Happy

I know Evey wants to eat, but we just don't know when her foodie nature brain will tell her mouth how to figure it out. For now she can take a very small bite or two of baby food, slobber most of it out, and then she always smiles and then usually pukes.

Evey is almost 9 months old. She can hold her head up for a few seconds and then it falls right over. Other than that, she just lays around and giggles and smiles at us to our hearts content. We aren't sure how much she's going to accomplish developmentally until we figure out what to do with her torticolis and severe scoliosis, which we'll address in May.

The next surgery is on the books for April where they'll fix her submucous cleft palate, replace her ear tubes, botox her neck again, and see if they need to cut away more of the extra tissue on her larynx.  This is the last of scheduled surgeries, which should keep us covered until we figure out the scoliosis plan.

Never has there been a happier baby in all of history. As usual the doctors and therapists are continuously amazed at her desire to learn all while smiling and being content with whoever is poking and prodding her. She's the ultimate example of joy and happiness and I love how she exudes that to everyone around her. Yesterday, I had a doctor ask me if I could bring her into his office every morning so he could watch her smile and it would give him the energy he needs to go about his day.  I told him, it works for me, so I'm sure it'd work for you too!

Evey is so happy, because she knows...

Wherefore, be of good ^acheer, and do not ^bfear, for I the Lord am with you, and will stand by you; and ye shall bear record of me, even Jesus Christ, that I am the Son of the living God, that I ^cwas, that I am, and that I am to come.

Countdown

    Where do you take your 1 year old going on 30 year old for their birthday? Las Vegas of course. We thought it would only be appropriate for Zoey to celebrate her 2nd birthday in Vegas baby. And now I won't have to pause to much when people ask how old the kids are. It's an easy 4, 3, 2 and 9mo until April. Anything that makes my life easier is okay by me.
     Zoey just happens to be the coolest 2 year old I know. She makes fans wherever she goes. For example while in Vegas at a playground, she convinced some older girls to give her their necklaces because she liked them so much. Another parent also tracked us down and asked us if Zoey was ours. We hesitantly said, yes. And then she goes on to say how tough she is and how she fell so hard off a slide and all the parents around gasped and ran up to her to help and she brushed herself off and went on her way. That's our Zoe's nose. The girl that walked at 9 months and Potty trained herself and that will be able to do anything she wants in life. She is such an intricate piece of our family puzzle. Selfishly, I love watching a mini version of myself walking around. It has brought such clarity to who I am and the responsibility I now have to do as good of a job as my parents did with me. Just remember Zoe, it's okay to act like a kid every now and again, being an adult is kinda overrated.

Hey Boys!

One of my favorite things is when Zoey comes down early in the morning to Owen and Eli and says all sickly sweet, "Hey Boys".  We love the boys in this house.  So this is my early Valentines Day post, because Valentine's Day isn't really Nate & I's thing (and no, we're not haters, we just like to keep the world guessing).  We talk about the ladies a lot in this house, but we all know we'd be nothing without the men in our lives.  So here's to my favorite 3 men.  They have impeccable style as you can see and yes, they have the same amazing stylist.  So Happy Valentine's Day boys!  Your Wife, Mommy, and Sisters happen to think you're the coolest dudes around.

A choice

     One of those days.  What was supposed to be a simple eye appointment in the morning, turned into an all day fiasco downtown at Primary Childrens Hospital ER.  Our savvy Evey pulled out her g-tube and button while I was driving and since she has magic healing powers her hole practically closed up.  Which meant we had to dilate her hole to replace her "gangsta" tube.  I'm extremely proud that she is finally getting the dexterity to start to hold her toys and pull her tube, but part of my wants to tell her to take it easy.  However, the fault really lies with me because I've been lazy bones with taping her tube down because she hasn't grabbed it until now.  So watch out, I'm about to get crazy on the tape job. Next time you'll see Evey she'll look like a medical mummy.  And then to top off our lovely day, I get harassed by a lady in a target parking lot accusing me of parking illegally in a handicapped parking spot, apparently she forgot to look at the license plate and thinks you can only have a placard for handicapped spots.  Not one to back down, I ever so kindly reminded her to make sure you check the license plates before you accuse people of illegal acts.  Icing on the cake.  Icing on the 3 cupcakes I ate tonight in honor of one of those days.  I've been thinking about a quote I found a while back that I love. We all have a choice on how we react to life, today I think I could have made a better choice and tomorrow I will remember that and definitely choose better. 
     Because of the conflicts and challenges we face in today’s world, I wish to suggest a single choice—a choice of peace and protection and a choice that is appropriate for all. That choice is faith. Be aware that faith is not a free gift given without thought, desire, or effort. It does not come as the dew falls from heaven. The Savior said, “Come unto me” (Matthew 11:28) and “Knock, and it shall be [given] you” (Matthew 7:7). These are action verbs—come, knock. They are choices. So I say, choose faith. Choose faith over doubt, choose faith over fear, choose faith over the unknown and the unseen, and choose faith over pessimism. - Richard C. Edgley

