Hello again!
I thought I would take this time to start writing since it is nap time for us, and things are quieter around here now! Today is Halloween, and I am so excited to take my 'Buzz Lightyear' Trick-Or-Treating for his very first time. Reason being I am so excited is unfortunately Halloween 2008 our Carson at only 2 months was hospitalized due to a lung exacerbation as a result of CF. Point being,and listen closely...WE MADE IT THROUGH THAT TWO WEEK STAY ALIVE AND BACK TO HEALTH, AND NOW WERE HERE ON HALLOWEEN 2009 AND TAKING CARSON TRICK-OR-TREATING FOR THE FIRST TIME AND THAT MEANS THE WORLD TO US.
Earlier this morning Carson and I went to Wal-Mart last minute to pick up his coustume. On several seperate occasions we encountered three seperate...people? We met Raggidy Anne, a cat, and even a reindeer.Got it? Walmarts employees? Carson seemed pretty dumbfounded as to what was going on, but it was somewhat amsuing to him as much as them. I think what gets me the most as a mother battling(a term will refer to over and over again, because that is what CF is...One BIG battle) CF is, it's as
if I almost feel something eating at me from inside as these people are admiring my "ideal, to perfection...from the outside" child!
That reindeer,cat, even Raggidy Anne they can't see what my childs body is going through on the inside! He's fighting people can't you see! I feel as though my emotions, my heart are all fighting within my own mind.I always become madened as my mind goes in circle after circle! Do these people know what I am going through? Do they understand what I feel like? Am I showing it on my face?
It's almost a feeling of jealousy I can say for myself. Why my child? How can things like this happen to an innocent life? How can their be a God? These are all questions that you will contemplate over and over again, especially during your infants first year of life. You were given this life because you are strong enough to live it!
That is what I believe is the basis, and the starting point to dealing with CF. It's a battle that you can never fully understand, but must grip. One that must never be surrendered to, or forfeited. As a mother, father, grandparent, this will be the hardest battle you will ever fight, but it's one thats worth fighting for, every last damn mintue of it! Got it? Ending with a bam! God bless.
Saturday, October 31, 2009
Friday, October 30, 2009
YOU WERE GIVEN THIS LIFE BECAUSE YOU ARE STRONG ENOUGH TO LIVE IT
HELLO EVERYONE! HAPPY EARLY HALLOWEEN!
My name is Angella Falato, and today is my first day on blog spot. (I may refer to myself as Mommy:)) I will mainly use this site to blog about my son Carson Thomas, who at 8 weeks(Now such a BIG BOY at 14 months) was diagnosed with a genetic disease called (CF) Cystic Fibrosis. It's a disease that affects around 30,000 people in the United States, and also sadly is a term that most americans know nothing about.
Before I get into CF (Cystic fibrosis) and it's termonology, here is an introduction to our small, but complete family. Me, ANGELLA, CF MOM, Jordan (CF DADDY) and Carson (CF ANGEL)!Got it? We were blessed to welcome Carson into our family on August 12th, 2008 at Mercy Hospital in Janesville WI! Daddy is from Wisconsin, and Mommy is from Illinois! We were in Janesville visiting family, and setting up our new apartment when Carson decided to arrive early at 37 weeks, forcing us to deliver in WI! What are the odds?
Back to things that matter! Cystic fibrosis is an inherited disease that causes thick, sticky mucus to build up in the lungs and digestive tract.Thus INCREASING lung infections, and DECREASING absoprtion of food.It is one of the most common type of chronic lung disease in children and young adults, and may result in early death.
