Thursday, February 13, 2014

Vday swap box

      Let's show some Valentine love, back in January I joined up with Rachael from The Rachael Way, Ashleigh from The Darling Prepster and Mandee from Life, Chaos and Quotes for a Valentine's Day swap box. I usually don't get any gifts so I thought this would be fun.
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I got matched up with an awesome blogger and new friend Ellen from Ask Away Blog
We got to email each other for a few weeks, get to know each other's likes and then pick out a Vday gift for them. It was really a lot of fun. She is awesome and her blog really rocks so make sure you check it out!
I loved my gifts she picked out for me. And they all came individually wrapped in pretty pink paper. And also a sweet little note (or for Vday, we will call it a love letter) 
I loved opening up all the little packages, and my boys even helped. First of all let me just say, she really nailed it. I never get anything for myself or take time for myself so I needed all of these gifts.

I have already worn my shirts several times and my lotion stays in my car, because I apparently always realize my hands are dry when I'm driving. And there was a cool little strap you hook to the back of your phone to help you hold it one handed.. yeah totally love that.
Thanks Ellen!
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Tuesday, February 11, 2014

the day my life changed

The day that changed our lives took place in the hospital where we had taken Zach for an intestinal transplant evaluation. He had been surviving by TPN through a central line in his heart for the past 8 months, and before that through feeding tubes in his stomach and intestines. He was only 2 years old, and had spent most of the past year in the hospital without being able to be a kid. And even when he was out of the hospital, he was confined. Confined due to tubes in his body and iv lines being hooked to heavy bags of liquid nutrition and bags of fluids, and due to the risk of illnesses because his immune system was so greatly compromised. His IV pole followed him around the house, from the time he slept in his bed to the bits of time he had energy to play. He was always hooked up to some sort of pump.

Zach had intestinal failure with pseudo obstruction episodes, which meant that his intestines were no longer working. His stomach didn’t absorb or digest formula anymore and was hooked up to a bag to drain the fluids out of it 24 hours a day. And his intestines no longer tolerated the enteral feeds except at a very slow rate to basically try to keep infections down. When his pseudo obstruction episodes hit, he would vomit and gag uncontrollably for hours and days, and be in tremendous pain. He would have to have his stomach hooked to a suction machine to try and prevent some of the vomiting.

His days at home were always short lived, the fevers and infections always returned, FAST and more furious than before. His hospital stays included blood transfusions, surgeries, and high powered IV antibiotics. Never the life we imagined for our sweet boy. We took him to several hospitals in attempts for answers, and that is when our lives changed.

He had been sent to Pittsburgh for an intestinal transplant evaluation, a very invasive and dangerous surgery. There we saw a neurologist who performed several tests and told us that the probability of Zach having a progressive and fatal disorder that in most cases kids diagnosed this young don’t live past 5 yrs old, was very high. And at that point, the doctors decided he was not a candidate for a transplant, they could not do a transplant knowing that it would not make a difference in the end. They decided there was nothing they could do to help us.

Shortly after that, we heard from Make a Wish. Zach was going to get a chance to be a kid, and to forget about all the illness, and hospital stays and medications for a week. Remembering the day they came to the house to ask this sweet 2 year old if he could have or do or be anything, what would he choose. He knew and answered without a doubt that he wanted to see “Mickey Mouse House”. The smile on his face was priceless. He wanted this, he needed this so much.

During the months while we were waiting on his Make a Wish trip to be finalized and planned, Zach was hospitalized several times a month due to sepsis. He spent many days in PICU hooked to machines and pumps, and having his central line replaced had become routine. But we also learned that his liver was showing some damage from the TPN and he was losing his vascular access. He already had lost of his IV access, so when it came to removing and replacing his central line, it was very risky.

So his doctors decided that though he was not a candidate for a transplant, we could try intestinal rehab in hopes we could force his intestines into working again. Which basically meant that for 2 months, they slowly went up on feeds through his intestines to force them to work. So for us that meant, sitting beside my sweet boy as he vomited, gagged, screamed in pain and slept and not being able to do anything to help.
Zach had been through so much in his short life already and this seemed like to us total torture, but we went through it. It was our only option at this point. If he lost any more central lines, it could be the last. Every replacement meant another surgery, another anesthesia, another race to get it him surgery before his sugar dropped to dangerous levels. Every infection meant new bacteria, more antibiotics and antibiotic resistant bugs. He was in such a dangerous place with his health. When he got sick he could go from normal to 105+ fevers in a matter of minutes, and with his fevers came his autonomic dysfunction symptoms.

