Just as one thing gets easier

Just as one thing gets easier, another thing gets harder. Always the way right?! Well with us, the physio has gotten a bit easier. While it's still hard to fit it all in, Nash doesn't fight us on it as much. When we flip him on his side he still blocks us lots with his arms and hands but he's not screaming and wiggling away.

The hard part now is eating, or lack thereof! We had been so spoiled in regards to what a great eater he was. He would eat everything we gave him, and by the handfuls. We would joke about how we could never imagine him becoming a vegetarian as he loved meat so much. He would eat fish, all different meats and every kind of fruit and vegetable out there. Well, now...not so much! It started when we flew to Newfoundland for Christmas. We assumed that it was due to all the changes. The long hours of travelling, the time difference, being in a new environment and he also had a bit of a cold. We had hoped that things would go back to normal once we returned home. Well, it's been another week and a half and it's no better. He'll eat all fruit, his yogurt and take bottles but very little else. 

With Cystic Fibrosis weight gain and maintaining it is a big deal. CF patients have a diet that only others could dream of. Add salted butter to everything, load it up with high calorie/high fat ingredients and eat like a pig! Haha, that's how P.J. and I describe it. There still needs to be balance obviously but my child will eat much differently than one that does not have CF. You'll see me loading on the salt, adding lots of butter, sour cream, and our new favourite Hollandaise Sauce (has 1/2 cup of butter in it!) 

How Does CF Affect Nutrition? (Taken from a CF website called "CF Chef")

Link to "CF Chef" Website

Most people who have CF also have a condition known as exocrine pancreatic insufficiency (EPI), which means that the important digestive enzymes in the pancreas cannot reach the intestines to aid in the digestion of important nutrients such as fat, carbohydrates and protein. If these nutrients are not digested, all of the vitamins and minerals that are in them will not be absorbed into the body. In order for people who have EPI due to CF to digest and absorb the nutrients in food, they need to take supplemental pancreatic enzymes.

To get enough calories to promote normal weight gain and growth, individuals with CF may need to consume up to two times as many calories as a person without the disease. Also, to be sure that the correct amounts of vitamins are available, a multivitamin designed for people who have CF is usually prescribed.

Even though people who have CF need extra calories, this does not mean people with CF can eat foods like french fries covered in cheese as their only food at every meal! They need to balance food intake at meals and snacks to stay on track with weight gain, growth and overall healthy nutrition.

So, taking all of that into consideration this phase of not eating is it bit more stressful to me than someone who has a child without CF. We have worked so hard on offering a variety of foods and hoping that he wouldn't be a picky eater and at one point this brought us to seeing him go from less than the 10th percentile in weight to the 90th! The last clinic visit in December he was in the 70th and I just worry that we'll see another drop when we go in February. I notice a difference in his belly size and the way clothes are fitting but P.J. just thinks it's due to an increase in his height and the laps he does running around our house with his walker. 

Regardless, spending an hour to an hour-and-a-half preparing a meal only to have Nash throw it on the floor the second it hits his tray and then proceed to cry is enough for me to want to walk away and cry myself. I try not to show any emotion but then I'm stuck standing then thinking, now what? I am really hoping that this is a phase and that it passes quickly! 

Last month when he used to love eating!