Summer Fun with Artyom and Taosies!

This week we will hear from Artyom and Taosies, two heart brothers who love to have fun during the summer! Together, they share tips on how to beat the heat and have a blast this summer!

The thought of summer conjures images of sunshine, swimming pools, road trips, neighborhood block parties, and lots of time outdoors. A break from school and work and relaxed rules around bedtime and what constitutes a healthy breakfast. But for the CHD patient, summer can also mean balancing the fun stuff with rest in order to ensure their health.

Artyom (age 10) and Taosies (age 9) are CHD brothers living in Southern Nevada and if there’s anything they are sure of, it is how to have fun despite the heat! Here are their favorite summertime activities with tips on staying healthy during all the fun:

GO TO A SUMMER CAMP FOR HEART KIDS

Many cities around the USA have camps just for patients with CHD. Some are sponsored by congenital heart centers and others by private foundations. Older kids can sleep away or families with young children can spend the weekend together. Activities for all abilities with a focus on bonding with other heart patients are abundant, and supervised by medical volunteers.

“Heart Camp is the place I go for lots of love from my nurses and heart friends. I love that we all have camp nicknames and get to try cool stuff. Some of the counselors are even grown up heart kids.” –Artyom

“Camp Mend-A-Heart is love. Snoopy and Bananas and Deuces are my favorite counselors. I did archery, rock climbing, swimming and guitar playing this year.”

–Taosies

Pro tip: Drink enough water. But if you forget and get dehydrated, the nurses always have Gatorade. –Taosies

BE OUTSIDE IN NATURE

With temperatures able to reach in excess of 105 degrees, spending a lot of time outdoors in Southern Nevada can be tricky. The intensity of the sun at this elevation is overwhelming at times and knowing when to be outside and what things you will need is crucial.

“Our neighborhood pool is pretty sweet. I like to practice my taekwondo kicks and play with my friends.” –Taosies

“Red Rock Canyon National Recreation Area and Valley of Fire State Park are my favorite places to hike and climb rocks. I take my special backpack with water inside and put on lots of sunscreen. We can only hike in the morning because of the hot sun.” –Artyom

Pro tips: Jump away from the edge of the pool. Your Mom will probably make you get out for 5 minutes until you do not scare her.” –Taosies

Trust me. Put on sunscreen a lot of times. Nobody likes sunburn, especially my doctor. –Artyom 

PLAY SPORTS

Our family leads an active lifestyle and summer sports are always at the top of the list. Taekwondo, tennis, flag football, basketball…how many sports can we squeeze into 2.5 months?!

“I love being on a team. Basketball is inside so it is easier to run and breathe. Plus, I am getting good at my jump shot!

I started taking tennis lessons with a coach and a friend. It is hard work, but fun too. We take lots of water breaks and only play in the evening under the lights.” –Artyom

“Flag football is kind of my thing. I am a really good QB and like to run for touchdowns. I won the sportsmanship medal two times for being a good teammate and helping my friends learn the rules.

I go to the dojang twice a week for taekwondo training. My teachers are awesome and I am learning a lot about my body. I can almost do the splits and my core is super strong!” –Taosies

Pro tip: Tell your coach about your CHD and any other medical stuff. Ask them to be on your side in listening to your body and taking water breaks and rest whenever you need to. –Artyom

DO FUN STUFF INSIDE

There are so many things to do inside during the summer. We try to find cheap (or free!) activities, museums, and events. We also enjoy supporting our local sports teams.

“WNBA games are way more fun than NBA games. The girls know how to have fun and are awesome players! My favorite Aces player is Kelsey Plum #10 because I watched her play in college at University of Washington where my Dad works.

I really liked the Discovery Children’s Museum with my cousins. There was so much to do and next time I want to go to the 3D printing room.” –Artyom

“The Atomic Testing Museum was cool and a little bit scary. I am glad we do not use these bombs to hurt people. It was fun to learn about this stuff with my home school friends.

Mrs. W teaches art classes every summer and I learn a lot about famous painters like Monet and Van Gogh. I have a wall filled with paintings from her classes.” –Taosies

Pro tip: Does your city have a discount program for local activities? Southern Nevada has the Pogo Pass and for $35 a year we enjoy several museums, water parks, botanical parks, and indoor play areas.

GO TO YOUR DOCTOR AND TAKE YOUR MEDICINE

“Listen to your body, friends. It is okay to say something hurts or doesn’t feel right. Sometimes us heart kids need extra help even though we drink enough water and eat healthy food.

I go to language therapy all summer long and Dr. Carrie is helping me so much. Can’t you tell?”

–Taosies

“Our orthodontist had Hawaiian week and we dressed up for our appointments. It was really fun to hear music, see dancing, and enter a contest to win free toys.

I see my counselor at the heart center soon because I need her help with my feelings sometimes. Dr. Creel helps me understand what it is like to have medical problems for my whole life.”

–Artyom

Pro tips: Slow down and make sure you poop every day. Your tummy will thank you. –Taosies

Summer is really fun, but it is hard too. I like having talks at night with my Mom about what is coming up next. I also like to have one day of just rest and video games. –Artyom

Artyom & Taosies are proud owners of several water bottles, mostly because they lose one and then find it after Mom buys a replacement. They love their two Great Danes, their neighborhood friends, and finding new things to see and do. Their Dad should really consider buying stock in Thinksport’s kid sunscreen and inventing a more absorbent beach towel.

What are you doing this summer?

Rebeka Acosta lives outside Las Vegas with her husband, two heart warriors and two Great Danes. A researcher by nature and finance coordinator by training, she enjoys keeping up with congenital cardiac literature and always reviews insurance claims line by line. Earlier this year she passed the national exam to become Nevada’s first Board Certified Patient Advocate.

Before relocating to Nevada, Rebeka was a founding member of the Washington State chapter of CCHD. She now volunteers on the National Steering Committee and enjoys attending the annual legislative conference in Washington, DC. She is especially invested in advocacy for adopted patients, patients of color, and international patients receiving care in the United States.

Rebeka welcomes connections at racosta@conqueringchd.org. You can read more about Artyom and Taosies in their Junior Advocate profiles for CCHD.

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