ASD (Acknowledging Something's Different) or Autism Spectrum Disorder....

Vaughn was diagnosed with Autism Spectrum Disorder in July of last year. I am still struggling a little with the label. I don’t want him to ever have a label other than the Son of the Most High and yet we need the help to get the ongoing services that he needs because being a preemie just doesn’t do the job.

ASD means something different for each family as it is a spectrum disorder and individual’s fall on such different places on the timeline that on occasion it can be hard to diagnose. For years Vaughn has been behind the typical developing timeline and we assumed that it was because he was born so early and so small but the time came a year ago that we had to Acknowledge that Something was Different. It was time to get him tested and confirm, that since the boys are identical twins that Asher didn’t fall within the same category.

We had the initial conversation with our Pediatrician back in December of 2015 asking for a referral to the CDU at Children’s. She was hesitant at first but we brought along our friend and my advocate Michelle to help me communicate our expectations for the boys care (Michelle is an SLP). We waited for 6 months on the wait list before I called to try to push up our evaluations as I wanted an answer before pre-school started in the fall. I instantly like the MD and Psychologist that we worked with and don’t feel it is too much of an exaggeration to say these two doctors became like family to me. We had Vaughn evaluated at one appointment, then Asher evaluated and then Jerad and I drove down to Parker for the results meeting.  The Psychologist let me sit in on Vaughn’s Autism testing so I knew when we left that day that he would receive that diagnosis and they didn’t even test Asher for ASD so we knew that his brain was developing more typically. Jerad and I talked and talked about the meeting, prepared and prayed and yet it didn’t matter how prepared we thought we were, hearing that your son has a disability crushes your soul.

The Doctors presented us with some additional diagnosis’ some of which are not 100% confirmed and honestly I am not sure that we will accept. I was encouraged by our Pastor that this is a divine opportunity to dream the dreams that God has for Vaughn and have promised myself that once some of the grieving drifts away that I will, dare to dream big God size kingdom advancement dreams for our family.

I will not be embarrassed by ASD and am learning how to parent through a whole new filter. We have established house rules and visual schedules that for this type A Mom, is really a joy

I started to ask God WHY again, Why Autism after we worked so hard to deliver these babies and then bring them home to grow and thrive into the gentlemen that You created them to be and had to stop myself. Because it does not matter WHY. This is the journey we have been asked to walk and I will do my very best to reflect Jesus in it. Vaughn has opened doors for us that other- wise would be closed, to meet people that are uniquely created and learn from them.

Asher is thriving and developing typically and we couldn’t be more happy that his hard work is paying off. We did have an IQ test done and though he did fall below the average he has lots of room to grow and learn and develop just as God intended. Asher is so incredibly compassionate… I just can’t put into words how mercy hearted this young boy is. I am not sure where he learned this characteristic but I do know that it is a reflection of our Heavenly Father. He was made in His image so I shouldn’t be surprised but I just adore this personally trait that He blessed Asher with. I truly believe that they are twins because He just knew that this road would be difficult and challenging and Vaughn would need a twin brother to walk along side him. Asher is a role model for Vaughn and though he is still a 5 year old boy and has times of pushing the limits, he is exceptional at seeing his brother’s needs and helping develop coping skills. Social interaction can be hard for Vaughn but in our home, where it is safe, they play together in a way that will always be just theirs. They get each other and for moments at a time, I forget that Vaughn has a different future then Asher. I forget that I need to be overly prepared for the next transition and how to try to avoid a melt down. I don’t have to think about how the environment might be over stimulating to Vaughn and how we can set him up for success as we experience a new adventure.

I am not entirely sure why we have decided to share all this other then we want to continue to share the milestones that the boys achieve as each day has become a reward and a fight to develop the character of our Testimony Twins. The boys recently had their 5 year old check up and it is with great joy that they have “graduated” from the special care clinic at Children’s. They are on the growth charts and thriving!

In some sense, I feel like we survived, we made it through the first obstacle and we are on to the next big thing. We are diving into the world of ASD and learning so much about behavior and how to personalize our parenting to best fit both of our son’s lives. We spend hours each week in different therapy’s and have the privilege to meet some very gifted therapist and doctors along the way. We have been granted a key into a whole new community of people that not only bless our lives but my prayer is that one day, we can bless theirs in return.

