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!
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 FreeArm order 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 61 and 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.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Madeline Cheney 00:00
As with any aspect of being a medical mom, or whatever you want to call it, your level of organization or disorganization does not indicate your value as a parent.
Hi, you're listening to The Rare Life. I'm your host, Madeline Cheney. Today, we're talking all about organization hacks when it comes to raising and caring for our medically complex or disabled children.
And I'm super grateful for all the people that contributed to this episode, because this is another one of our collaborative episodes where I ask a question – in this case, how do you organize all the things – and tons of listeners responded and gave me insights and hacks so that I could compile them all together and kind of package them up for you, in this episode today.
And if you want to contribute to episodes like this in the future, I encourage you to follow me @the_rare_life, and I just ask those kinds of questions in my stories occasionally, when I'm making these kinds of episodes.
So, a huge thank you to everyone who contributed because this would not be possible without you, and there were some fantastic ideas. I'm just so excited to share with you guys.
Okay, so before we dive into sharing some of these really practical ideas, awesome hacks, genius solutions that parents have come up with, I kind of want to cover and do a nod to the emotional implications of organization. And I know that organization, you know, at face value, it's like, wow, that's like a super, just a straightforward topic; what kind of emotional implications could there be?
But because this is just one other way that our parenting looks different than how we pictured, it's just another way that feels kind of unfair. So, on Instagram, when I was asking listeners for hacks for organizing the physical stuff, and hacks for organizing medical information, and the appointments, and all kinds of the more intangible things, I also asked listeners how it makes you feel when thinking about organization for your medically complex child.
And I got some fantastic answers, and some of which I want to read to you, in case these resonate with you. Because I think it's really, really important to address this, especially because during this episode you may feel a bunch of these emotions that people listed. Because again, it's not just a practical, straightforward thing. It has a lot of baggage and a lot of depth to it.
So, one mom said, “In my daughter's first few months of life, I really dove headfirst into organizing information, supplies, preparedness, color, coding things, etc. It was all an attempt to prove to people – and myself – that I was qualified to be a medical mom. I felt like I was auditioning for this role, so now any organizing reminds me of that feeling of trying to prove myself, and kind of wondering if it's all an act.”
So that was from Sarah Harris, and I love how she was able to really notice that in herself and be so self-aware. And I'm guessing that there are a lot of parents now listening that are like, “Oh, that's that feeling. Yes, I totally feel that because that is so relatable.”
And I just want to encourage you to keep in mind throughout the episode, and then just whenever you think about organization, or you go to organize your child's stuff, that you don't have to prove anything, and you are enough as you are. And that there is no one who was perfectly cut out to care for a medically complex child, we all are just doing our best.
And so, I really, really hope you can have that compassion for yourself and not have any shame attached to it, or any feelings of failure, that we're all just doing our best. And that as with any aspect of being like a medical mom, or whatever you want to call it, your level of organization or disorganization does not indicate your value as a parent.
Okay, so I think the rest of the answers that I have here really come from people on different ends of the spectrum of like, people who naturally are organized, and people who kind of detest that, and then everywhere in between.
So, one parent said, “I feel empowerment. I use this space to shine with my organization skills, and I help my kid, which of course that feels good.” You know, I think we all have skills that are natural abilities that we are able to use to our advantage and caring for our child, and that feels so good. So, it could be organization, but it also could be things like empathy, or maybe you were a medical professional, and you know the medical system really well, or maybe you're bold and you can be the squeaky wheel and you know how to advocate for your child.
And on and on and on, there are so many ways that I think we have a strength that we can use to help our child in this situation. And that feels really good to find that. So, there may be many of you listening today that are in that camp, that love organization because you feel so capable as your child's parent.
Another parent said, “I feel in control and everything else feels out of control.” And then, another says, “Having things organized helps me feel prepared, and I don't have to worry about emergency situations.” Yes, that can feel so good.
Another one said, “I feel sad. I'm still grieving, and I wonder if this is something that my child will need forever.” Yeah.
Another one, “When people come over and see her meds, supplies, etc., they're like, wow. And that makes me feel alone.”
Another one, “Mild dread at thoughts of my death, and how would people care for my child?” Yeah.
And then a few more words to describe that people used: anxious, overwhelmed, angry, sad, empowered, in-control, chaotic, like a care coordinator instead of a parent, like it shouldn't be this way, total overwhelm, and tired. So, whatever can't befall, this episode is for you.
Okay, so this episode is going to be overwhelming, And I want you to know, right at the get go, this is not meant to be something where you try to do all the things. We are going to present you with a menu of options, of tons of different ideas, just to get you going. You might take a few of these and do them step-by-step exactly how the person explained it, or you might be like, “Oh, that's a cool idea, I'm gonna take that idea and run with it in this other direction.”
I just really encourage you to just take from this episode whatever is helpful, and make it work for you in your situation, and your child and their level of needs, and your personality, and how much organization you feel like you actually need, or how little organization you want. Just really, really customize this to yourself.
And before we jump into all the ideas, I want you to really identify your biggest pain points. And really keep those in mind while you're listening, because I think that can be a really cool way to find focus in this kind of brain dump of ideas.
So, you can be like, “Oh, right there, there's an idea I can use to help solve this issue that I have.”
And so, during the first section, which will be all about the physical stuff, how we organize all of that, I encourage you to kind of reflect on that. And so, you know, is it the tray changes that happened downstairs, and you always have to run up the stairs to grab all the supplies? Or are you always scrambling for clean syringes, and you don't know where to find them? Or do you hate cleaning out feedbags?
So, just think in your head really quick, maybe even pause the episode, and give us some time to name maybe one, two, or three things that are your biggest pain points with physical supplies, so that you can really make the most of this episode and all the ideas. And I will remind you do the same thing when we get to the section all about more of the organization of the mental load of the medical information, of appointments and all the things.
