Saturday, March 21, 2015

I am now a MAD mom

Many friends joined us in praying during Evie's last inpatient stay at Children's Hospital in Denver (Aurora) since it didn't go as we expected. So, here's a brief overview of what happened.

We've been trying to figure out Evie's seizures for two years now.

A while back, we had a spinal tap done that showed that Evie is "probable" for a certain metabolic disorder where her brain can't process sugar as fuel. Her seizures may be the result of her brain not getting fed. The idea of this diet was then put on the table as a way to properly fuel her body and brain with fat instead of sugar.

Kids who haven't been able to have their seizures successfully controlled with medicines usually see better results with changing to a Ketogenic Diet.

I guess I think of it this way... the rest of us can function properly on unleaded. Our sweet girl requires premium. ;)

So, we decided to give it a shot.

The view from our room

She fasted the night before we got there and drank a special shake during the first day.

We took lots of wagon rides and trips to the library and toy rooms.

We even had some special visitors!

The general idea is to starve the body to get it into a state of ketosis. This happens when the body starts using fat for fuel instead of the sugars we eat.

From WedMd:
Ketosis is a normal metabolic process, something your body does to keep working. When it doesn't have enough carbohydrates from food for your cells to burn for energy, it burns fat instead. As part of this process, it makes ketones.
We can monitor that she is still in ketosis by checking to see how many ketones she *expels* during the day. (I'll let your mind figure out how we'd test for that) ;)

The diet works on a ratio high in fat, moderate/low in protein and carbs. On the second day, I was taught how to use a special computer program to figure out the ratios. I then measured her foods to the exact grams or ounces on a scale. Her calories needed to be strictly limited, too, to maintain the state of ketosis. 

Her breakfast on the Ketogenic diet.

Unfortunately, she did not handle this diet well at all. 

The main staple of this diet is heavy cream. It's carb free and high in fat. But, we quickly found that her body aggressively rejects raw cream. (I can cook with it, but if it is mixed into anything cold - like using it to make creamsicles - her body expels it as quickly as possible.)

Our poor girl spent the next four days being so sick and out of it. 

I'll spare you all the details, but it was horrible. She wasn't herself. She refused to eat, drink, walk, etc. She was a sad, sometimes angry, limp noodle. She wouldn't even talk. She just cried, grunted, screamed. 

It was horrible. 

Dear Doc McStuffins, THANK YOU!

(why is it that kids look so much smaller when they are in those big hospital beds?)

So, the team decided to switch her to a Modified Atkins diet to see if that would help. 

The first smile I'd seen in 4 days... talking to her daddy. 

She would continue to have very limited carbs, but she'd be able to eat as much fat and protein as she wants and there would not be such an emphasis on the cream.

THIS GIRL. What a sweetie. She was so content and awesome so that I could focus on her sister.

Just about the time she started to rally, John was able to come up to be with us. By that point, I was was EXHAUSTED. I'm so grateful he came. 

Seeing him in real life (vs. talking the phone or video chatting) gave her the boost she needed to get well enough to be discharged from the hospital. 

We've been home for about a week and a half and she's doing really well! She was seizure free for a week and her seizures have been minimal the last few days. 

There is a lot of trial and error with this diet. We are learning and making adjustments as we go.

But, let me say this: ANY reduction in the frequency of her seizures is a WIN in our book. Her eyes are so bright and her sentence structure is already improving. She seems so much clearer. The fact that we saw a drastic reduction in seizures but then saw a few is not as discouraging as it sounds. She was having probably 100s per day and now we see 5 or less. So, yes, the diet may be high maintenance, but she is not on an extra medicine and there was not surgery or anything like that involved. We are SO grateful!

***Special thank you to my sweet cousin Bri, for spending time in the hospital with me and my girls, to Mindi and her family for taking the time to come down to say hi even though they have so much going on, Christine for always being a light in a dark time, Ric and Deb for your help, the Rieger's for letting John come down and taking care of our Jake, and to the greatest CA in the world, De'Ja.***

De'Ja and me when we finally got to leave.
It was a really hard 9 days and the diet is definitely requiring me to spend a lot of time researching, preparing, etc, but I'm so grateful for the relief it has provided Evie so far. 

Thanks to Children's Hospital in Denver and, more specifically, Dr. Park, Chelsey and Jenn! 
If you happen to run into a nurse, CA, CNA, etc, today, give them a hug. They are the unsung heroes of hospitals.


Friday, February 27, 2015

The Big Move to Big Sky Country

Some of you know that we ended up having to be out of our old place a week earlier than we had hoped, so we ended up getting some intense quality time with a sweet family in town! They took us (and ALL of our stuff) in during the transition time. 

Many thanks to Kelly and Katie Elkins for all the love and generosity you showed us. 

I can't explain how cared for we felt that week. There were lots of good conversations, good coffee, laughter, AND they really cared for me as we lost our sweet dog, Cooper Duke, while my hubby was out of town.
Thank you, sweet friends.

