Lily

A year ago today...an angel was born on Earth for a short time and she has forever changed me.

My Letter to Lily

Lily,

I wish we were celebrating your first birthday this weekend, with you....so instead we will celebrate your birthday with Heaven. I am thankful for your life and your parents. I miss you. I think of you often and wonder how the events and days would be different with your sweet presence with us, instead of hand in hand with Jesus. You are brave young one and beautiful! I want you to know how much you are missed and how your life has pushed me to be a better version of myself.

Because of you....I try to complain less and be grateful more often. I am working to cherish the small things and let go of what I can't control. We remember you each month in a different or unique way and it has been a privilege to bless someone in your honor.

I am so proud of your parents Lily. They have walked an impossible journey and have done so well in honoring you. They are strong and courageous. They are brave and willing to endure....selfless.

When I say that you will never be forgotten, I mean it. I hear a song, see a picture or read a children's book and think of you and your gentle soul. Your name will forever hold a place in my heart.

Happy 1st Birthday!

I love you Lily, xoxo

Aunt Kris

My Dad

I haven’t written a blog in about 8 months, life started moving at an accelerated rate once we moved into our new home and I am not really sure where the time has gone. We have seen so much progress in Vaughn and Asher’s development in the past couple of months and I have started to write the details down but for today I wanted to share with our friends and family some of the moments that have surround my parents recently. Most of you may know that a reporter from the Denver Post contacted my Mom about doing a story on depression, how it steals the joy and life from the person it holds prisoner and I want to share this link with the one of intent of bringing glory to God. We trust Him with my Dad’s heart and know that help will come by sharing my parents’ story…..

My Dad has struggled with depression for many years now; it first began in 1997 when I was a senior in high school. He has been on and off many different drugs and there are good years and bad years. He has struggled to find the right career since this all began and just recently we decided as a family that it was time to stop looking for a job and retire. My Mom works very hard to support them financially and care for my Dad. I am so proud of them both. They truly have lived out and understand, for better or worse, in good times and in bad, in SICKNESS and in health. Depression is ugly. It is foreign to me because I just don’t understand his state of mind because, he is my Dad. My whole life he has been this immovable rock of strength and courage. He is loving and strong and had such a witty sense of humor. He has given me the greatest gift a daughter could ask for….a relationship. Our relationship is priceless and when you feel and know that you are loved and cherished then it makes it easy to have a relationship with the Heavenly Father because my Earthly Father is such an amazing example of our strong, courageous, loving and faithful God. Even though my Dad doesn’t look, sound or act like the man God created him to be right now, that doesn’t stop me from seeing him exactly as the gentle spirit he is….one who loves deeply, has great faith and adores children. He was always fair and just as we were growing up and worked hard to support our family so my Mom could be a stay at home Mom for our childhood years. He taught us a love for family time, God’s word, camping, biking and games. There wasn’t anything he wouldn’t do for my Mom, Jonathan or myself. He took me on my first date when I was in high school so I would know what to expect when courting. I loved going to dinner, just us. My parents owned a business when I turned 16 and they gave me my first job where they taught me to be on time, have respect for our customers and other employees and quality work ethic.

I am proud of my Dad for opening up their home to a team from the Denver Post and letting them into our world to show others what this disease looks like. This wasn’t easy. My parents’ heart is to help others, to shed some light into the darkness of this disease and bring about awareness. I am thankful to the Denver Post for writing down my Dad’s story and the many others that are without joy. Thank you Jennifer, Craig and Mahala for being so honoring to our family while in my parents’ home. We will not lose hope; we will choose life in the simple tasks and praise God faithfully for He is GOOD always, even when we don’t know the next step to take in this journey. We will choose joy as a family, because that is what family does and we will not allow this illness to take from us what is ours, we will stand and fight on Dad’s behalf and in the end, be united victorious when he returns to us.  

Here is the link to the stories of the individual’s interviewed, since the article was written my parents have sold their home and will be staying with us until we are blessed by their new home. Please take the time to read each testimony, ours is ¾ of the way down, titled: Edge of losing everything

 

http://extras.denverpost.com/mentalillness/index.html?source=hot-topic-bar  

 

 

What is it time for....

I don’t really know where to begin except with the question that Jerad and I were asked a couple of times in the past and then again more recently. What is it time for? Not what time is it…. And after asking ourselves this question, the answer is to move. Our realtor and dear friend Charlie, (who has become part of the family in the past 5 months) sold our home in about 48 hours, which led us to live with my parents. They have opened up their home and let the 4 of us TAKE OVER. Their loft, their fridge, their dining room (which is my office) and their free time has been consumed by not only 2 little two year olds but another set of coffee loving, dishes using adults. There are no words that adequately express how grateful and appreciative we are to them. After 5 months of searching, praying, seeking out God’s best for our family, HE (and Charlie) have found our new address in a little town, called Johnstown.