Okay, so let's dive into the first section, which is organization of all the physical – all of the medical supplies, and assistive devices, and just everything that goes into helping your child remain safe and cared for. And I have tons of ideas from so many parents, but before we jump into those, I want to give you just a few organization tips that I've used in my life.
I happen to be one of those people that loves organization; it's like really fun for me, it's like a game. So, I just was thinking like, man, what would I share with parents? And these are like super general tips and kind of things, I mean, I didn't come up with these, these are things that are taught by organization experts
But like, one of the biggest things is to make things as conveniently accessible as possible, and especially when you're talking about medical supplies, because these are things that you're often either accessing on the daily, maybe several times a day. Or, if you're not daily, it's very likely that they're emergent situations that you're grabbing it like, oh, shoot, he can't breathe, let me go grab the suction machine, which we don't normally use every day, but like he needs when he can't breathe.
So, you know, these are gonna be things that we want accessible. So, I think really asking yourself, you know, where do you use the item most often? Do you use the suctioning machine in their bedroom most often, or is it while you're eating meals together as a family? And so, like, that can really inform you of like where the best place to put it, so it makes it as easy as possible to access it, but then also to put it away again.
And then, it's also important to know how often you use the item. If it's something you use every day all day? Man, bring that around with you around the house, or just make that thing so accessible. If it's like once a month, maybe the garage is a great place for that. And then I think the containers we use or like where we're putting them also matters, just to make it really easy to grab and go.
And then the second tip that I have, and the last one, is just to dump everything out that you have. If you really want to do an overhaul of maybe all your supplies, or maybe just one category of your supplies, whatever you're organizing, it really helps me to get it all out. And you can really look at it all, and you can categorize it that way, when it's all laid out on the floor. And that can make it way easier.
And then, make sure that everything is really well labeled, or is in, you know, clear containers so you can see it, so you're not rummaging through when you need it.
And as we're going through all these different tips of actual, specific ideas, there are going to be a lot of specific supplies that people use to help them organize their supplies, right? Like the…I don't know, the certain item, the product they bought and repurposed into a holder for all their syringes, whatever. Like the actual thing that they use to help them be organized.
And I stumbled upon a nonprofit organization that is just fantastic. A listener told me about them. And they're called Lily's List. And they literally are dedicated to providing families that have kids with medical conditions with organizational supplies. So, like, that's what they're dedicated to. And so, I asked the founder Taylor to explain that organization, and what they offer in her own words.
Taylor Costello 11:39
Hi, my name is Taylor Costello. I'm the executive director and founder of Lily's List, which was started on my desperate need to control and organize my daughter's medical supplies in our 900-square-foot apartment.
My favorite organizational hack is probably labeling everything. Labeling everything. I cannot keep track of things very well, so I labeled everything from her meds, to her supplies, to her folders for all of her doctor's appointments information. I mean, I labeled everything. I think that's probably one of the best things that helped me, especially when we had people coming and going, or different nurses that maybe were filling in, it was really helpful for them.
They could just look and everything was there, which is what propelled us to start Lily’s List. Lily's List supplies families who have medically fragile children, with a love box full of organizational supplies to help the families organize their child's medical supplies so everything is much more clean, everything is in a place that's safe, and sanitary. And it also just helps with day-to-day life.
If you're a family with a medically fragile child and you would like to apply for the box, please, please visit www.lilyslist.org/parent. Or you can just visit lilyslist.org and navigate to the parent page. There's also a link in the Instagram bio on how to go directly there.
Once you reach the Parent Request form, you can go through and manually select each item that you think would be beneficial for your family, your child, and your home.
The items include a label maker, a whiteboard, a clock, a surge protector, straw brushes, a bottle warmer, a shoe organizer, cord wraps, file organizer, a bottlebrush, a grass drying rack, and then a G Tube or really any feeding tube cleaning brush.
And then, we give you the option to have magnetic labels for your whiteboard. If you would like that, you get a sheet. And they're customized, so you can just cut the ones you need and the ones you don't need, you can just throw them away or keep them for later. That's about it!
The cool part, the one thing that I like the most is that you don't get junk you don't need. And we try to de-trash everything as much as possible because we know firsthand experience how much trash comes with DME and all of that kind of stuff.
Madeline Cheney 14:16
Isn't that amazing? So, there's a link in the show notes to her website to be able to apply for that, there's no financial restrictions on that, which I just love. There are very few hoops to jump through, which she did very intentionally to make it as easy as possible for families like ours to access that. So, there's a link in the show notes for that.
And then also in the show notes, I will put links to every organizational tool and resource that we mentioned in the episode just to make a big master list. So, you don't need to be jotting down the specifics of things, those will be there.
And then, we will also be doing a giveaway this week on Instagram, to give gift cards for families to be able to purchase the other organizational tools that maybe Lily's List doesn’t offer. So, those will be gift cards to IKEA, just because they have tons of organizational systems and tools that you can use. So go check that out too, I really want to help you guys get started on this.
And I will say too, before we jump in, so a lot of these might be kind of hard to picture. As much as we try to describe them audibly, like, it's just sometimes nice to have a photo of what they're talking about. And so, a lot of these parents that contributed sent me photos of the setup that they're describing.
And so, on Instagram, I'll be posting throughout the week, reels that have the picture of their setup, paired with their voice of explaining it.
And so, if there are any of these things that you're like, “Man, I want to go see how they did this,” you can follow me on Instagram and check that out throughout the week. And just cross your fingers, I guess, that I'll post one that you were particularly interested in seeing.
And then on the website, we will also have all the pictures that people sent me of their organization setup. So, you can go there and look at those pictures if you're like, man, how did they do that?
Okay, so as far as like real, tangible ideas, we first have feeding tube related hacks. And several parents have used command hooks to help them with that, and I think that's so great. I love to keep just a big drawer full of command hooks of various sizes – I told you; I love organization – because I just think that those come in handy with a lot of different things.
