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
Tuesday, October 7, 2008
Muscles
I weighed 11lbs 4oz yesterday when the home nurse came to draw my blood. I am getting so big! I can now wear my 3-6 month clothes. I only have a little over a week to finish my three antibiotics. This is my first week I don't have any doctor appointments. I go see Dr. Brown next week. Each visit we have been lowering the calories I receive from the TPN. I sleep throughout the night now too. It helps that I am being feed through my NG tube all night. I now get 38 cc's per hour and tomorrow we will go up to 40 cc's per hour. I get about 100 cc's in my bottle 6 times a day. My hair and eyelashes have really started to grow. I am getting little curly wings on the side of my noggin. I finally got professional pictures done last week. Mom has to go pick them up this week. Dad came to the appointment. We had some family photos taken by Mr. Robert Bruce. He did my Mom and Dad's wedding. I did really well at my photo shoot.
Ben