My name is Kristine, I am a wife to Tom Hendricks, mother to Nik, Ashley, Tommy and Tyler. We live in Saint Louis Missouri. I started this blog after Tyler was diagnosed with Cystic Fibrosis. Not only do I hope to keep our family and friends up to date, but also for me to have a place to go with my thoughts. I have found others that understand what I'm going through, that have been there already or are facing it all as I am.
Tyler's mutations are deltaF508-621+1g>T
Creon - 1 and 1/2 capsules with every feeding CPT- twice daily 15 minutes per session
_Cystic Fibrosis *CF* is one of the most common genetic diseases, especially in Caucasian populations, & affects about 30,000 people in the United States. An individual must inherit two defective genes (one from each parent) to have CF. The defective genes cause the body to produce abnormally thick and sticky mucus that clogs the lungs, and causes difficulty breathing from mucus accumulation in airways. It can be detected by faulty digestion and deficiency of pancreatic enzyes, which keep the pancreas from breaking down and absorbing foods.
-Without treatment, Cf results in death for 95% of affected children before age 5.
-The median age for people with CF is about 36 years, but the number increases each year thanks to new medicines.
-About 1,000 new cases of CF are diagnosed each year.
-More than 95% of men with CF are sterile.
-CF occurs in aprox. one of every 3,500 live births.
-One in 400 white couples are at risk for having children with CF
-Each time two carriers conceive, there is a 25% chance that theit child will have CF, a 50% chance the child will be a carrier of the CF gene; and a 25% chance that the child will be a non carrier.
-More than 10 million Americans are unknowing, symptomless carriers of the defective gene.
-The mucus build up can block the bile duct in the liver, eventually causing permanent liver damage.
-CF appears usually in early childhood where diagnosis is most important. Today, mother's can be tested while they are pregnant to see if their child will have CF.
-There are more than 1,000 different mutations of the CF gene.
-A sweat chloride test is the standard diagnostic test for CF. A higher amount of salt found in the sweat indicates CF.
-To help with digestion, many CF patients take enzymes with their meals to help the pancreas break down the food.
I have become so paranoid to be around sick people. Things that I never noticed before. I went to my daughter's choir performance the other night, Just my son Nik and myself went. I left Tyler home with dad. We had this family sit behind us mom, dad, about 3 kids... hacking and coughing and sneezing. I sat with my sleeve over my nose and mouth trying to avoid breathing their germs for a half hour. I am wondering why did they come, if i was that sick I would not go sit in a crowded room and expose everyone to my cold. Tyler has made me see alot of things I never noticed before, maybe its just me being paranoid to bring something home to Tyler but geez.......if your sick stay home I dont feel like sharing your germs.
Its amazing to me the little things I am able to enjoy with Tyler that I missed with my other kids. I am now for the first time ever a stay at home mom. It makes me sad to realize that because I was working all the time I missed so much. I never thought I would be so excited to see my son suck his thumb for the first time, or discover that his toes are conected to him and he controls them...fasinating stuff. Little things I guess I took for granted before. It bothers me to think that Nik, Ashley, and Tommy also missed out on me being around all the time. When they were babies my main priority was to provide for them and that ment I worked alot of hours, and they spent alot of time with grandma and grandpa. I just hope that they all know they are so loved, my kids are my world.