Tuesday, August 12, 2014

Rods and Tubes

    I really need to get better at keeping up with this, at the very least for posterity's sake.  Next week, Evey and I will be left alone for the first time in our entire lives - the older 3 will all be attending our beloved American Heritage School together - what a bittersweet day.  So, there will be much more time to blog, work with Nate, and hopefully clean.  Maybe in that order, maybe not.
     On a short note, Evey had yet another spinal expansion surgery.  She handled it like a champ; we still don't take that for granted.   She came out 2 inches taller, a little mad at me, but mostly hungry.  Which brings me to what I've been wanting to write about for a while.  Evey's tube feeding weaning success story.

   
   
    Outside of the medical world, the tube feeding phenomenon is a little hard to understand.  There are several different reasons why a child has to be tube-fed; Evey's was apparent from her first few weeks of life.  From the very beginning, Evey didn't have the proper throat function or construction to swallow food.  Most of what she drank from her bottle ended up right in her lungs, which ended up turning into pneumonia, which ended up with her going straight to the PICU at Primary Children's Hospital, which is where she lived for what seemed like the whole first year of her life.
    By year two, she had received over a dozen surgeries, she was getting stronger, and was able to take bites of food.  However, most doctors, nutritionists, and dieticians usually don't have a clear-cut 'weaning off the tube plan' because every child is different, and quite frankly nobody wants to get sued by telling a parent with a medically fragile child to wean their kid off their main food source ... trust me, I get that.  So we were doing bites here and there, while supplementing with formula through her tube.  In return, Evey's GI tract got really angry at her.  She started vomiting more and we got so frustrated we just wanted to return to the formula altogether.
    As a last ditch effort, I decided to stop in at a different dieticians office at the hospital while we were there for a surgery, and this awesome, bold dietician told me to just go try and feed Evey by mouth all during the day and make up for what she wasn't eating through formula at night.  We tried that for a week and it went pretty well, but she still wasn't getting enough calories during the day.  She would barely drink anything throughout the day because the formula she was getting at night kept her full and not thirsty, and she still had vomiting issues.  So one Sunday night after much frustration and prayers over the issue, I looked at Nate and told him, I'm just going to cold turkey her for 3 days.  I'll count her calories, keep a close eye on her, and if she loses weight and gets dehydrated I'll put her right back on the tube feeds.  My mothering instinct was telling me to go for it.  (Disclaimer: all of this which is not medically advised - I am by no means a doctor, nurse, or medical professional - even though I pretend to be a lot of the time) but hey a mother's gotta do what a mother's gotta do.
  
   So after 3 long, incredibly stressful days of counting calories and layering whole milk with heavy whipping cream, our girl did it!  She conquered the tube beast, and decided that food is for her and she wanted to be a part of the gluttonous party.  We are officially 5 weeks tube-free and one surgery out and she has gained a pound!  She has not gained this much weight this quickly in a long time.  Needless to say, we are so happy.  We are still working hard staying on top of her calories, but we are officially out of the woods.  She now has an incredible appetite and is a legitly a Johnson and gets full on hangry. (hungy/angry)
    All of the stars had to align for a successful wean and by no means is it this easy and advisable for everyone (more disclaimers), but we are so grateful and so happy to have some typical toddler stuff going on with our 2 year old lady who is anything but typical.  We love you Evey, especially your older sister Zoey, who now follows you around trying to feed you everything because she's so happy that you can eat with her.  And as usual, Nate and I cannot take credit for Evey's huge accomplishments.  Her spirit is strong and we continue to have amazing support and love both on this side of Earth and from her peeps on the other side.  We are blessed.

