I consider ourselves lucky. We have 3 handsome and smart sons! As any mother, I worry about them. I worry about there education, their decision making, if they are happy or sad, their health.....Cystic Fibrosis of course, adds more than just the normal worry. If you are a parent of a child with CF...you understand exactly what I am talking about. Since our middle son Trevor has CF....I find myself worrying a lot. Trevor has had two major surgeries already and he is only 9 years old. I am 45 and never have had any major surgery. Trevor's lungs so far have been good, but it is scary to think of thick and sticky mucus trying its best to cause him life threatening lung infections.
He came over to me last night and said he was tired and wanted to go to bed. He asked if I would come tuck him in....which I do every night. It was 30 minutes prior to his bed time. It scares me....I don't know if it should, but it does. That he is tired more often than my other 2 sons. It worries me. I don't want CF to steal his normal life. I don't want CF to take over. I want him to have all the energy in the world that a 9 year old little boy should have. I don't let him see my fear. I just give him a big hug and kiss and tell him how proud I am to be his mom and that he is going to grow up to be someone very special someday...because he is already so special to his mom.
I have read stories on Facebook.......such sad, sad stories. My heart aches not only for those families, but the fear of something similar happening to my child. I try to shut the feelings out and do everything I can to keep our lives upbeat and everything I can do to keep Trevor healthy. I work to raise money for research and pray for a CURE!
No parent should have to go through this. No child should have to suffer from CYSTIC FIBROSIS.
They must be more vigilant about dehydration, over exertion and heat exhaustion, but cystic fibrosis sufferers are encouraged to participate in aerobic exercise. It helps build their breathing capacity and improves their ability to battle the disease. Trevor plays baseball, basketball, and soccer. He plans to play football next year! He loves to swim and jump on the trampoline also.
Is a diet of fatty foods unhealthy for CF patients???
Seeing someone feast on fatty foods may seem unhealthy and even counter intuitive, but that is just what the doctor ordered for CF patients. They need a high-calorie, high-fat diet to maintain a healthy body weight. We let Trevor eat whatever he wants to eat, encouraging him to eat as many calories per day as possible since he does not absorb his food like ordinary 9 year old boys.
Is it is Easy to Spot Someone with Cystic Fibrosis???
There is no such thing as a typical CF patient. The disease affects people of different racial backgrounds in a range of ages. Outward symptoms, like coughing, may or may not be present since the impact of the illness varies and people respond differently to treatment. Plus, many CF symptoms are also common in other conditions like asthma or Crohn's disease. CF Patients should be Home Schooled???
Again, the disease impacts patients differently, but most can successfully attend school with their peers. Absences due to frequent doctor appointments, illnesses and hospital stays can present a challenge, but CF patients are used to facing challenges. I think kids in general need social interaction. It is very important for kids to remain in the mainstream if at all possible! Trevor likes school and he gets to see his friends.
Can coughing Cystic Fibrosis Sufferers Spread the Disease to Healthy People???
Cystic fibrosis is not contagious; it is genetic. Coughing is usually a normal part of patients' breathing process, not a cold or flu symptom. Unlike most people, cystic fibrosis patients rigorously practice good coughing etiquette and hygiene. Other people are more likely to contract a contagious illness from a non- CF patient that does not shield others from his or her coughs. I worry much more about others without CF spreading germs to Trevor.
My CF Warrior, Trevor
Does CF affect your learning capability?
Absolutely NOT! My nine year old son Trevor is in the 4th grade and is an honor roll student. He excels in math! There is nothing that CF'ers can't do. They face extraordinary challenges, but because of that, they are stronger, more determined and braver individuals!!!
Tristan is running for student council - class reporter! We went to the school this morning to hang up flyers and posters. LOL He has to make a speech next Wednesday. I am assuming the election is after that. Good luck to Tristan and all the kids running!!
Because CF produces various effects on the body, the disease may be confused with other gastrointestinal or respiratory conditions such as pancreatitis or asthma. In some cases, people with CF do not appear to be seriously ill. Symptoms may include some or all of the following:
*physically smaller than classmates
*persistent coughing, at times with mucus or phlegm
*recurrent respiratory infections, perhaps including pneumonia;
and wheezing or shortness of breath.
CF mucus also can obstruct the digestive system and prevent pancreatic enzymes from reaching the small intestine. Without treatment, the body cannot digest food and nutrients properly, so children with CF can be smaller and grow more slowly than their classmates.