We are constantly asking the boys what they are thankful for… and when I picked Vaughn up from school last month, one of his teachers pulled me aside to show me a Thankful Turkey that Vaughn made and on it, one of the feathers said “me”. His Teacher asked him 3 times to make sure that he understood the question and he did… what great perspective on life. We are created to be grateful and I think being thankful for the life we have been given is an outward expression of an inward faith.

Jerad and I have constantly strived to be different, to make sure our family was set apart for God’s desires and our prayers were answered in such a unique and honoring way. We have knowledge and understanding that can be used to bring about hope. We can offer hope in a world that is in desperate need of just that!

We have Acknowledged Something’s Different and we accept it. My goal as a Mother hasn’t changed since the moment Vaughn and Asher arrived. I will raise God fearing gentlemen who love the Lord and others, it just might look a little different.

Birthday Boy

39 years ago my Hubbie was born, the youngest of three boys…

To My Husband On Your Birthday-

 HAPPY BIRTHDAY! You are my heart’s desire and it is such a joy to grow up with you! Our lives together have been such an adventure of love and faith and I can’t wait to see where the next 39 years lead us. Hand in hand at times and other times holding each other’s arms up, your commitment to myself and the boys is unwavering. I trust in your devotion to seek God first and to teach our family to persevere and believe in the goodness of His plan. I adore you.  

A little walk down memory lane….

Love Everlasting xoxo

Today was a good day….

Today was a good day….

at PT for Vaughn. He was pushed and he responded instead of reacting and had good eye contact. He was waiting his turn and learning to share. He followed instructions and was rewarded for his excellent behavior. We don’t get a lot of good days… these days so I am choosing today to celebrate the good ones. We have been challenged lately with some obstacles put in our path and on occasion, I feel overwhelmed by life but today I feel hopeful. HOPE- joyful and confident expectancy in the goodness of God! I needed some goodness today and He provided it. I just wanted to take a moment to write down a victory, so I can be reminded that we do have them.

I am proud of my boys and how hard they work. We spend most days in the car traveling back and forth to therapies and if I don’t take a moment to brag on their success then too much time will go by and I will forget. How did it happen that my last post was a year ago?! Our milestone’s look different but I am learning that being different is really just a reflection of Jesus’ character and being made in His image is good.  Today was a good day…

A Blog that I started and never finished or published from June of 2014...

 

Pirates, Pacifier and Pre-school

Just when we thought things were going to begin to slow down….. they didn’t. Vaughn recently saw the eye doctor and since he has been pretty good at wearing his glasses, she told us to start patching his right eye (the good one) to teach his brain to use the left eye. Imagine how confusing it would be to have a stigmatism in only one eye. Then we are going to put a patch over the eye that one would use to see and put his glasses on top of all that. He is such a good sport. We patched for the first time yesterday while watching TV and it went ok right until I had to take it off.

We saw Dr. Mary last week (our Pediatrician) as Vaughn was struggling again to eat and his balance and equilibrium seem to be worse lately. We made an appointment to see her after our screening with Child Find for Pre-school. Yes, I said Pre-school, can you believe it? We can’t….while we were there the Audiologist tried to do a basic hearing test on Vaughn and wasn’t able to do so because she discovered some fluid in his left ear. The boys haven’t been sick for months so I was concerned but she said it wasn’t an infection so he should be fine. Later in the screening, Vaughn tripped over nothing in particular and bumped his head pretty bad, a great example of our concerns. When I am telling our OT the details of the event she mentioned that having chronic fluid in your ear can throw off your balance. Jerad and I were already wondering about his hearing because of the huge delay in his speech so I didn’t need to hear anymore, we were going to get a script for a hearing test. We are scheduled to see an ENT doctor later this month to see what can be done about the fluid and have his hearing checked. The ears, nose and throat specialty is a new department at Children’s for us. We advanced Vaughn’s dose of daily prevacid and are praying this will help his appetite.

