A CF Morning Routine

cf morning routine

My son Jude is your typical 3 year old-He doesn’t wanna eat and he doesn’t wanna sit still. If he could spend the entire day at the playground occasionally stopping for some fruit snacks-he would. It is difficult enough raising a toddler without having to do treatments and administer medication before each meal.

I’d like to share with you my morning routine as a CF mom, but just this morning because my routine is very loose and daily I have to think of new ways to make the morning easier.

This morning Jude woke up at 7:00 am. He went to potty and get a drink of water. This is by far the easiest part of the morning, although sometimes he has an accident at night and needs to be cleaned up. Sounds normal so far right? After that I begin my attempts in luring him to his vest machine. Some days he sits on the couch and lets me strap him in-these days are my favorite. This morning, not so much. He ran circles around the kitchen screaming “Nooooooooooooo Vest!” When he feels this strongly, sometimes I feel bad that I have to force him to do something he hates doing. Then I remember that it is keeping him healthy. I’m constantly reiterating to him why he needs treatments in the hopes that one day he will understand and do as he is supposed to. Something tells me he will always be a little defiant. This morning I bribed him with the promise to paint while he did vest. That was a no go. I had the tv on his favorite show already and that hadn’t worked this morning. My only option was to chase after him. I chased him, grabbed him up and put his vest on and quickly turned the vest on so he couldn’t move. He screamed for the first 5 min but then got distracted by cartoons. It was 7:20 by then. After vest he did his 2 breathing treatments and was done at around 8. I poured him a bottle of pediasure and added high-calorie powder to it and got his enzymes ready which he needs in order to help him digest proteins and fats. I also made him a waffle with bacon but he refused them. He also takes an additional med with his enzymes which have to be taken with high-fat foods. He took his enzymes but gave me trouble in taking his vitamin. I always have to bribe him with a gummy vitamin to get him to take it. In his defense, his ADEK vitamin is not the most tasty. The gummy vitamin is for fiber, which he definitely needs due to his history of having intestinal blockages. He drank a little more than half of his bottle which is not enough. There is nothing more I can do because it was close to time to go.  After he eats I get him dressed for the day. Today he refused to wear underwear. I decided to pick my battles this morning and let him wear a pull-up. I took him to preschool with high hopes that he would eat his lunch. As I left preschool I kicked myself for not making him brush his teeth. His breathing treatments are hard on his teeth, making it extra important for him. It wasn’t a perfect morning, but I did my best. Getting him into a routine is a work in progress that I know will be well worth fighting for. Lets not even get started on MY moring routine or lack thereof. I’m out the door in a messy bun, mascara and yoga pants in 5 min flat.

jude vest

A perfect morning 

If it were up to me his morning would go something like this

-Wake up

-Potty and have water/Chill for a moment

-Treatments

-High calorie Breakfast along with vitamins and meds

-Brush Teeth and Get dressed

-Get backpack, lunch, water bottle and go to school

I think we are on our way to having a routine but for now, I will have to roll with the punches.

 

 

Nourishing a Child with Cystic Fibrosis

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By: Carson Dickens

Right now, I’m going to ask you to throw away all your knowledge of what makes a diet “healthy” or not. Everything you have learned about low carb, low-fat diets or anything encouraging weight loss-just forget it. I grew up in a world where I could “never be too thin” and “when you lose weight you can have or be this”. Having a lifelong battle with my own weight-my world turned upside down when a nurse called to inform me that my son Jude was pancreatic insufficient when he was a mere 5 weeks old. I never imagined that my child would have the opposite battle-the constant need to gain weight.

Some info on Pancreatic Insufficiency

Not every person with CF has pancreatic insufficiency but what is it? Pancreatic insufficiency is where the pancreas does not produce sufficient digestive enzymes to properly digest fats and proteins. To help solve this problem, enzymes are taken with food to help digest proteins and fats.

How has this affected us? 