Wednesday, July 2, 2014

I believe in miracles

   Miracles are happening around the Johnson home.  I know miracles are happening every day around the house, but some days I don't take the time to recognize them, or other times I forget that miracles still happen even when there's hard work involved.  So maybe that's the biggest lesson here, the fact that you have to work really hard to see some results doesn't negate the fact that it's a complete blessing and miracle given to our family.  On that deep thoughts note, here's the monthly break down.
    Bad news after Evey's ear surgery, and replacing her ear tubes for the third time: we found out her hearing is actually getting worse.  Everyone's thinking she will go completely deaf in both ears at this rate.  Good news is she can wear her hearing aids and that will help as long as she doesn't grow more polyps around her ear drum.  Also, we are working on Sign Language, which will also be a process because her fine motor movement is a hot mess.  So basically her signs all look like vigorous clapping for now, but it still is undeniably adorable.  This might not be bad news though - in our house, hearing loss could just be a blessing in disguise.  Also, Evey still loves when I sing to her, even though I'm tone deaf, which is also a blessing of her being deaf.  Our glass is definitely half full.
    The very exciting news that I've been keeping kind of hush about for fear of jinxing it is that she has been 100% off the feeding tube for over a week now.  She did it!!!
     She's been taking bites of food here and there, and she also learned how to drink from a straw a couple of weeks ago.  I took the plunge to wean her a couple of weeks ago in a kind of controversial way.
     It happened so quickly, and it is seriously unheard of to wean a kid off their feeding tube in just a few weeks time.  She has actually gained a little weight for the first time in a long time, and is getting all of her daily calories in and through drink & food.  It has definitely been hard work, but this is one miracle we cannot deny.  I'm going to write more about what we did with her wean in the next blog post for my other tubie mamas out there.  For now I'll keep this brief.  Well, Cally brief that is.
    Last, she is officially bearing weight and standing while her hands are being held.  She'll even take steps in her walker without her seat (which we've removed) and when you hold her hands.  It is so awesome, and I'm so proud of her.
     I asked one of her physical therapists the other day what she'd look like when she walked and what she has seen with other spinal rod patients.  She told me that she didn't want to say this when we first met, but that she's never seen someone have the VEPTR procedure that young and walk, so Evey is the first she has seen.  She pretty much walks like a ballerina, practically on her toes and with her feet out and it looks so wrong and painful, but she does better when we remember to put her ankle braces on.  She hates crawling with the ankle braces on, so I hate having them on all day when she's still crawling around.  I need to get better about that - I am human after all.
     The amazing thing about Evey is she did all of this within a month.  She is an 'all or nothing' type of girl - her sense of will is so apparent to everyone around her.  There's this giant spirit that wants to be a part of the team, and not even her broken body will stop her.
     I know none of this would be possible without Evey's people both here and on the other side.  They rally for her and fight for her and give her the tenacity to keep on going, even when it seems like her body is against her.  The last 4 weeks have been such hard work for me, which I don't usually say, but at the end of the day, my burden has been made very light, by those same people and angels.     
     I'm always so grateful to mooch off her spirit and bask in her light and those that surround her and by default, me.  I'm learning that the more I stick to the light, the more it makes the bumps so miniscule compared to the miracles.  We weren't even fazed with the news of her hearing, because we were to busy riding on the miracle, grateful train.  God is so good to our family and I'm so grateful He continues to pour His light down upon us.
     We are blessed.