Asher is starting to advance into a typical “full term” toddler as he spends most of his days in time out or being told no. He is exploring his independence and will and has an amazing memory. I am grateful for his progress but find it challenging most of the time as Vaughn isn’t at the same cognitive level as his identical twin brother.

Vaughn and Asher turn 3 in October and will be heading off to pre-school to continue with their therapies.  Three just seems so young to go to school but I am sure it is just my heart strings being pulled as I try to imagine them being away from me a couple days a week. With that said, it was time to wean away from the beloved pacifier. I say beloved because not only do the twins love it, so do I. There was no way I was going to send them to pre-school still using a pasi, so we have started the process. They only have them in bed or the car. They are adapting better than I thought! One of the boy’s favorite songs right now is Head, Shoulders, Knees and Toes and it really does apply to Vaughn right now. “Eyes and Ears and Mouth and Nose” well so far all is well with his nose!

Things to Remember....

This past year and a half has been unlike any time of my life.... we have struggled with deep sadness and exceeded new milestones we just prayed and hoped to achieve. Our family moved into a new house, neighborhood and town. Jerad took a leap of faith and started a new career. We have found a new church home and have begun to plant some roots here in this quaint little town called Johnstown. 

I had started a couple blogs and never finished them.... one would think that with the boys in their first year of pre-school I would have so much time on my hands and yet, the time just shifted. The time looks different, instead of grocery shopping after they lay their heads down at night, I go while they are in school so I have more time with Jerad. And if Jerad is home, it is hard for me to do my own thing (well unless a new season of Glee is just released). I started this blog as a way to communicate with our friends and family all the ups and downs of the boys preemie journey and I believe as their medical/therapy needs decreased, my time of writing did too. What a blessing to say this! Vaughn and Asher will be 4 in October and as they are growing up, I want to remember each stage and cherish the memories we are making....I want to leave a legacy for them to remember God's goodness in all things, at all times.

Vaughn is courageous! This mighty man of mine has no fear and an adventurous spirit! He is independent and strong willed and has his Mamma wrapped around his finger. Vaughn still has a little torticollis in his neck and though we are not currently working on it, I think as he gets older and can do the exercise's on his own and understands the benefits of them, we will be able to work it out. We are very slowly trying to wean him off his medication for acid reflux and his appetite has increased tremendously since going back to chiropractic care. Vaughn will always wear glasses or contacts as he gets older for his left eye as he has a stigmatism but if that is the only issue that he has from being born at 29 weeks and weighing 1 pound then I consider that a miracle. We are in our last round of dilating his right eye to help his brain focus on using his left eye and will meet with the ophthalmologist in a couple of months to decide the next coarse of action (Amblyopia in his left eye which is a decrease in vision from lack of stimulation and Exotropia which means his eye drifts out). He hasn't grown out of his sensory issues yet but there is still time and his school and teachers do an amazing job of just pushing him enough to try new textures and experiences. Vaughn loves Thomas the Train and humus. He will try and eat almost anything and this has been so rewarding as we have worked really hard to get him to eat!

Asher has lived up to his name to the fullest, he is happy and daily we are blessed by his compassionate character. He is talking so much and I am enjoying our little conversations. Asher has graduated from needing occupational services (fine motor skills) and is just beginning to experiment with walking up and down the stairs with out any assistance. Asher is really into music and Blue's Clue's. Asher isn't as open to eating new foods but we are working on having a larger variety of choices for this little tank. He is a good eater though and is on the growth chart for his age (not the corrected age) at the doctors office.

We are so proud of the boys growth and development and can't wait to see how much they will learn in their next full year of preschool. Both boys love all things cars, trucks, and tractors! We don't sit through a movie so we haven't experienced the movie theatre just yet but I see that happening soon. They also like dinosaurs, books, and swimming. Grandpa and Grandma have a "big pool" at their house and have turned the twins into fish! We spend many summer days visiting the zoo and had the joy of visiting the museum recently and that was a blast!

I am (trying) to savor these moments while they are young and say and do the cutest things! This new season has been easier in many ways and challenging me like I never thought possible. We are reading books about potty training and are starting to get the momentum going of how great it is to be big boys. Asher will be moving into a big boy bed before preschool starts in the fall and we anticipate that Vaughn will follow shortly after. Life is full of unanswered questions but for right now, Jerad and I are asking ourselves "What is it time for?"