BFFs

     Lately, Nate & I have been chasing down parents in hospital hallways that have really cool wheelchairs and bonding with doctors and talking way past our appointment time.  It has been super hilarious.  But we are meeting some really good peoples. Buena gente as los Johnson would say. 
     Zoey is becoming ridiculously cute with Evey these days. The other night we caught her sneaking out of her bed and into our closet where Evey sleeps just to go play with her and talk to her.   These two made a serious pact long before we got here, just like Owen and Eli did.  I know the boys were best of friends just like Zoey and Evey were.  They promised one another to see each other through this mortal adventure.  I know that Nate & I made that same pact.  It's becoming more and more evident and it's such a blessing to witness.  It's the perfect eternal glimpse we are given in the middle of chaos. 

Working hard or hardly working

For the first time in a long time I'm feeling busy, busy, and more busy. The schedules are officially all over the place, coupled with no sleep, I'm left to wonder once again how I am even remembering to breathe (insert blonde joke here).

The Botox for Evey has finally worn off from the thanksgiving surgery and the bad news is Evey's torticollis is bad - like major bad; coupled with her 46 degree curvature scoliosis we've got the perfect storm. For you math majors, yes picture a 46 degree angle and then picture that angle on Evey's spine and that's how bad it is. We had an MRI last week to rule out a tethered spine and thankfully it came back clear which means we avoided immediate surgery, good news. When Evey had her head surgery back in Nov both the plastic surgeon and the neurosurgeon mentioned how even the bones in her head were misaligned and nothing was straight like it should be, even her soft spot was way off to the side. Which is leading us all to believe, structurally from the head down the neck and spine are a hot mess. For now, because they won't operate until at least a year old we are in therapy mode. We are in weekly occupational, feeding, and physical therapy. This is on top of all the doctors appointment and the two new specialists we added this week- endocrinologist and rehab specialist. My favorite part of it all is that Evey is so happy through all the poking, prodding and stretching. Everyone always comments on it too, I beam like a proud mama when everyone comments on how tough she is. It was my one hope for my daughters and I have two of the toughest girls I know in my presence.

Meanwhile back at the homestead, we had our semi-annual report at Owen's autism school and he is officially age level on everything but fine motor and cognitive skills. That is such a big deal from where we were even a year ago! We have officially found him a kindergarten and it is mainstream city for him. Eli has found a new preschool that hopefully loves him as much as he loves them. Zoey is jumping into the twos full force, and as you can see from the picture below she still has her peanut allergy. One of the boys touched her with peanut butter on their fingers and that was just the beginning of the swelling. Although, Zoey on Benadryl is oh so entertaining. Nate is being super husband/dad as usual. That's why this family of ours works - he's the rock and the glue and makes us laugh until we all pee our pants through all the craziness. If you need a pick-me-up ask him to do his downton abbey impressions and accent, it'll change your life.

Unsung Heroes

Last post was about the amazing people around us and supporting us.  As parents of Owen and Evey we often get the you must be very chosen and special parents and we get to revel in all the praise of raising two amazing special kiddos. And sometimes it's easy to get caught up in the hoopla, thankfully we're blessed to know that is all the Lord, all the time. There's no way that we can be functioning with the energy levels that we have on the amount of little sleep we have and will probably have for the rest of Evey's life.  Our daily prayers always include, "bless us with the energy we need to accomplish the things thou would have us do" - and that specific request is always answered.  And all while being off the sauce, aka the Diet Coke for months.  I do believe in miracles!!!