When I found out Jude was pancreatic insufficient I had a wave of emotions-horrified of what this would mean for his future and relieved because I had been made to feel guilty that my son was not gaining weight. The nurse who told me the news over the phone advised-“Do not Google it” and scheduled us an appointment to come in to see the nutritionist and GI Doctor on the CF team. Of course, I googled it and tried my best to stay calm until our appointment. At our appointment the nutritionist prescribed enzymes and demonstrated how to administer them. She also explained that it would be hard for Jude to gain and maintain a healthy weight. She took a squirt of applesauce onto a spoon and opened up a caplet filled with tiny beads into the sauce. I remember feeling so lost. How was I going to get my 5 week old to take these before EVERY feeding? It felt so impossible, SO daunting. To my surprise, it was only a few days before Jude was taking them with no issues. He has gone through phases when he would refuse to take them but for the most part, he has done well with them. He is 3 now and will even take them for his preschool teacher. Our next challenge is having him swallow the pills which now seems just as daunting as having him start them at 5 weeks.

Diet for the Pancreatic Insufficient

Despite taking digestive enzymes to help digest food, it still is not enough for Jude. Every patient with CF is different. For some enzymes are enough and they can maintain a healthy weight with them and a normal healthy appetite. For Jude and many others with CF, he must eat more fat and protein than the average child in order to maintain or gain weight. This means drinking pediasure laced with high-calorie powders such as Duocal or Scandishake on top of regular meals. It means bacon followed by bites of pure butter- and rejoicing when he finishes something so fattening that I was always taught to avoid.

jude bacon

It means unavoidable worry when he refuses to eat but it also means that I can bake him any kind of cookies or cakes. I’ll never have to worry that he is getting too much fat or protein-because its simply never enough. At just 3 years old, I know he is going to be picky and difficult so I do my best not to beat myself up if he won’t eat something. He enjoys cooking with me so I take it as a sign that he is at the very least, interested in food.

jude baking

Examples of High-Calorie foods Jude will actually eat:

On the limited diet of a 3-year-old there are very few meals (besides pediasure) that actually are nourishing to my son that he will eat. There are all kinds of stipulations for meals. Here are some examples:

-Mac and cheese with extra butter and high-calorie powder, but it MUST be rabbit-shaped macaroni or its a no-go

-Spaghetti and meat sauce but only if he makes it with his daddy.

-Babybel Cheese-affectionately dubbed “Circle Cheese”  but only the first 2 out of the pack.

-Chick-Fil-A nuggets and fries-but only when bribed with the reward of playing at the playground.

In a perfect world, he would eat as much protein and fact as possible.  A mom can dream. Maybe one day he will eat roasted chicken and veggies topped with lots of butter or something heartier than what he will eat now. At this moment a Lunchable and a bottle of pediasure will have to do.

jude shopping

Jude picking out some snacks for the week.

 

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Jude’s Journey Part 5

We took Jude to his 1st Baseball game a couple of weeks ago and he had so much fun, mostly people watching. A few days later Jude and I both ended up with Sinus infections. I freaked out and took him to Urgent Care when he woke up with a runny nose. I know it doesn’t seem like a big deal but when you have a child with CF, you don’t know what you should panic over when they are this little. His little nose was runny and he just did not seem himself. I took us to a CareNow and the Dr saw us at the same time. She told me not to worry, that she would prescribe us both antibiotics. Two days later we took Jude to his CF Clinic visit and they confirmed that Jude would be ok. They said its normal in the change of seasons for babies in general to get runny noses. Crisis Averted!

Jude won a photo contest that raised money for CF research! He’s the Grand Prize winner in the middle. We won 2 airfaire tickets!

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We went to Miami, Florida for a week. Jude loved pretty much every minute of it. He was good on the plane and he barely cried all week. There was just too much for him to see to be grumpy! His treatments were easy because his Dr prescribed him a travel inhaler for one of his treatments. It takes way less time with the inhaler so we had more time to have fun. The Salty air was great for his lungs and I could tell he felt his best.

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Jude’s Journey 4

When I look at my son its hard for me to believe that he has a chronic illness. He is so beautiful and full of spirit for everyone he meets. He looks so happy and healthy. I was starting to think I may be a little bit in denial about his illness. His enzymes and treatments have become normal so I don’t think twice about it or complain.

