First Child-Free Vacation
Margo was born almost five years ago, and in that time, my husband and I have only spent a handful of nights away from her. She has spent the night over at our friends’ house, and when my parents come up to visit, we have stayed in Philly for a date night or for a wedding.
Since Ruby was born last year, it’s become harder to ask for time away. However, after a long winter of COVID exposures and quarantines, I decided to prioritize something: planning our first child-free vacation. My parents generously agreed to watch the girls for three days while we go on a trip. Three days is a great time. It allows my parents to spend quality time time with the girls, and it gives us a much-need breather.
As with so many experiences, CF is top of mind and definitely a big reason we haven’t previously taken this leap. This isn’t just asking someone to watch our children and make sure they brush their teeth and go to sleep at an acceptable time.. There are so many parts of Margo’s routine—both morning and evening—that make it easier to just forgo taking a trip. Mentally, it is a lot.
We try to capture every detail in a document, making sure whoever is watching the girls knows all Margo’s medications, treatments, and the little nuances that go with CF, hopefully without overwhelming the sitter. There are so many unspoken rules and things that Rhett and I just know—it’s easy to forget that we’ve had five years of experience and it’s certainly not top of mind for most.
- Pancreatic enzymes- takes one pill per 3 grams of fat. Good rule of thumb- 3 pills for snacks, 5-6 pills for meals. Needs to eat it within a 45-minute timeframe.
- Orkambi- needs to take this with fat, so it’s easier to take it with a meal. Margo still takes the powder version. Even though she’s been swallowing pills since before she was two years old, she can’t get this medicine in a pill form until she’s six. We mix the powdered medicine with chocolate syrup in a small bowl and Margo eats it with a spoon.
- Multi-vitamin- Margo takes a vitamin every day specifically for people with CF. Because it is fat soluble, she has to take it in conjunction to her enzymes. It is a bright orange pill so she has to be careful to wash her face and brush her teeth afterwards. It’s definitely a good test to make sure she did in fact brush her teeth!
Margo prefers manual treatment over her vest. As a baby and young toddler, we taught a few people how to perform manual PT on her with the percussor, which came in handy. This was something our clinic advised us to do, just in case anything came up where Rhett or I couldn’t be there to do it ourselves. At almost five, manual PT can be a lot. She is tall and active, and I can hardly keep her contained enough to do manual PT for her. Usually my husband does it or she uses the vest.
As far as teaching her independence with her treatment, the vest has been a critical tool. It has also allowed us to share some of the weight of caretaking, at least every once in awhile.
We have always sanitized anything that could potentially go in Margo’s mouth. A short list includes straws, water bottles, pacifiers, and bath toys. Usually we ask the sitter to just put aside any items and we will take care of the sanitization in the Wabi when we get back. Again, it’s just easier that way and one less thing to worry about.
Margo is on a high-fat, high-protein, and high-sodium diet. And while she’s getting better, she can definitely be a little picky at times. For this trip, we’ve given my parents a lot of suggestions, even prepping some meals that we know she and Ruby like. Usually we add olive oil or butter to her meals, and always extra salt. If all else fails, Margo will happily eat peanut butter with a spoon, which checks all boxes.
In the summer, it is critical that she drinks a ton of water to maintain hydration. We make sure to emphasize that, and on super hot days, we’ll give her Gatorade and popsicles for an added boost.
A working document
As you can see, this is A LOT of information and can be intimidating to document and teach to a babysitter. The good news is, while it takes some time to create, it is a working document that can be there when you need it for the future and expand with additional information.
We are leaving shortly for our trip and are so excited to explore a new city together. It’ll be three days to eat, drink, and enjoy each other’s company, and we will hopefully return relaxed and eager to see our girls. The most important thing to remember is that they are in good, capable hands with their grandparents.
For any CF parents who want to take a solo trip but are hesitant, I hope you know that you deserve it and should try to make it happen, even just for a short night away.
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