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What is CF?

It is a genetic disorder that you are born with.

Your body needs water and salt to work and grow. Water and salt move through tiny cells in your body. In people with CF, water and salt can not move through the tiny cells easily which makes it dry. The body then produces thick, “icky, sticky stuff” called mucus. mucus forms in the:

Lungs which help you breathe.

Pancreas which help you digest your food.

Mucus sticks in your lungs and throat and makes you cough. Mucus is also a friendly home for germs and bacteria which can make you sick.

Where does CF come from and how did I get it?
CF is inherited. We all get 2 CF genes from our parents before we are born. We get 1 gene from each parent. We either get a Normal gene – which does not have CF, or we get an Abnormal gene – which has CF. If we get 2 Abnormal genes then we will have CF. Our Parents can NOT control which 2 genes we will get.

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Children with CF can expect to lead a very normal life. Let’s look at the things you do each day:

Have Friends
Go to School
Play Sports/Exercise
Do Your Homework
Have Fun

What is one difference between me and a friend who doesn’t have CF?

In many stages of life, a CF patient will require some type of airway clearance, chest physical therapy, or breathing technique anywhere from 1 to 4 times a day.

 

  • CF patients will take Enzymes to help with food digestion.
  • CF patients will take more Vitamins each day.
  • CF Patients will take more medicines and antibiotics to feel
    better.
  • CF Patients may visit the CF Centers regularly throughout the
    year for check-ups and health maintenance.

A Few Special Things To Remember:
1. If you have CF – It Doesn’t have to have you!
2. Be Responsible – Think Responsibility
3. Put your Health 1st! – It is your JOB!
4. Take all of your Medicines
5. Do ALL of your Therapy Treatments
6. Take your Enzymes and Vitamins
7. Exercise
This routine followed every day will only prove that you are taking care of yourself and your health. Your parents and doctors will be proud of you. Most of all, you will feel that you are at the TOP OF THE WORLD when you are responsible for taking care of your health. Visit the MAD DOG to help boost your Spirit to Fight Back!

Have Fun!
All of the fun stuff you like to do will be there for you to enjoy with pleasure because you know that you have earned your FUN by taking credit for your good health!

TIP:
Approaching your day with fun and joy and a sense of good spirit will make you healthy minded and this will make you breath much easier – knowing you are doing your JOB!

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Hey, Kids!

Looking for some fun games on the Internet?
If you are interested in learning some medical technology and learning how to deal with some of your emotions go to KidsHealth.org. You can read other children’s journals on how they are coping with a disease or illness they have. Or, maybe you are feeling hungry, this site offers some really easy, delicious recipes such as pizza, strawberry smoothies, berry good muffins and more!!!

Love,

Annie

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Dirk’s Dessert
one bowl of Blue Bell Dutch Chocolate Ice Cream
one package of Oreos
one hersheys chocolate syrup
one small container of Whipped Cream
crunch oreos into ice cream and cover with chocolate syrup
add a small dab of whipped cream

Enjoy!

Peanut Surprise Shake 1 glass of Vitamin D whole milk or Soy Milk
1 medium banana (or your favorite fruit may be substituted)
1 cup of apple or pineapple juice
2 tbs peanut butter
1 tsp of sesame oil
Add all ingredients into a blender – Whip to the consistency
you like….

Yield: 1-2 servings
1 = 250 calories

Enjoy!

After School Puddin’
2 small packages chocolate instant pudding (Any flavor may
be used)
1 (14 ounce) can sweetened condensed milk
1 large container Cool Whip
Prepare pudding according to package directions
Combine remaining ingredients with pudding and mix well.
Refrigerate until chilled. Cut into 8 servings. Add Cool Whip to
top of each piece.

Yield: 8 servings
1/8 = 513 calories

Enjoy!

