Wahoo, we are up to 13.7lbs! Awesome... The doctors said to keep doing exactly what I am doing. But the truth is, at times I don't even know what I am doing. I will give you a glimpse into my night schedule.... All this starts at 8pm when I start his continuous feed and give him his enzymes, then at 10 I give his antibiotic, then at 12 I have to change the formula and give night meds, then at 1 am I give the last med for the night, then at 4am I undo the continuous feed and give more meds then start my day. This does not include the 2 sessions of breathing treatments, or CPTs we do for him every morning and night. So you may be asking when do I sleep? I don't! I don't mind because I love how healthy and happy Bryce. I just have to remember that one day we will find the CURE!!!
This was just published on the CF foundation website. We are getting one step closer to finding a cure.
“Improving Access to Clinical Trials Act” Passes U.S. House, Heads to President for Signature
September 23, 2010 Today the U.S. House of Representatives passed the “Improving Access to Clinical Trials Act” (I-ACT), in a victory for the Cystic Fibrosis Foundation, its advocates and 120 other health advocacy organizations.
The bill, which passed the Senate Aug. 5, now goes to President Obama’s desk for his signature. He is expected to sign it. This legislation enables patients with rare diseases to participate in clinical trials without losing eligibility for public healthcare benefits. Passage of this legislation is particularly important for people with CF, a rare genetic disease.
A limited patient population makes it challenging to find enough people to participate in research studies evaluating the effectiveness of promising new drugs.
“Because of this groundbreaking legislation, people with CF and other rare diseases will no longer be forced to choose between critical health care coverage and participation in research that could lead to the development of a cure for our most serious illnesses,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation.
“We are grateful to our champions in Congress for approving this bill, which will help move new treatments more swiftly from the lab to the patients who need them most.”
Cystic Fibrosis Caucus Co-Chairs, Reps. Edward Markey, D-Mass., and Cliff Stearns, R-Fla., led the effort to pass the bill in the House. The House version of this legislation, HR 2866, has 141 co-sponsors.
The Senate version of the legislation, S. 1674, was introduced by Sen. Ron Wyden, D-Ore., with Sens. Chris Dodd, D-Conn., James Inhofe, R-Okla., Richard Shelby, R-Ala., and Dick Durbin, D-Ill., as original co-sponsors. An additional 17 co-sponsors signed on.
Current law prevents many people who receive Supplemental Security Income (SSI) from accepting research compensation because it makes them ineligible to receive government medical benefits. This penalty has stopped significant numbers of people with rare diseases from participating in clinical studies.