This parent was talking about using it specifically for their feeding supplies. And so, she said she loves to hang a command hook right by the kitchen sink, like right above it on the cabinet right there. And she can just hook on the feeding tube bag that had the formula in it, and it can drain right into this sink while it's held up high like that.
And I think that's super awesome, and it's also just accessible right there when you need it. Because again, that's something that you're gonna use day-in day-out throughout the day. So having it right there is super awesome. And then, you can also hang command hooks throughout the house, like where you might be hanging up the pump.
Like, if you use just the little backpack that comes with that, I know that's what we always did, having hooks throughout the house so you can just loop it right on is super awesome. And especially in locations, you know, that you usually administer feeds.
And then another idea someone had is to use what's called a boon lawn drying rack for washing and drying syringes. And I had to Google search that, to ask like, what is that. And we have one too, I just didn't know what it was called. But it's basically a drying rack that looks like fake grass. And so, it just is really great for just like propping up little things.
I think it's usually used for like bottle washing, and like all the little parts that come with bottles. And so that also works really great for a lot of little parts, you know, when you're washing out the feeding tube supplies, and the syringes, and all that. So that's a super awesome thing.
And then there are a few products that are really helpful for us, making tube feeding a lot easier. And so, I have a recording from one mom explaining the Flying Squirrel.
Megan Schneider 18:05
Hi, my name is Megan, and my family and I love the Flying Squirrel tube feeding holder. Plain and simple, it has made our lives so easy.
When the doctor originally told me that my daughter would need a feeding tube, I thought our lives would be limited in pretty much every way. I wasn't sure how we would be able to leave the house, I wasn't sure how I was going to manage an IV pole around my house, because my daughter was and still is J tube fed. So, she’s fed 11 hours throughout the day.
So, during those long feedings, I needed something that was easier for me to carry around and manage. And so, that's when I was recommended the Flying Squirrel. What it essentially is, is a hanger that holds both the feeding bag and the feeding pump. And so, it eliminates the need for an IV pole, really.
It hangs anywhere a hanger could hang really, it could hang on a dresser, on a crib, a car seat, a wheelchair. I've even taken my daughter for hikes and walks around the neighborhood and just hung the holder right on her front pack. So, I'm carrying her and her tube feeding all in one. I can be hands free. It is truly amazing and life-changing, and I would recommend it to anybody who has a child with a feeding tube.
Madeline Cheney 19:32
Awesome. And then when I was hearing a lot about the Flying Squirrel, I also got a lot of messages from parents about something called the 3D Tubie Dad Pump Holder. So, this mom can explain what that is.
Andrea Austin 19:46
Hi, we use the 3D Tubie Dad Hanger for our G-Tube, because I found them on a support group on Facebook. And, like, the Flying Squirrel looked really great, but everyone said it didn't work well for bags that were longer, like the 1200 milliliter beds. And they work the best with the 500 milliliter bags, but we have 1200 milliliter bags because she has a large amount of G-tubie that she gets every day.
So, I looked at them and sat to try it out, and it worked perfectly. They're like the Flying Squirrel, but they're all 3D printed. We did find that the handle on it sometimes starts to fall apart, so we tape it with duct tape around it, and then put more duct tape over that to keep it lasting longer.
It In general lasts about one-and-a-half years, or two years, depending on how heavily you use it. We use it pretty heavily. They have ones for kangaroo pumps too, which the Flying Squirrel never accommodates. And with ours, we can easily slip it into a backpack and hang it from a little hook that I put in there. Or we can just take it out and you can carry it. And it's very convenient for longer bags. I really like it.
It's a lot like the Flying Squirrel, but really – in my opinion – better, because it, you know, accommodates longer bags, and it can go in the backpack easily. And yeah, I highly recommend him. He's on Etsy. And when ours broke, and that was like the third one we had to buy because we have a replacement one in our cart, he said that to us for free.
He sometimes gives discounts too if it starts to fall apart sooner, and so if you just stay in communication with him, he's a really great person to work with in general.
Madeline Cheney 21:21
Yeah, so this one works with kangaroo pumps as well as infinity pumps, where the Flying Squirrel only works with infinity pumps. And then it also holds larger bags than the Flying Squirrel.
I will say the Flying Squirrel has really cute prints. (laughs) So, this is just gonna be like to each his own, like whatever works best for your family. And then we have an audio submission from a mom who figured out a really clever way to set up her feeding tube and pump.
Hannah Tokaryk 21:45
Hi, my name is Hannah. and this organization hack is for a kangaroo pump because we were going crazy with the IV pole, and then trying to find ways to hang the bag without the IV pole.
So, we purchased one of the FreeArm feeding tube assistants, which are amazing. And then we use the IV pole clamp. We kept that on the pump, and then you just twist the knob right onto the feeding arm itself, and that kind of secures it.
The only problem is that then your feeding pump is kind of uneven because of the clamp. So, what you can do – and what we've done that was supposed to be temporary but has turned pretty permanent – is we taped a deck of cards on the bottom, and that evens everything out. So that way, we have like a totally nice little unit that's compact, and we can bring it anywhere and put it on pretty much any surface.
Madeline Cheney 22:43
Okay, so as Hannah mentioned as part of her contraption for her child's feeding pump, she uses the FreeArm, and I love the founder Misti, and this product is so cool. I know a lot of families love using it.
It is usually used for gravity feeds, although like you heard Hannah, you can use it also with a feeding pump. So, I contacted Misti and asked her to kind of explain in her own words. I think her story is so beautiful.
Misti Staley 23:15
Hi, this is Misti. My husband and I needed a helping hand tube feeding our son Freeman. Gravity syringe feeding during the day, and then pump feeding at night. So, we created one: the FreeArm.
The FreeArm clamps to flat surfaces and rounded bars. The clip at the top of the FreeArm holds gravity syringe feeds, and with the free arm spendable arm, you can adjust the height of the syringe. Higher for feeds to go faster, and lower for feeds to go slower.