My lesson I learned last week is that I know Evey's surrounded by 3 very chosen spirits. While Nate and I are being blessed, I'm reminded that it is the siblings of these special spirits that are the unsung heroes.  They will have a true glimpse into the start and beginning of Evey's life and see it through a childs eyes.  They might be by her side long after we're gone (we hope).  It has been fascinating to watch them gather by her and want to play with her even though she can't move.  They bring her toys and Zoey is already playing dress up with her and not once have they pulled on her g-tube, which is amazing for a 4, 3, and almost 2 year old. While on our friday night date at a McDonalds playland we encountered an extremely special needs young boy playing there by himself.  I watched the other kids stare at him and ease their way around him, while our kids didn't even flinch at his differences.  In fact Owen was so interested in him trying to shoot a basketball that he become his ball boy and shagged all his balls for him.  Nate and I awed at this situation, when it hit us that our kids will never know what's normal and what's not so normal by the worlds' standards - to them Owen will always be Owie and Evey will always be Eves knees and on the flipside Eli will always be the bear and Zoey will always be Zoe's nose. What a blessing we hadn't even thought of in our new situation.   They're the fearsome foursome.  When Nate and I first got married we gave ourselves the nickname of  "the supreme team" - we obviously thought we were a big deal.  Well we've obviously been humbled and I can proudly say the title has been passed down.  We all know the supreme team is and always will be Owen, Eli, Zoey, and Evey.  Here's proof:

Secret Weapon

I always knew I was going to have some special needs kids, and Nate will tell you the same. Apparently I had many conversations about my future "special" children with friends and family long  before I was even married, most of which I forgot about thanks to my non-existent memory. So when Evey was born, I was sent many a message about those past conversations and how I must have been prepared for a long time for our families future.

So growing up whenever I would see a "special needs" kiddo with their families. I would always think how sweet for their little family to be blessed with a child like that in their home. And it is so sweet. The sweetest blessing one could ask for. What I have learned day after day is that I have a whole new respect for other special needs parents out there. What you don't see behind those sweet kiddos is how medically complex they are. How the parents spend hour upon hour calling insurance and doctors and making doctor visits and the therapies and the countless surgeries and the nightmare of the home health care supply company.  One of my favorite other Mom's I've met recently described it best when she said when she is out shopping for clothes, she pictures herself out in the doctor's office and hospital wearing those new clothes.  Hilarious, but oh so true. It is a full-time job that I had no idea even existed. Now when I am privileged to meet these other parents I try my best to give them a secret smile to let them know, I know how busy you are.

The other lesson I've learned this week is to never take for granted the support system we have from friends and family. Many people don't have what we have and I never undervalue our "secret weapon". We happen to have a "secret weapon" aka my sis-in-law Kara who my kids and I happen to adore as a mother and friend. She frees up a few hours in my week so I can make the doctors visits and the endless phone calls. It's an immeasurable gift that I wish everyone had in our situation. Moral of the story is Nate and I aren't super heroes. But with endless help from the Lord and lots of help from friends and family and especially our secret weapon, we are managing our new life the best we possibly can.  And it is so blessed. We are so grateful the Lord put those people in our lives.  No kind act is small or insignificant or goes unnoticed.  I'll say it again - we are blessed beyond measure.

Humor

Look who thinks Mom's sneezing is hilarious.  First laughs we've gotten out of this little lady and I'm already seriously impressed with her sense of humor.  Only Mom being sick would make her laugh - she'll fit right in with this family.

Evolution

Last night, Nate and I were talking about how last year we were saying good riddance to 2011, thankfully this year we were saying a fond farewell to 2012. It has been so good to us in so many ways and we hope 2013 is equally as amazing. If there's one thing we've learned this year it is perspective. Life can be as easy or as hard as you want it to be depending on your perspective. This year we are so thankful for eternal perspective. Perspective that makes even the hardest days easy.

The following pictures sum up 2012. It's the raw uncut evolution of trying to get a family picture. We are the most dysfunctional, out of control, fun little family and I hope it always stays that way. Bring it on 2013, we are ready!

Rollin'

Just when we received some dissapointing news that Evey's scoliosis is a lot worse than we all suspected; she reminds us of how tough she is. "Like a boss" as my 14 year old nephew would wisely say.  This little girl is constantly reminding us not to worry about her, she's so strong and will prevail through it all.  Seven months old and I never thought I'd be this excited about a child rolling.  You go girl!

Ladies

A little update on our Eves knees seeing as how I've been distracted with the chaos of Zoey deciding to potty train herself and climb out of her crib all within the same week. That girl's eagerness to be an adult will be the death of me. And yes my Mom does laugh way too loud when I call to vent about Zoey, oh sweet Karma. Maybe she'll finally settle down when she's 31 like I have.

