Getting to know Miss Everleigh

I had a sad realization this past week. My baby isn't a baby anymore-she is a toddler.

She used to be so tiny!

She's my big girl now! At least she still enjoys being swaddled.

She has changed so much in just the past 2 months! I really wish all of you could meet her, hold her, and enjoy the wonderful little person that she is! Unfortunately, due to her health constraints, we are not traveling much these days and can't get out to see everyone like we want to.  But we are hoping to change that very soon! In the mean time, here are some fun little updates on Miss Everleigh.

Snoozing in the rocking chair
Everleigh at 18 months old
23 lbs. 4 oz.
32 in. long

Things Everleigh loves:

-Walks in the stroller
-Play dates with the cousins
-Playing on the playground with her friends
-Eating wood chips by the swing set
-Strawberries, chocolate, honey, & spinach
-Riding in the shopping cart at the store (she lays down flat in the basket w/ a blanket and squish pillow)
-Running errands with Mommy
-Crinkling paper
 -Singing along to the "Frozen" Soundtrack
-Running her fingers through dry rice
-Eebees & Mickey Mouse Clubhouse
-Dancing to the "Hot Dog" Dance
-Bouncing in the bouncy seat
-Rocking in her rocking chair
-Talking on the phone

Things Everleigh hates:

-Play-doh
-Being put down for bedtime
-Having her hair put in ponytails
-Sharing her toys
-Being inside all day
-Visiting the doctor and/or hospital
-Getting her nose sucked out

Milestones:

Everleigh has just started to reach for toys! It happened one week just after Nate and I had a conversation about how we were concerned that she may never learn to use her arms. During physical therapy, her therapist propped up her arms (to limit the effect of gravity and weight on her limited muscle strength) and, all of the sudden, Everleigh quacked her Quack stick on her belly. Then she grabbed her favorite ball. Then she reached up, grabbed the rings on her baby gym, and tugged them for about 5 minutes. I cried!! It was such a miracle, and Everleigh looked so happy with herself. We are so proud of her! Videos to follow in future posts.  :)

Everleigh has also added a new phrase to her vocabulary: "Uh-huh". So cute! She says it all the time when she wants something. That brings her regular vocabulary up to 5 regular words (Ya, no, Mom, Da da, uh-huh) and 6 words she has only said once (hi, bye, wow, done, more, stop). It's funny though, she still refuses to say words on command and refuses to talk around people she doesn't know. But at home she is a little chatter box! I promise we aren't lying, she really does talk!

Miss Evey is now sleeping through the night every night. Hooray for everyone getting 10 hours of sleep! She has been so much more energetic and has been using her limbs so much more since she started getting adequate sleep.

Medical Updates:

Everleigh is now completely off formula and on a blended diet. This means she eats whole foods, just like every other child her age, just completely pureed and pushed through her tube. She eats small amounts by mouth and absolutely loves it, but tires easily and chokes, so we put the rest through her tube. Since switching to the blended diet, we have noticed that her reflux has almost disappeared, she is sleeping through the night, requires almost no suctioning, has a greatly decreased oxygen need, and has enjoyed better health and wellness with fewer illnesses. She does, however, have several food allergies and intolerances. So far, we have discovered that she is lactose intolerant, intolerant to grapes, green beans, and prunes, and has moderate to severe allergies to nuts, soy, and quinoa. In fact, she cannot have any processed food outside of dairy products because of how sensitive her little system is! So Mommy is a short order cook and the little Princess enjoys 5 gourmet meals a day, plus snacks. But no complaints here, we are just so excited by the changes in her health that we are happy to cook her anything her heart desires. :)


Cute story for the month:

BFFs-Abbey and Evey

Everleigh has a sweet little best friend named Abbey who LOVES to play with her and tries pick her up. However, Evey is now officially heavier and the same height as Abbey, so Abbey doesn't have the strength to get her off the ground. So, instead, Abbey likes to have cuddle sessions with Evey and they play with toys on the floor. I have been so inspired by Abbey's Christ like love for Evey, we are so blessed to have such wonderful friends and neighbors.

That's all for right now! This little family keeps moving along, and we cant wait for what the future holds for us. Thanks for reading!

 Love,
-The Knightons

Adventures in the rain-A different kind of courage and love 2/3/2014

 With the beginning of the new year, I have decided to reopen the blog to the public. After many technical struggles associated with privatizing the blog, and after finding great strength and inspiration from reading the blogs of other families, it seemed like it was time to share our family's story.

