Can you imagine eating all the food you want in the world, and never have to worry about putting on weight? In fact, if you don't gorge down as much food as possible, you'll die...
This is what happens to Cystic Fibrosisis patients. CF is a multisystem progressive dz characterized by exocrine pancreatic insufficiency, chronic lung dz, excessive loss of sweat electrolytes, and malnutrition.
It a rare genetic disease that affects 32,000 kids in the whole USA.
Today, I saw 8 kids with that rare disorder. It is alarming to see the struggle they face. Bribes and all kinds of tactics have to be used to help them put on weight. One patient adds olive oil to everything she eats. MCT oil and milk has to be given through the G tube to another pt because he is not able to consume enough nutrients orally. In fact, the G tube has been there for 17 years since the day he was born and finally, he heard the good news today- it will be removed! Another pt has to use bolus and tube feedings to help her eat. They'd have to cough up phlegm early in the morning when they wake up.....enzymes and vit k supplement is a mealy regime otherwise the nutrients will not be absorbed...etc...the list goes on and on.
It’s kind of hard for ‘normal’ people to understand the struggles they go through but it is a BIG challenge.
I feel for these patients.
At such a young age, they'd have to go to the doctor every 3 months for the rest of their lives. Their life-span is only 37 years (although they told me that a 60 y/o pt is still living…)
At such a young age where they should be playing Barbie dolls or running in the parks, they’d have to be confined to their limited breathing activates and feeding themselves milk through tubes.
One major question these young kids ask is, "WHY ME??"
There are many WHYS?? in this world.
I do not know why certain things happen
Even if i do, sometimes they do not make sense.
Even if they do make sense, I might have my questions.
Even if I have the answers to my questions,
I might not be fully satisfied with the answers.
I will have to be contended.
God promised in the bible that He does not allow us to bear more than we can. And everything happens for a reason. We might now know why but God is working out His plan in our lives. We have to be patient and seek His will. It might be the fiery furnace that we are going through that will polish us to be precious gems.
Joseph is a good example of someone who had many "whys." Hated by his brothers, thrown into a pit, sold as a slave to a faraway land, thrown into prison for a crime he never committed, then forgotten by someone you helped...Yet through all that, Joseph remained faithful and God helped him rise to the position of Prime Minister and used him to preserve Egypt and the surrounding famine-struck countries, and at the same time be a true witness to Pharaoh ( Gen 41: 38-39). Joseph must have known the gem-of-a-promise in Romans 8:28- 'All things work together for the good of those that love the Lord.' In other words, all our sufferings and sorrows, all our temptations and trials, all our sadness and grieves, all our persecutions and hardships - in short, all things work together for our good. All experiences and circumstances are God's workmen where good is brought to us. We will only have and know ALL the answers when Jesus comes again….
These CF patients reminded me of this little thought today.
So much for my little thought…
Here’s the banana-walnut- chocolate chip cake that I baked today. The bananas were getting too ripe and the only way to salvage them would be to cook it! ( I never eat over-ripe bananas b/c I’ll puke.:X Seriously, I vomitted when i ate bananas with black spots on them >_< )
I like this moist cake with a rich taste of bananas + healthy!
The reason why it’s called Cordon Rose Banana cake is because I got this recipe from the Cake Bible. However, as usual, I modified the recipe a little. * wink**
2 large ripe bananas
2 large eggs
Vanilla, 1 T
Sifted cake flour, 2 cups
Brown sugar, ½ cup
Baking soda, 1 t
Baking powder, ¾ t
Salt, ½ t
Oil 5 T
Applesauce, 1 cup
½ Cups mini chocolate chips
Preheat the oven to 350F
Mash the bananas and add the vanilla. Whisk the egg and add into the wet mixture.
Combine the dry ingredients and mix together.
Add the wet ingredients into the dry ingredients in 2 batches, beating for 20 seconds after each addition.
Remember to scrape down the sides.
Scrape the batter into the prepared pan.
Bake for 30-40 mins.
Store: 2 days in airtight container, 5 days refrigerator and 2 months frozen.
note: never bake them in muffin cups- they come out hard!