We are very excited and also a little sad too as we close this chapter of our lives with Paul’s Custom Canvas, as the reason we are taking up residence in Johnstown is because the time has come for Jerad to change careers. PCC is the company that Jerad has worked for, for the past 15 years and this decision to leave did not come without much prayer. This business stood beside us as we got married, held our hands during the early arrival of Vaughn and Asher and our first non-family member babysitter was Michele and Hanna. They have supported our wishes to travel to other countries to help show God’s light to other nations and Paul has taught Jerad more than just the trade of canvas. Even though the chapter at PCC is closing, the good news is it isn’t ending. The book isn’t finished and these co-workers who will be so lovingly missed are our friends and will continue to be part of the memories made on our new street. With all of this said, we are overjoyed at the opportunity that has arose for Jerad to begin working for his Father and alongside his big brother, Eric as a machinist.

When we put our house up for sale or moved into my parents house we had no idea that the road would lead us up North but it is so fitting that our desires are really God’s, as I have been praying for Jerad to have Saturday’s off since the day I found out we were having boys.

To My Husband, Well Done!!! Your hard work has paid off and you are blessing the boys and me with a new home that is set apart for holy living, for kingdom purpose and as for the square feet that we will be closing on, THANK YOU…… WELCOME HOME.

Watch out Johnstown, there is another set of Allbritten’s moving in!

                                                                      

                                                                                     

My Song to Vaughn

The gate is wide
The road is paved in moderation
The crowd is kind and quick to pull you in
Welcome to the middle ground
You're safe and sound and
Until now it's where I've been

'Cause it's been fear that ties me down to everything
But it's been love, Your love, that cuts the strings

So long status quo
I think I just let go
You make me want to be brave
The way it always was
Is no longer good enough
You make me want to be brave
Brave, brave

I am small
And I speak when I'm spoken to
But I am willing to risk it all
I say Your name
Just Your name and I'm ready to jump
Even ready to fall...

Why did I take this vow of compromise?
Why did I try to keep it all inside?

So long status quo
I think I just let go
You make me want to be brave
The way it always was
Is no longer good enough
You make me want to be brave
Brave, brave

I've never known a fire that didn't begin with a flame
Every storm will start with just a drop of rain
But if you believe in me
That changes everything
So long, I'm gone

The Results of the MRI

We had an MRI done on Vaughn the beginning of October and received the results that he has a tethered spinal cord. We decided to get a second opinion and after meeting with the second surgeon we scheduled the surgery for Monday. It is a rather simple procedure but none the less is still the central nervous system. We will be staying 2 nights at Children’s and asking for your prayers as Vaughn recovers. The best news of the MRI is that Vaughn’s brain is good! There is so much joy in knowing this for Jerad and I.

I cannot believe it has been 3 months since I posted an update! Asher is soooo close to walking and took a couple steps during PT for Ms. Susie and I! He is also talking so much and he is saying 2 words at a time and communicates very effectively with us. We are so proud of his development! We did go ahead and schedule an MRI for Asher in December as there is a chance that the tethered spinal cord is genetic and not environmental.

Both boys are just loving practicing walking and our backs are sore but we are thrilled to have this “problem”. Thank God for Asher’s walker! Vaughn doesn’t quite have the upper body strength to pull the walker but Jerad’s brother gave us a toy that you push and Vaughn loves it and walks with this push toy. Vaughn has started talking and signing too and it is the cutest thing! He sign’s milk and more (and says them but they sound very similar) and signs eat. He says bubbles, show and is starting to ask for his pasi. I am truly enjoying watching him learn!

We had a great Halloween; it was exactly what I wanted. We went up to Eric and Jenelle’s and trick or treated with our cousins. The twins love their “big boy” cousins and missed our “big girl” cousins. I was reminded how good it felt to be with family and the importance of making time to be together…. We want to set a presentence for Vaughn and Asher what high value God places on family and Jerad and I haven’t done a great job this far, so we will be setting a new standard going forward.

Since this is November, the month of Thanksgiving….. I want to share what I am thankful for. First and forever, JESUS. The one who made us in His image and gave us family, community and emotions. I am super blessed by a community of women whom we all share one thing in common, we have twins. These women are funny, talented and beautiful and accept me exactly as I am. We laugh together, cry together, serve together and take care of each other. I am proud to be a Darling Doubles member. My heart is glad and happy to call them family.

