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! 

A day in the life...

So back when Nash was 4 months old I did a post about what a typical day living with CF was like so I thought I would do an update. Surprisingly, not a whole lot has changed in regards to his medications and his overall health. We are forever thankful for our CF team for always being on top of things and feel that we have been lucky thus far with his health. He has had cold after cold but we know that this would be the case for most children entering daycare for the first time.

Medications
In regards to medications, Nash takes 3 enzymes per meal, 1-2 for snacks. These enzymes are pancreatic enzymes and do what our pancreas does, which his cannot. He needs to take these every time he has something to eat or drink except for things like fruit, or fruit juice, because there is no fat to break down. He also takes Ranitidine twice a day. In the beginning he took it for reflux, but now he continues to take it in order to help the enzymes do their job. He takes Urso (Ursodiol) for his liver, which has only been since about the end of August. This is common for many CF patients and works as a preventative measure for his liver. He takes this twice a day. AquaDeks is the bright orange multivitamin/mineral supplement and his takes this once a day. We add extra table salt to all of Nash's food. I've gotten a few strange looks in public with this one! CF patients sweat out way more salt than us. That's why they do what's called a "Sweat Test" when confirming CF. It measures the amount of salt.

To the left of the picture are things that are not taken daily. The bottles are an antibiotic that Nash takes when he has a bad cough that won't go away. Since July he has been on this three times. When Nash gets a cold it's not like a typical child getting a cold, it holds on for a long time. He usually gets a bad cough and then I begin to panic. We wait 5-7 days of the cold taking its course and then we call/email clinic and get their advice. We are most worried about a viral infection becoming bacterial. Bacterial infections can cause long-term damage his lungs and depending on how much damage is done over the years, often leads to needing a lung, or double lung, transplant. Our clinic tends to be on the more aggressive side of treatment in order to prevent these bacterial infections from getting into the lungs.

The ventolin inhaler is used periodically when he is sick. Often times children with CF will also have asthma but so far, so good.

Physio
I've written a lot about physio in the past, and our struggles with it, but basically what we do is called "Manual Postural Drainage". By moving Nash into different positions we are able to "beat" on his lungs, haha.  We use a cupped hand position and try to do approximately an hour each day. This is now tough being that we both are working full-time. We have to wake Nash up early in order to get some done in the morning as he's too overtired and cranky to handle an hour in the evening. P.J. does about 15 mins in the morning and then when I get home from work I try to do another 45 minutes. To squeeze this in after work, supper, bath and bed by 7:30-8:00 is a challenge and there are many days where I envy those who can come home from work and have play time and enjoy their evenings. I feel like a lot of my time with him is beating on him and giving him medications:(

Over the holidays a family member did make a great point though, that's an hour of physical contact he is getting with us and that can be pretty special bonding time. When he is calm, I definitely feel that way. When he fights it, I'm pinning him down and he's screaming, I don't feel like we are bonding as much, haha. We just keep hoping that as he gets older and we can explain it to him, that hopefully it won't be so hard.

So that's a quick update.