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.

Milestone Memories

We officially have a crawler! Asher has been crawling for a couple of weeks now and I have been trying to get the perfect video and decided that the couple that we have are perfect enough because he is mobile. We are so very proud of him as we had just about given up on practicing crawling and were starting to focus all of our PT time on standing and walking and then one Tuesday evening my Mom sent us a video of Asher crawling. His motivation you ask, the remote control. They love to watch Baby Einstein.  

The boys and I have had a busy couple of weeks as we saw the eye doctor last week and the helmet doctor this past Tuesday. Vaughn’s left eye is about the same but the eye doctor did say that she thought his glasses were helping. We should also begin patching his right eye, slowing working up to 2 hours a day. We haven’t started this as we were waiting to find out the progress with Vaughn’s helmet. The good news is we are a month away from being finished completely with helmets! This 5^th scan showed that we made another millimeter in progress moving us to an 8. It wasn’t what we had hoped for but any progress is better than none. I know that we only have another month in his helmet as we have shaved away all the foam that we can in the area’s we are trying to round out. The advice of the helmet doctor was to only wear the helmet at nap time and bedtime as Vaughn is beginning to grow out of his helmet. We agreed with this recommendation as we have moved into summer and we believe that the torticollis will improve the more he is out of his helmet. This will also give us more opportunity to practice crawling with Vaughn as it was so hard to build upper body strength and lift his head to crawl with the helmet and the disadvantage of the torticollis. We are praying that we will have another crawler in the near future.

In March I wrote about the Tortoise and the Hare and over the weekend, Vaughn decided he didn’t want to take his afternoon nap so while Asher was sleeping; I played dress up with Vaughn. I have come to the conclusion that playing dress up is typical, the norm really. J Here is a picture of my Tortoise and because Vaughn has been in his helmet for so long, he is really good about wearing hats. My sister Jenelle gave me this hat and I just couldn’t resist taking a couple pictures of my Cowboy. Asher‘s first word was “dog” and on Tuesday when we were playing with a ball, Vaughn said “ball”! I actually got it on video because I was trying to capture Asher crawling! Maybe Asher will be a veterinarian and Vaughn will be a soccer player…. Isn’t fun to dream about who God will mold your children into being! The milestones that the boys are making are such sweet memories for us…..

To See

Vaughn and I visited the eye doctor a couple of weeks ago and found out that his left eye, tricked us. Jerad and I knew that there was a very likely chance that his eye wasn’t going to continue to improve on its own but because we finally received some good news following that previous eye appointment back in February that we rejoiced at the positive outcome for Vaughn. It was also one less accessory that we had to dress him in each day. We see the eye doctor every 2 months so this was a routine check up, but the timing happened to be perfect as just as we were approaching this appointment we started to notice that left eye start to track funny. It is very subtle and so I waited to see if Jerad would notice without me saying something and he did, so we had an idea going into this appointment that Vaughn’s glasses would be making a comeback.

At our last helmet appointment I mentioned that I had a feeling we would need to start wearing Vaughn’s glasses and that trying to slide them in between his face and helmet didn’t work because he could pull them off. We were given some velcro to try and we are thankful that it worked! We are able to keep his glasses on and wear his helmet by adhering the glasses to the outside of the helmet (see the picture below because if you thought he was cute, he is even cuter now). Vaughn had his 4th scan and we moved 3mm and that is the progress we were praying for! He went from a 12 to a 9 and our goal is a 5. We go back in a week to get another scan and to find out if we are close enough to be finished. The boys had their first colds at the end of April and were not eating so I don't think he moved another 3mm. Here is the scan:

                

I was discouraged at first…. Thinking really, the one thing that was going well and now I have to ask my son to not only wear a helmet but put his glasses back on. And if we couldn’t keep the glasses on, we were given some patches to try. I feel good about the glasses now though so we will wear them until our next check up to see if they are helping.

