Friday, February 17, 2012

Organizing life with Cystic Fibrosis

I have had some people ask me what works best in managing a day with 2 children with Cystic Fibrosis.    I am so privileged to be a stay at home mom and homeschooler, so I understand that this may not work for all.

#1....Keep everyone in the household healthy!  Get rid of the processed food and eat good fats and lots of organic fruits, vegetables and meat.  Look into magnesium, omega 3's, probiotics and hypertonic saline solution for your CFers.  Consider taking out gluten and dairy also.

#2...When you find a system that works, stick to it!!!  Kids most often resist change, but as long as you stick to the plan consistently, they will follow right along and most likely thrive from it. 

#3...I have pill boxes for both boys that look completely different and fill them with all the pills they take for each meal and snack.  After waking the boys in the morning and giving them their morning hugs, I fill them up for the day.

#4...Instead of boiling nebulizers each day, I have a 3 day supply.  Each boy has a different strainer that they can reach and plop their nebulizers in, all taken apart, on their own.

#5...We have a quiet time almost everyday.  Where the boys have to stay in separate rooms (so I don't have to worry about them getting into a squabble) and they are not allowed to come out and distract me from my chores.  During that time, I am usually catching up on dishes and hanging up laundry. 

#6...We are blessed to have vests for both boys.  Most often I will have them doing their vests at the same time.  Usually that is right before school starts, so I can get their school stuff ready, or before dinner, so I can cook without interruption.

#7...Utilize the help of your spouse.  It is not an easy job keeping our children healthy!  God Bless those single parents doing it on their own!!!  My husband is often seen washing dishes, getting nebulizers ready, making juice and a plethora of other things.  I don't know want to imagine what life would be like without him!!!!

#8...One of my newer things, is planning out meals.  I only get to go shopping every 2 weeks, so I have to be a pretty good planner for that.  I can't believe how much easier it is when it comes to dinner times.  I have a list of 10 recipes I am going to try in the next 2 weeks and I just need to pick a meal and go with it.  We have about 4 options for breakfast (cereal, scrambled eggs, green smoothie and pancakes or waffles)  and we just eat leftovers for lunch, nachos or nitrate free hot dogs.

#9...Although it is most often frustrating to me that I can't get everything done.  My priorities are my husband and my kids.  If my house is not in perfect shape, so be it.  Getting quality time with my family is of the utmost importance!

#10...I try my darndest not to let my kids get away with anything, just because their life is not the same as most kids.  They do have about 2 hours taken out of their day, doing treatments and drinking their healthy juice.  But this is their life from here on out and I want them to grow up to be adults taking responsibility for their health and all other aspects of their life.  They both have their own chores and are required to clean up after themselves.

Okay, I made it to 10 suggestions.  Hope this helped.  You are more then welcome to leave more suggestions in the comment section!!


  1. I don't know how you condensed everything you do for those two lucky boys into 10 tips! You are fantastic with all of this and are constantly trying to inform others and assist others dealing the same issues. I know I've learned a lot from your posts and I don't HAVE to, but you make it easier to learn. Thank you! Keep up the good work...or I should say, Keep up the good LOVE!

  2. You sound like an awesome Mom!! Your boys are so blessed :)

  3. Your blog is amazing, Melissa! You're such a wonderful mother - your boys are blessed!!!

  4. YOU are amazing! I am 50 years old living with CF, just celebrated the big 5-0 in DisneyWorld with my hubby. I am so blessed to have literally stumbled right onto your blog! I was googling the benefits of coconut oil and CF and I landed on your blog!! Haha well I'd say that was Divine intervention! God is so VERY faithful, you have 2 beautiful precious boys and so very blessed to have a supportive husband. I do, as well and it makes life so much easier :) the Lord has been so gracious, I am humbled. I will be praying for your boys! I'd love to connect with you, maybe there are things I may be able to help you with, although I must admit you sound way more together than I do! Lol take care Missa! May God bless you and have His face shine upon you!

  5. Missa, I posted here last night but it didn't post ;( just wanted to give you some encouragement, I'm 50 yrs old with CF, my sister passed at 42, 10 yrs ago. God has been more than amazing, I'd love to share my story with you especially since you are a lover of Jesus, you'd definitely understand my reliability on Him! I'd love to connect with you!

  6. Hi Missa! I commented last week but I guess it never posted! :( I wanted to tell you I accidentally stumbled on your blog while googling coconut oil and CF and somehow I landed here! lol I'm so glad I did! You seem to be an absolutely AMAZING mom who is so very blessed to have those 2 precious boys!I also have CF, I am fifty, yes FIFTY years old living with CF! My sister had it as well and went to be with the Lord at 42 years old. My mom was told we probably wouldn't make it past seven, let alone into our teens. Wellllll, THAT'S WHAT MAN SAID! My God is greater! OUR God is greater! I don't even need to ask, I can see how much you love and rely on the Lord. Isn't it so wonderful that we have Him? I am an absolutely living testimony and miracle and He has given me life and that more abundantly! I would love to connect with you, and I'll tell you, you seem to have it all together! I definitely do what I have to do (3 nebs a day and meds) but wow, I am not as organized and educated on this as you are! I just want to encourage you with your boys, just keep trusting in the Lord. Like the saying goes, we don't know what tomorrow holds, but we know who holds tomorrow. I will be praying for your family that God grants your boys long and healthy lives and one day they can stand up and speak of the faithfulness of God. God bless you!

  7. Hi Sue, sorry I actually got all of your messages, I just forgot that I have to post them :) my e-mail is
    What an inspiration you are!!! I would love to get to know you and glean from your experiences!!!