The FreeArm also holds a lightweight pump and feed bag, or infusion bag, up to 1200 mL, allowing you to ditch the cumbersome IV pole.
The FreeArm bends up easily to fit in your bag, making meals easier at the hospital, home, and on the go. Contact your home supply company today and request that a FreeArm be built to your insurance, or order online at freearmcare.com. Use code RARE20, r-a-r-e two zero, and save an additional 20% off the already reduced at home patient pricing. We miss Freeman every day but are so happy to know that the FreeArm is now helping families worldwide.
Madeline Cheney 24:19
Awesome. Yeah, so there is a link in the show notes for that. And a huge thank you to FreeArm for helping sponsor this episode. Okay, let's move on to the next section which is about kind of more organizing what the general stuff.
Anna Crabb 24:30
My number one tip for keeping things organized is to just order what you need. The DME will often ask you if you want last month's order, or the same order as, you know, every single time. But you can get way too many supplies this way, because oftentimes they don't use everything in an even manner.
So, every month I take an inventory of what we have, and I only order what we need. And that helps clear out the clutter. Something that helps me stay organized is to throw stuff away. When my son first came home from the hospital, we brought home every single thing that they had. And then the DME for many months was sending us things that, you know, we were trying out.
And eventually, I had a ton of stuff that we actually weren't using. But for whatever reason, I felt like I didn't want to throw stuff away just in case we needed it. But after you feel like you have a pretty good idea of what your child is going to be using on a consistent basis, throw everything else away, or donate it to a local medically complex page that you're on. It's just not worth the clutter. If you do end up needing it, just order another one.
Madeline Cheney 25:33
Yeah, I love that one. So, as you mentioned, you can gift these extra supplies through Facebook groups, that's where I've done it. And there are probably other ways to do this, but if you just get on there and try to find a group that's local to your area, that is for parents of children with, you know, medical complexities, they'll either let you post things on there and be like, “Hey, I have you know, a bunch of these extra supplies,” or they can even point you towards a group that might be dedicated towards that. Which I think is really awesome for us to be able to help each other out.
I think through like insurance laws and stuff, you're not really supposed to or allowed to sell the supplies if you got it through insurance, but I think it's a great way to like, give it away to each other. I'll say this too, like, yes, it is best to be like give it away so it can be repurposed. That's like more eco and stuff.
But, if you are, like, so overwhelmed, and you don't have the bandwidth, like, here's your unofficial permission to just throw it away. I know, it's horrible. But like, if you think about it this way, like, either you're storing stuff you don't use in your house, or you're storing things you don't use in a dump. So.
Okay, another awesome idea from Anna.
Anna Crabb 26:40
It's really, really important that your system is simple. It won't be sustainable if it's not simple. So, for me, that looks like bins that don't have lids, or drawers that just kind of have designated areas.
When you're stressed and busy, you just want to be able to grab and go, and not have to put everything back together, or try to dig through something to get what you want. It's easier just to keep it super simple, so that it's easy to maintain.
Madeline Cheney 27:05
And then another idea is to use – I heard this a lot, and actually we did this, it made me feel so cool, I was like wow; I didn't realize this was a thing. But like, using over the door shoe organizers is really popular. I know that Taylor mentioned that in her explanation of what products they offer on Lily's list.
But that's just super great, because like all these little pouches that are usually made for shoes, but like you can stuff wherever you need to in there and has little slots that that are usually really good sizes for you know, different tubing or whatever it is that you have. So, that's a super great thing to have on hand to organize your stuff.
And then another thing is using mason jars for syringes or other awkward items that are kind of hard if you don't want to put them in a drawer or something. I use them for Kimball's, like, all his topical creams. And it's just super great, they're so accessible and easy to see because it’s clear glass. It’s just super great
I use the smaller ones, I think it's like the half-quart, I don't know. Like the smaller, the shorter ones, those are usually easier to get things out of.
And then another awesome idea from Anna.
Anna Crabb 28:07
So, after you've created your system and you have designated spots for all of your supplies, I found that we need just a little bit more flexibility sometimes. So, I cleared out a shelf and created a designated overflow area. And that's just for the times when the DME sends you way too many supplies. If you have a certain category and that bin’s full, you don't want to stack it up on the floor next to it because it can get out of hand really quickly, or sometimes you just get random supplies that you know you aren’t normally going to be using every month. So, I've loved having a designated overflow shelf.
Madeline Cheney 28:41
And then another option for this is having a set of shelving in the garage or basement, or somewhere that's just kind of like out of the way, to store longer term if you have a lot of excess supplies.
And then you can just pull out of it when you run out. And that's great when it's labelled in clear totes.
Okay, and here is a fantastic idea. I just love this one so much.
Megan King 29:02
So, we were able to find a full-size medical table, like one that you would see at a doctor's office. Just think, like, a sturdy table with a padded top, and vinyl so it's easily wiped down. And it is the perfect height for a changing table, and it's extra long. So, as my son gets bigger and longer, it still fits as opposed to a baby changing table.
And we have that tucked alongside a wall, and on the wall that it is pushed up against, we have shelves on that that hold all of his medicine, water for G-Tube flushes, you know any gloves, medical supplies of any kind that we may need, and we just keep them in those shelves right above the changing table.
And then right below the changing table, we have drawers where we keep extra supplies. Like, just basic stuff, diapers and wipes, but also extra extensions for the G-Tube, syringes for medicine, gauze, tape, anything that you may need.
So that as we're doing things for the G-Tube, to clean it, or dress it, or any of those kinds of things, it can be done on his changing table, so that my husband and I don't have to lean down or do it on the floor or risk getting any messes on couches or beds. And it is really convenient. And we just love it. So that is probably our best hack.
Madeline Cheney 30:33
Okay, and then another idea is using a rolling cart.
Andrea Torres 30:37
Hi, I'm Andrea. And the tool that's been really helpful for us has been a rolling cart, like a two or three tier rolling cart from IKEA, or any number of places you can get them from these days. But I actually don't use it in my home. I've got a small little apartment, so my stuff is all easily there, and I can quickly get to it.