It was raining yesterday while I was driving and talking to the Lord and asking for some understanding about Vaughn, his delay, his helmet, his eye and a song by Laura Story came on the radio called “Blessings”. I have heard this song a million times (and will put the lyrics at the end of this blog) but today, as it was raining, it spoke to my heart. Here is the chorus:

“'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise”

What if the trails that we face with having premature babies are really God’s mercies? This song motivated me to get into the word and seek out the verses’ on “to see” and there wasn’t any on to see but there were some on “sight”. 2 Corinthians 5:7 says “We live by faith, not by sight”. That faith word has surfaced again. We walk by faith, we live by faith. And isn’t faith believing what the eyes cannot see.

http://www.youtube.com/watch?v=eOOFAaUGfRE

Walk By Faith

Jerad and I had a tough conversation with Ms. Susie on Monday. While they were working with the boys, I made a phone call to our genetics counselor as it has been about 9 weeks since Vaughn’s first blood draw and we were curious if any results had come back as Vaughn just doesn’t like to put his feet on the ground, when you lift him into a standing position, he pulls his knees up and if you can get his feet on the ground, then he stands on his toes. Jerad and I knew that one of the tests that were going to be run was a Creatine kinase test, checking out the structure of his muscles and last week Michelle and I had discussed calling to see if there was a diagnosis yet. Both boys just don’t like and I am tempted to even use the word hate, putting pressure on their arms and shoulders so that makes the desire to crawl non-existent. After speaking with our genetics counselor some of the results of the test had come back.

The first round of blood drawn was dedicated to the genetic testing. They started with 3 tests that are associated with the eyes. The doctors’ assumptions are that Vaughn has a syndrome called Lenz microphthalmia. These tests are looking for any mutations in single genes associated with lenz syndrome and microphthalmia (small or lazy eye). The first test was for “BCOR” and it came back normal. The SOX2 and OTX2 haven’t come back yet and we should know about those in May and June.

The second round of blood drawn was for the Creatine kinase (muscles), Thyroid, amino acids and urine acids. The results also were in regarding these tests and they were all NORMAL! This is great news but means that Jerad and I will now add to our prayer list having Vaughn go back under anesthesia for an MRI this summer. Both boys have developmental delays but Vaughn’s seem to be more significant. Vaughn’s developmental delays could reflect central nervous system maldevelopment including neuronal migration disorders. We had ultra sounds done in the NICU for both boys, on their brains to look for any brain bleeds and at that time there were none but the doctors would like to look again now that he is older and showing developmental delays behind even his corrected age.

My heart is grateful that so far, we don’t have a diagnosis but the fact remains that something is wrong. Vaughn’s torticollis is about the same and we continue to ask God for healing. I titled this blog, Walk by Faith because the hard conversation that took place after my phone call with genetics is that there is a very real possibility that the boys will need walkers. Imagine a walker for an elderly person and turn it around and that is the device the boys will need to walk. Asher really likes to stand at his table and play and so Ms. Susie and Jerad and I feel confident that Asher will graduate out of the walker and only need it for a short time as he is learning to walk. As for my super hero Vaughn, we will wait and see. We discussed the reality that he might need the walker for his first day of kindergarten.

Wait and See. I feel like Jerad and I live in a waiting room, waiting to get off oxygen, waiting for the neck brace, waiting for them to gain weight and catch up. Waiting for the helmets to work, waiting for God to be God and remove the torticollis from the list of syndromes that label Vaughn. To See. Waiting to see if the glasses will help Vaughn’s brain communicate to his left eye that it is able to work and see. I asked God for a word, something to hold on to when I feel frustrated and overwhelmed and I love Him so much for His faithfulness as He didn’t make me WAIT for His response. He said, “Walk by Faith”.

I knew right away what He meant, if I walk in the faith that I know and believe in, He will take care of the physical walk.

