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, March 12, 2009
My 1st Birthday!
Well I celebrated my first birthday on March 10! It was a bittersweet day because we had a funeral for my great grandma Madeline on the same day. I will miss you great grandma. I thought it was really cool when all the people at the funeral luncheon sang me happy birthday! I was all smiles...big cheese. I didn't like my cupcake...I threw most of it on the floor. It was a dairy free chocolate cupcake and I even gagged on it. Mom is going to try a new recipe for my little celebration with the whole family on Sunday. This time she is going to try vanilla with "butter" cream frosting. The chocolate cupcakes were from a box. I don't really like sweet foods anyhow. I love my liquid meats and my favorite veggie is peas. I am like an old man when it comes to taste. I love savory, salty foods...I need the extra sodium though so that is good. I could use the extra calories from the sweets though!
Mom and Dad didn't have their camera while we were out on my birthday so we don't have little video to share, but there were a couple of pictures from my grandmas camera. Mom and Dad told me they will get a video of me on Sunday.
The first year of my life has been one crazy ride, but I am doing very well now. I am getting my top two teeth and standing up all over the furniture. I think I will be walking soon. I am still a very good boy when I get put down for naps and bed time. I love to stand in my crib and play with my IV pump. I have to be careful though because I tend to wrap myself up in my tubing...kind of scares Mom and Dad. I also have a CD alarm clock that blinks 12:00 and I love to look at it. Just like Tom Hanks had a volleyball named Wilson I have an alarm clock named Sony.
Well I have to get back to my nap...I had to get three shots (Synagis (2) and Prevnar) yesterday and my teeth are killing me!
Life is good~
Ben
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6 comments:
Happy Birthday Ben! You are such a sweet boy and you have a great arm. Nice throwing! Hope you like your next birthday cake better. Enjoy your party.
Love,
Chris, Jen, Logan and Delaney
XOXO
We are very excited about Sunday! We all can't wait to see you! Love you tons! Love, Auntie Annie
Happy Birthday buddy!
Hi Beautiful Benjamin,
I miss Grandma Madeline too, very much. She will be looking down from heaven on you Sunday as we celebrate your first year. If everyone who reads your blog will make a donation to Ben's Buddies Great Strides, someday there will be a cure for CF. We love you Ben, God Bless you, Grandma Carol & Papa Phil
Ben,
So glad your birthday was good. I still can't believe it's been a year since we met...we'll you and I have never officially met, but you know what I mean!:) So sorry to hear about your grandma...she'll take care of you from heaven!
I finally made it out of the hospital...don't worry I gave them all kinds of grief!! I am feeling fantastic and I can finally breathe! When we got home I was running around like crazy....my mom told my dad to put some money aside because she is going to need a serious dye job for her hair....something about all the grays I'm giving her!!
Take care and keep up the good health!!!
Your friend, Cameron Hain
listening to him giggle/gurgle/squeal on that video is the best. he has a good arm on him. much belated birthday love from across the sea.
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