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.
Sunday, November 23, 2008
Bouncing Boy
I am a very happy boy. I love to eat my cereal. I am now on the vanilla flavored Elecare formula. When mom mixes my makes my rice cereal with the vanilla formula and extra virgin organic coconut oil it smells and tastes like cake batter. I get excited when I watch Mom mixing it all up. Mom hopes this doesn't deter me from eating my veggies when I get to try those. I am starting to move around in my crib. Mom has to call the doctors tomorrow and ask what the next step is for the NG feeds. Since I have a tube running from the feeding bag into my crib and it attaches to the tube on my face. Mom and Dad worry I could roll over and wrap the tube around my neck. We took out the NG last night. We started doing night feeds by bottle last night. Mom got up at midnight, 3:00am, and Dad took the 6:00am feed. We have to make sure I get the night feeds because they add a lot of extra calories to help me grow. If I gain weight this way this should prevent me from having to get a G-tube. Keep your fingers crossed that this will work. I love the activity center my Great Grandma Pawloski bought for me. You can see me in it on video. Mom went to see her friend Laura in Chicago last weekend. Dad and I had a fun weekend together. Mom and Dad also had their first date night, just the two of them, since I have been home. They went to see a movie and had dinner on Friday. Grandma Carol watched me.
Bounces,
Ben
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13 comments:
Hey baby Ben,
Everytime I see new pictures of you I get a big smile on my face. You are such a handsome young boy. I love you honey....... Great Aunt Jane
P.S. Tell mommy and daddy we all say Hi
Hi Ben,
You are looking so handsome, getting so big and strong! Keep up the good work. Have a Happy Thanksgiving!
Love,
Meg R.
Keep up the great work! You are getting so big and are so handsome! Hugs!
Jen Sweets
Hey Ben, it's Aunt Carin,
Great job at getting chubbier! In no time you'll have as many chins as me ;-)
Be careful with that tube, but don't stop moving around, either. You are growing by leaps and bounds now, and there's no need to stop!
Keep eating your "cake"...because you can have it and eat it, too!
I love you and miss you ooodles & gobs. Tell mom & dad to have a great turkey day...and just as a heads-up, the adults will probably take lots of naps that day. It just happens. Oh, and the Lions will probably lose, but that hasn't ruined the last 4 years!!
xoxoxo
Hello Benjamin!
Boy you look good in the bouncy seat. Great Grandma picked a wonderful thing for you. Tell mommy and daddy that it's great that they went out on a 'date'. Did you tell them no mushy stuff in the show!! I bet they really enjoyed themselves. See you soon.
Love and Kisses Aunt Margo and Uncle Richard XOXOXOXOXOXO
Hello Benjamin!
Boy you look good in the bouncy seat. Great Grandma picked a wonderful thing for you. Tell mommy and daddy that it's great that they went out on a 'date'. Did you tell them no mushy stuff in the show!! I bet they really enjoyed themselves. See you soon.
Love and Kisses Aunt Margo and Uncle Richard XOXOXOXOXOXO
Hi Bouncing Ben,
Wow, you are really enjoying life and we're enjoying watching you from West Branch. Tell your Daddy and Mommy thank you for posting all of the wonderful pictures and videos. We feel like we're right there watching you everytime there is a new entry in your BLOG.
Happy Thanksgiving,
Aunt Kathy & Uncle Mike
Good Morning Ben,
You are getting sooo big! Great Grandma and Uncle Norman couldn't stop talking about how happy you were when they visited and how you bounced in your activity center. We all love watching you grow into a happy baby. Like your daddy when he was a baby, you love being carried around, grandma thinks you may be getting a little spoiled but that's okay - babies should be spoiled. Tell mommy and daddy any time they want to go out on a date to give us a call since we love babysitting. God Bless you, mommy & daddy, Love you all bunches, Grandma Carol & Papa Phil
gobble gobble ben! mmmm cake! sounds delicious...no wonder you smile when you smell and see your mom mixing it up!! hope you and your mom and dad and the rest of the family have a great turkey day! keep up all the great work!
lots of love
meghan
Hey Ben, Aunt Carin again,
Just wanted to say that this Thanksgiving I am most thankful for you. You have brought so much happiness into so many people's lives & I love you for that!
I have your pix with Santa at my desk for the world to see. You're the best!
Thank you for being you! Now wipe that cranberry sauce off your chin ;-) XOXOXO
Hey Ben "jumpin"
White boys can jump. Loved the video lil man. You look great. Keep on keepin on!! Love Uncle Gordy and Great Aunt Claire
P.S. Send our love to your Mommy and Daddy we miss you all so much. Go Spartans!!!!!!!!!
Alright ya little stinker, November 23 was so long ago...what's new?! Hope you're enjoying the holiday season and all the pretty lights everywhere!
Miss you and love you. Hugs & kisses to you, mom & dad, xoxox, Aunt Carin
Hello Ben,
Your room mate Ja'Niya, you are getting so big, I thought I was gaining weight!! That bouncing is great, don't bounce out of it.haha.
Well check you out later keep up the good work.We are still praying you and I can see God answering our prayers.
Tell your parents hello for me.
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