Wednesday, June 4, 2014

Two years wiser with two perfect gifts

    I think we are all two years wiser with Evey's second birthday.  April and May were filled with highs and lows.  A few of Evey's lows caught me off guard because we've had a pretty steady last few months, but it was a good reminder never to be too surprised.  We sorted out her hearing and had some polyps removed in her ears and her third set of tubes placed and since her surgery she has been so much happier, hooray!  Hopefully she can start to wear her hearing aids again and get some speech back.   We will address the heart stuff with the cardio next month.
     In amazing news, today, for the first time, Evey ate purely by mouth from sun up to sun down.  We are blending all her meals and she is taking some liquid through a straw cup.  It is major work, but I finally decided to take the plunge since she seems ready.  We are going to make up any calories she doesn't get during the day on the pump at night.  It is such a big deal for us and her, a huge deal that she's ready and is taking bites and drinking through a straw, I'm so proud of her.
    But I digress back to the 2 best gifts we could have got for her birthday.  I heard about a non-profit called Icing Smiles a while back.  They make amazing cakes for sick kids and other kids with life-long illnesses.  They contacted a local baking company to make Evey's 2nd birthday cake for us.  The woman, Turia, with Sugar Kisses Cakes donated the most amazing Mickey Mouse cake for Evey for her birthday.   The cake was amazing and so delicious.  I'm still so blown away by kind and generous people that take the time out of their busy lives to pay it forward.  Turia was amazing and we will never forget her kindness and I'll never forget how happy Evey was when she saw her Mickey cake.
    The second birthday miracle occurred the night before Evey's birthday.  Evey had surgery the day before her birthday and it was a long day with a late night.  I headed over to Walmart late at night to pick up some balloons, because we cannot not have birthday balloons at our house.  When I got there,   I noticed another woman also waiting in the back for balloons.  It became clear that they didn't have anyone on staff late at night that knew how to work the helium tank.  We both waited 20 minutes and we casually started to talk about all the special needs employees we saw working that night.  I then told her a little about Evey and how we wonder what her future will look like, and if she will ever have a job.  We talked about family, and our celebrations that required balloons, and finally, 45 minutes later, the woman got and paid for her balloons, and went on her way, and it was my turn to wait to get my balloons.  After an hour fiasco of waiting for balloons, I finally got mine and went to the register to pay.  The employee working then told me that the woman had already paid for my balloons.  I was blown away and immediately started to cry when I heard of her random act of kindness.  A  stranger turned friend - buying Evey's birthday balloons for her - whom we will never forget.
    We are so blessed because of Evey.  I think of all the people we would have never known if it weren't for her.  I think of all the amazing doctors, therapists, and medical team that support us and her and make our lives so much easier.  We have so many different friends that are parents of other "special" kiddos that have enriched our lives and made us all the better just by having known them.  The random strangers that are in and out of our lives, but leave lasting impressions.  We are surrounded by beautiful people that always remind us that Heavenly Father loves us and that he especially loves Evey.  These last 2 years have been the greatest gift to our family and I wouldn't trade them, not even during the lowest lows, for anything in the world.  Thank you Evey lady, for being the perfect example, and for infinitely blessing our lives.  And thank you to our loving Heavenly Father, for letting us watch over this most precious spirit for these last 2 years and the many more to come.  We are blessed.

         Turia from sugar kisses cakes


          Evey's magical bday balloons




Tuesday, April 22, 2014

A hospital dream

Dear Eli,

It was almost 6 years ago that your Dad and I were in the hospital having your big brother, Owen.  Owen was just born and we spent our first night in the hospital checking on your premature brother in the NICU.  The next morning, your Dad told me a dream he had about you.  He said that Owen was just a little one year old stumbling around and he saw Owen walk up to a little baby boy in the corner of our living room.  Your Dad knew that you were anxious to get here to be with your brother. I was a little shocked about the dream, because Owen was just 1 day old, but true to form, 10.5 months later you came to join our family.

Eli, we love you so much.  You are still our bear.  You are a bruiser of a boy and are fiercely defensive of anyone messing with your brother and sisters.  You always call Zoey and Owen, my sister and my brother.  When things get too serious around the house, you start yelling your made-up words to get a laugh out of everyone.  You're always looking for the humor in everything, just like your Dad.  I love how you have an opinion and how you know what you want, even as a 5 year old.  You also have some special gifts, that few people see under your big boy exterior.  You are secretly super smart, you love to learn, and at the end of the day, it's really important that your friends behave in church and at school.  You always have a perfect memory.  You remember places that we went to years ago, and you'll hold us to any promises we've made from weeks before.

Elijah, you'll always have a special place in my heart, because you're just like your Dad.  And I happen to love your Dad and think he's the greatest guy there is, so naturally I am loving watching you grow up and figure this life thing out.  I'm so impressed with you and I hope you know how blessed you've been with all the gifts and talents the Lord has given you.  Remember how loved you are and how unique you are and you'll do amazing things now and in the future.  We love you always Eli bear!