As a warning to new readers, my blog posts trend towards being long and intensely emotional at times, so impatient readers and sensitive hearts beware. As a tip to seasoned followers, I have gone through every post, attempted to correct formatting issues, and have added lots of new photos from 2011-present. Feel free to read back a ways and check out the updates!

If I knew what was coming and had the choice to do it all again, I would in a heartbeat. I love you forever my potato <3

When I began this blog in 2011, I got the inspiration for the name and theme of the blog from a plaque that still hangs on our wall. It reads, "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." It was a motto that Nate's family had used for a long time, one that we had decided to adopt for our own family. The first year of our marriage was very easy. When I first started writing this blog, our life together was naive, simple and blissful. We had both completed our undergraduate education, had great jobs, and enjoyed a life of ease and comfort. To me, the plaque at that time represented a romantic notion of sorts, a beautiful idea that I thankfully didn't have to apply to my life. Nate and I had both lived through very rough times, but together we seemed invincible. But as the saying goes, when it rains it pours. While Everleigh's near death-experience was by far the most traumatic part of 2013, we faced other hardships as well.

Our finances were also an intense struggle, and still are. Everleigh's medical care has cost well over a million dollars, and while we have enjoyed dual insurance coverage, we still payed about $22,000 out of pocket in 2013 to give her the care she needed. Our 2007 Ford Edge, which we still owe on, decided to blow the transmission and battery in the course of 2 months, costing an additional $5,000 to repair. We were faced with eviction on 2 separate occasions, received denials for school funding, and have fought various insurance companies to keep Everleigh's  medical coverage going. On top of the usual starving student finance issues and struggles with finding employment, our wallets have been very thin and our hearts weary. But we have been so blessed to have our every need met-the Lord truly has a way of coming through and helping us get by in unexpected ways. Once we received an enormous tax return, another time we received refunds from over payments on bills, or were given food from family and friends, or we somehow managed to sell large items in storage. Someone is definitely watching out for us!

 Nate and I, after putting ourselves and our marriage on hold, also had a lot of work to do in the personal aspects of our lives. We started dating again, talking like friends again, and began taking care of ourselves and each other. With some growing pains, I feel I can say we emerged from the spring and summer as a new couple. We were no longer a honeymoon couple, naive and untested. We have a stronger, deeper love than we did before-one tested and refined by pain and sacrifice, and strengthened by a commitment that has lasted through difficult times. I am so grateful for this, I wouldn't want anyone else to be by my side. Nate is a loving and dedicated father, husband, and friend. He would do anything for Evey and I, and we would do anything for him. We are not a perfect couple, and certainly still have plenty of work to do, but I am eternally grateful for what the past two years have made us.

Our experiences in 2012 and 2013 taught us a lot about ourselves and each other.  The plaque and all it represents have gone from being an idea to a way of life. At one time we would say to each other, "We can smile and laugh when things are easy again." But as time has gone by, we have realized that instead of waiting, we can try to be happy even when tough things happen. It's a big task at times! It is as much a choice as a feeling, and sometimes the choice starts with something really small.

"I will get out of bed today."

"I will try to take time for myself today."

"I will smile and laugh at least once today."

But something we have learned is that as a family, our love and resolve to care for one another is invincible. We are not invincible to hard time and struggles, and our lives will likely always be a mix of hardship and joy. But we are learning to dance in the rain and are finding our new normal. We are so blessed to have each other, and we wouldn't change a thing. This little family will keep moving forward, no matter what comes our way.

Keep Moving Forward

So here's to 2014 and whatever it may bring, the blessings, the hardships, the opportunities to learn and grow, and everything in between. Hope our readers, new and returning, enjoy following our family's story.

As the Prophet Gordon B. Hinkley would say, "Come what may and love it".

-Love, the Knightons

Be careful what you pray for-A story from the Bucket List 2/3/2014

Here's an incredible and funny but true story from this past summer. It is one we share often, so I felt I should record it here as well for future laughs.

Allow me to briefly preface this story with a couple small facts. First, as a family we absolutely love camping and the outdoors! We go as often as we can. Despite this love of the outdoors, I have always had a deep, irrational, and persistent fear of bears, mountain lions, and wolves. I've never had an encounter with any of these animals. My love of camping and hiking really helps me overcome these fears, but it does make sleeping at night in the tent difficult for me. Second, Everleigh was on continuous feeds over the summer, which means that her feeding pump constantly pumped tiny amounts of food into her belly with no breaks. She was on the pump at all times. This meant that we would have to break one of the cardinal rules of camping-no food or scented items in the tent. It can attract animals. Her formula, though hardly fragrant, does have a distinct odor. Third, we knew that keeping Everleigh on the pump at night while camping would be risky, but we had been camping earlier in the summer and had no trouble. So, we said a special prayer asking for protection, felt like everything would be alright, and went on our way.