I turned to the Bible to see how many scriptures reference the word “walk” was in and there are many! The concordance says that this is the definition of walk “to advance by moving the feet; a person’s usual mode of behavior; see STEP, WAY”. A person’s usual mode of behavior…… my behavior is my communication with Vaughn and Asher. Jerad and I have the choice to choose joy in this trial and see a walker as their independence not a handicap. Our physical therapy goal for the boys was to walk by age 2. I am going to change that goal to crawl by 2 and even if we don’t crawl, walking is the main objective anyway. Our spiritual goal for the boys is to teach and train up, independent God loving and God fearing gentleman and if one of the ways they learn this is by using a walker, then my attitude will be full of faith that the walkers will only be used for a season. We serve a big God and trusting Him every STEP of the WAY is my heart’s desire. Thank you Jesus for reminding me yet again, who is in control of our lives. As we camp out in this waiting room, I am going to decorate it to my liking, teach the boys to share and tell them the stories of Noah and Moses. I am going to label our waiting room, Psalm 37 as the theme of this poem is about trusting in the Lord and waiting patiently for Him to act. I will fill this waiting room with laughter, songs and make it a productive time because really, life is about learning to be patient and we are blessed to be able to use these moments to develop our character and grow as a family. This family will walk by faith, even if it looks a little different for each of us.  

The Tortoise and the Hare

It’s hard to be a parent. It’s challenging to make hard decision when it comes to your children. With that said, Jerad and I decided not to get the Botox shot for Vaughn’s torticollis. After a couple discussions and a little bit more research we felt like we wanted a little more time to try to stretch and strengthen his neck. Vaughn has finally turned the corner and is eating 100% table food and we are just so proud of him and grateful that we just needed some more time before taking the extreme measure. We won’t be going to the swallow study after all and that is a huge blessing! We did take Vaughn to the Botox appointment though so we could talk to the Rehab doctor about our concerns and wanting a little more time and she actually agreed with us. We had taken Vaughn to get another x-ray of his neck and spine and she was pleased to see that his neck wasn’t as severe as she had originally thought. We will go back in 2 months to see if we made any progress with more aggressive stretching and re-evaluate at that time if we should schedule the Botox shot. We did learn that there is the start of some mild scoliosis. There isn’t anything we can do for that right now so we will just continue to pray him out of it.

We also had another helmet scan on Vaughn and he grew another millimeter. We didn’t get a print out this time as the moves continue to be small. At first I was discouraged by such a small move, yet again, but have been reminded that we are still moving and that is progress. Since Vaughn is older and most kids are out of their helmet by this age, we are up against time. Time though isn’t an obstacle for God. As I was praying this morning over the torticollis and the helmet, I was thinking of this new toy that the twins received from some dear friends of ours. Michele, Hannah, and Logan had come over to play on Saturday evening and they brought this animal toy that sings and one of the songs is about the slow turtle… And Vaughn loves this song, he plays it over and over and it is driving us crazy (Thanks Michele!) And from this toy, God literally placed the story of the tortoise and the hare into my head. I of course started to cry as He gently reminded me that thought the tortoise is slow, he finishes the race. His strength and diligence teaches us that the journey is the destination. So I will continue to embrace Vaughn’s helmet, his helmet of salvation and trust God that His timing is perfect.

With all that said about Vaughn, I must tell you that Asher is starting to sign! Sign language is important to us and I can’t begin to say enough wonderful things about our team of therapist who are involved in our family’s life on a weekly basis. Ms. Susie who is our PT has such a gentle heart and I believe truly loves our boys, had her son go to the library for us and rent us “Baby Signing Time” DVD. She dropped the video off on Thursday and on Sunday evening, Asher signed for milk! We were overjoyed and couldn’t wait to tell the team. We have been signing a couple signs with the boys for many months now but Ms. Susie knew their love for Baby Einstein and found a video that worked. Last Thursday as Vaughn was having PT and Asher and I were reading a book (this kid LOVES books), we came to the page with a dog on it and I said “dog” and was about to turn the page when Asher said “dog” and did the sign at the same time. Susie and I looked and each other and started clapping and laughing with joy as dog is one of the signs from the video.

I am so proud of my sons. We are on our own timetable and though it can be hard on us, each milestone is a reminder that a timetable is the average and Vaughn and Asher are anything but ordinary. To the Tortoise and the “Dog”, well done!

One Down and One to Go!

Asher has graduated out of his helmet! His last day wearing it was February 25 and his final scan showed that his head circumference was measuring at a 5 which is the goal when we started this journey 4 months ago. His head isn’t perfect but it is so much better and the Doctor thinks that in time, as he continues to grow it will get even better. We are so blessed that insurance approved a helmet for him and that we went ahead and did it as he shouldn’t have any issues in the future. It was worth the time and energy!