Because there are more than 1,000 mutations of the CF(Cystic Fibrosis) gene, symptoms differ from person to person.(some are Carson's symptoms, and some are not)! Got it? But in general they include:
Belly pain from severe contipation
Coughing or increased mucus in the sinuses or lungs
Delayed growth
Fatigue
Infants may have salty-tasting skin
No bowel movements in first 24 to 48 hours of life
Stools that are pale or clay colored, foul smelling, or that float
Recurrent respiratory infections such as pneumonia or sinusitis
Weight loss, or failure to gain weight normally in childhood
When Carson was first born (for all you new CF families) everything seemed pretty normal, except the occasional projecticle vomiting! It wasnt until around 2 weeks, when we got the results that Carson had abnormal infant results ( the heel prick they give infants when first born) Iwent to meet with his pediatrician at the time, Dr. Storlie, She sent us to The American Family Children's Hospital in Madison, Wisconsin to have what is known as a sweat test. Children with Cystic Fibrosis often have abnormal amounts of sodium chloride(salt) in their sweat! Carson's numbers came back at 109 (very abnormal) and that was what I call "the first day of the rest of our lives."
It was such a shock to us all! I DIDNT EVEN KNOW WHAT CYSTIC FIBROSIS WAS BEFORE MY SON WAS DIAGNOSED! Dad has the Delta F508 mutation. My mutation is VERY rare, and still cannot be determined(hopefully in the near future more tests can be ran to find the undetermined mutation, as this may open new doors to Carson's doctors in understand his case better).
The care Carson requires is a lot of work but most definitley managable.These routine medications, and therapys are well known and utilized throughout the CF community. Carson requires a much needed dose of salt (which can be put in a glass of milk in the morning to go unnoticed)this is due to his lack of salt transfer between his cells. He gets 1 ml of ABDEK vitamins daily (because his body cannot properly absorb essential nutriets) Carson takes 1 vial inhaled Pulmozyme medication once daily to help thin the mucus in his lung, thus hopefully decreasing lung infections which in turn increases lung function, Thats a plus. In addition Carson inhales 1 vial of Albuterol every 4-6 hours as needed.Thats it for medications!
Now on to some of the therapy used to manage CF. Chest Physio Therapy,aka CPT, aka Airway Clearance Techniques! Phew...Chest Physio Therapy helps break the mucus down in his lungs by "percussion"(cupping and pounding of the hands in sections on the chest cavity, and lung lobes) making it easy to cough out. This helps so in turn bacteria cannot grow in the usually thick and ideal mucus.(Which it really wants to!) and last but most importantly Carson takes 3 Pancrecarb enzyme capsules (in apple sauve) per meal, per snack, per fatty anything!
We as a newely diagnosed family were thrown into such a whirlwind of information, facts, treatment, statistics! If there is one thing I can tell a new parent to a child with Cystic Fibrosis is to LEARN ALL YOU CAN ABOUT THE DISEASE, there is nothing to be ashamed of, other than not being able to properly or effectively take care of your child with this disease.Do'not let your child be a statistic, let your child thrive. Do the treatments, visit the doctors, take precautions BUT LIVE YOUR LIFE! Put this disease first BUT DO NOT LET IT LEAD OR DEFINE YOUR LIFE.Got it?
Enough for today! Thank you to all our family grammy, papa, nana, uncles, aunties, cousins, BOSS everyone who has stood behind us in our battle to keep our little Carson healthy! God Bless.
My name is Angella Falato, and today is my first day on blog spot. (I may refer to myself as Mommy:)) I will mainly use this site to blog about my son Carson Thomas, who at 8 weeks(Now such a BIG BOY at 14 months) was diagnosed with a genetic disease called (CF) Cystic Fibrosis. It's a disease that affects around 30,000 people in the United States, and also sadly is a term that most americans know nothing about.
Before I get into CF (Cystic fibrosis) and it's termonology, here is an introduction to our small, but complete family. Me, ANGELLA, CF MOM, Jordan (CF DADDY) and Carson (CF ANGEL)!Got it? We were blessed to welcome Carson into our family on August 12th, 2008 at Mercy Hospital in Janesville WI! Daddy is from Wisconsin, and Mommy is from Illinois! We were in Janesville visiting family, and setting up our new apartment when Carson decided to arrive early at 37 weeks, forcing us to deliver in WI! What are the odds?
