Benjamin Anthony

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, February 6, 2012

New Year, New Heavier Ben

Ben had a PEG Tube placed on Jan 13th. He had not gained any weight in over six months. We always knew it was a possibility he might need one to help him gain weight. His body just needs more calories than he is eating. Having Cystic Fibrosis and short gut does not help in the weight department. His BMI fell off the chart so we needed to make the decision to go ahead with the surgery and have the feeding tube placed. Ben had a follow up appointment today and he weighed 33 pounds! The day of surgery he weighed 30.5 pounds. He is packing on the pounds and that makes for a happy Mom and Dad. He did well after surgery and was back to his spitfire self very quickly! We only had to spent one night in the hospital. The new C.S. Mott is very nice and it was great to have our own room.

In December, we flew to Hawaii, to see my brother graduate from U of H. Ben had a great time and he did well on the long flight there and back! Here are a few pictures from our trip.