Being made in His image is a huge thought. I mean think about, we were made in God’s image. We studied this concept one evening with another community that we call family that we Live One Life with and as I was thinking about what I am thankful for; I realized it is emotion. That we have the ability to express faith, hope and love. And those of you who know me well know that I am a little over emotional at times (I know and understatement)and though I feel this is one of my greatest weaknesses, it is also how God shows Himself, His character to me. He has the very same emotions and uses them to teach, correct and train me into the woman He created me to be.

 

With that said I want to share a video that encompasses these things……..As you know, we waited a couple of years to become parents and were blessed to tell our family on Easter that we were expecting. At the time of the video we didn’t know that we were having twins. My Mom and Brother were not able to be there but as Jerad and I drove up to Estes Park with my Dad, we were feeling so many emotions! I already knew EXACTLY how I wanted to tell our family. God was very clear with me when He showed me that I was to marry Jerad and He did so in using our oldest nephew Sam. Both Jerad and I have a special connection with Sam as he is the first grandson and a little older than the rest of the cousins so we had the opportunity to spend some time with just him, as he has grown into the young gentleman he is today. When we got to Nana and Papa’s, Jerad took Sam aside to tell him that we were pregnant as Sam typically pray’s over the meals. We asked him to end his prayer by saying how thankful he was for the baby growing in Kristie’s belly. Looking back we should have told him to say how thankful he was that I was pregnant because, as you will see….. I think my sister Jenelle was the only one that got what he was saying!! The man hugging me at the end is my Dad and a good representation of how much our Heavenly Father feels what we feel here on earth. So enjoy a little glimpse of our family’s emotions and how I think God feels about us. May each of you be BLESSED this Thanksiving season.

 

 

Blessed

Did you know that Asher means blessed? He is our “Baby B” and we felt so blessed to be having twins that there just wasn’t a better name. I wanted to share just a couple things about our happy Baby B as typically the blog is about our Baby A, Vaughn. Asher’s journey has been a little less complicated but never the less, just as eventful.

He is talking so much! I would guess he has 30 words and a good majority of them are accompanied by signs. He enjoys signing and is beginning to understand the cause and effect of his communication. He is a sponge right now and repeats almost any words we say to him. He is becoming a bit braver and has started pulling up to stand on the furniture and making progress in his walker. We do think he is going to need orthotics to start walking independently. I am loving having both boys crawling! Asher loves to go outside and play at the water table and is becoming more tolerable of the grass.

The name Vaughn means small (it doesn’t mean weak though)…...David must have looked so small to Goliath and yet David was the one with the courage to fight.

Vaughn has been on a low dairy diet since the middle of July and things are looking up, including his weight. After the FTT diagnosis we went back to the Doctor and in the 2 weeks since he went off of milk and dairy he gained 14oz’s in the 2 weeks! We were thrilled and the vomiting had slowed down and by August has stopped all together.

We were seen at the Children’s Feeding Clinic shortly after my last post and the good news is, with the help of all our therapists we are already implementing a lot of the suggestions this team offered. They did explain that Vaughn eats at the level of a 9 month old. Their observations were that he eats slowly and to help him get more calories in at a meal, we should try to always give him applesauce; yogurt or pudding per meal as we can spoon feed this to him. This has been a little difficult as he has become independent at meal time so he gets a spoon and I get a spoon and we both take turns.

We had a gastric empty study on Monday of last week and the results showed us that Vaughn’s stomach does empty at a slow rate. In 60 minutes, his stomach should have emptied half of the 7oz bottle that he drank. The GI Doctor was able to estimate by the rate his stomach was emptying that it would take 106 minutes to empty just half of the milk (formula) consumed. I was actually thrilled that something was wrong, we finally have an answer to some of the challenges that Vaughn faces. This explains the acid reflux, vomiting, and even the reason for the small meals as he doesn’t have time to get hungry in between meals and snacks. Typically kids grow out of this gastric delay and for now we are starting a medication that should help his stomach empty at a faster rate. We are hoping this medicine will allow for more calories to be consumed in the day so Vaughn will really start to grow.

We are making the least amount of changes to his diet to help us determine if the medicine is helping so for now, we are staying on the low dairy diet. We go back to the GI Doctor in 6 weeks for a follow up to decide if we want to continue the medicine and start allergy testing. We have added an RD to the therapy team as high fat foods are the foods that stay in the stomach longer and can be harder to digest and that has been the diet Vaughn has been on since he came home from the NICU. We are working to find a good healthy balance for Vaughn and she will be doing bi weekly weight checks on him (here at the house) for a couple of weeks so we can chart the growth.

