The Power of a Good Plan

With Thanksgiving this week, and Christmas just around the corner, it's only appropriate that the assigned writing topic for WEGO Health's National Health Blog  Post Month is to write about things that we have to do as part of our planning for the holidays because of our daughter's health condition, WAGR/11p Deletion Syndrome.  

First of all, we know the holidays are dangerous because there is a high risk for over-eating (to say the least.).  Since people with WAGR/11p Deletion Syndrome are at risk for obesity, plus the added health risks of diabetes and kidney strain; we really have to watch Evie's diet to ensure she stays as healthy as possible.  We track calories through an app on Evie's iPad called My Fitness Pal.  I tell Evie that we play the game 1200 and try to keep her calories under 1200.  That's still maybe a little high, but I figure if we can do this during the holidays, then we are good shape for warding off on-wanted weight gain.  Obviously, we can't "reward her" with food, so it has to be a special event like, "Mommy will take you to Panera..." she eats healthy there, and it's not really the food that is the reward so much as the special date with me. 

We have to be prepared for our travel, and there are too many important things to pack in order to keep our travels running smoothly.  I start to make packing lists a few days ahead.  This has to include fine details like, "eye ointment, eye drops..."  I can't just say, "Pack Medicine" or I will forget to pack something that falls under that category.  If we're doing a road trip that would require Evie taking her medicine while in the car, then I have to plan ahead and pack food and spoons for her to get the medicine down. 

Not only must we pack the right medications, but we must also remember to get medications filled before the holidays when the pharmacies might be closed.  Even going beyond THAT, we have to double check dates that medication refills are good through so we don't have to wait for a doctor to phone in a prescription that has expired.  (It's obvious that I've fallen victim to more than one of these circumstances before, isn't it?)
 

We will need to take a blood pressure machine with us this year when we travel since we just had to add a new blood pressure medication to Evie's regimen.  Having one's very own blood pressure machine really takes "playing doctor" up a notch.  We have one that is huge, like the rolling types at the hospitals, but more recently we purchased a smaller, more portable machine that fits in a pouch, and we can just leave our tracking sheet and pen right inside the pouch with it. 

Finally, we have often taken a portable picture-schedule with us to keep Evie's anxiety low while on extended weekends or week long vacations.  Having the predictability, even when away from home, makes her life so much easier; which then makes our lives so much easier.  We just had a foam-tag board arrangement with Velcro for the pictures to go on and off easily.  Now, as she's older, we actually have made a tri-fold board that I use with her to play school.  When we wake up and play school in the morning, it almost sets a calming tone for her day.  She loves to play both student and teacher, and having a "toy" like this from home, I think, keeps her less homesick.

So, it's never just "pack a bag and go" here.  I have to be thinking about the trip at least a week in advance to ensure we have all our little ducks in a row.  But the planning doesn't frustrate me at all, because I know that the planning is what gives us power over Evie's health, both physical and mental; and that's worth its weight in gold.