April 13, 2013

Why We Fight CF

Obvious reasons we fight Cystic Fibrosis are our son Corban HAS it, our son Rylan may carry it, and CF is fatal.
I want to show you a day in the life of Corban. And let you in on things he'll deal with in the future.
Let's visit a Monday morning for Corban. I get Corban up at 6 am. He doesn't need to be ready for school until 7:45 am. He usually chooses to eat breakfast first thing. So we start with 4 enzymes, a vitamin D pill, an omeprazole pill ( you may know this better as prilosec.), a nasonex spray in each nostril, two puffs from an albuterol inhaler, and a CF source chewable vitamin. (He has this bottle left and then he has to learn how to take a giant horse pill because they have stopped making this. Once he's finished with his breakfast he gets dressed, brushes his teeth and starts his first round of treatments. Most of the time he does his vest. Sometimes we don't do it in the am, but those are generally bad tummy days. While he vests in the am he does hypertonic saline breathing treatments. Basically just very salty water he's breathing in. Once that's finished he gets to relax before school. There is a big bit of trust required between him and me here, because I leave for work after setting him up.
Once he gets to school its easy sailing until snack. He walks himself to the office and takes his 2 enzymes for snack then back to class. He's only a half day student this year. When he gets home from school, Dad feeds him lunch. Another 4 enzymes. A few hours later snack and another 2 enzymes. I get home around time for dinner, and he usually helps me cook it. He loves cooking. When we get done with the meal and sit down to eat he takes another 4 enzymes.
After a little more play time it's time to get ready for night time meds. He takes Pulmozyme breathing treatment, along with his vest again. And because he's so awesome, he takes another hypertonic saline. He then does a nasal rinse. Last year he had a sinus surgery to first and foremost remove his tonsils, adenoids, and a nasal polyp; but also to clean out his sinus passages when were ravaged with "CF disease" which basically means he was full of thick snot. His nasal rinses began after that to keep him clear. It isn't 100% effective, but does a nice job.
Now, he has yearly blood work and x-rays, but a trimonthly visit to his CF Specialists. Each year his vitamin levels, liver enzymes, and blood sugar levels among more are monitored.
Corban is pancreatic insufficient. Its been said his pancreas simply "doesn't function". This is why he takes digestive enzymes. However, he's not diabetic so I'm lead to believe it must function in small amounts. He will eventually begin dealing with Cystic Fibrosis Related Diabetes. A class of diabetes all its own. Most people don't even know it exists. Imagine my non-surprise. Most people don't even know CF exists.
Over the years, Corban's body will begin to deteriorate. Much like yours and mine, only..much sooner. He'll start to have trouble breathing. His organs will start to go. Unfortunately, I can't touch much on this tonight as it is striking me as much too painful. I promise to address this on a day when I can emotionally handle it. Tonight though, I just hurt knowing that someday I will lose the first boy I ever loved unconditionally. My first son.
Understanding why God gave us this, is beyond me. I know I'm strong enough to handle it. He gave it to me, He'll hold my hand through it. But why he saw fit to give this burden to me...of all people...I'll NEVER understand until I can hold that conversation with Him.
This is why we walk. This is why we plead. This is why I cry. This is why I love.
Please help if you can. We can cure so many other diseases. We can treat so many other diseases to extend the "normalcy"...but CF...inevitably takes over..and claims the life of the person who has it. Please visit Corban's Great Strides page and donate anything you can. This is the only chance we get to help them out. Our cure is in research. Our research is funded by donations. Unlike so many other diseases...the CFF does not get any federal funding. Your help is our tomorrow.

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