Love,
Mom and Dad






Tuesday, April 15, 2014

Roses

    Ever since Evey's birth, we have constantly been witness to miracle after miracle and have encountered some of the most amazing people that have been put throughout our Family's journey.  In the last 2 years, I have seen our Heavenly Father's most perfect love and seen the spirit work through complete strangers.  Last week, I had another one of those moments, one of those acts that you know could only happen because of the sheer love our Heavenly Father has for each one of his children on earth.  And it is all because of some roses.
    Last Friday night, Nate and I were out with Evey on another one of our "date" nights.  We needed to stop off at the grocery store before picking up the other 3 kids.  At this point, it had gotten late, and Evey was done and had turned into cranky pants (my kids hate when I call them cranky pants).  We were checking out at Trader Joe's and there was a nice older, Asian woman, with a faint Australian accent checking us out.  She saw Evey and walked around to say hello.  Needless to say Evey wasn't the happiest and started screaming, so Nate picked her up and went to the car, so I could check out.  The nice lady saw Evey's feeding tube as Nate was leaving and proceeded to ask me about Evey.   Truth be told, I prefer when people ask about her as oppose to just stare or make some assumptive comment.
      So, I proceeded to tell her about Evey's syndrome and what it means, and then she told me she had a 33 year old daughter who was Autistic.  She went on to tell me what she sacrificed to make sure her daughter had the best life she could give and I told her, she was obviously an incredible Mom.  She ever so kindly, returned the compliment to me, and said, "I can tell you are a really good Mom, too."  In the middle of checking out, she asked me if she could give me a hug from one Mom to another, and I said sure.  As we embraced, it felt like I was getting a hug from my Heavenly Father.  I felt total peace and immediately started to weep as she hugged me.  We pulled away, and she had tears in her eyes as well.  She then told me to stay there and she ran over to the flower section and brought me a bouquet of roses.  She told me she wanted to give these to me and bought them for me.  I paid for my bill, asked her for one more hug, and told her I would never forget this for the rest of my life.  As I walked out, I silently said a prayer of thanks for this kind woman, and for an ever-loving Heavenly Father that is constantly reminding me that he is here, that he lives, and that we are his children. 
    I have had so many incredible moments like this in Evey's short 2 years, and I remember each and every one of them in exact detail.  The majority of these people I will never see again in this life, but I can't wait to see them in the next and to embrace them again and thank them for blessing our temporal lives.  More importantly, this kind woman, reminded me to be that person for someone else.  Be that person that gives a hug, that buys a stranger a bouquet of flowers, and that serves a brother and sister with Heavenly Father's perfect love. 
    We are blessed.  

Monday, March 31, 2014

Go Big

    I realize it has been a while.  I think I've inhaled a lot of paint fumes this last month, which has left me in a writing stupor.  I've been looking over texts and Facebook comments that I've made the last few weeks, and simple two-letter words are misspelled.  So maybe it's a good thing that there's been a small hiatus. Not to act like I'm a grammar genius anyways, we all know Nate, my better half, is the grammar man, not only in English, but in a million other languages.  I definitely married up.
   Evey is 4 weeks out from her spinal rod expansion surgery.  She did amazing, and has bounced back so quickly.  The first few days post-op are the hardest because we have to figure out what drug cocktail works the best for her.  Because her GI tract is different than typical kids her age, the typical meds that they give 2 year-olds don't work the same for her. We learned this surgery: pain meds not so much, but the muscle relaxers are key for her.  Hooray for Valium!
   My favorite thing about our Evey lady is that when she goes big, she goes big.  Her development is so unusual because there's not a lot of progression leading up to big milestones.  It's like she wakes up one day and says 'today I will crawl'.  'Today, I will stand, and today, I will eat a pizza crust.' That's exactly what happened last weekend.  We came home from a Saturday full of errands and picked up some pizza on the way home.  She was making crazy noises while we were eating, so we handed over a handle of crust and she went to town.  She chewed that thing for 45 minutes.  Then, while she was eating her crust, she started pushing up on her legs and bearing weight in a downward dog yoga position, with the crust in her mouth.  She did all of this without her AFOs (ankle/leg braces) because she grew out of them a few months ago and we haven't ordered her new ones yet.  Like a boss, Evey lady, like a boss.  These last few days, she's been wanting me to hold her so she can stand all the time.  This week we will be ordering her a walker, and from there, the sky will be the limit.  It truly is amazing.  When she commits, she commits.  When she's decided, she's decided.  Another life lesson from the perfect example in our household.  Go big or go home, says our yoga master!