Back to things that matter! Cystic fibrosis is an inherited disease that causes thick, sticky mucus to build up in the lungs and digestive tract.Thus INCREASING lung infections, and DECREASING absoprtion of food.It is one of the most common type of chronic lung disease in children and young adults, and may result in early death.
Because there are more than 1,000 mutations of the CF(Cystic Fibrosis) gene, symptoms differ from person to person.(some are Carson's symptoms, and some are not)! Got it? But in general they include:
Belly pain from severe contipation
Coughing or increased mucus in the sinuses or lungs
Delayed growth
Fatigue
Infants may have salty-tasting skin
No bowel movements in first 24 to 48 hours of life
Stools that are pale or clay colored, foul smelling, or that float
Recurrent respiratory infections such as pneumonia or sinusitis
Weight loss, or failure to gain weight normally in childhood
When Carson was first born (for all you new CF families) everything seemed pretty normal, except the occasional projecticle vomiting! It wasnt until around 2 weeks, when we got the results that Carson had abnormal infant results ( the heel prick they give infants when first born) Iwent to meet with his pediatrician at the time, Dr. Storlie, She sent us to The American Family Children's Hospital in Madison, Wisconsin to have what is known as a sweat test. Children with Cystic Fibrosis often have abnormal amounts of sodium chloride(salt) in their sweat! Carson's numbers came back at 109 (very abnormal) and that was what I call "the first day of the rest of our lives."
It was such a shock to us all! I DIDNT EVEN KNOW WHAT CYSTIC FIBROSIS WAS BEFORE MY SON WAS DIAGNOSED! Dad has the Delta F508 mutation. My mutation is VERY rare, and still cannot be determined(hopefully in the near future more tests can be ran to find the undetermined mutation, as this may open new doors to Carson's doctors in understand his case better).
The care Carson requires is a lot of work but most definitley managable.These routine medications, and therapys are well known and utilized throughout the CF community. Carson requires a much needed dose of salt (which can be put in a glass of milk in the morning to go unnoticed)this is due to his lack of salt transfer between his cells. He gets 1 ml of ABDEK vitamins daily (because his body cannot properly absorb essential nutriets) Carson takes 1 vial inhaled Pulmozyme medication once daily to help thin the mucus in his lung, thus hopefully decreasing lung infections which in turn increases lung function, Thats a plus. In addition Carson inhales 1 vial of Albuterol every 4-6 hours as needed.Thats it for medications!
Now on to some of the therapy used to manage CF. Chest Physio Therapy,aka CPT, aka Airway Clearance Techniques! Phew...Chest Physio Therapy helps break the mucus down in his lungs by "percussion"(cupping and pounding of the hands in sections on the chest cavity, and lung lobes) making it easy to cough out. This helps so in turn bacteria cannot grow in the usually thick and ideal mucus.(Which it really wants to!) and last but most importantly Carson takes 3 Pancrecarb enzyme capsules (in apple sauve) per meal, per snack, per fatty anything!
We as a newely diagnosed family were thrown into such a whirlwind of information, facts, treatment, statistics! If there is one thing I can tell a new parent to a child with Cystic Fibrosis is to LEARN ALL YOU CAN ABOUT THE DISEASE, there is nothing to be ashamed of, other than not being able to properly or effectively take care of your child with this disease.Do'not let your child be a statistic, let your child thrive. Do the treatments, visit the doctors, take precautions BUT LIVE YOUR LIFE! Put this disease first BUT DO NOT LET IT LEAD OR DEFINE YOUR LIFE.Got it?
Enough for today! Thank you to all our family grammy, papa, nana, uncles, aunties, cousins, BOSS everyone who has stood behind us in our battle to keep our little Carson healthy! God Bless.
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