we all miss her!
Post on 01-Jun-2015
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- 1. We All Miss Her!
BRING BERLYN HOME!
2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. 27. 28. 29. 30. 31. Berlyns Story
Berlyns Story (from Carepages)
Hi! My name is BerlynAlfredsen. I am five years old and this is my crazy story. I have lived with my adoptive moms since I was three months old and I have a sister ("sissy") who is my idol. When I was just a few months old, I couldn't tolerate any food - I just threw everything up. Doctors can't really explain why my intestines didnt work, but they believe that the exposure to narcotics and opiates before and after birth played a part. Since that time, I have had hundreds of days in the hospital, countless procedures and surgeries including 1 islet cell transplant and 1 small bowel/pancreas transplant, many tubes, pokes and meds. Of course, through it all, I always make my moms, doctors, nurses, and everyone around me laugh. They tell me that I am very funny!
Nearly two years ago, I had a huge surgery in Omaha at the University of Nebraska Medical Center. The doctors decided I would be one of the first and the youngest patient to receive an islet transplant (islets produce insulin within the pancreas). They removed my pancreas, gall bladder, spleen and part of my intestines. Then, they took the islets from my pancreas and transplanted them into my liver. The results were awesome! Because my liver made more than 80% of my insulin, I needed only small amounts of injected insulin and I have had no more pain from my pancreatitis attacks. The goal of the islet transplant was to help with the pain and buy me some time to get older and stronger. I needed this time to get ready to deal with my real issue my intestines not working.
As great as this was, it was only a small part of my struggle. I still couldnt eat or have a feeding tube to my stomach, since my small intestines didn't work. So I received TPN. This is an IV into a vein close to my heart and contained all of my nutrition, broken down into IV form. It was great to get the nutrients I needed to grow, but it could be a drag. I was hooked to an IV pump (in my stylish pink back pack) 24/7, which could be a pain when you want to jump and play. My moms had to worry all the time about fatal IV infections. I couldn't get my bandage wet, so baths are limited to once or twice a week when I get my bandage changed - I lived for those days! Swimming was definitely out of the question. And the real down side is that the TPN eventually causes liver failure - sometimes it comes in months, sometimes years. My liver tolerated the TPN well, which gave me a chance to wait until I was a little older to have my small bowel transplant.The effects of the TPN, a life threatening fungal infection, and the loss of my veins needed for the TPN line led to me being listed for a small bowel and pancreas transplant in September 2008. We had two calls in which my moms raced me to Omaha only to find out that the organs were not good or not a match. On Nov 17, 2008, we received "the call"! On Nov 18, I had my transplant and received a new small bowel and pancreas. My liver was doing so well, that I got to keep my own. As brave as I am, this was a tough transplant. But, so far, minus a few hospital visits and some scary days, things are going well.Every day is a new adventure for kids like me, so check my updates to get the latest news. Though Im only 5, I think I have some wisdom to share: Make every minute of every day count. Sing - cuz it makes you happy. Live life to its fullest - you never know how long you have!
32. Don't sweat the small stuff and enjoy not only the big things in life, but also the little things every day. And - ask lots of questions!Love,Berlyn
(sorry, the information in Berlyns story is old, but it does tell some of the battles we faced with her on a daily basis. Now that she is not in America with us, there are new daily battles, for myself Berlyns sister Liberty, Her mommy Wendy, and the many that have been touched by her story or been given the chance to meet her. )
I want to personally thank all of you who support getting my sister back! And to any of those in family situations, like ours, We know the pain, and no matter what, NO ONE SHOULD LOSE THEIR FAMILY!