We started dilating Vaughn’s right eye (the good eye) to force his brain to use his left eye more as the glasses have become almost impossible to keep on. The drops last for 3 days at a time and we dilate twice a week for the next couple of months to see if we can help the left eye track the same as the right. The dilatation doesn’t seem to bother him and this is much easier than trying to patch his eye. We are praying this will be the solution.

I am not sure I will ever know the answers to the “why” questions regarding my sons, so for now I am content with asking if they want milk or juice with lunch and will be grateful for the story that unfolds before me.

To Thrive

 

The definition of the word thrive is: To make steady progress; prosper. To grow vigorously; flourish. On Friday Jerad and I took Vaughn to see the Pediatrician and we discussed monthly weight checks for him as he is failing to thrive. He is failing to thrive because the throws up a lot. When I say a lot, I mean monthly. We thought this was just Vaughn, maybe due to his acid reflux or a mismanagement of food. And maybe it is one of those reasons; regardless it is time to find out why he is failing to thrive. It is hard to crawl, speak or process new information if your body is working overtime just to survive and that time is now for Vaughn to make steady progress; to prosper and to grow vigorously. We have an appointment next month with the Digestive Institute at Children’s to begin the investigation into what could possibly be  making it difficult for his body to digest his food. Is he beginning to show signs of a dairy allergy? I am keeping a food diary of what he is eating and it seems to be coincidence that it is associated, some of the time with dairy based products. The dietician that we spoke with on Friday advised us to take him off of whole milk and just offer formula until we can see the GI specialist. We are also working on re- scheduling an appointment with the Children’s Feeding Clinic to see if he might have some problems swallowing his food and we just aren’t noticing the signs.

 

Vaughn is one tough kid. After he throws up, he usually is smiling but my concern is he will begin to have an aversion to food and associate eating with throwing up and then we will have an even bigger problem in the future. I am sad that in our last month with bed time wearing only of his helmet he didn’t grow 1 once. We are out of time; there is no more foam in his helmet to shave out. His head looks really great and I am extremely thankful that we decided to put him (them) in the helmets but the roundness isn’t the “5” that I was hoping for. Now that the helmet is off, it is been very challenging keeping the glasses on. We are supposed to be patching his right eye for 2 hours a day and because we have been so focused on his diet, I have only done it one time and it didn’t go well.

 

I spoke recently to our genetics counselor and we have scheduled an MRI for Vaughn in October. We wanted to get this procedure scheduled but didn’t want to rush into putting him back under anesthesia either. We are only waiting on one more genetic test to come back but since everything else has come back negative, we have a feeling this last one will also (the last genetic test associated with the eye).

 

I am sitting here so frustrated. I feel that Jerad and I have walked this journey with grace and honestly I decided from the start not to ask God why as it didn’t matter. We didn’t ask why we had a high risk pregnancy or why the boys were born at 29 weeks. I didn’t ask God why Vaughn was born 1pound 4 ozs or Asher at 2 pounds 5ozs. This was the journey we were walking and by faith, I knew we would make progress. I have to admit though; I am starting to ask God why. WHY after all we have been through, can’t Vaughn at least prosper? He wants to crawl and he wants to talk, he just doesn’t have the energy to grow vigorously. I am mad. I am struggling with the journey of being a parent. Jerad and I choose from the moment we found out that we were pregnant that we would be in partnership with Him in this adventure and that decision remains the same but for this moment, I just have to express my reality.

 

With all that being said, I wouldn’t be me if I didn’t end this blog with the truth. The truth is; Vaughn will flourish. We will find the answers we seek with the help of many medical professionals and Jesus. Vaughn will thrive because he was created in God’s image. He is the son of the one and only Heavenly Father and is loved beyond measure. We are taking a more aggressive approach to Vaughn’s health and I know that “failure to thrive” won’t be a diagnosis that labels who he is. This is just one more expression of our faith that gives us the opportunity to hand Vaughn back to Jesus and say “We trust You with his life”. We trust you Lord and Jerad and I will continue to bless him with more of YOU.

 

We thank you in advance for walking along side us, reading the blog and most importantly praying with us as we do our best to keep each of you updated. I wanted to be really honest about where we are at so you know how to best cover us in prayer. My desire for this post is that after reading this, you see that HOPE isn’t lost in our family, that we know that we know that God will be glorified in our story, this just happens to be a time of seeking and learning more about the characteristics of God and how we can continue to love Him in the midst of heart ache. As Jerad and I have been discipled in our faith, we have been taught to be good question asker’s of God and I believe it is time to ask some questions and not be afraid of the answers. Just asking “Why” isn’t enough, so as we search out His response, be encouraged that this chapter in our lives will end with joy and jubilee.