When it comes to caring for children with rare disease or medical complexities, I never expected that keeping all our supplies organized, our appointments scheduled, and the mental energy that goes into just staying on top of life would be one of the biggest challenges. And as it turns out, I’m not alone with that feeling!
So today’s episode is a community-collaboration. On Instagram, I asked for all your best tips for staying organized, and you delivered! We have hacks for making tube-feeding easier, organizing all the physical “stuff” we need for our kiddos, staying on top of appointments, keeping track of medical information, and more.
If you’ve felt exhausted, overwhelmed, and inadequate about the way you have – or haven’t yet – been able to organize your child’s medical life, this episode is here to make you feel seen and then maybe give you a few ideas to make the organization process feel more manageable.
A big thanks to our sponsors for this episode, Mejo, FreeArm, and the Glory Days planner! All three of these are incredible tools for saving mental and physical energy when it comes to staying organized, and we’re so thankful they’ve partnered with us to bring all these ideas to you!
Links:
To get a link or photo for many of the tools, tricks, and ideas in this episode, check out our blog post!
Check out the video form of this episode for photos of hacks shared! (coming 3/18!)
Get 20% off your FreeArmorder with code RARE20.
Use the Mejo app to organize and easily access all your child’s medical records.
Get a Glory Days planner to stay on top of every appointment, therapy session, and specialist visit.
Listen to Ep 61and Ep 62 for the story of Erica Ryan and her family, and check out the tools Erica made to make lives like ours easier.
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
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