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.

My Pizza Addiction

My reason to live really is my kids. Even though currently, they are really testing my sanity. But sometimes I think that God put me here to love Pizza.
Wednesday nights can get a little chaotic. The kids have AWANAS and I have Bible Study. I generally get home around 4:30, and would be able to get dinner done before church. Tonight, I just didn't feel like cooking, so I ordered a pizza. I was introduced to Casey's pizza as a teenager, when my family lived in a small town that didn't have a pizzeria. I learned to love it. When we moved back to our current city, we didn't have access to Casey's Pizza. I LOVE pizza. Pizza is easy, pizza is quick, and under most circumstances, I don't really have to lift a finger for pizza. The downside to pizza, though, at least in our household, is it's "gassy". Pizza is greasy. Grease equals gas in a CFer.
For a normal meal, Corban would take 4 enzymes, and that would be enough. For pizza, I typically give him 5 just to help counteract the grease. The good thing is that most times it works great. It seems that as days go by, I can find a million things to add a notch on the "Things I Despise About CF" rack. I hate that foods that I absolutely adore, give my son a tummy ache. I hate that the tummy ache means he'll have gas. I hate that I have to rub his tummy at night to help him sleep, or he'll never be able to sleep. I purely hate CF.
I love my children.
Although, quite off topic, I think they're intentionally trying to drive me insane. It's an hour before it's time for church. The boys are screaming and throwing things, and my daughter is BUGGING me about making scarves with old t-shirts. I don't think she quite understand that there are criteria that has to be met before we can do such a thing, like the shirt needs to be cotton...not spandex, or polyester. I can't wait until bed time tonight....SILENCE. Yes, that is what the Dr. ordered.

Oh the sounds... of music?

One of the things about Cystic Fibrosis that really sucks...is pancreatic insufficiency. Corban needs enzymes. Today..we had a catastrophe.
After church, was the girls' tea party. We had our niece and nephew, and my daughter's half sister. Corban and my nephew went with my mother after church. Now, generally we have a stash of enzymes at any place where Corban spends a good amount of time. For those...just in case moments. Mom did have a stash. However, said stash had been depleted more than we knew.
By the time that the tea party was over and I got out there to pick him up, he had announced he was starving and eaten all the fruit he could stand. (Enzymes not required) Well he apparently just could NOT wait to eat the chili and was served a bowl without enzymes.
Now - before you chastise me... yes. He's 5. Yes there were adults present, and yes..someone could have said okay we need to resolve this. That fact is behind us as it has already happened and nobody can change it.
Corban didn't eat all of the chili...and quickly made it known that he didn't have enzymes. Under normal circumstances where he'd gotten them he would of course get gas. The difference is...the smell.

I am surrounded by testosterone. There are 3 males in my home. Gas is not abnormal. Neither is hysterically laughing about said gas. Especially not with Corban. I promise you that it is not. The chili must have been fairly fat free because the ensuing tummy ache we just knew we'd deal with.. never happened. We did experience what Corban calls his "special music". Which is not very pretty. One started tooting... and the other followed suit. A couple hours later it is now a trio with my husband 'playing' along.
The thing about a CF toot...it STINKS. He has made the house smell horrible. And as I walk by his bedroom... wow. Plug your nose.
The lesson here...maybe Corban should carry a med-pack for those just in case moments, and perhaps an air freshener.