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.
Thursday, October 16, 2008
3 pounds in a month
I went to see Dr. Brown yesterday and I weighed 12lbs 1oz! The intestinal rehabilitation team was very impressed with my coolness. I have been doing very well and growing like a champ. I have filled out a lot and I don't look like a white Ethiopian anymore. I am still on TPN and tube feeds at night. I will be on both of those for a while since it seems to be working. I am getting excited for Halloween. I have 6 costumes to pick from. Mom bought out all of the stores and we are not sure what I am going to be yet. Mom mentioned something about taking pictures of me in all of them so when I am older we will remember my first Halloween.
Life is good :)
Ben
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15 comments:
Hi Beautiful Benjamin,
What a big boy you are in your new video and pictures. You have grown so much since we saw you on Friday. Sleep tight and God Bless you sweetheart. We can't wait to see you next week. Love you bunches and bunches, Grandma Carol & Papa Phil
Yea Ben!!! You are growing so big! We are really excited for you. I love watching you smile and giggle in the video.
Tell Mom, if the tube feeding works than great! I deal with it all day long with my kids in school and it is not so bad.
Keep up the great work. We love you!
Chris, Jen, Logan and Delaney
Hey there Benny Boy!
I haven't seen you or your folks in too long, but I think of you often. I'm glad it sounds like you're all doing wonderful. That's great to hear and I hope things only get better with every day. I can't wait to see what costume mom decides and see the pics :-)
Miss and luv you guys,
~Michelle
Hi Ben!! I am so proud of you, you are growing so much! I love watching videos of you and seeing you laugh and smile! I love you bud! Keep up the good work!
Love,
Aunt Jess Xoxoxox
WOW -- Benjamin, you don't even look like the same little boy. Keep up the great work; we love watching your progress. It is about time your Mom & Dad get to enjoy having a bouncing baby boy around.
Aunt Kathy & Uncle Mike
Baby Ben,
I hadn't looked at your blog in awhile and I was checking the updates. You're a beautiful baby keep growing. I love you lots.
Love Always, Hi to dad and mom.
Great Aunt Pennie
Ben,
I'm glad to see you are doing so well! Love the videos, you have the legs of a soccer player! Keep up the good work and I can't wait to see Halloween pictures.
Jill L.
Hello Benjamin,
This is Ja'Niya's granny I wasyour room mate. Kati Ben is getting so big we are still praying for him and when I go to church they ask about him.Ja'Niya is doing fine eating like a pig!!!!!. kEEP UP THE GOOD WORK, God is with you
Helen & Ja'Niya
Wow, Ben. You look great, chubby little cheeks and everything! Awesome. We're glad everything is going so well and can't wait to see you!
Love you guys!
Carrie & Brian
Our Beautiful Ben!
You are doing so well! What a lot of weight to gain in just one month. Keep up the good work. Matt and Kaitlyn send their love and kisses. Uncle Rich and me send our love and prayers! Sleep tight and keep gaining that weight. You look so good in the
brown cap. I think that's my favorite picture of you. Much Love and Kisses XOXOXOXO Aunt Margo
Hi Ben:
We are sooooooooooo excited that you are gaining weight and looking so bright. We pray for you every night and hope that someday soon we will get to meet and play with you. Uncle Todd's Mom and Dad
hey ben! love the new pics -- you really are getting so big and that makes me very happy. you are such a handsome guy! i'm with your mom and vote for pictures of you in all the costumes...your mom must be very excited for your first halloween to have bought you so many...gigooh. miss and love you all.
lots of love
meghan
Hi Ben,
Your video is soo cute! You are getting so big. Keep up the good work!
Your friend, Cameron Hain
Hey peanut! But if you keep getting so big, we won't be calling you peanut anymore. Those cheeks! I love those cheeks! JD can tell you that I am a sucka for cheeks!
But, tell mommy that you have a similar problem to Ellen Degeneres. That plant right behind your head needs to be moved! Ha! You have a mohawk! HaHa!
Happy Halloween! See you soon.
Lots of Love - JKJ
Hey Benjamin!
I can't wait to see those Halloween pictures. I haven't visited your blog in a while but you just know that you're in our prayers every single day.
Marty and Virginia (my sister and brother in law are really good buddies of your Grandma Carol and Papa Phil)
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