I took my son to church camp with me and I couldnt slip further into denial as many adults asked me about his health and how they are treating it. Some thought there were no treatments unless he got sick and some thought he just had one treatment. They told me what a great mom Iam for keeping him healthy and how strong Iam for staying positive but the truth is Im still pretty scared. The future is unknown to me. I see it as selfish if I feel sorry for myself over it. He is the one who has CF, not me. I have no right to feel sorry for myself.

(Books given to Jude at Camp)

There was a camper at camp that I have known for a long time that has CF. Him and my son have to stay away from eachother. When the Dr said he had to stay 6 feet from others with Cf it seemed reasonable but in real life it was painful. I had to say hello to him from a distance even though I wanted to let him hold Jude and play with him. I wanted to give him a big hug and tell him how brave I think he is. I wanted to give him some hope because he seemed particularly beat down this year. It makes me sad knowing that Jude cannot have the commraderie of having a friend going through the same thing as him, it makes me angry. Most people tell me “oh hes going to be so healthy and he is going to be just fine”. I know he will be fine but I also know that life will be hard for him. My church does prayers of administration. They are like prayers on steroids and ones I have gotten have truly changed my life. Through the years I know Jude will need them to stay strong. I know that with prayer, enzymes, breathing treatments, the vest when he gets it and the support of our families and church families will all work together to form a wonderful boy with ambition and drive despite his illness.


Jude is 5 months old today and healthy as a horse. Hes made friends at church and he loves to hear us sing hyms. He doesnt seem to mind his treatments and takes his enzymes with no problem. He started eating baby food and rice cereal. He likes every veggie he has tried! He has put on weight and is no longer underweight!

To find out more about CF and how you can help click here: https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/

Thanks for reading! I hope you have a wonderful day!

Carson Dickens 

My Sons Cystic Fibrosis Journey Pt 2

3 weeks ago my husband and I found out our 5 week old baby Jude has Cystic Fibrosis. We went to a CF Clinic and spoke to several different Drs, did a fecal exam and sweat test. The Dietitian had us start salting and adding extra vitamins and formula to his bottles, easy enough. Both tests came back high-positive for Cystic Fibrosis a few days after the visit. When I got the call with the results, I felt like I had lost something. Something I have been working hard to get for a long time. My dream of having a big family just got a lot more complicated. I didn’t have a traditional family growing up. I was an only child of divorced parents. My dream was to create a beautiful home and have a big family to share it with. My husband and I have done everything right.We had a fairytale courtship and fell in love within a few dates. We were together a few years, went though a lot together and got married. We bought a house a year after being married. We filled the house with everything we could possibly want and more. We dreamed of the ideal family life. I learned how to bake the best chocolate chip cookies, as if that were somehow a part of a great family. I felt like a big family was an attainable dream. I’ve always wanted to adopt but after having Jude I want another child that’s my own.I wanted Jude to have a sibling to grow up with.  I wanted 3 children at the least. I cannot help but feel like I’ve lost that. The chance of us having another child with CF is 1 in 4. I do not want to take that risk and I do not want to to invitro treatment to have another baby. If God intended us to only have Jude,we need to accept that. We are just so heartbroken right now. We are afraid of the future. The last thing we want is for our son to be sick. My heart is breaking for Jude. It’s unfair to him.

With that said, I’m hopeful for Jude’s Future. He’s getting preventative treatments to prolong his life. He will be 2 months old in a few days!

