Hello everyone! My name is Ben and I was born March 10, 2008. I have Cystic Fibrosis and Short Gut. This is all about me and my determination to find a cure for Cystic Fibrosis. I was born with a blockage in my small intestine. This caused a large part of the intestine to twist. When I was 12 hours old I underwent surgery to remove the bad parts. I have about 40-50cm of good intestine remaining plus a healthy ileocecal valve. On March 22, 2008 I was diagnosed with Cystic Fibrosis.
Monday, November 10, 2008
Mr. Independent
I finally got to try rice cereal for the first time. I was so big I even held my own spoon. I am up to 23 k/cal formula. My TPN has gone down to 4 days a week. Soon we will add brown sugar and butter to my cereal, but Dr. Brown said one thing at a time. We want to add things slowly in case it causes any gut issues. I need extra calories because of my CF, so we always have to find creative (yummy) ways to keep me packing on the pounds. I am doing well and weigh 14 pounds. I have been a bit crabby lately and I like Mom and Dad to stand up with me. I know when they sit down and I let them know I do not like it. I think I might be teething and that is making me finicky. I saw snow for the first time today. I woke up and watched it fall through my bedroom window. I thought it was pretty neat.
High Five,
Ben
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13 comments:
Oh Baby Ben! I don't even know if we can call you Baby anymore! That put tears to my eyes! I love you so much! and Big Girl Emma can't wait to see you again! She talks about you all the time, and for some reason she talks about Uncle Chris a lot too! Strange! haha Love you all! Can't wait to see you guys!
Hi Beautiful,
You are such a big boy - we are so happy you've come so far in the past month. When you get bigger Papa Phil will make you oatmeal. He makes the old fashioned kind, and it is really good - he's the official Pannecouck oatmeal chef. God bless you and love you all bunches & bunches, Grandma Carol & Papa Phil XOXOXOXOXOX
Way to go Ben! Keep up the great work!!! Hugs from GA!
Chris, Jen, Logan and Delaney XOXOX
WOW -- brown sugar is yummy! lucky lil guy! 14 lbs - holding your own spoon - teething - crabby!!! getting so big in so many ways! you and i have different feelings about the snow...but i'm so glad you got to see it for your very first time. you are doing amazing! keep up all the great work.
lots of love
meghan
Hi Ben,
That video was so cute!!!!! Sounds like everything is going great and that makes me happy. I love you and your mommy and daddy lots. Great Aunt Jane
Hey there Squeaky LaRue, it's Aunt Carin :-)
Thanks for having lunch with me - it was so good to see you again. Yeah, I know...I'm sorry about all the icky girlie kisses, but I had some catching up to do!
Tell mom she's a hottie-mo and is looking great. And tell your twin (dad) that you guys take pretty good naps together.
Giant hugs and oodles of love to you all! Bubbles!
Hey Benjamin,
I have been checking in on you from time to time via this blog site and it is very nice to see you are doing so well. Mom and dad seem to be doing pretty good too. I was actually one of the nurses that took care of you when you were at Beaumont. Just wanted to say hi...and how happy I am to see you are growing so big!!!
Kerri
Hey Big Guy!
I have to say I'm not the greatest at this blog thing but I'm forunate enough to get picture updates of you every other day from your mother and puts a smile on my face everytime. I'm so very proud of you and thankful to have such a beautiful nephew. Your video of you eating is absolutely hilarious. I truly do miss and love you and your parents. Keep up the good work. Go Green!
Love
Uncle Adam
So happy to see all the improvments. You all have been in our thoughts and prayers since we left three weeks. We had a great trip to China . WE hope to see you all soon. Love and Prayers, Great grandpa and grandma Robke
Hey There Big Hansome Boy!
Been getting updates from Bamma. So happy to see your new pictures and video.
We still think about you and your folks all the time and sending hugs and prayers. Loved the costume!! What a hoot!
Love The Raspons
Benjamin the Beautiful!
Boy you are the most beautiful baby I've seen lately. And, I've seen a few at my work. We just had 4 new babies and you top them all. What a set of rosie cheeks you have!Keep putting on that weight.
No deer for Uncle Richard yet.):
Hope to see you soon. Much Love and Kisses XOXOX Aunt Margo
Hello Ben! I must say your are handsome, adorable and Mr. Personality plus! Your dad told me all about you at Dr. Biedermans dental office. He is so proud of you and your Mom! Maybe someday you will come in to see us at Dr. B's when some of those teeth come in. Keep growing big and strong! And keep laughing that contagious giggle. It brightens up the world! Happy Thanksgiving to you and your family! Kathy
Baby Ben,
You are so beautiful! Were happy to have you as a family member. We love the video of you kicking in your seat its adorable!!! Your making great progress. You are so cute! Love you lots! The Domines
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