Thursday, February 27, 2014

A Letter


Dear Zoey,

     It's official, you're finally 3.  I'm a little relieved that I no longer have to deal with gawking strangers commenting on how big and smart you are.  Now if you can just slow down a little bit and act your age, that would be wonderful.  Although, I know you never will.  You'll always want to be 10 years older than you really are and I know that will not change no matter what your age.  How do I know that my Zoe's nose?  It's because you're just like your mama.  I know, I'm sorry for telling you that, because there's nothing worse than parents telling you, you're just like them. So hopefully you won't read this until you're 30 and have accepted your fate, or maybe you won't read this ever, if you're really lucky. 
    The good news Zoey is your Dad and I happen to think you're the coolest lady around.  You have charisma oozing out of every part of you.  People love you from the second they know you.  Because of that, you'll do amazing things.  I can't wait to watch you grow and watch you choose your profession and husband(hopefully he's just like daddo) and more importantly I can't wait to watch you have your own children. 
     I know, I told you you're just like me, but know this Zoey, you're also better than me.  The Lord choose you to be a little sister to two rambunctious older boys and you have a special calling to be a big sister to a little sister that will always need you and your help.  Don't forget that you chose this calling before you came down to this earth. You and Evey made a deal before you came here and promised to look out for one another.  You may feel discouraged some days and wish you had a "normal" sister, but remember there's no such thing as "normal" in this mortality.  Because of your gifts and talents, you've been given a lot of responsibility.  You'll have all the opportunities in the world to bless your own brothers and sisters and all those that come to know you through them.  Stay close to the Lord, use all your gifts and talents for good, and you'll accomplish anything you put your mind to. 
    We will definitely have some bumps and bruises along the way, that I am sure of.  But you are oh so loved, Zoey.  You are loved by your siblings, by your parents, and most importantly by your Heavenly Father.  Don't ever forget where you came from and where you're going.  We love you more than you'll ever know, thank you for being you, and for blessing our lives more than we deserve.

Love,
Mom and Dad

Monday, February 3, 2014

Growing Pains

    Evey's spinal rods are protruding like crazy out of her back because they're fighting against her body as it tries to grow.  I can't help but think how bad that must hurt her, but at the same time she's been blessed with such a high pain tolerance, so she seems to be managing just fine.  Metaphorically speaking, I think I'm experiencing my own growing pains.
    I tend to lie low when my mind is racing faster than my actions can keep up.  Sometimes, I can get a little too introspective and escape into my mind and thoughts a lot.  Nate calls it my island.  It was our joke when we first got married that I live on my own island and Nate just had a day pass to visit me there.  Nate now has full privileges on my island, he's earned them over the years and I trust him enough to allow him full residency there.
    On that note, I'm learning new things about myself lately.  I feel growth as a wife, as a mom to four evolving children, and more importantly as a daughter of God.  That's the gift that Evey has brought to our lives.  Having her around does not allow us to be complacent.  There's always something new that pops up with her: new medical issues/surgeries, new bills/insurance changes, new late nights.  Something to keep us on our toes - and there's that unknown aspect of 'we could be doing this for the next 30 years with no end in sight'.  Seems daunting - but yet, it is such a blessing - and I hate monotony - so it's perfect for our little family.
    With all going on, I've been tempted to hop on here and do some doubting, questioning, and so on.  But then there's this quote that has not left me since I heard it last year during General Conference.