We went to Jude’s 2nd Cystic Fibrosis visit and this is where is really gets to be alot for us. We saw several different drs and nurses and even a social worker (who was useless and did not want to help us or listen to us) We learned details about his disease and how we would begin treatments. For now, he was put on enzymes to help his pancreas digest his proteins and fats better. We learned that his pancreas is insufficient, which explains his extreme hunger. I had been letting him eat whenever he wanted. He’d been eating several bottles of formula (with extra half scoop per serving to up calories). We were pleased to learn at this visit that despite his pancreas, he gained 2 pounds! I must be doing something right. Even though he gained weight he still has to start on enzymes so he won’t be so hungry all the time and he can digest his food better. We were taught how to give enzymes before he eats. We learned about clinical trials and the fact that patients with CF are living longer and longer because of new drugs and early diagnoses. We were given a book from a drug company called “Who am I?” which is an adorable book about a day in the life of a child with CF. We were taught how to do CPT on Jude, which is an airway clearance routine that must be done once a day.We spent 5 hours in the CF clinic waiting for each Dr to make their rounds. We will have to go to the clinic every month until he is a year old and every 3 months after that. Assuming he stays well, it doesn’t seem as doomed and debilitating as I though it would be. They handed us a huge notebook filled with things we would need to keep as reference and things we will need to keep track of. It’s all a little overwheming.

 

He’s been on enzymes for 2 days now and he seems to be going longer between feedings. I was feeding him every 30 minutes but now its sometimes over an hour!

Jude is such a sweet little baby and seems so healthy and happy. You would never know that anything is wrong.

My Son’s Cystic Fibrosis Journey Pt 1

 

My beautiful son grew in my tummy for more than 9 months. I saved every penny for him. I ate the healthiest foods. I sang to him. I made him a nice nursery. I made sure he would have everything he could ever need. I dreamed of raising my boy to love sports,the outdoors and never have to worry too much about his health. My heart grew each month but it was nothing compared to when I finally got to hold my baby boy. (after a quite horrible labor and delivery, don’t get me started) It felt like nothing else could ever matter as much as him ever again. He was perfect when he was born. He was 9lbs and 10 oz with plenty of hair. We went to our first Pediatrician visit and the Doctor  told us we may have the most perfect baby God ever made.He was seemingly in the best health possible. The few weeks following were rough. My baby, Jude, couldn’t go an hour before he showed signs of hunger. I was worried I wasn’t producing enough milk for him as I had been breastfeeding since he was born. He wasn’t gaining much weight. I was blaming myself. . Then I got a phone call. A phone call that put me on a path I hadn’t prepared myself for. It’s not the path I would wish upon anyone, let alone my own son. Regardless, it is a path, it is a life. The Doctor told me that my son was very likely to have Cystic Fibrosis. If you are unfamiliar with the disease if is an inherited life-threatening disorder that damages the lungs and digestive system. This explained his extreme hunger so my guilt subsided. I was familiar with the disease, not completely clueless. (Sometimes ignorance is bliss) I cried for pretty much an entire day cradling Jude in my arms praying that maybe he didn’t really have it. Somehow I knew he did. After getting further testing, I got the second call confirming my fears: He has CF and its on the severe side. I was terrified for our future. Suddenly my dreams of having a healthy normal child faded and were replaced with Dr visits and hospital rooms. I was terrified of the financial strain we were about to get into. I have great disdain for our health system. It’s broken and the cost is impossible to keep up with.People keep telling me that he’s going to be ok, but I know that’s not true. His life will be hard. He will be different and I pray to God that he will be strong.  There will be so many times that he’ll be in pain and there will be nothing I can do about it. Treatments are starting soon and my normal baby won’t feel normal to me anymore. In the days after going to the CF clinic to see the doc and the nutritionist Jude has begun coughing and breathing heavily.The reality of his disease is starting to hit me. When I see him struggle to breathe I wish I could give him my own breath and suffer for him. It’s a helpless feeling. Like I said before, it’s not the path I would have chosen for him but I believe this little one is going to lead a special life. My family is blessed that he was diagnosed so early, at 5 weeks old. The research is looking more and more hopeful as better and better drugs to treat CF come out. After getting all my crying out, I’ve decided that I have no choice but to be strong for him. No more crying. It’s in Gods hands and I fully trust him. It’s not gonna be easy, but nothing worth doing ever is. God has a plan for Jude and our family. I will write updates on Jude here every so often. His disease is not curable yet but it is treatable. We love his team of Doctors so far and believe he is going to live an amazing life!!

 

Its gonna be a great adventure.