I don't need no stinking feeding tube!

Last year at about this time we were faced with the possibility of a feeding tube. This is a tube placed into the stomach that you can give supplements through. A big part of CF if nutrition. Most CFers are pancreatic insufficient.This means their body doesn't have the enzymes needed to digest food. So they don't absorb the food they eat. This means they don't gain weight easily. We give enzymes with most of the food Cade eats. But even that only gets him about 75% absorption. Right now he is taking 5 capsules with every meal and 3-4 with snacks. He usually eats 3 meals and 2 snacks daily. A healthy weight is very important. Lung function and weight are very closely linked. So the healthier the weight, the better the lung function.
So back to this feeding tube. As determined as his team was that he needed this tube to help gain weight, I was just as determined he wasn't going to get one. We didn't want one more thing in Cade's life that made him different. Besides, he really likes to eat! So we started searching for ways to fatten up his food. We started him on a supplement similar to Pediasure. We add fat and protein to everything we can. Think macaroni and cheese with heavy cream and butter. Yummy! We also have a special powder we add to soft foods that is basically calories in a can.We've also discovered Hershey's chocolate Milkshakes. I am slightly jealous of the foods my kid gets to eat!
Well, after a year of fattening this baby up, we are finally seeing results. This little love has some has some thighs!!! Even got some chunky cheeks! I am one excited momma! We went back to clinic today. They were pretty excited too! Cade is in the 83% for his height:weight ratio. They prefer CFers to be above 50%.  I've stressed alot over Cade's weight. I can definitely say it's been worth it. There's still a long road ahead, but at least it's starting to look a little smoother!

Oh to be a CF mommy

I've often tried to think of ways to explain what it feels like having a child with something "different". It's not like I would change Cade. I love every fiber of this precious little boy. But sometimes it's hard not to think about the what ifs or to long for the normal things others so easily take for granted.
I think it's easier in some ways that my 1st child was born with CF. I don't really know any difference. I also feel very lucky that Cade was diagnosed so early because he will never know any different either. But still there are those times........
Today I was searching around a CF mommy site when I found the following post. I think it's  pretty great way to sum it up!

"I am often asked to describe the experience of raising a child with special needs to try and help people who have not shared that unique experience to understand it, to imagine how it would feel. it's like...

When you're going to have a baby, It's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. Michelangelo's David. The Gondolas in Venice, You may learn more handy phrases in Italian. Its all very exciting!

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The flight attendant comes in and says, "welcome to Holland."

"Holland?" you say. "What do you mean, Holland? I signed up for Italy. All my life I've dreamed of going to Italy" But there's been a change in the flight plan. they've landed in Holland and you must stay. The important thing is that they haven't taken you to a horrible, disgusting filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you must meet a whole new group of people you would never have met. Its just a different place. A slower pace than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going to Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "yes, That's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

--Author unknown