So on to our other favorite daughter. Evey is still recovering from surgery, her head looks amazing, but we have noticed her eyes are crossing way more now that she has a round head. She's almost 7 months old and is in the 40th percentile for height and 20th for weight. She is still fed all through her g-tube and we hope to get her over her constant colds so we can try and start some oral feeds. The good news is that the desire to suck is there and shes taking an affinity to sucking on her swaddle blankets. Health wise she seems to have one healthy week and then one sick week and then repeats the cycle. We are working on her holding her head up and helping her straighten out her neck. She can hold her head up for a few seconds at a time and then she flops it back down cause she gets so tired. It's bizarre to think that Zoey was crawling at this point in life and we are still trying to get Evey strong enough to hold her head up while we're holding her. There is also the nice part of getting to enjoy this baby mode for a long time that always flew by way too fast with the other kids. We also have a new specialist on board, a pediatric orthopedist who we'll meet with after christmas to address Eves scoliosis that seems to be pretty severe says all the other docs that look at her, so it'll be nice to see what the plan is to help her down the road. Other than that she's still the sweetest, happiest baby that we could ever ask for. When the other kids are jumping all around her and screaming she usually does her little giggle because apparently the fact that we are a 6-man circus is funny to her. She really must have knew exactly what she was coming to. With all the craziness around us in this mortal world, it's a huge blessing to have Evey as a reminder that all things are eternal and that the end goal is returning to a loving Heavenly Father arms.

Las Vegas

I've decided parenting is a lot like gambling in Las Vegas. I've used this analogy for a few years and I've found it to be true over and over again.

Taking your kids out in public wherever it is, is like going to Vegas. You go and you either win big or lose big. Most of the time you lose though, the odds are definitely not in your favor. If the kids behave perfectly, everybody admires you, the cashier tells you how well-behaved your kids are and you smile and nod while thinking you have no idea what a rarity this is. That is a big win in my parenting
play book.

Or what usually happens is you go out, somebody loses it and fights ensue and then yelling and screaming and then we are hastily exiting the public eye, undoubtedly with a screaming/flailing toddler slung over our back while pushing a stroller or grocery cart with most likely another crying child. Big time lose.

Here's the thing, no matter what the outcome, I can't help but keep trying it, just like Las Vegas. Good thing I don't for real gamble because I already have enough parental gambling in my life and I know all about odds.

Here's some of the moments we've been having lately that make me forget all about the big losses. And yes our children are wearing completely mismatched snow clothes dug out of nana and papas snow clothes bin. I'm slowly realizing that the kids get bigger each year and that means I have to invest in new snow clothes every year. Parenting fail.

Mama, Moms, Mother

     I never grew up dreaming of my future husband and children.  Don't get me wrong, I knew it was in the cards for me; it just wasn't on my radar for a long, long time.  I don't think it was in my DNA to think about marriage and motherhood, but thankfully I had a strong dose of nurture that helped dominate my tough nature.  The nurture came in the form of watching my parents who actually liked one another, and truly epitomized the "best friends" concept.   It also came from having 7 brothers and sisters, and, for better or for worse, there was always someone at home to play or fight with: an invaluable gift.  Eventually, I also realized that I was a daughter of God, and with that knowledge came some major responsibility to a future husband and kids.
     So, motherhood came in a two-fold epiphany.  When our firstborn Owen arrived 6 weeks premature, I was completely unprepared for the newborn intensive care unit, aka the NICU.  On the ninth day of Owen being in the NICU, I had a complete and full meltdown. I had had enough of being at home without our son, and was sick of staying up all night crying and trying to pump, while wanting to jump off a bridge because my hormones were practically yelling at me by the second about how wrong it was to have just had a baby and to not have him home with us. So, I sobbed and cried and wailed and had a glorious temper tantrum. It was awesome.  And, Nate was there to pick up the pieces (also within that motherhood epiphany was the 'holy moley I really love and need Nate, forever' epiphany).
     So, the mama bear was officially born, and I waltzed right into that NICU with Nate, my partner in crime, and demanded that they let us bottle feed Owen, and let him go home, or we would take him out ourselves. I call that the '9th day motherhood' epiphany.  From that moment on, I knew that this was it: I was in it, I liked it, and I could do this mom thing, and I'd be darned if I was going to let some NICU nurses hold my son hostage.
     As you can imagine, the second epiphany came 4 years later, almost to the date, with the arrival of Evey.  Evey was the full-blown, 'you are commited to being a mom and you'll be doing this for the rest of your life' epiphany, and I rolled with it from the second she was born.  It was an a-ha moment of Evey being the missing puzzle piece of fulfilling my life's work and purpose.

     I'm slowly learning in my life that the greatest blessings I've received are the ones I never knew I wanted to begin with.  Thank you forever Owen, Eli, Zoey & Evey.