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.
This is the first day the kids are back in school from winter break. The house is quiet again, except...Tom took vacation from work. Don't get me wrong I love him dearly, but damn I didn't realize I had such a routine. He is trying to help, the dishwasher was loaded and running when I woke up at 6am this morning!! I just have a certain order I handle the hectic mornings with the kids, it might not be the most productive way there is to get everyone up and ready, but it's "my" way and the kids are used to it. I haven't been home with Tom on weekdays in years. So it's really throwing me for a loop, I should be enjoying the company, and help with Tyler. He is off to rent a few movies right now, don't know how we are going to sit down and watch a movie together...Tyler will be up in about a 1/2 hour...Nik will be home from school by 2 and Ashley will be home by 3 and Tommy at 3:30.......It is a nice thought though..I'm thinking he has already figured out that I don't just sit on the couch and eat bon bons all day...Tyler is a full time job by himself.
2009 is over, in a way I am glad. This past year was the hardest I can remember. With the bed rest with my pregnancy..with the diagnosis of CF with Ty.. to problems with my older kids in school, My relationship with my husband, My mother being on oxygen at home..cause of copd and emphysema...2009 sucked. Wondering what is in store for me in 2010. My dad always told me "what doesn't kill ya makes you stronger" I must be one tough chick!!!! I am thankful that all the bumps in the road this year have made me realize whats really important in life. When I tell people that Ty has Cystic Fibrosis I hate the responses that I get. Its either "I'm so sorry" or " I don't know how you deal with that, I couldn't handle it..." It makes me angry. I honestly don't know what the appropriate thing to say is but don't be sorry, don't give me your condolences, I haven't suffered a loss. I don't view Ty having CF as that. I am blessed to have been given such a wonderful family, I will not let "statistics" ruin that. My family is the most important thing to me...and the thing 2009 has taught me the most is to cherish every minute ...