So many amazing friends showed up to help us load the UHaul in Lake City. We are so grateful. I got the opportunity to say sweet, intentional goodbyes to several of the women who made our time in Lake City so wonderful. I will miss each of them, as well as the ones I didn't get the chance to say goodbye to. Our time in Lake City was full of trials and tribulations and sweetest and friendships and good times and challenges and everything wonderful. 

The girls and I took off before the moving van was fully loaded because we had to pick up my dad from DIA. John and Jake were following behind in the moving truck with our horse trailer. 

Once we picked up my dad, we headed to the home of a former camper of ours whose parents graciously put us all up for the night. We felt so welcomed and blessed by them. They made us a wonderful dinner, provided such comfy accommodations, made and ate an amazing breakfast with us the next morning, AND gave us two horses. For real. I mean, geez. It was almost hard to leave. My dad, the girls, and I actually left later than we wanted to just because it was hard to leave. :) Special thanks to the Calhouns. We love you guys. 

That day was the longest day for us. We left the Denver/Colorado Springs area that morning, passed through Wyoming (where we stopped in the sweestest little town of Wheatland for lunch at Yacco's) and made it to eastern Montana later that evening. The girls and our puppy did great on the road. My dad and I were also able to have some really great conversations. I guess spending a day in a car together provides that opportunity. I'm grateful. It's not the kind of thing that happens when there are other distractors like tv, other family members, etc. This will be a sweet spot in my memory of times spent with my dad. We stopped in Miles City for gas and groceries before getting back on the road for the final stretch. 

We were relieved to find the beds made up and towels out for us in the bathrooms so we could just crash that night and deal with unloading in the morning. John and I have been mentally preparing for this move for a while so it all seemed normal to us, but it was fun to watch my dad discover what our lives were going to look like. 

One of the best moments was when one of John's new bosses showed up with his wife. They brought us a crockpot of soup... and three kittens. When my dad commented on how unusual that was, their response surprised him a bit: they are pest control. Ha! And, let me say, they are the cutest little pest control ever. ;)

Eventually we got everything into the house and it has been a slow process of getting it all settled. 
You know that saying, "You don't know what you've got til it's gone"? Well, I knew my dad was doing a lot but I didn't actually know how much until he left. I feel like I got so much done while he was here and haven't been able to do A THING since he left. Dad, COME BACK!

Thank you so much for all the help you gave us. The kids are still asking for you to come back. Just the other night when John asked Ev who she wanted to pray for, her only response was, "Papa Scott!"

So, anyway, be coming back here to see updates on the life of a cattle rancher's wife. I'm sure I'll be no Pioneer Woman anytime soon, but I will be posting pictures of cute cows. :)


Saturday, February 14, 2015

Cooper Duke 2007-2015

I'm not going to go into details because it's still pretty raw, but our pal, Cooper Duke, didn't end up making the trip to MT with us. He had some health complications during our trip to WI for the holidays that proved too much for him to heal from. Cooper was born about 6 months before our wedding. He was my roommate before we were married while John was still living on campus. Then, after our wedding, he kept me feeling safe and sound while John worked nights. He spoiled us. He was the best first dog two people could ever ask for. He was sweet and loyal and so so gentle with our babies. All he ever wanted was to be included. I never knew how difficult it is lose a pet. Saying goodbye to him was so much harder than I could've imagined. I loved that dog. What a pal.

RIP, old pal.

Friday, January 9, 2015

Baby Girl Bed Head - Installment 9

This wasn't exactly bed head, but this happened before I got to do her hair for the day.

Cold, dry winter air = Static.
Lots of it.

I hope you're having a good hair day.  ;)

Resolutions? The Word of the Year? Which do you do?

It's a new year!

Anyone else feeling completely bombarded by everyone's lists of resolutions and words for the year and good intentions?

As a mom of young kiddos, I know that I will break any resolution I make within a very short time.

So, I resolve to not make any resolutions.

Instead, I resolve (winkwink) to live intentionally this year.

Some people are picking a word to define who they want to be this year and I guess I like that idea because that's what I did.

I desire to be a woman of intention.

I am going to be intentional with:
  • the food I eat
    • more protein, more fiber, more water, consistent vitamins, less white sugar!
  • how I respond when my kids want my attention
    • really listen and respond well when they ask something or tell a story... not just enough to get them to move on.
  • with what I'm reading
    • spend time actually processing what I'm reading. This may mean reading less so that I can actually understand and remember what I've read. (In years past, I've read the number of book that ends the current year - example: I read 13 books in 2013. I thought about 15 books in 2015, but that is so unrealistic that I decided to take the pressure off myself and read to learn and process instead of reading to check it off my to-do list)
  • every time I take out my camera 
    • take the time to get it right in camera. Stop relying so much on post-processing.
  • do less so that I can do what I'm doing well

And, if you haven't read Shauna Niequist's blog post called Burn the Candles yet, go do it!
Hoping this motivates you for the new year.

