Must Have Products for a Cystic Fibrosis Family

must-have-products

I wanted to write a post, of products that have made our life easier day to day. If you have any products that you love, post them in the comments and I’ll add them to this post! Having a child with Cystic Fibrosis is very time consuming through treatments and enzymes, any products that can help make things faster/easier are awesome! I am going to make a list, then go into them more below if you want to read the why.

  1. Vital Baby First Feeding Spoons
  2. Cart for Nebs and Vest
  3. Sterilizer
  4. Medical Binder
  5. Pill Keepers
  6. Google Calendar / Drive
  • From day one of finding out that our Meesha had Cystic Fibrosis she had to start taking Enzymes with apple sauce. Can you imagine trying to get a 2 month old to take little beads on apple sauce?!? I wish i would have found out about these spoons much sooner because they are awesome! The tip is seriously flat so it made giving them super easy.

Vital Baby First Feeding Spoons

  • The next item is a cart with wheels! Having to do breathing treatments at least twice a day means sitting in one spot for 40 minutes each time. So that spot changes often, having a cart to wheel around the equipment is a great help. We are able to do treatments in any room of the house without much hassle.The most recommended option is this Ikea cart. We have a Smart Vest and it doesn’t fit well in this cart, or the older version at least. So we made our own which you can see here.

Ikea Kitchen Cart

  • A bottle sterilizer works great for keeping nebulizer parts sterile. When you are doing treatments twice a day, and using at least 2 different neb cups for each set boiling water can be a daunting task especially if you only have a few neb cups so you have to boil after each use. Our clinic recommended the Avent IQ 24 which isn’t actually being made anymore. We were lucky enough to find it on Craigslist. There are a few great options on the market though so I’m going to link you to the ones I’ve heard great things about.

Avent IQ 24 Sterilizer

Wabi Baby Electric Sterilizer

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Baby Brezza Sterilizer

  • Pill and Medicine organization is a huge hassle for many. Especially when your child is an infant with CF and you are having to open the capsules. Many people like to use a contact case in the diaper bag, where they can keep the enzymes on one side and apple sauce on the other for an on the go meal. Here are a few other pill organizers that are helpful.

 

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Water Proof Aluminum Bottle Pill Key chains

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Four Times a day pill organizer

  • Google Drive / Google Calendar / Google Keep – I personally am a Google aholic. Everything connects / syncs perfectly and it has simplified so much in my life. I love how you can create a calendar in google and then share it with other people, so when you add appointments, events, or even med schedule everyone it is shared with will see it in their calendar. Likewise, I have a document in Google Drive that lays out our daughter treatments, how to use the machine, how to put all of the cups together, and when to do what. This comes in handy for us because if she is visiting my mom, she can check the document for updates, or if she forgets something. Plus it has the added benefit of being a fail safe in case something happens to me. Finally Google Keep is amazing! You should have the app, it’s a great note taker, list maker, etc. again you can share the list/note with others. So if you husband stops at the store on the way home, you can create the list from home, for him to use.
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