But at Dad's house, his mom there uses it, and puts like all the things that we need – all of his feeding stuff, because he’s G-Tube fed, so all of his feeding stuff that we need access to, all of his diapers and things that we need access to, all of his rescue meds and things that we need access to.
All goes on this cart so that when she needs it, no matter where she is downstairs, she can just roll it into that space, right? Whether she's in the kitchen, or the living room, or the dining area, or his bedroom, she can just roll it to wherever she is, rather than having to let go and get all the individual items and bring it with you. And it's incredibly, incredibly helpful. And just reduces the need for 10 arms. So, again, that's like IKEA, I think I've seen them at Target, and I'm sure a dozen other places too.
Madeline Cheney 31:48
Yeah, so the rolling cart was a super popular one, I heard that from a lot of people. And you know, IKEA does have one that is super great, that's one that we have. And so, that's one of the reasons that we're doing our giveaway with IKEA gift cards.
So, like, if you want to get the rolling cart, that can be something you get with it, or whatever else; they have tons of organizational things in there. Again, head to our Instagram to enter that giveaway.
And then we have this awesome hack from Emma.
Emma Calvert 32:17
I just want to tell you about the amazing cupboard that we have in my daughter's bedroom by her bed. So, her one element of her condition is she has reduced respiratory function, so she needs a BiPAP overnight, and we use a nebulizer, and a suction, etc. So, all of this needs to be by the side of her bed, but we want to keep it clean and organized.
So, we have what retails as a hideaway home office cupboard. It has a nightlight on the top, and a box, it looks like a regular cabinet. And then you open the cupboard doors, and it has all of your equipment inside on shelves that will slide out so you can access them when you need them.
And there's little drawers, usually stationery is meant to go in, but we can put in the filters and saline and tubing. It even has cutouts at the back for your cables to go through to plug in. So, everything's we need it.
Madeline Cheney 33:17
And then another idea that someone mentioned is using silicone magnetic ties for all the cords – just like to keep all the cords tight and rolled up, so that they're not like all over the place. I know there can be so many cords with all the different machines. So, there's a link in the show notes for that one as well.
Okay, and then we have a few ideas for when we're on the go.
Andrea Torres 33:38
Hi, I am Andrea, and I have nailed down for us a way to organize all of our rescue medication supplies. Benjamin has three different, like, rescue kits for all of his needs, and so I found little first aid kits, bags, essentially just empty bags, that's three different colors.
So, I got one of each of those, and then I printed out like the iron-on print-on things, you know, I printed out the label for each of them, and put a label on the handle, and a label on the front. So, one for seizures, one for his G-Tube one for his vomiting syndrome. And so, they're all labeled, so you don't have to open it to see what's inside to know what it's for.
And then, I put every single thing that you would need in that kit. So, you don't have to get up and go to where the medications are. You don't have to get up and go get water. You don't have to get up or get a G-Tube extension, whatever it is that you need to administer medications, you don't have to get up because it's all included in this little kit.
And also, I created a laminated instruction card. So, detailed instructions of how to administer medications, the name of the medication, the dosing, as well as just an overview on the diagnosis and how it presents in Benjamin. There's also a little QR code on there that links to a YouTube video that I created on how to do it this whole process.
So, for me, it's helpful because I don't have to remember the dosing amounts, even though it's in my head now. But in the moment, sometimes it's like, am I doing this right? You can look back and make sure you're doing it all correctly. And it's also super helpful for other people that care for Benjamin because they have everything that they need, right there, too. So, it's been incredibly helpful, I keep them all together in his little rescue pack that you take with us everywhere we go. And it's also really easily accessible in our home as well.
One of the organization hacks that I have used is just a simple first aid kit, but it's for his school nurse. It's like a big one. But it's a bag and it’s just empty, right, there's no stuff included in it. But it's a bigger bag. Ben has three different rescue kits, he has three at home that I have, and then all of the medications for the nurse.
So, I put it all in one kit for her, and then three different instruction cards for each different situation that they would need to administer medication. So, they have the health protocol, right. So, her and I work together in she wrote up the health protocol that the way that she needs to write it up for the school, and I integrated that language into the instruction cards that I laminated and put into that kit. And then again, all the things that they would need go in there.
So, I put the things that I need that I have to provide. And then any other things that they need to provide, they just add into there as well. So that it's just much more organized for them. Otherwise, it's just all on like plastic bags and all these different things they have to pull from.
I just like to make it as easy for the people caring for my child as possible, even if it's not in my own home. Because I know it goes a long way for me, it's a simple way to make Ben's nurse at school her life easier because she does so much for him. It's like a little way for me to say thank you, here are his things in a very organized, easy to understand way. And she said it's very helpful.
Kate Livingstone 37:00
Hi, my name is Kate, and we use the Everyday Original Bag from the Blueprints Project to organize my daughter's trach supplies. We refer to this as a medical go bag. Originally, the product was created to pack a bunch of things in the back of your car, but we use it on a daily basis.
In this bag, we're able to fit her Ambu bag, spare trachs, diapers, gauze, her EpiPen, all the stuff that we will need anytime we leave the house. It's amazing. It's super organized, it's wipeable, it's made of leather, we can hook it on anything, we love it.
Madeline Cheney 37:34
And then Alex said about the same bag...
Alex Johnson 37:36
It's sort of like an extra-large toiletry kit. It's really wonderful though, it has clear pockets, it zips. So, you can at a glance, see where everything is. There's also a key included at the top of the bag. So, you can write in pocket number one, ‘our G-Tube supplies,’ in pocket number two, ‘our trach supplies,’ and pocket number three are pieces to a trach circuit. There’re all these different pockets of sizes, and it's just really wonderful.
And then another idea.
Megan Schneider 38:12
Hi! My name is Megan, and I organize my daughter's medical packing list on a piece of paper. I organize it by category, so I have all of her feeding stuff in one area, her suction stuff in another, meds, treatments, oxygen and so on.