Tuesday, January 6, 2015

New Year

Well, it's been about two months since my last post.

*I'm a little nervous*

I guess my last post was a little controversial.

I guessed that was going to happen, but I didn't guess how much it was going to affect me.

I received wonderful feedback from people who know me, but people I don't know were pretty judgmental and, honestly, rude. Some had constructive things to say with good intentions, but most were just plain mean.

I do not approve of that kind of stuff.

If you don't know me, maybe err on the side of grace in what you don't understand... or ask questions.

I'm afraid that all too often, people forget that there are real people behind these blogs who have feelings. And, this is MY blog. So, if you don't like what you're reading, either respond in a way that encourages conversation so that I can hear your point (instead of your rude judgments) OR stop reading and move on.

Anyway, I guess I just wish we could stop hiding behind our computer/phone/tablet screens and remember that common courtesies and politeness still applies to our interactions.

Give a little grace.

If you would say it differently to the person over a cup of coffee, say it that way online. Be kind. Let's learn from each other, not hate on one another. Let's make the internet a place where we can be together, sharing ideas and thoughts and our hearts in a way that allows us to grow together. Even if you disagree with someone, you can choose kindness.

I mean, that is what I'm trying to teach my 5 year old.

Maybe us grown-ups need a little reminder, too.

Have a great day!

Saturday, November 1, 2014

Why We Let Our Kids Go Trick-or-Treating... and other thoughts on Halloween

 Halloween is a very controversial topic among Christians.

*I am not suggesting that this should be the standard for your family. I believe that each Christian should ask the Lord what he/she should do and should base their actions on that.*

My husband and I have done that. We are comfortable with our decision.
I will not judge you for your decision... please offer me the same level of respect.

So, with that said, here's our thoughts on Halloween.

I personally am quite uncomfortable with most Halloween decorations. I place pumpkins around my home, but it pretty much stops there. I don't believe in ghosts or zombies and I don't want my home to be covered in those things. I want my home to always be inviting, warm, loving, and traditional Halloween decorations do not reflect those things.

While we obviously don't want to train our children to participate in evil, we do want to train our children to get in there and actively fight it.

And, while you can make a point by standing on the sidelines, you're not truly in the fight unless you're IN the fight. You can't win a battle if you don't participate.

Jesus didn't sit on the sidelines. He called out the demons. He ate dinner with hookers and corrupt tax collectors. He looked evil in the face and, when it seemed all hope was lost, he rose again and conquered it forever. 

He got his hands dirty.

I was the kind of kid who, if kept away from something "bad," began to fear it. I still fear the unknown. I wish that instead I had someone walk me though scary or controversial situations to show me how to handle it and how to stay above reproach in the midst of it.

Fear and lack of understanding is NOT how I want my kids to face unknown or new situations.

We will accomplish so much more by taking our small children around and showing those who hoped to scare them that our kids are already wise enough to know there is nothing to fear by their decorations and costumes because they have Jesus on their side.

I want my kids to be able to walk into every situation armed with the power of Christ and the ability to bring light into it. And, I want them to show others that we can always have fun and experience joy with them.

I will not send them into situations unarmed or alone. But, my husband and I can walk with them through this and teach them how to be "in the world but not of it."

It's possible.

And, I don't think I'll do it perfect every time, but thankfully God shows me grace and I trust that He can protect my kids even when I fail.

I know that as they grow, situations are going to be a lot harder to discern than 'should I let my kids put on a cute costume and get free candy?' But I believe the principle will remain the same.

Instead of staying in our own little bubble to make a point, we can go out on a night where most of our neighbors are outside, walking around, open to talking and getting to know others. We can introduce ourselves and let them see that we're humans, too. We can be friendly and kind and compliment their children's costumes. We can laugh with them and share some sweets. We can make memories with them. We can set a good example by having fun and creative costumes without the scary/gory aspect. We can "do life" with our neighbors.

We can get our hands dirty. 

What if Jesus had said, "Oh geez, that guy is demon possessed! That's too much darkness and I won't take part in that, because that's just too much! Obviously Satan has won this round..."? I don't ever want my kids to think there is so much bad that the good they can bring isn't worth getting into it.

I don't believe that by trick-or-treating I'm being passive and exposing my children to evils that they don't yet understand. I KNOW I'm being intentional and using this to teach them spiritual principles... and letting them have a little fun and a little sugar-rush along the way is a plus.

If we don't stand up and fight evil, bring light into it, show it that it cannot win, who will?

I believe that by ignoring it or fearing it, we give it more power. We need to get involved. We need to participate. We need to go in armed with God's power and spread His light. We won't be able to share our opinions about the origin of this day if we aren't around anyone who will hear it. And, we'll never be able to speak to someone on a heart level when they are feeling judged. Do life with people. Love them where they are. Stay above reproach in the midst of controversial situations. Be the light that Jesus wants us to be. A city on a hill cannot be hidden. Hide it under a bushel? NO! Let it shine.