Thursday, February 13, 2014
Tuesday, February 11, 2014
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.
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
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.
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.
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.
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.
Please share my page with everyone you know!!
Wednesday, February 05, 2014
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
2. What is the story behind your blog name?
3. Who is/was the most influential person in your life?
5. If you could attempt to do something, and not fail, what would you attempt?
6. What is your favorite memory?
7. If you had to choose between makeup and hair products (shampoo, etc. not included), which would you choose?
8. Do you have a significant other? How did you meet?
9. Favorite animal?
10. Do you have any hobbies, besides blogging?
11. Top three favorite blogs/bloggers.