That’s not a sunburn. He wanted to play ball with the guys at the church picnic. Such a simple desire, really. Except that it is July in St. Louis and he doesn’t sweat. He’s affected by the AEC syndrome of the ectodermal dysplasias, and along with that comes hypohidrosis, or the inability to sweat normally. Sweating is your body’s way of cooling itself off. He actually failed his sweat test when he was younger.
So, we take precautions. We pack cooling gear, including an evaporative towel, a cooling rag, plenty of water, etc. Even WITH a cooling rag and wetting his shirt multiple times, his core body temp rose to 102!
Sitting there watching him play was not easy. Knowing how hot I was getting, I just wanted to pull him off the field, ya know? But I was about his age when my Mom started letting me find my own limits. So, I let him play. And I irritated him by pouring water on him every chance I got.
Finally, when ALL of the guys decided to call the game because of the heat, he agreed it was hot. He wasn’t about to stop play before anyone else did.
I made him strip to his undies and sit in front of the AC when we got home, then let him take a tepid bath once his temp came down to 100. It took nearly an hour for his body temp to come back down to the typical level.
Being the Mom of a kid who can’t sweat, because of ectodermal dysplasia, can be challenging. Especially when that kid just wants to be “one of the guys.”
Today brought back memories of my sister and I vying for the best spot in front of the air conditioner on hot summer days, and it really gives me a new respect for what I put my Mom through when I insisted on running track and she swallowed her own fear to let me decide what my body could handle.
He said, “Man, it was VERY hot. But I scored, so I’d do it again.”
<3 him so much!
If you’d like to learn more about our skin disorder, check out nfed.org
That's it. I had to put my foot down. Now that Summer is here,and we've finished our curriculum for the year, my kids tried to develop a case of summer amnesia and forget the things that they are required to do every day. They'd rather curl up on the couch and gorge themselves on videos and video games than to go play outside. It's not happening on my watch! So I made a list of Summer Rules and posted in plain view. Don't bother picking up … Keep Reading →
Father's Day is right around the corner, and for once you can actually gift the man in your life with amazing technology that he doesn't own yet! Check out the Samsung Gear VR! Now through 6/18 you can get a Free Samsung Gear VR, plus $50 of Virtual Reality content with purchase, or lease, and activation of select Samsung Smartphones at BestBuy.com or in Best Buy stores! Give him a new phone, and get the Samsung Gear VR … Keep Reading →
This is a sponsored campaign in partnership with Poise and Acorn Influence. Opinions (and #poiselinerlove) are my own. I have a confession... I dribble a little. Like me, many women -- as many as 1 in 3 -- experience incontinence or light bladder leakage. Light bladder leakage may be triggered by laughing, sneezing, coughing, exercising, or lifting heavy objects. I have a urethral stricture, which occasionally requires a trip to the urology … Keep Reading →
Seriously, how is it that Memorial Day is less than two weeks away? As you're preparing for the festivities, why not make this patriotic snack mix for all the little munchers that will be celebrating with you! Patriotic Snack Mix INGREDIENTS 2 cups Post Honeycomb cereal 1 cup pretzel snaps (I used Snyders) 1/2 cup Chex Muddy Buddies 1/2 cup mini marshmallows 1/2 cup red and blue peanut M&M's 1/2 cup Brachs Red White and Blue … Keep Reading →
Special thanks to Plackers for making this post possible. All opinions are my own. Did you know that the health of your teeth and gums can have a direct impact on your overall health? It's true! If you have kids, you also know that it isn't always easy to help them develop good oral hygiene habits. When they are younger, they'd rather be doing any one of eleventy-billion other things than spend two minutes brushing and flossing. Yes, I … Keep Reading →
The season is fast approaching for barbecues, fireworks (sometimes between family members), and fun! Whether you're celebrating Memorial Day or getting an early jump on the 4th of July these simple, fun and easy to make, Patriotic Cones are sure to be a hit. Make them ahead of time to serve cold treats in, or bring the fixins and let the kids have a great time decorating their own red, white, and blue cone! INGREDIENTS Ice cream sugar … Keep Reading →
As many of you may know, our daughters are adopted and we celebrate openness about adoption. As such, it is important to us to incorporate stories for them that teach positively about adoption and open the door for conversation. Following are books that are helpful with just that. A Collection of Books for Children about Adoption A Blessing from Above - Every night before she goes to sleep, a kangaroo prays under the stars for a baby … Keep Reading →
I was compensated for this review of Papa Murphy’s and their #Team425 Sweepstakes. All opinions and statements remain 100% my own. #Team425 #Ad Tuesday's are our busy day. We're out of the house for most of the day for our homeschool co-op, then when we get home, the countdown clock is on because the kids have to leave soon after for AWANA. When it comes to dinner, it has to be quick, it has to be easy, and it has to be good! One sure way … Keep Reading →
We enjoy gourmet popcorn of nearly any variety. Short of spending a fortune at the local gourmet popcorn place, we have to figure out how to make this tasty stuff at home. Here's one gourmet popcorn recipe that everyone is sure to love! I think I just drooled on my keyboard. Here's what you need... 6 cups popped plain popcorn (no butter) 3 cups rainbow mini marshmallows 2 Tablespoon butter 2 teaspoons vanilla extract 3/4 cup … Keep Reading →
Special thanks to Vlasic for making this post possible. All opinions are my own! I am always looking for a great healthy snack alternative for myself and the kids. Having something that is easy, delicious, and great for everyone in the family to enjoy is important. Busy moms just don't have the time to prepare a different snack option for every person in the house. At least, I know I sure don't! Pickles aren’t just a side for your sandwich, … Keep Reading →