Double Fudge Brownies 1 cup (2 sticks) butter or margarine
4 squares (4 ounces) unsweetened chocolate
2 cups granulated sugar
3 eggs
1 tsp vanilla extract
1 cup sifted all-purpose flour
1 ½ cups chopped peanuts or walnuts (if you desire)
1 (6 ounce) package of semi-sweet morsels

Melt butter and chocolate in medium saucepan over medium
heat. Remove from heat when melted. Slowly beat in sugar
until combined. Add eggs – 1 at a time, beating well after
each egg. Stir in vanilla extract. Gradually add flour; mixing
well. Stir in 1 cup of nuts if you desire them. Spread mixture
into a 9x13x2 inch greased pan. Combine the remaining nuts
with the chocolate morsels and sprinkle over the top of the
brownies, pressing down lightly. Bake at 350o for 35 minutes.
Let cool down and cut into 24, 2 inch squares.

Yield: 24 squares
1 (2 inch) square = 200 calories

Enjoy!

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All kids want to stay well. Our parents especially want us to be healthy!

But…Sometimes we don’t feel so good. We are tired and we want to rest. You might even have to go to the hospital and get some “fuel” and “energy” for your body so that it can feel better. The time you have to stay in the hospital is different for everybody. Some kids go for a week, some for 2 weeks and some even a little longer. The main reason you go is to get better, so whatever time you have to go for…is time to help you get healthy!

When you have CF, sometimes your lungs need some help with all of the hard work they do to keep you feeling strong. The doctors at the hospital can give your lungs medicine. This medicine helps the lungs to work harder to fight the infection and bacteria that make it hard for you to breathe. Your doctor will tell you which kind of medicine you will get.

Before You Go To The Hospital – A Checklist For Your Favorite Things To Bring:

Stuffed animal or doll
Blankie and PJs
Toys
Pictures of Family and Friends
CDs, Tapes and a Discman or Walkman
Books, Games
Comfy Clothes

While You Are There
Some Children’s Hospitals have playrooms, kid lounges and dining rooms. Be sure to have the hospital staff inform you of any fun activities that might be happening there.

Also check with your nearest CF Center for help and any questions you or your family might have. They have lots of information to help you in planning your visit.

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What Is The Mad Dog?
Let me introduce myself. My name is Mad Dog. Not a Bad Dog, a real live fighting Mad Dog. A dog who loves life and doesn’t give up, no matter how the times might seem rough. The Mad Dog doesn’t bite, he has keen insight. He just fights with all his might. He fights everyday with all his jive with the main purpose, to stay alive.

He keeps on fighting then he says…(children look in the mirror)
I am the Mad Dog, that sounds good
I have the Mad Dog, and it feels good
I do like the Mad Dog, he knows what to do.

Listen children lets go to the Mad Dog School. You know what to do so act real cool. Study real hard and remember my golden rule. Hold your head up high, you know who you are, believe in yourself for you will feel a million miles in the sky. The Mad Dog will always help us around. Don’t worry you can’t end up in the lost and found. Remember! Things may not go your way, it doesn’t mean your thoughts should turn to gray.

We keep on fighting then we say…(Just look in the mirror)
I am the Mad Dog, that sounds good
I have the Mad Dog, and it feels good
I do like the Mad Dog, he knows what to do.
Sometimes people say you can’t do it , you are crazy, then we feel bad and sometimes lazy. When we feel that people are mean, we must remember that they have problems with their steam. So keep a positive attitude, you can be shrewd but the Mad Dog doesn’t get rude. He is just always in a cool mood.

We keep on fighting then we say…
I am the Mad Dog, that sounds good
I have the Mad Dog, and it feels good
I do like the Mad Dog, he knows what to do.
When we get together, we have so much fun. At times we may feel different, we know we can be Number 1! Look in the mirror and say I want to be who I am and accomplish everything that I can. Our future looks bright, one day the Mad Dog won’t even have to fight. We will feel so healthy, we will say everything is going to be all right.

Mirror, Mirror on the wall who is the GREATEST MAD DOG of them all?…(look in the mirror).

