our new supply of oxygen here at home, we can essentially do everything for Evey at home that we could do at the hospital, minus an IV.  But since we can give everything through her g-tube we are full stocked to be the Supreme Team Medical Center.  This has been a hard one for Evey.  She's fought through quite a few viruses over the winter and come out on top, but this time it hit her hard.  We were also informed that she does have asthma and that will complicate simple viruses even more and Utah's ever evolving pollen and allergy seasons.  So without further ado, scuba Evey's back.  Evey's obviously not too excited about reentering the scuba world, and quite frankly neither are we.

And this is the supreme team being broken down with no sleep for several nights in a row.

And this is the Lord's tender mercy.  Just when I think I couldn't go on today, Owen comes running in the door after getting dropped off from school with his "graduation" pictures.  Owen graduating from the Pingree Center for Autism.  Our Owen being mainstreamed for kindergarten.  This sweet boy is as pure as pure can be.  He is my tender mercy today and forever.
And this 20 minutes is what really keeps me putting one foot in front of another.  It changes my life every time I listen to it. 
I can answer firmly and faithfully, "Lord, I believe".

Monday, May 6, 2013

Baby steps

Nate & I have an app on our phones that shows us last minute deals on hotels.  The second we saw an awesome deal for a good hotel in Park City we jumped on it.  Even with the kids, a night away does a lot for the soul.  The kids had the pool to themselves and Evey even got her splash on with her feet. It was just what all of us needed...and now back to the real world again. We're baby stepping our way to a real vacation next month.  Our systems might go into shock if Nate & I suddenly found ourselves alone on a beach in 7 weeks, so we are easing our way into what a real vacation will feel like. Baby steps. On a side note if you look at my left shoulder in the picture below you'll see the bone sticking out. Separated shoulders are overrated. On that note baby steps towards health.

Friday, May 3, 2013

Birthday Man

Not so much a birthday boy, but a birthday man! We are smack in the middle of what Nate & I have rightfully named birthday row.  We have four out of our 6 family birthdays all within 6 weeks, as we watch the diets fly out the window and enter the sugar coma.  This week we were honored to celebrate the birthday of the man that makes the supreme team function, the one and only The Natronius.  It was a lovely family affair and the kids loved picking out the pirate cake for Dad, little do they know Daddy loves pirates as much as they do.  Ever since we've inherited a piano, the bedtime routine has turned into Daddy playing the Pirates of the Caribbean song over and over.  We've started a family tradition for birthdays; while we eat cake, everyone has to say something they love about the birthday person.  It was fun to hear the kids say what they love about Dad this year, they are finally understanding how blessed they are to have a Daddy like Nate.  These last few weeks there have been heaps of new issues being thrown onto our already full plates, but as usual Nate has been as stoic and supportive as ever.  He works so hard and then comes home and takes care of me and the kids, all without flinching.  He is the best, there's no one like him, and never will be.  He's truly one of a kind and can take care of this family like no one else.  He's the founder, creator, and ceo of the supreme team.  He puts the "supreme" in the supreme team.  We love you two, three, four.

Two down, two to go...