Groettum Family: Cowboy Hats, Ponies, and Jumps

Wednesday, May 25, 2011

Cowboy Hats, Ponies, and Jumps

Posted by Jen at 7:58 PM

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BFMay 26, 2011 at 11:34 AM
Your little Gavin is so cute!
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What is Cystic Fibrosis?

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections & obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF.

Our team of doctor's have a goal for Gavin (and other's born today w/CF) to live a full lifespan. We are confident that he will live a long and happy life! We are very lucky to have the University of MN as our CF Clinic as it is one of the best in the world!!

Gavin's mutations are G551D and Df508. Both are currently being studied in clinical trials for two therapies that are designed to correct the function of the defective CFTR protein made by the CF gene (his mutations), allowing chloride and sodium (salt) to move properly in and out of cells lining the lungs and other organs. If these medications make it through the clinical trials they will allow Gavin to live a much more "normal" life!

Gavin's Current Treatments

Vest treatments 2x per day

Albuterol + Mucomyst via nebulizer 2x per day

6 Creon 6 w/every meal

1 mL of Vitamax vitamins 1x per day

1 puff of Flovent inhaler 2x a day

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