So we went with the plan, we drudged on through the pain, through the vomiting, the screaming, the heart break. It was the longest 2 months and so hard to sit and watch your child suffer.
In retrospect, I am glad we did, he survived. He got to come home with no central lines, surviving
on enteral feeds alone.

To explain my feelings during all of this, is simply not in my capability. To be told that your son would not survive and to see him in the state he was in so many times was unimaginable. I have never been a person to show my emotions to everyone. I would wait till I was in the car on the hour drive back to my see my other son, who would have to go days without seeing me, and I would cry. I found myself in love with a song by The Band Perry, If I die young.
Something I never wanted to imagine but was so much a reality. And I prayed, it's all I could. I felt helpless and alone. Trying to talk to friends or family was a mess, no one completely understood what I felt.

February 13th marks 2 years since Zach came home from the hospital after his rehab was over. 2 years since his central line was removed and he got his life back. 2 years of not being afraid today would be the last day I got to hold him or see his sweet face

Thursday, February 06, 2014

I signed up for what??!!!


Yeah not sure what I was thinking when I signed that paper. I have never done a hike before, well not one that I wasn't just leisurely walking along. But I just felt like this was calling my name. Its new and different and completely out of my comfort zone. And the fact that I will be alone, 4 hours from home. Not alone in the sense of no one is around because there will be 75 of us hiking together. But that's 75 strangers.
My family will be at home, this is my journey. I feel this journey means to me than I can even put into words. 
This hike, is a commitment of my gratitude for in my opinion the best organization. 
Make a Wish
A completely non profit organization that grants wishes for children with life threatening 
medical conditions. 

They did this for us. If you are wondering why I am so committed to giving back and helping them raise money. 
This is why...

Zach got his wish granted in October 2012, he wished to see Mickey Mouse House. I can't express how much that week meant to us. The smile on his face meant he was better. 
Make a Wish does more than grant wishes, they bring hope and joy to families. They cure cancer and other illness for a week. That week of no doctor appts, no hospital stays, no thinking about what its or not feeling well. They give children a week of being a child.

This is the 2nd annual Trailblaze Challenge
 That's 24.1 miles in one day along the Bartram Trail in the NC mountains. 
It is going to be strenuous, hard and life changing. But I have no doubt I can do it. I always think about everything Zach went through and always had a smile on his face. He is my inspiration. 

The goal of the Trailblaze Challenge Is to raise $2500 to help grant more wishes. So please help me.  Any amount of donation is greatly appreciated and 100% of the donations go directly to Make a Wish. 
You can go to my fundraising page Crystal Voss Trailblaze Challenge and read more and make a secure online donation. Or you can always mail in a donation, just click on link and print out form and mail it in.
Donation Form for mail

About Bartram Trail
  Located near the mountainous towns of Franklin, Highlands and Nantahala, the Bartram Trail in North Carolina meanders around 78.4 miles of the approximate route 18th-century naturalist William Bartram journeyed in North Carolina in the 1700's. The Bartram Trail boasts some of the most scenic mountains in North Carolina with elevation reaching 5,385 feet, providing hikers with spectacular views of ridges and valleys.

Our Section Of The Trail
The trail (24.1 miles): Commencing at Appletree Campground in the upper Nantahala Gorge to Nantahala Lake, the trek ascends and briefly joins the Appalachian Trail from Winespring Bald to Wayah Bald.The top of Wayah Bald, at 5385 feet, is the highest point on the trail which then descends the Nantahala Mountains finishing the adventure outside Franklin, NC.*The 15.6 mile option will start at Saw Mill Gap and end outside Franklin, NC.

About Make-A-Wish
For children who face the overwhelming odds of a serious medical condition, the bad times can be truly devastating. Make-A-Wish® exists to remind kids of all the amazing possibilities of life and to help them through the most difficult parts of their journey.

Fundraising Page

Please share my page with everyone you know!!
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Wednesday, February 05, 2014

Award time

I am happy to say I was nominated for a Liebster award this week, by Tabitha over at A Hundred Tiny Wishes, which is good because I have been in a major writing funk and this definitely gave me a topic to write about.