     "When problems come and questions arise, do not start your quest for faith by saying how much you do not have, leading as it were with your “unbelief.” That is like trying to stuff a turkey through the beak! Let me be clear on this point: I am not asking you to pretend to faith you do not have. I am asking you to be true to the faith you do have. Sometimes we act as if an honest declaration of doubt is a higher manifestation of moral courage than is an honest declaration of faith. It is not! So let us all remember the clear message of this scriptural account: Be as candid about your questions as you need to be; life is full of them on one subject or another. But if you and your family want to be healed, don’t let those questions stand in the way of faith working its miracle." -Elder Jeffrey R. Holland

In today's world, if you don't talk about your doubts and troubles, people are cynical and think you're faking your perfect life.  For me, it begins and ends with my faith, with me sorting out my "growing pains" with the Lord somewhere in between.  My life is by no means perfect, or even pretty, most days.  I think down deep, we all know that about each other.  But wouldn't it be amazing if all of us started our day with the Faith that we do have - and stayed true to that until the sun goes down? I'm working on it, and I know the Lord expects me to keep trying and to do a little better each day.  Even though my Faith isn't perfect, the Lord stills continues to work miracle after miracle for our family.  And that is the Plan of Happiness.  That through his infinite mercy, he'll continues to shower us with his Love as long as we keep trying.  We are blessed.


Monday, January 13, 2014

The Marathon

    Somewhere between my first world problems; unpacking a new house, choosing paint colors and recovering from the holidays, I've neglected the blog.  The good news is we have picked paint colors, bad news is we have yet to start painting.  Baby steps...
    Evey has her first spinal rod lengthening surgery in a month.  I'm actually a little nervous about this surgery, for the first time, probably ever.  Now that we know she has brittle bones and low bone density and she broke a rib the first spinal rod placement surgery, I'm nervous that as they're lengthening the rods, some more ribs will break, or worse her pelvic bone, or worse other stuff.  For now, there's nothing I can do, but take care of home and kids for a month and keep on keeping on.
     Evey's life constantly reminds me that this mortality is a marathon, not a sprint.  I have no idea what her future holds, I don't have a clue how long she'll be with us, and there's nothing I can do about that.  All I can do is take it one step at a time, tackle one issue at a time, and be the best Mama and wife that I can be to the other 4 amazing people in my life.  Isn't that the beauty of it all, that sometimes we just have to endure the best we possibly can in some really yucky "mortal" situations and trust that the Lord's plans are perfect for us.  Hence the saying, "Faith in every footstep", and believe me, there are a lot of baby footsteps in our marathon life.  I'm grateful that some days the Lord allows us to feel like life is a sprint and I'm grateful on other days we have to endure the marathon - to help us remember how good the sprint days feel.  I'm also learning on the marathon days, there's an extra responsibility on my shoulders to make sure that I ask my Heavenly Father incessantly to help me, because I simply cannot do it without Him.   For now, we are baby stepping, faithfully, to the ultimate end goal - being reunited with our loving Heavenly Father.  


Wednesday, January 1, 2014

Message from Rwanda

     A couple days ago, I had the perfect reflection moment for 2014.  One of the coolest guys we know happens to be Evey's wheelchair technician.  Their job is essentially to customize the wheelchair and measure Evey to make sure it fits her to a tee.  Our wheelchair guy is so cool, that he tricked out her wheels and put on some mountain tires and also customized her foot pad with some cool material that will be good sensory stimulation for pressure on her feet.  He is always so happy and has a wicked sense of humor.  Like I said, he's awesome!        
     He is from Rwanda and whenever Nate and I meet people not from Utah, in Utah, we ask them how they like it here.  He said this to us, "I like it here.  The thing is, you just have to be happy wherever you are."  So we asked how long he has been here and he said he left about 20 years ago.  We quickly put together that was the time of the genocide in Rwanda.  And then his comment made perfect sense, you can be happy wherever you are no matter what life circumstances are.  Especially coming from one of the happiest people I've ever met - who left his country in the middle of a genocide.  So that is my theme for 2014 - be happy wherever you are.  Thank you dear friend from Rwanda, for not only making Evey the coolest customized wheelchair, but for also giving us a pearl of wisdom, that will never be forgotten.  Here's to a happy 2014! We are blessed.
    

