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. 

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. 

Mercy

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".

 

http://www.youtube.com/watch?v=XS7Pu31GYZw

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.

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...

The "blessed" word

There's a lot of debate in the special needs world when it comes to the word 'blessed'.  Recently, it has been popping up more and more in conversations with family and friends.  Not one to shy away from a debate I'd thought I'd give my two dollars worth.

I know there are some special needs parents that get offended when people tell them how blessed they must be to have a special needs child.  And, there are some special needs parents that smile and nod and mostly agree. while wanting to explain their daily life so that those making the comment will understand what a burden it is on special needs parents' lives.  So, the debate is all over on this word, but, I personally would like to explain why our family is indeed beyond blessed.

Just so people think I'm not ignorantly optimistic (I like to think I'm just simply optimistic), let me put this on the table from the get go: yes, most days Nate & I are physically stretched to our limit.  And yes, our minds do feel like scrambled eggs trying to build our company, and run a business, and keep track of all 4 kids and their needs.  That is just the reality of the supreme team.  But...and this is a big BUT, us being tired doesn't detract - even in the slightest way - from the fact that Nate & I know that we are blessed, are always being blessed, and have too many blessings to even keep track of.  And, because of our knowledge of the "blessed" word, it keeps us optimistic, happy and grateful almost all hours of all days. And here's why...

We have so many amazing people in our lives that are encouraging, supportive, and just downright amazing.  Around every corner there's another set of parents, or a doctor, or a friend, or a therapist that pops up and reminds us that there are uplifting people all around.  We have parents that call at just the right moment and tell us how proud of us they are, and they always have the best words to get us through the day.  We have been blessed with an amazing medical community that will jump through hoops to make Evey's life more comfortable.  We have met other friends / parents with special needs kids that are amazing listeners, that understand our lives, that still smile while talking about really sad and difficult things and that are working just as hard as we are to make their marriage and family the best that it can possibly be.  We have nieces and nephews who we love and adore, who are constantly looking out for their cousins. I mean, what 14 year old boy would hop on his bike, on his day off school, and come down to spend the day with his toddler cousins and help his recovering aunt with laundry?  So, yes, we are surrounded by amazingness.

But, here's the kicker: we are mainly blessed because of our faith.  We know that this life is fleeting and temporary, and these so called "hard" moments now will seem so miniscule in the eternal perspective of things.  I know without a doubt that when mine and Evey's lives are done here on this Earth, I will stand next to my sister, who is so much older and wiser than I can ever imagine. It's a humbling and yet an amazing thing knowing that your daughter on this earth has a spirit that is grander and bigger than I can even comprehend.  Because of that, I will want Evey to be proud of the way I took care of her mortal body on this earth.  I will want that respect that only a little sister would want from her older sister.  It's a magical moment that I think about often: the hug that I'm going to get from Evey after this life and the conversation that we will have.  And, I will tell Evey: "yes, we were blessed and honored to be your temporary guardians on this earthly adventure, and we embraced it all, the good and the difficult."  That's the beautiful thing about faith: with it, we feel nothing but blessed.

Birthday Bear

With all the craziness in the house it was nice to take a day to celebrate our Eli Bear's Birthday.  We did birthday planning pre-op so we had nothing to worry about come birthday time.  Our Eli is officially 4 and we now have two 4 year olds in the house for 6 weeks.  It's Irish twin time and for the first time Owen & Eli kind of get it and are both walking around a little confused, wondering how can we both be 4? 

It was fun to see the bear really excited about this birthday and how he had this astonished grin on his face all day like is this really happening?  He was totally adorable and so cute and nice all day.  We love our Bear.  He's so sensitive, but oh so funny.  He's just like his Daddy and is already doing voices, accents, and funny sounds.  I love taking part in raising a little mini-nate.  It has given us both a lot of insight into who Nate is.  My favorite part about Lijey's personality is how unpredictable he is.  He will come up and give you the quickest kiss and hug when you least expect it and will be on his way before you even realize what happened. I like spontaneity and unpredictability and Eli is just that for our family.  He fits the supreme team perfectly and as a parents it's such a privilege to be a part of this little dude's life.  So happy birthday bear!  We love you to infinity and beyond!