we all miss her!
TRANSCRIPT
- 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!
Thank you!