Monday, December 16, 2013

Evey in Galilee

Our dear friends (Paxton's parents) were traveling throughout Jerusalem last month.  It must have been an amazing trip for them to trace our Savior's mortal life, and to remember Paxton, who is now reunited with our older brother and Savior.   While there, they visited the Mount of Beatitudes where Jesus delivered the Sermon on the Mount.  On a specific tree on the Mount this is what they saw:


Evey will probably never make a trip to Jerusalem during her mortality, but just knowing that her name is there on the Mount of Beatitudes is perfect.  Hopefully Nate and I will go find that same tree one day.  For now, because we know there's no such thing as coincidence, we feel grateful that Shannon and Dave captured this perfect picture for us.  Most importantly, thank you for still looking out for your lady, Paxton.  We love your parents and we miss you and can't wait to meet again.

Mosiah 10:9 - Yea, and are awilling to mourn with those that bmourn; yea, and comfort those that stand in need of comfort, and to stand as cwitnesses of God at all times and in all things, and in all places that ye may be in, even until death, that ye may be redeemed of God, and be numbered with those of the dfirst resurrection, that ye may have eternal life.

Monday, December 9, 2013

Best Laid Plans

Today I had lots of great plans.  Last night as I was trying to fall asleep, I planned out my Monday.  It went something like this.
-Wake up, get the kids off to school.
-Unpack more boxes.
-Go to the grocery store.
-Pick up Christmas Cards to mail.
-Go to the gym.
-Make an asian dinner I've been craving.
-Pick up Evey's prescriptions.
-Call over some Insurance bills.
-Cancel and reschedule Evey's overnight seizure study
-Eat said delicious asian dinner
-Have family night
-Put up Christmas decorations and let kids decorate their gingerbread cookies.

Instead, this is what really happened.
-After being up all night treating Evey's fever and stomach virus. We had a late morning start and finally got the kids out the door with much coercing (aka yelling)
-Took Evey to the doctor again after 10 days of a stomach virus and 4 days of fever(never mind the fact that we were in the ER over the weekend - sore subject).
-While getting home from the doctors visit and laying Evey down in her crib for a nap, her g-j tube got snagged on my purse and came out....again.  Seriously? (it's time to get her a belly band wrap)
- Waited for the boys to get home from school and we all drove up to the hospital to get it put back in for the umpteenth time. That's a couple hour ordeal.
- Ate corn dogs, cheetos, french fries, and gummy worms for dinner at the hospital cafeteria.
- Came straight home for bath and bed.
-Icing on the cake, I got a cold sore :(

    This probably happens to us twice a week.  Nate always says plans for us are a complete luxury and a pure miracle if they even happen.
     I guess I'm writing this to vent a little, but even as I'm writing I feel quite petty.  Look at all my first world problems.  Oh poor me, I didn't get to sit in my warm house and put up my nice christmas tree and cook my delicious dinner or go to the gym.  It's kind of embarrassing, but I suppose I'm posting this more as a reminder to myself. While we were eating dinner in the hospital cafeteria Eli exclaimed, "this is the best family dinner ever!"  I think Cheetos have that effect on most kids and lets be honest, most adults.
    Now, if I really take a hard look at my day, I can find some of those small miracles.  I remember that our favorite Aunt called and came over just in the knick of time to play with Zoey so Nate & I could run and get the last of the stuff from the house, that we didn't get over the weekend because of Evey's hospital stay.  There was an extremely nice southern gentlemen checking us in at the hospital who we love and tells the best stories.  The insurance lady I talked to while waiting for Evey's procedure was extra nice today and we talked about moving and hoarding and laughed about it.  Our favorite radiologist was on staff and made Evey's replacement much more pleasant.  And as Eli proclaimed so wisely, Cheetos do solve all problems.  Plans are overrated, good thing I've never really liked them anyway.  We are blessed.