And what I do is I put this piece of paper in one of those plastic clear laminated sleeves, and then we use a dry erase marker whenever we need to pack and so we just crossed stuff off as we go. And then you just get to use the same sheet over and over. Super easy to update if there's things to add or remove from the list. And it's just nice to have.
Super handy, we had an emergency last week, and it was super nice. My husband grabbed the list, grabbed my dry erase marker, and we just went to town, and I could cross things off as we went. So, it just helps ease our mind – whether it's an emergent situation, or a situation that's controlled and we're actually going somewhere fun and not the hospital. But either way, it's been a lifesaver for us.
Madeline Cheney 39:19
And then for meds, someone had the idea, and I think this is so awesome. She said she color coordinates all of the syringes and the medicine bottle caps with bright washi tape. Right, so you could match them super easily if you need to keep those syringes separate, depending on the medication.
Another parent said they use a soft sided caddy for medication syringes and straws. That's super great, because you just have like this little kit, and you can bring that to where you are in the house because you may not always be the same place when you're administering medications. And I think, so the soft sided caddy, those are usually I think like sewing caddies, I think is what you can look up for that.
Okay, and then in conclusion, Anna has some great insight for us.
Anna Crabb 39:59
Supplies are extremely overwhelming, and if you have a partner, I highly recommend that you get them on board with the system that you're creating for your child's medical supplies. Things can get out of hand really quickly, and it's just going to happen that you will get burnt out and you won't be able to keep it all maintained. If you have a partner that is supporting the system, putting things back in their right home, that's just so much more sustainable that way.
If all of this feels kind of out of reach for you, or you feel like you're not naturally inclined to be super organized, I think that's totally fine and very normal. Because this is a whole ‘nother level of organization.
I tried to utilize other people's skills to make up for where I lack in this area. One of my favorite resources is an Instagram page called Organized with Tracy, she teaches you really practical tips on like the order of operations for when you're starting an organization project, and things to consider. And it's very straightforward. So yeah, use your resources if you're overwhelmed.
Madeline Cheney 41:02
Okay, so we're gonna kind of shift gears now into more of like the mental load, which is like with appointments and medical information. All the things that are intangible, that we need to remember or keep track of.
And I would like you again, to kind of take a moment and think of what your biggest pain points are, in regard to this. So, you know, is it the specialists that asked for follow ups, six months out, but you can only schedule them like four months out, so you have to delay scheduling, and then you totally forget them, and then they're more like every nine months? Which I totally have never done. Just kidding, I have.
Do you want to be more intentional and getting therapy tasks done between visits like they assign? Or do you struggle to keep all the medical events and procedures and specialists and all the things straight, and you feel totally out of control with all those things?
So I just want you to name one to three things that you want to revamp, or rejuvenate, or just kind of like, figure out some solutions for, so that while we're talking about all these ideas, you can more effectively name like, “Oh, that seems like that would be really helpful with that,” or, “I'll tweak it to fit my needs.”
So, I thought it was super interesting getting these ideas from parents because there wasn't really, like, an electronic planner system that was made specifically for our situation, right? Like, people listed different generic things, but there really wasn't, like, at least that I was told, I was told like there might be something out there. If there is something out there, please message me and we will get this far and wide.
But for right now, there doesn't seem to be any way to schedule appointments and keep track of those digitally that is specifically made for that. But what a lot of families use is things like just Google or Apple calendar. And I just had one mom explain how she uses that and caters that towards the appointments and all the things.
Sarah Harris 42:54
Hi, my name is Sarah, I have a couple of tips on organizing appointment information and calendar stuff. First thing, schedule things out as far as possible. You want that information accurate in your calendar, ready to go to schedule the next thing. That way, you don't have to worry about double booking yourself, or having a weird appointment day, anything like that.
If you can't schedule out that far for that one-year-out two-year-out, follow up, ask them, “Hey, how many months in advance do I need to call to schedule this?” And then set that reminder for yourself some time in 2024.
The other thing is color code everything. Right away, when I put something in my calendar, I color code it for our family to match some bins we have at home. My daughter is blue, so her medically complex appointments stay blue, which is the default color in Google calendars. My son is purple, mine are green, regular house or family stuff is red.
And then any past events, like G-Tube changes, or when I ordered supplies, that things like that, they're color coded as gray. But I make them all day events, so it's easier to find when I wonder, hey, when did I do that thing?
My last tip is kind of specific to Wisconsin where we live, but I think it might be helpful for others. Whatever system you're dealing with, we have a system that pays us a small amount for mileage for driving to and from appointments. But I have to call about each individual appointment ahead of time. So, appointments go into my calendar as light blue or light purple to start, and then after I make that call to schedule this system, they switch to dark blue or dark purple. Those are my tips.
Madeline Cheney 44:43
And then there's this app that another mom was telling me about, it's called the Famcal app. I'll put that in the show notes because it's like kind of confusing, it's f-a-m-c-a-l, and she said that works super great for all of their needs, including their child's medical appointments and things like that.
And then another thing that, like, for scheduling all the things, a lot of parents talked about just using generic planners – just planners that anyone would use. And then some parents use like a giant whiteboard, and with like color-coded dry erase markers. Others use a giant calendar.
And so those are kind of, like, ways to just take systems that other people use and just apply that to our lives, and maybe we'll just be more full than other people have, but just kind of like using those for the medical stuff too.
And then there is this awesome planner called the Glory Days planner, and I'm sure that some of you have heard of that or even use it. So, it is a planner that was created and designed by a fellow disability mom, Amanda. So, here's a little message from her, and I'll explain a bit more about the features of this planner.
Amanda Cunningham 45:48
As a caregiver, your days are packed full. Therapy appointments, medical appointments, medication tracking, plus all the responsibilities of everyday life. The Glory Days Co. has created organizational tools to take the life of a caregiver, and everyday responsibilities, and pull them together in one beautifully designed daily planner.
