I went to see Dr. Nasr and Dr. Lumeng at U of M yesterday for my monthly checkup. It was a very busy office. They were seeing 45 patients yesterday and 14 of whom had CF. My weight was 9.03 lbs. My dietitian was very happy with my weight gain. She told mom she knew the Elecare formula was what I really needed more of and was glad Mom had made the transition. She said with all of the trauma and massive bowel resection I had that the elemental formula was best for me. Mom and Dad know this is a God send when it comes to me gaining weight. Thankfully after the many discussions with insurance it seems my formula is being covered. It is $55 a can! I will be going through about 12 cans a month. Who said babies were cheap :) It has to be sent to the house from a medical supplier since you can't buy it off the shelf at the grocery store. They did another throat culture since I seemed to be coughing a little bit more. Hopefully it will come back with just normal oral flora. I was referred to physical therapy to help me work on my strength. Since I have some weight catching up to do this will just help to make sure I am on track with my physical development. After my long morning and afternoon trek to U of M, I went to the Detroit Zoo last night. I met my buddies, Jake, Nick, Ryan and Josh there. I slept through most of the excursion. It was a nice cool night for a stroll.
Life is good.
Ben
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, August 21, 2008
Thursday, August 7, 2008
Chatty Cathy
I am such a talkative boy. I sometimes would rather talk than eat my bottle. I have been getting more formula feeds because I seem to put on the weight faster. I was 8 lbs 8 oz. last night! I slept for eight hours last night! The only bad thing about that was when I was weighed this morning I was 7 lbs 15 oz, after dad changed my extremely full diaper. Mom and Dad may need to wake me up in the middle of the night to feed me once. My weight is so sensitive. Mom is currently starting to wean herself from breast pumping. She is trying to do it twice a day since I have started to eat more formula. We have a deep freezer full, so we should have enough breast milk to last me at least 3 more months. Mom is sad about making this transition, but knows we have to do what works best at this point. I will still get some breast milk everyday, so hopefully the immunities will help keep me healthy as I grow bigger. I got to meet my Great Uncle Gord and Aunt Claire. They had their baby shower last Sunday. My Cousin Emma held me too. She even took one of my pacifiers for herself. I didn't mind though. I love to suck on my two middle fingers more. I was over stimulated that day with all of the new faces.
Love, Ben
Love, Ben
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