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, March 22, 2010
Wednesday, March 17, 2010
Happy St. Patrick's Day!
Since my last post I had my 2nd Birthday on March 10th! I had a great time on my birthday. Mom and Dad took me to Steak and Shake for my birthday dinner. I got two steak shooters with frisco sauce and some fries. I downed those two little burgers and loved every bite. Dad and I ate at my picnic table I got from Grandma Carol and Papa Phil. I celebrated my birthday on March 13th with the family. I got a lot of gifts and had a great time with my cousins Josh, Maddie and Sara. I got a police car for one of my gifts and I sure do love it. Mom made me Elmo cupcakes and they were very good.
Today the luck of the Irish was on my side. I had my 3 month check up with Dr. Nasr and it went very well. I weighed in at 25lbs 7oz! I was 34 1/2 inches long! I was up 2 pounds since my last check up with Dr. Nasr in December, but if you remember I had lost a pound in December because I was sick. So basically, I gained 3 pounds in 3 months. My height is around the 50th percentile and my weight is climbing closer to the 25th percentile. Those spoonfuls of coconut oil and large bowls of coconut ice cream, I eat daily, must be working! Mom says this is a great day to have a Guinness or two in celebration of our hard work!
We made a few changes to my medications. I am now going to take a Creon 6 along with my Creon 24 before each meal and snack. I also get to use an albuterol inhaler (I have to use a spacer so I get the medication) instead of nebulizing it. This with save on some breathing treatment time. Dr. Nasr also increased my Hypertonic Saline to twice daily.
I got a new wagon and I love it. I think it is a car and when Mom takes me on walks I say "Wee". When I got back from Ann Arbor today we went for a walk around the block. Now I need a nap so I can get some much needed rest. I was not happy when Mom woke me up at 7:30 this morning. I like to sleep until 8am!
Monday, March 8, 2010
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