The Glory Days Co. offers organizational tools for parents and caregivers of individuals with disabilities, medical complexities, or delays.
We hope that you'll visit our website to learn more about how our products are designed to support you and the role you've been called to.
Madeline Cheney 46:25
Yeah, so this is a very beautifully designed planner, like it's so cute. So, if that matters to you – which, like, no shame, that can be a definite plus – it does have therapy and behavior tracking. And you can set daily self-care goals, and therapy and appointment reminders, and quotes from other parents of disabled kids.
And I would say that definitely the biggest function of this, it's a true planner, right, like so that it has like the weekly sheets, and you can put in all your things. So, you can put it on all those things that are disability related, but also very much use it for just daily life things, like, do laundry. Or, I don't know, whatever you like would write in your planner that's not necessarily related to your child that has medical complexities.
So yeah, go check that out, there is a link in the show notes if you want to go look at pictures of that and order your own.
And then another physical system you can use for keeping track of everything is called the Medical Mama Compass. And that was also made by a parent going through the trenches. The emphasis on this one I would say seems less on the planner function of it, and more on like the medical information, and keeping track of all the different things, like an insurance call log, and a section for goals for you and goals for your child, including therapy, and medication tracking, and things like that.
It has like an IEP section, emergency planning, medical equipment, and supply list. And I think that both of these solutions are super great, I think it just kind of depends on what you're looking for. Like, if you're looking for something that's heavier on the planner, and lighter on the medical stuff, then The Glory Days might be better for you. If you're looking for something that's a little lighter on the planner function, but like heavier on the medical stuff, and tracking and all those things, the Medical Mama Compass might be a better fit.
I really encourage you though, like these things are so hard to describe audibly, like I'm holding it right now, but it's hard to describe. So, I encourage you to go check out those links in the show notes so you can look at pictures, and kind of see more of what they're about, and read the full list of like what they include to make a really good, informed choice for yourself. If you're someone who needs that physical thing.
And then, another great resource is a book called The Extended Hospital Stay Notebook. And that was created by another mom, with necessity of this, Erica and her husband, Sean, Ryan. Erica was actually a guest on the podcast way back in episode 61 and 62. And she talked about it on episode 62.
So, it really is for tracking and logging all the information when you are in-patient. And she has some really great things in there of like things to keep track of, and some really great insight that she has from some really long hospital stays with her son Wesley.
And then, she also created the Appointment Notebook. And so that's just like this really thin notebook, it's pretty simple and straightforward, but it just has all these sheets in there that you can use one per visit, that you have per appointment. And spots to put like the provider's name, the prep required before the appointment, any notes that you take during it, follow up that's needed, and all those kinds of things. So, you can just jot down all the things needed for each appointment.
Mom Julianna has a hack for doing this kind of more electronically.
Julianna Morasse 49:42
Hi there. My name is Julianna Morasse, and I'm the mother of Atticus and Basil. Atticus is my five-year-old, and he has a presumed mitochondrial disease. Because he's semi-undiagnosed still, we are still being sent to specialists. And I know I don't have to tell you guys how overwhelming and chaotic those new patient and specialist appointments can really be.
But there's two things I've always really kept me grounded and organized during those appointments that we'll love to share with you today. The first one is I always have a nurse intake form in my backpack or binder. In fact, I think I have 10 of them in there, because they're just that handy.
And it has my child's basic information, it has his name, birthday, list of providers, list of diagnoses, allergies, and medications. And this way, I can just hand it to my nurse and sit down and get my child settled in. It is also really great for emergency room visits as well.
The second thing I do is I keep a Google Docs or a Word document for my appointment. And I make a couple of copies, one for the provider and one for me. And that will have a list of concerns, observations, questions, a brief history, and a brief timeline of milestones. And basically, anything else that you want to talk about before you leave that appointment should be on the list. This has always kept me extremely grounded because I can see my intentions right in front of me.
If I get really overwhelmed, my mind tends to go blank. But that grounds me and keeps me organized. And then it also keeps my doctor organized so they can see my intentions right in front of them. So that we're on the same page. I hope this helps you.
Madeline Cheney 51:28
And then it's something that I thought was just so cool. This one mom explained something called a Livescribe pen? I don't know if any of you've heard of that, I feel like it should be really- it's probably really well known, I just had no idea about this. And my techie husband had never heard of it, okay? So that’s something too, it’s validating.
But full disclosure, I have never used it. So, this is me describing from what I've understood, from like looking it up, and from what she told me. And so, it's essentially a pen that is connected to an electronic device, like your computer or your tablet or something. And you can be taking notes, like physically, and it has like ink and everything, like you're taking notes physically while a doctor is talking or whatever. And it has a recording device on it.
So, while you are writing, it is transferring what you're writing onto your electronic device, and recording. And so, you can tap any part that you wrote down, like it shows up in your handwriting on your device. And you can tap any part of that, and it will play back for you a recording of what was being said, while you wrote that note. And I hope I described that one right.
But is that not like genius for using in appointments? Like, holy cow. So, if you want to keep track of all the things they're telling you, and you feel like it's so overwhelming, and you always forget things, which is like probably, like, maybe all of us, this could be a really great tool.
One thing that the mom who suggested it told me to remind you is that, like, because it's recording audio, and it's really subtle, like you don't see this big recording device, it's like in the pen, it's embedded in the pen, you do need to like get permission from them to record it because you are recording their words.
And so just be like, “Hey, I'm using this pen, is that okay with you.” I think that's good enough, maybe you'll sign something, I don't know. But anyway, that's a super cool thing that's called Livescribe pen. And there will definitely be a link for that in the show notes.
And then an app that a mom told me about is called Track It, and it is for seizure tracking. And I know a lot of you have kids with epilepsy, and so this might be something this is very specific, but I feel like because it's also something that a lot of our kids have, it's worth mentioning.
