Wednesday, October 31, 2012

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.
video

Sunday, October 28, 2012

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.
 

Wednesday, October 17, 2012

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.

Tuesday, October 9, 2012

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.

Friday, October 5, 2012

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.

Monday, October 1, 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.