Most people with CF need to take pancreatic enzyme supplements with meals and maintain a high-calorie diet to help their bodies absorb the proper level of nutrients. When eating meals and snacks, CF'rs may take pills including pancreatic enzymes and antibiotics.
In addition, although enzymes aid digestion, people with CF may still experience abdominal pain, foul-smelling gas and/or diarrhea. It is important for CF'rs to have frequent access to the bathroom.
Clearing the lungs...
The thick, sticky mucus produced in CF airways clogs breathing passages and is a breeding ground for lung infections. Coughing is the body’s primary method of clearing the mucus that clogs CF lungs. It is important that children with CF not hinder their coughs.
One of the most important things a child with CF can do to stay healthy is to minimize exposure to germs and harmful bacteria. Frequent hand hygiene, which includes washing one’s hands with soap and water and/or using alcohol-based hand gel, is best.
Exercise is beneficial to children with CF because it helps loosen the mucus that clogs the lungs and helps strengthen the muscles used to breath. Children with CF should be encouraged to exercise and play as much as possible. Because of breathing difficulties, however, some children with CF may not have as much stamina as other children and may tire easily.
My dream is that no one should have to suffer from Cystic Fibrosis. A cure can be found. I dream of a life where my 9 year old son doesn't have to take 20 - 30 pills a day to survive. A life without airway clearance and breathing treatments. I dream of a life where he is not in pain from severe stomach aches associated with CF. Where we don't have to worry every waking moment that he could be developing a life threatening lung infection. I dream of a life where he doesn't have to make clinic visits....x-rays, sputum cultures, and blood tests...... I dream of an extraordinary life for my Trevor....without CF....without fear.....without pain. Maybe someday with your support we can make CF stand for CURE FOUND.
Please take a moment to make a difference in Trevor's life and the lives of thousands with Cystic Fibrosis. Please donate to fund a cure.
Cystic fibrosis is a genetic disease. That means people inherit it from their parents through genes (or DNA), which also determine a lot of other characteristics including height, hair color and eye color. Genes, found in the nucleus of all the body's cells, control cell function by serving as the blueprint for the production of proteins.
To have cystic fibrosis, a person must inherit two copies of the defective CF gene—one copy from each parent. If both parents are carriers of the CF gene (i.e., they each have one copy of the defective gene, but do not have the disease themselves), their child will have a 25% chance of inheriting both defective copies and having cystic fibrosis, a 50% chance of inheriting one defective copy and being a carrier, and a 25% chance of not having CF or carrying the gene.
Approximately 30,000 children and adults in the United States have cystic fibrosis. An additional ten million more—or about one in every 31 Americans—are carriers of the defective CF gene, but do not have the disease. CF is most common in Caucasians, but it can affect all races.
The severity of cystic fibrosis symptoms is different from person to person. The most common symptoms are:
*Very salty-tasting skin
*Persistent coughing, at times with phlegm
*Frequent lung infections, like pneumonia or bronchitis
*Wheezing or shortness of breath
*Poor growth/weight gain in spite of a good appetite
*Frequent greasy, bulky stools or difficulty in bowel movements
*Small, fleshy growths in the nose called nasal polyps
New research shows that the severity of CF symptoms is partly based on the types of CF gene mutations (defects) a person with the disease has. There are more than 1,400 different mutations of the CF gene.
This weekend is Tristan's first football game of the season. He plays corner on defense and wide receiver on offense. He did well at the jamboree....recovering 2 fumbles, he made a catch for a gain of a few yards and made several tackles. His team plays Cameron on Saturday. Good luck boys!!!
Trey playing hard
Trevor's team winning the championship last spring!
Trevor and Trey start soccer practice tonight. They are on the same team this year which makes it much easier for Jason and I to get them where they need to be and hopefully not miss any games. I love soccer. It is fun to watch. I think their first game is on the 18th of September so they can practice for a while before then.
The boys started back to school on August 18th. Tristan is in the 6th grade this year! His first year at the middle school. Trevor is in 4th grade and Trey is in first grade. They all have wonderful teachers and I think they will have a great school year. Tristan has Mrs. Brown. Trevor has Mrs. Vonderfecht, and Trey has Mr. Bowlin. It is hard to believe the summer is over. The weather is getting cooler and the time just keeps marching on. I think it is incredible how fast the time is flying. I remember when I was young, time seemed to stand still. Waiting for something seemed like an eternity. Now it seems like I don't have any time to prepare for anything. Things happen before I am even ready. I just try to hold on tight and keep up the best that I can. It is all good anyway!! My kids are wonderful young men and I am very proud of all of them.