Along our CF journey we have gotten lots of advice from several CF parents/patients. We have learned so many extras to do for Ethan as in around the house, food, care etc. At first it seems we were extra paranoid and some things we have become a lot more lax with.
Here are some extras we have stuck with.
First off... Diet.
I got advice early on from a cf mom about eating organic. There was lots of evidence that eliminating foods with pesticides, growth hormones and antibiotics help the immune system work better. Reason being the body no longer has to work to fight off the harmful chemicals but can work harder at keeping you healthier. It makes sense, why put those chemicals in your body that kill bugs. At first Ethan strictly ate organic. It was much easier when he was first starting solids and only ate fruits and veggies. Once he was eating like a toddler it was much more difficult. Now we focus on organic milk, fruits and veggies. He gets snacks like teddy grams, crackers etc. A lot of times I can find these in organic but I only buy them when they are on sale. So we are more lax on the organic snacks. For meat we get all of our meat from the local butcher shop, its not organic but its antibiotic, hormone free and grass fed. We figure this is much better than buying meat at a place like walmart thats mass produced. I know that my beef comes from the farmer on county road 9, an Amish man. He doesn't use these hormones or antibiotics.
Patients with Cystic Fibrosis have to eat a lot of extra calories. I will never forget that the dietitian asked if we were familiar with Michael Phelps diet, because Ethan's high calorie diet as a teen would be similar. I completely get that diet as I was a swimmer my whole life. So E gets a high calorie diet and we add calories any place we can. We focus on the good fats. We were told to smother everything in butter which wasn't something I could do. So we add healthy fats such as flax oil, coconut oil, etc. Yeah we use butter sometimes but that's not our solution to add calories everywhere. We also add in high calorie shakes such as boost kid essentials or a scoop of carnation instant breakfast to milk. We also focus on meats for the protein to help him gain weight. We try to eat more white meat than red meat. Diet is something we are constantly getting new ideas for. Today Ethan ate broccoli dipped in peanut butter! Great snack for a CFer and a great way to trick him into eating his broccoli. He also really enjoys Greek Gods yogurt, he dipps his fruit and gram crackers into that. Everything we buy is full fat. Great for E bad for the rest of us.
Around the house....
We are told as parents that the CF bacterias grow in water, dirt, plants, basically everywhere. So we do lots of extras to try and keep these away from E without taking away his childhood (he's a boy, he plays in dirt). Extra cleaning with the bath tub, no standing water in the kitchen, etc. Also we are not supposed to use humidifiers! Although we just recently purchased a germ guardian filter free humidifier because we are desperate. It is supposed to prevent mold and bacteria growth. Some parents even go so far as to rip out all of the carpet and put down hard wood (we hope to do this one day). Ethan also has a salt lamp in his bedroom that puts a little salt in the air and helps with breathing, supposedly, although I am not convinced. We also have a HEPA filter in his bedroom and in our living room. Last winter we purchased a Dyson Vacuum because its great at pulling out the extra dirt and dust mites that trigger breathing issues sometimes. Ill admit... i wanted a dyson long before Ethan was born. It was worth every penny. We vacuumed with our old first, then the Dyson and the amount of dirt it pulled that our regular one missed was outstanding!
We have missed several events because of someone being around was ill. We have had to cancel on several friends visiting because they or their child was ill. It's hard and sometimes people look at us like we are crazy but a simple cold could lead to something much more serious. Children with coughs and running noses are not allowed around Ethan. Obviously everything cannot be avoided and he has had several colds but we do our best. It also effects what we can do on weekends for example. We have left a lot of get togethers early or had to miss events because of needing to do a treatment, especially when he is on Tobi every other month. We refuse to let skipping a treatment become a practice around here. It can be a strain but to us its worth it if it keeps Ethan as healthy as possible.
Regularly Ethan goes to see his Uncle Max who is a chiropractor to get adjusted. He goes every 2-3 weeks. Many people believe that getting adjusted also helps with the immune system and I have to believe it. Ethan has never had more than a cold. He had gotten ear infections and we started getting his ears adjusted and he hasnt had one for almost a year now. There is a lot that can be said for that. Studies have also been done about the benifits of chiropractic... we are just lucky to have 3 in our family.
Church is very important to us and teaching Ethan to know the Lord is our top priority. We want him to be a Godly man and inspire others around him. So going to our church is a bit of a challenge. We go to a church of 3000+ which means lots and lots of kids. There are lots of infants in the nursery and every baby who has entered has come out sick, according to friends who put their children in there. Hey if you have to put a sign on the door that says no yellow/green snot then you know there is a problem. Luckily for us our church assigned Ethan a special friend who takes him while we attend service and does Sunday school with him in a special area away from sick kids. As he gets older he will enter the Sunday school class but not at this time. We are so thankful that we have Kendra to help out with Ethan.
Wow going anywhere with a infant/toddler is hard but throw CF in the mix and you have one full car. When we travel we have to take his vest and nebulizer equipment which is the size of a large suit case when all packed and a cooler with all of his meds that need refrigerated. If we are staying the night its even crazier because we need the normal kid stuff; pack and play, toys, diaper bag, extra clothes, stroller, etc. Its just nuts. Our entire truck is instantly full of baby stuff leaving no room for Sean and I to pack. We are getting ready to fly for the first time this summer and to do that with his vest and nebulizer we have to get a special note from our doctor to take his medical equipment on board as a carry on because I cannot let that $15,000 machine go in the bottom of the plane and get tossed around by the employees!
Well that's just a few of the extras we do... And its funny... I always said I wouldn't be the mom who washed the pacy or sterilized the bottles and that I became...