But she said that you can track all the different details about each seizure, you can even record video and it will store it in there. And so, that can be really, really helpful when you need to track these things and report to medical professionals or just, you know, for your own information. So, link in the show notes for that, too. I mean, there's links for all of these things. I don't know why I keep saying that.
And there is this super great app that I learned about, that I think a lot of you know about, because several of you told me about this. But it's called MyMejo, and it is the app that Ryan, the dad from the very beginning in the intro, the solution that he created for families like his, and like ours. And so, here is a recording of him sharing a little more about that.
Ryan Sheedy 54:15
Hi, I’m Ryan Sheedy. My son Reynolds has an ultra-rare disease called Costello Syndrome. Like so many in the rare community, I have so much information to remember, organize, and share at all times. We may have several medical record platforms, we write information on post it notes, and we create spreadsheets just to keep up.
Because of his rare disease, we were going from doctor to doctor, having to repeat the same information over and over, it became overwhelming. We have so many contexts to organize. We have so many medical details to share in the forms. And don't get me started on trying to explain all of his care details to grandma or babysitter. What if I forgot a detail? All of this inspired me to create what I needed, and I'm excited to make it available for others like us.
Mejo, short for Me Journal, is a web app that I created that provides parents and caregivers with a better way to simplify, organize, and share their child's most important medical and care information. Simple and easy to use, Mejo helps caregivers save time and gain peace of mind by organizing their child's information into easily downloadable views that can be securely shared in a click.
So, whether you're looking for one spot to organize all this information, you want to, say, see ‘attached’ when filling out those forms, or have comfort handing over your phone in an emergency, Mejo is there for every moment of care. Adored by users, loved by providers, and endorsed by numerous rare disease organizations, Mejo is built for caregivers, by caregivers, to save them time, money, and ultimately, bring their families joy. We're excited for you to sign up. So, check out Mejo today at www.mymejo.com.
Madeline Cheney 55:57
There are so many parents who have loved using this app, and I wanted you to hear from one of them. So, here is what Tessa has to say.
Tessa Gonzalez 56:06
Hey. My name’s Tessa, and I've been using the MyMejo app for a while now, and I really like it. The thing I like the most about the app is how flexible and customizable it is, without being cumbersome.
I often feel like products designed for parents of medically complex or disabled children are designed with a particular need in mind, which is understandable, but if my child's needs look different than what the product was designed for, it can feel like we don't quite fit, or the product just doesn't quite meet our needs.
The MyMejo app though, is super customizable. It allows you to easily skip information that isn't relevant to your child and has textboxes everywhere that make it easy to add whatever information is helpful to you.
The final profile that you create is simple, intuitive, and easy to read. You can access it from your computer or smartphone, and you can view either the complete profile or a condensed version. You can download your profile and share it that way, or you can share via a link by text or email that you can set to expire after a certain amount of time for privacy.
I've been able to share the link with my husband and parents so that they always have access to the most updated information for emergencies. or if they happen to take my daughter to an appointment. It's made my life so much easier to have all of this information in one spot that I can access and edit from anywhere. I highly recommend this app for any caregiver.
Madeline Cheney 57:26
One of my favorite things about MeJo is that it's free. So, you can access the app, he also told me that they are going to be working on developing a version that is paid version, that you can also track current appointments and do more about the scheduling thing, which I think would be so genius. Actually, I was like, “Hey, are you making this feature, because you need to make this feature.” And he said they're going to be working on it. So, that's exciting. Stay tuned for that.
But the version as is is so awesome, it's so thorough, it has so many sections. It honestly just reminds me of the electronic version of like those big medical binders that a lot of parents used to make or still make.
I don't know if you've heard of those, but like, I've definitely heard of them on Facebook groups and stuff of like, you know, where it has just all the information about your child that you could think of, that can be brought with you to the hospital when they have questions, or just so you can keep track of everything.
And it includes a getting to know me section, with all little fun facts, and a place to put the picture, and just all those things. So, it's super amazing. And like, also, for those of you who have multiple children with medical complexities, I know you'll appreciate this feature, but it's super easy to add as many profiles for as many kids that have need of like tracking all this information. So, you can have it all in one place, which is super amazing.
And you can email it, or you can text it to whoever needs to have it, so you know the babysitter or the nurse, whoever. And so, I just love how they thought of all the things. So, there's definitely a link in the show notes to go sign up for free for that, that sounds like something that you could use in your life.
And then lastly, there is a resource that’s called the Taking Care Manual, and it is made by a parent. I think these are all made by parents, how cool is that. But it is an editable PDF for you to put in your child's information and a pic of them and print it out, so that you can hand it out to anyone who needs the information. And again, this feels like a replacement of like the big medical binder.
So, it’s customized, it’s printed, it's super concise. She also added like some really great embellishments, like, you know, it's cute. It's colorful, you can put a big picture of your child right on the front. And so, I would say honestly, if you are more of a tech person, you like to have things digitized, I think that Mejo would be a really great solution for you.
If you like to have tangible, the paper, you know, to hand it to someone, then I think Taking Care Manual would probably be a really good fit for you. So, I think, you know, again, it's just to each their own. So, with the Taking Care Manual, there is a link in the show notes to purchase.
Okay, so that kind of concludes our gigantic dump of organization hacks. And I really, really hope that at least one thing that you heard today is helpful to you, if not just the beginning part, and feeling validated with the emotional response that you have about this. But you know, go, fight, win.
And then, I would love if you do any of these hacks or you implement any of these, if you would put that on social media and tag me. I would love to see that, and I would love to share that too, if you're willing to let me, so that we can be like, wow, look! Like, here are the tangible things we did because of this episode, and the ideas shared. That'd make me so happy.
And one last big thank you to our sponsors that made this episode possible: MeJo, The Glory Days Planner, and FreeArm.
Join us next week for a conversation with Dr. Kelly Frandin, all about how we can better advocate in the medical setting for our children. Don't miss it. See you then.
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