The Rules:

1. You must link back to the person that nominated you. A BIG THANK YOU TO Tabitha for nominating me!
2. You must answer the 11 questions given to you by the nominee before you.
3. You pick 11 nominees with under 200 followers to answer your questions.
4. You cannot nominate the person who nominated you.
5. You must tell the nominees that they have been nominated by you
The questions that I have been given to answer are:
1. How long have you been blogging?
I started blogging in 2010, at first just to keep everyone updated on the health status of my youngest son who has a chronic illness and was very sick. But now it has turned into a great love of mine and a place I can share anything.

 2. What is the story behind your blog name?
Both of my boys are have special needs, each different but both providing their own challenges. I chose Our Kind of Special as the name because they are one of a kind and both special.

 3. Who is/was the most influential person in your life?
My best friend
4. Do you have any pets? Tell us about them.
my boys have a brand new kitty, who is still nameless at this point. She is a 5 month old rescue from the local animal shelter. She is still new to us, but is very sweet and loves her belly rubbed.

 5. If you could attempt to do something, and not fail, what would you attempt?
I would want to be able to see the world through my oldest son's eyes, and to feel things the way he does, to experience emotions and struggles the way he does everyday. I would never want to change who he is, his talents, his imagination, his smile but if I knew what it meant to be him. I feel I could make his world easier and better fit for him.

 6. What is your favorite memory?
I think my favorite memory is hearing my first son's cry when he was born. He came into this world 8 weeks early and by emergency. He was a miracle from the day he was created and to think that he would not be here if he hadn't been delivered 8 weeks early.

 7. If you had to choose between makeup and hair products (shampoo, etc. not included), which would you choose?
This one is hard for me, most day I don't even wear make-up and when I do, it is very little. I am not one for going places that I have to really dress up for or get fancy on the make up. And the only hair products I use are mouse and occasionally hair spray when the static is bad. So to choose between them....hmmmm I would go with the hair products, I can pull off the messy up do

 8. Do you have a significant other? How did you meet?

 9. Favorite animal?
My favorite animal ever is an elephant, they are majestic, and when I was younger I read a book written by Cleveland Amory about his rescue sanctuary. It made me completely hate and boycott Ringling Brothers circus for the way they treated them. I also hate watching the shows that show "when animals attack" and show elephants. It's not fair. I am a huge animal lover, always have had animals. I grew up with horses, cows, pygmy goats (who would follow me around like puppies), dogs and cats. Probably why I have mostly always worked in an animal atmosphere. Nowadays though, I am only sharing my love with cats, just not in a place to have a dog yet.

 10. Do you have any hobbies, besides blogging?
I like to exercise and run. I participate in obstacle races and just signed up for a 24 mile hike in the mountains of NC. I enjoy anything to do with boys, and everything they like. They are my main hobby right now, we do everything together.

 11. Top three favorite blogs/bloggers.
Voyage of MeeMee- because she is so freaking funny!!! Her blog always always cracks me up and honestly think we would be great friends, I would so totally blate her <3 div="">
Busy Budgeting Mama- she is so down to earth and her kids are the cutest. She is everything I would love to be blogging, she is awesome with her kids, makes the cutest crafts and host parties all the time. And she and her husband have the best relationship and are so cute together.
Queen of the Distracted- an awesome adhd blog, she is so funny but truthful about her experience with her kids and husband having adhd.
My Nominees:
Jessica @ Just Jessica
Krystal @ Kinky.Love.Faith
Mindy @ Best.Day.Ever
My 11 questions for them:
1.Is your blog everything that you dream of it being?
2. If you could live out your number 1 passion, what would it be?
3. What blogger do you most feel like you relate to and why?
4. Where is the one place that you want to visit before you die and what do you love about that place that makes you want to visit it?
5. What would you if you only had 1 day to live?
6. If you had a chance to tell someone something that you have regrets for not saying before now, what would it be?
7. What is your favorite all time movie?
8. What are your top 3 girl crushes, everyone has them so don't be shy?
9. What qualities matter most to you in a significant other?
10. Do you believe in love at first sight or knowing they are "the one" from the start?
11. What are your top 3 TV shows?
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