Before helmet                                                                 After helmet

Vaughn’s third scan showed some growth but is still at a slow pace (1 mm of growth). We knew he would wear his helmet longer as we have more shaping to do. I am just praying we are out of helmets by the summer when it gets hot. Vaughn has been eating so much better lately and that is a huge answer to our prayers. He eats about 95% table food and this progress has simplified my life and given me the opportunity to start feeding them at the same time! We just might not have to do the swallow study after all. Asher is using a sippy cup now too and so he has become totally independent and really loves to feed himself. Vaughn is holding his cup and understands the concept but still thinks it is a teething item but we are close! Now that Vaughn is eating better, we are hoping that we will see bigger changes in his helmet scans.

Jerad and I took Vaughn for his final blood draw and he gave a urine sample so they can test every possible outcome to try to determine the reason for the delay in the boys. We won’t know much for at least 6 weeks as this testing is expensive and time consuming. Our appointment with the Rehab Doctor went really well, I think it went so well because Jerad and I really like her. She goes above and beyond to make sure Vaughn and Asher have the best care. She is going to continue to follow Asher’s progress but since the helmet worked so nicely and he is starting to bear weight on his arms and legs there isn’t much more she can recommend. She did order another x-ray for Vaughn as I am still concerned about him having scoliosis and while we were there, we also took an x-ray of his neck to see if the torticollis is getting worse as it sure looks that way to us.

The torticollis…. Probably one of the main reasons why Vaughn has such a hard time eating. After much discussion, talks with our therapists and chiropractor (though he wasn’t as thrilled about this as PT and OT) Jerad and I have decided to take the next step in trying to leave the torticollis diagnosis in our past.

 Botox. Yup, Botox for babies.

 I know what you are thinking, we had those same thoughts but hear me out. Botox has been used in the medical industry for many years before Botox was commonly known for its cosmetic effect. The medicine is used to treat spastic or tight muscles and Vaughn’s neck muscles are really tight. Our rehab Doctor will inject the medicine into the muscle to help relax and stretch the muscle. This procedure is commonly used in children with cerebral palsy also. Once the medicine is injected into the muscle the medicine blocks the signals from the nerves to the muscles and weakens the muscle contraction and this causes the muscle to relax. The Botox isn’t permanent and lasts on average of 3 months and the effects will wear off gradually. The side effects and risks are very low and Vaughn will have a follow up appointment 2 months after the shot to determine if the Botox is working and just so he can be monitored closely. Vaughn is getting the Botox tomorrow, so if you could be praying for us as we begin yet another chapter to our already incredible story, we would be grateful. I am standing firm on the hope that Jesus gives and placing that hope in Him and not a medicine. I am confident in my expectation that He does all things for His glory and healing Vaughn of his torticollis, through Botox would be another miracle that would not go unnoticed or unshared!

Their Heads and My Heart

More updates on the helmets! Asher’s last day in his helmet should be February 25^th! There is one more spot that needs to grow and they have shaved out all they can from his helmet so whatever progress is made by then is it. His head is looking great and I am so thankful we were approved by insurance to get him one. As for our little Vaughn, he had his second scan and there wasn’t any real growth. For the helmets to work he has to grow and we have had some struggles in the eating department with our little man. We are praying for a growth spurt for Vaughn so we can see some more big changes in his head. We are anticipating about 3 maybe 4 more months of wearing his helmet. I am currently working to get a swallow study ordered for Vaughn so we can rule out any medical/mechanical reason for the delay in eating table foods. Jerad and I also took Vaughn to have the first round of blood drawn for his genetic testing. Because he is so small and they needed such a large amount of blood, we have to go back later this month to finish the rest of the tests. We see the Rehab Doctor next week to find out what the next steps are regarding the torticollis in Vaughn’s neck. Unfortunately the torticollis isn’t getting better since he has been wearing the helmet. Some good news for Vaughn is after seeing the Eye Doctor yesterday she said, from what she can see, he is using his left eye and it is the same vision as the right eye! That is a relief as back in August he didn’t appear to be using his left eye as much as the right and the vision wasn’t as good. The Eye Doctor did say though that this most likely will change again and if Vaughn is still in his helmet and not keeping his glasses on, we will have to patch his good eye (the right eye) for a couple of hours a day to get his brain to keep using his left eye. Won’t that be a sight! Vaughn will be our little football pirate dude!