We didn't have a reservation, but decided the night before that we wanted to go camping one more time before school started and the weather cooled off. Nate drove up and down the canyons early Friday morning seeing if there were any available campsites. Unfortunately, he came home and told us all the campgrounds were full. An hour later, Nate got a call from the Spruces Campgrounds in Big Cottonwood Canyon-someone had cancelled their reservation and, if we could get there in an hour, it was ours! We threw everything in the car and drove up the canyon just in time to claim our campsite. It was just beautiful! The site was large, shaded by pine trees, and bordered by a small creek and the wooded mountain side. From the west side of the site, there was majestic view looking onto the mountains and farther into the canyon. We pitched our tent along the creek bed (probably should have thought that through, animals like to come and drink from the creek at night) and started getting a fire and dinner ready.

Asleep, around the campfire, after a tasty dinner

The view of the canyon from our campsite

At about 6:00pm, two moose came to the creek to drink, a Mother and her yearling calf. They stayed on the opposite side of the creek, but seemed very comfortable despite our presence. This is highly unusual behavior for a mother moose, they are usually highly protective of their calves and would not be so close and comfortable around people. We thought that after the moose enjoyed a drink from the creek, they would be on their way back onto the mountainside. But they stayed until dark and showed no signs of leaving.  People from all over the campground came by our campsite and asked if they could come in, just for a moment, with their families so they could see the moose. The commotion lasted until nightfall when the moose were no longer as visible. Again, we believed that now the moose would leave and make their beds in the woods nearby. When we had finished roasting marshmallows, we looked around and no longer saw them. Believing the moose had moved on, we prepared for bed and cleaned up the campsite. Nate's sister, Leah, and I made a trip to the restrooms. On our way down the path, Leah shined her light into the lightly wooded path ahead, and we saw two sets of eyes and froze. It was the two moose, bedded down not 50 feet away from our campsite, lightly camouflaged by the nearby brush. Again, they showed no signs of agitation and made no effort to leave their spot. Leah and I cautiously headed back to the campsite and joked about how funny it would be to have moose for neighbors.

The view of the moose from our tent in the early evening

Grandpa getting a little bit too close for a photo :)

The canyon was beautiful!

Momma watching her yearling bull calf

Another photo from the tent

We later named them Wilma and Steve, the protector moose

Well, at 2:00am Nate and I awoke to the sound of a horrific scream somewhere deeper in the canyon, followed by the howling and calling of a coyote pack-a fresh kill. It was terrifying! They were close by, but not in the campgrounds. Nate went back to sleep, but I couldn't-my imagination was getting the best of me and I was having a hard time shaking it off. That's when I noticed it-the wall of the tent was moving, being nuzzled by something on the other side. The intruder seemed interested in a particular object that was leaning against the tent wall-Everleigh's food pump bag. Then I heard a low, guttural growl. Oh crap. I couldn't move for a moment-I was petrified. Then, I very slowly moved Everleigh to the center of the tent, between Nate and myself. I woke Nate and whispered to him that something was outside. He listened for a moment, then, armed with a Maglite and hunting knife, decided to go outside and see what was going on. I prayed for our family and cradled the baby in terror.

Nate came back into the tent a few moments later, laughing, and said with a smile on his face, "Its just the moose, they are sleeping next to the tent! I knew I punched something hard, but I thought it was a dream!"

Apparently the Mother moose had been laying with her back against the tent wall, and Nate had been cuddling with her through the tent wall for the most of the night. The nudging? The yearling calf, attracted to the scent of milk, had been investigating the baby's pump bag in hopes of getting a treat. In great relief, we fell asleep again, surrounded by our "Guard Moose". Everleigh, naturally, slept through the entire experience. When Nate woke up at 6:30am to get the fire started, the moose had moved to the edge of the campsite to graze. When Everleigh and I woke up at 7:30am, the moose had moved up the mountain side, just barely still in sight. In 15 minutes, they were gone and didn't come back. We spent the entire morning laughing and reminiscing about the past night's events. We still refer to this experience as, "A visit from Evey's guard moose" or "that one time Nate spooned a wild moose." Ahh, good times! The camping trip really rejuvenated us after a really rough spring and somehow, helped us laugh again and gave us one of many opportunities for joy and happiness to renter our lives.