Monday, December 2, 2013

Tender Mercies

   With Evey, I feel like I can easily recognize the big mercies the Lord sends our way.  However, I was reminded this week that sometimes the small tender mercies are the ones that deserve the most recognition.
     This last week we headed down to Southern Utah to spend Thankgiving with my parents.  It was a long 4 hour ride in the car and Evey's first long road trip post spine surgery.  The kids all got a little antsy, seeing as how they've been spoiled with flying lately.  The second we got to my parents house and I laid Evey down to change her diaper, I noticed her g-j tube had been pulled out.  No bueno.  The problem with the tube being in her jejunum (intestine) is that it can only be replaced by an interventional radiologist in a radiology room which is only found in a big-time children's hospital, or big city hospital.  Southern Utah has neither, so I immediately cursed, cried, and then after the tears went away, we got on the phone to find out if we could go to Las Vegas to get it put back in, or if we had to drive all the way back up to Salt Lake City - 4 more hours on the road, while Evey went without any food, driving in the middle of the night.
     I was so bummed, I just wanted a Thanksgiving, especially because last Thanksgiving we were in the hospital recovering from her skull surgery.  After an hour or so on the phone we realized our best option was to turn around and drive back up to SLC.  We packed up the car and my parents offered to take the other 3 kids and meet us up at home the next day.  As we were driving away, I got a call from our radiologist back home that said he called and found a doctor in St. George that could put in Evey's g-j tube.  Four hours later, after an almost fight with an idiot ER doctor, and talking the radiologist through replacing her tube, we were on our way back to my parents' house for Thanksgiving.  My mind was scrambled eggs by the end of it all, and my parents wisely told me that they were praying for a tender mercy, and when we told them we could stay in St. George, they were immediately so thankful that the Lord gave us a tender mercy.  It was a tender mercy that I didn't even recognize because it still felt like such a fiasco.

     Two days later while still at my parents' house, Eli woke up at midnight coughing up a storm and couldn't catch his breath, while turning blue.  Thankfully we had Evey's steroids, gave him a few puffs, and ran him down to the ER.  Turned out to be pneumonia.  Three day Thanksgiving trip with only 2 trips to the local ER.  We are now infamous down at that small town hospital.


     Although small in the scheme of things, these are the tender mercies from the Lord.  Not having to leave abruptly and abandon our trip.  My dad letting me cry in his arms in pure frustration after seeing Evey's g-j tube pulled out, having extra medicine lying around to give to Eli when he needed it most.  And as always,  Nate and I continuing to be blessed with the energy we need, despite sleepless nights.  This thanksgiving, I was extremely grateful for my wise parents that reminded us of the small things that we are blessed with, even amongst the chaos.  Best thanksgiving in a long time, despite it all.  We are blessed.

Tuesday, November 19, 2013

Teen Supreme

    The more we talk with those around us, the general consensus continues to be that the world is getting more and more out of control.  Nothing is as it seems and there's craziness everywhere we turn.  As a Mom, trying to raise stand-up kids in this type of environment, can be intimidating, to say the least.  It can be down right scary and totally depressing and gloomy to think about tackling the daunting task of protecting your kids into today's society.  Nate and I know with the world becoming so polarized, with that bad, comes incredible good.
     A couple of years ago, Nate and I had the opportunity to teach 14-16 year olds in our church.  These teenagers were hands down, some of the most incredible kids we have ever met.  They were strong in their faith and clung tight to their values.  They weren't daunted or afraid at all of what the world was throwing at them.  Instead, they were brave and fearless and facing life without hesitation. It was a great year to bask in their light and example.  Now, they are all around the world, on missions, preaching the gospel and facing the world with that same bravery we saw years ago.  We knew after teaching them, that these next generations of youth would continue to prevail against society's standards and come out on top.
    Enter these 3 amazing girls.  There's an incredible program up at the University of Utah for siblings of special needs kids.  Every friday night, high school and college students volunteer their night to spend one-on-one time with these siblings.  Our kids got lined up with these 3 teenage girls from a local high school and it was love at first sight amongst all of them.  These girls give up every friday night to play with our kids, without pay or any recognition.  Our kids talk about them all week and can't wait to see them.  Every night as we drop the kids off, Nate and I always reminisce that we were the worst teenagers.  We would have never given up our friday nights to hang out with some kids, unpaid.  We love that those girls love our kids and we will be referencing them and their kindness for the rest of our lives.  I hope the rest of their lives are infinitely blessed for the simple service they have given our family every friday night.
   This my friends, is why we are all going to be okay.  The youth out there will make sure of it.  Sure the world can be pretty scary, but if we stop reading and listening to the news for a moment, take a breath, and look around, there's a lot of miracles and beautiful, kind deeds taking place all around us. We are blessed.