This blog is all about my boys…my heart behind it is so we can not only have something to look back on many years down the road but so our family and friends can know what is going on with Asher and Vaughn. That each of you can pray alongside us in this journey and that maybe someday another Mom or family will be in our shoes and be able to read this blog and know that the helmets aren’t too bad and all the therapies’ do pay off. Speaking of therapy our PT tells the boys “WOW” when they do a good job and Asher started to say WOW and it is just the cutest thing!

My heart though wants to share a little bit about how it feels today! I was driving to Brighton the other morning to pick up the twins from an overnight with my parents and the song “Wanted” came on by Hunter Hayes. I am not sure if you know this song but it is literally the words right out of my mouth to my Husband. I hear this song and it just brings the best memories of Jerad to my mind and it is my heart’s desire to make him feel wanted daily. I am proud to be his wife and humbled at how hard he works for this family. As I was singing my heart out, alone in the car a wave of emotion came over me. I thought…. This is also my love song to Jesus! I want to make Him feel wanted too! When you are in an intimate relationship with your Savior and King, you just want to wrap your arms around Him and tell Him that I would fall apart without Him. In a country where “In God We Trust” doesn’t really mean anything anymore, all I want to do is show how trust worthy He is and tell Him, He is WANTED. I just wanted to share this song today and leave you thinking about the words…..

http://www.youtube.com/watch?v=ruyaKdPfTN4

PS. Izzy- if you are reading this, you are missed and wanted.

Whole Milk and Haircuts

Two new first for the Allbritten twins! We started to very slowly add whole milk to the boys’ bottles as the Pediatrician said it is time. I just love new milestones! And Vaughn and Asher had their first haircuts! I have to be honest and say that it did not go well……Vaughn didn’t mind it but he started out crying and then pulled it together towards the end but poor Asher, he is so sensitive….. he was a wreck. He did not enjoy himself! L I have some pictures and just want to say THANK YOU to Jen my friend for working through the tears and giving the boys such adorable first cuts!

We are growing up....

Good news! Vaughn has graduated to see our Chiropractor, Dr. Ryan to 2 days a week. Asher should only be in his helmet another 4 weeks! Some big milestones are taking place this month and we are grateful. Vaughn still has another 3-4 months in his helmet but we got his first scan and there was progress. Which means our little man is growing. We had our 1 year check up with the Pediatrician and Asher is weighing 19lbs 2 ozs and Vaughn is 16lbs 5ozs. The boys continue to stay about 3 lbs apart.

                                          Vaughn’s first scan (wearing his helmet for 4 weeks): The inside circle is his first scan before wearing the helmet and the outside circle is the progress he has made!

                                        

                                                                     

                                           Asher’s second scan (wearing his helmet for 8 weeks):

Asher wanting to help take pictures!

                                                                         

As we let go of one weekly appointment we are blessed to say we are picking up a new one…. This one though is very unique in character because of the therapist. Vaughn and Asher are starting speech therapy this week and I am humbled and excited to say that it is their Auntie Michelle that will be teaching and training them! Michelle and I have talked and prayed about this move and for now we fill like it is the right decision, though I have given her full permission to fire me (recommend a new speech therapist) at any time if mixing friendship with business gets tricky. I feel at peace knowing Michelle, on a professional level will help me raise my voice, and shout loud if needed to advocate for my sons. I know her insight and wisdom into the boys care will give Jerad and I a strong approach to what avenues should be taken (or not taken) to strengthen their abilities. After a hard conversation with Michelle, and many prayers, Jerad and I are going to move forward with the genetic testing on Vaughn. We are going to have the next round of blood drawn on him but we are going to wait for the results of that test before we have the MRI done. Thank you Michelle for loving Vaughn and Asher so much and being willing to walk this journey with us.