Nate says good morning to our moose
"I don't always play with wild animals, but when I do-I spoon wild moose. I am, the most interesting dad in the world"

The moral of the story? Be careful what you pray for, because you just might get it. God sent Jonah a whale, and he sent us.....a moose family. We prayed for protection from wild animals, and indeed no predators in the area would have dared attacks us while surrounded by a mother moose and her calf. I have had people tell me they think this is a tall tale, and really if someone else had told me this story I may not have believed them. But it really happened, and while it was a neat experience, I doubt it will ever happen again. I'm not sure I want it to. :)

Thanks for keeping up with the Knightons!

The Bucket List 01/31/2014

Well, I've talked about the tough things in my past posts, now it's time to share some of the wonderful memories that 2013 brought our family. We started the bucket list as a way to keep our promise to Everleigh, which was to give her the very best life possible. Before her traumatic experience in the spring, we completely sheltered Everleigh. We wanted to protect her from illness, overstimulation, and the cruelty that sometimes surrounds people with disabilities who live in a world that doesn't always understand them. But when she survived to the summer, we decided it was time to let her live! We are still very careful, but now we strive to give her as many meaningful experiences as she can tolerate.

Evey's bucket list only has one rule: when you cross something off, you have to add something new to the list as well. That way, there is always something to live for and to look forward to.

So, what do you do when you get a second chance at life?

1) Go to church for the first time

2) Read lots of books and sneak into Mommy and daddy's bed

3) Throw an impromptu pool party

Chillin'

4) Make some best friends-She has 2. This is big Everly :)

Everleigh and her other best friend Abbey :)

5) Walk with dinosaurs

Oh dinosaurs!

6) Give the best baby snuggles ever!

7) Play in the snow for a minute or two (She was definitely not amused)

8) Go Camping

She really loved sleeping in the tent!

Just waking up from a good night's rest

9) Go hiking!

Definitely our girl-she loves the outdoors!

10) Hug a moose!

11) Adopt a pet damsel fly named Cosmo

12) Go to the zoo
In the Aquarium escaping the hot afternoon. Poor girl got so hot! We had to go home early.

Everleigh's favorite exhibit (pictured) was the big cats. She loves tigers!

13) Take lots of naps

14) Destroy a chocolate ice cream bar

15) Cheer on our favorite team on game day

16) Take random photos in a cute crib at Target

17) Learn to stand during physical therapy (click to watch the clip!)

18) Learn to sit up in physical therapy (click to watch the clip!)

19) Embrace your inner princess

20) Ride a rocking horse named Ponyella

21) Celebrate a very special first birthday

At the Sweet Tooth Fairy Shoppe, Everleigh's favorite store, to pick out a birthday cupcake

Made her birthday cupcakes myself! (Ok, I was supervised by a sweet and experienced friend. But I was so proud!)

Digging into her Sweet tooth Fairy Birthday Cupcake!

Peanutbutter Cup-her favorite. Can you tell?

The cupcake coma sets in

22) Play in your ball pit

23) Grow gorgeous red, curly locks; make everyone jealous

24) Celebrate the holidays at home! What a ham!

Precious pumpkin

She dressed up as a bumble bee as well-so sweet!

Too tired for Trick-or-treating, but she almost made it!

Everleigh's Christmas photo 2013

Decorating the tree with Mommy-the lights are always her favorite part of the tree

Playing with the O-Ball Santa brought her

Look Mommy and Daddy, Santa came!

She was very anxious to open her presents

Bring on the presents, Mom and Dad!

Happy girl

Modeling her new hat from Grandma C.

25) Cherish every moment, life is too short!

These are just a few of the many things we did this year! That girl just melts my heart! I am so grateful for every moment we have with her.

Here are some other things on Evey's bucket list:

-Visit extended family in California and Canada
-Visit the National Parks
-Go sledding
-Build a snowman and have a snowball fight
-Go geocaching
-Go to the beach
-Get a service dog
-Meet someone famous
-See a movie in the theater
-Learn to Ski
-Travel internationally
-Go trick-or-treating
-Pull an epic prank
-Ride a horse
-Have a sleepover with the cousins
-Take Ballet & ice skating lessons
-Take Piano lessons
-Go to Disneyland
-Pet a dolphin
-Attend a classical music concert
-Attend a BYU football game
-Go to college
-Sleep in a treehouse
-Give President Monson a high-five
-Learn a new language

We are always crossing off and adding to the list! We are so excited to see what new experiences await her this year. We do love adventures (well, the nice ones)!

-Love, Nate, Stephanie, & Everleigh