The Mad Dog is Back, Fight Back
You know just what you have to do
You’ve got to fight it before it gets to you
If you do your therapy just the right way
It will help you get through each and every day

You can have the Mad Dog too
Don’t be a fool it might sneak up on you
So work real hard and minimize the pain
You’ve got to believe to maximize your gain

After you let go of the negative thought
Think of the difficult battle you just fought
You all have got to have a goal
And when you achieve it, it will fulfill your soul

Fighting can be fun if you allow your days to have a short run
The Mad Dog isn’t wrong
He takes his pills with his meals so he can grow to be strong

He takes his meds to fight the bugs, and when he feels better,
he gives more hugs
There may be a time when we all feel down
Just remember to smile and not to frown
Because the Mad Dog – He won’t leave town.


Risa Gans
www.transplantbuddies.org

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Everybody Needs Nutrition.
Nutrition is feeding your body healthy meals, snacks and vitamins. While everybody needs nutrients to keep their body healthy and running smoothly – kids with CF need to pay special attention to their nutritional needs.

Why Do I Have To Pay Attention To What I Eat?
If you don’t give your body the nutrition it needs – it can’t grow. Kids with CF need the right foods for “fuel” and “energy” especially for:

Lungs – they need to stay strong and healthy so you can breathe easier

Immune System – the part of your body that fights infections and bacteria

Heart – helps deliver nutrition to the rest of your body

Growth – if you eat healthy foods – your body gets the right ingredients to grow big and strong – and keep you healthy.

Three Keys to Nutrition
1. Lots of Calories
2. Enzymes
3. Vitamins

Eating enough calories each day is important for growth and health. Kids with CF need extra calories to help their body fight infections, grow and develop. Also, the daily activities that we do, like going to school, playing and exercising – all need extra calories? Did you know that even when you cough and breathe hard – to help your lungs clear away the icky sticky mucus – that this burns calories? It does! So you must keep your body fueled with energy by giving it extra calories every day. Visit our high-calorie recipes and snacks for fun, great tasting ideas! Visit our high calorie recipe page.

Help the body to digest food. Kids with CF sometimes have trouble digesting food and if enzymes are taken with the food – they can help break down the food you eat and deliver the nutrients to the whole body so it can grow and fight infections.

Vitamin A – helps in overall growth and fights infection
Vitamin D – is important for strong bones and teeth

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In a CF Patient, the Respiratory System is the most important part of the body and it needs a lot of attention.

Respiratory System
The organs of the body which help you breathe. The Respiratory System takes the oxygen from the air we breathe and puts in into the bloodstream. Once oxygen is in the blood, the Heart delivers it to the parts of our bodies that need the oxygen.

Lungs
The actual place in our body where the oxygen is transferred into our blood. The main job of the lungs is to take the right amount of oxygen from the air we breathe in and get rid of the carbon dioxide in our body back into the air we breathe out.

Brain
Tells the lungs when it the body has the right balance of these to gases – oxygen and carbon dioxide.

In CF patients, this is a special process. CF patient’s lungs are affected by this disease, and it is very important to keep the lungs healthy so that they can do their job of getting oxygen in the body and removing carbon dioxide. There are several treatments that CF patients can do everyday – sometimes several times a day to help the lungs do their job. The lungs must stay clean and healthy so that they can also fight infections – these infections make it harder to breathe.

Here Are Some Treatments That CF Patients Can Do To Help Their Lungs:

Chest Physical Therapy
Helps keep the airways as free as possible from the icky sticky stuff called mucus. Mucus clogs the airways making you cough and making it harder for you to breathe. This therapy can help your body move air, salt and water through your body and deliver nutrients to help you stay healthy! People like your parents help you with Chest Therapy because they want to help you feel better.

Antibiotics
Friendly, powerful medicine that goes directly into your bloodstream. This medicine helps your body fight bacteria that cause infections in your lungs. There are different kind of medicine and your doctor will give your body the medicine that will work the hardest to make you healthy.

The Vest
Looks like a life jacket vest. This vest fills with air and inflates then it deflates quickly -making it vibrate. This vibration helps shake that icky sticky mucus out of your lungs and airways so you can breathe easier.

The Pack
Fits on your back like a backpack. It taps on your back to move the icky sticky mucus out of your lungs and airways so you can breathe easier.

Also check with your nearest CF Center for help and any questions you or your family might have.