Musings of a Marfan Mom

Latest Checkup Recap

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Last week, J and I made our semiannual visit down South for our cardio visits. J is still having a lot of anxiety around any doctor visit, but especially echocardiograms, so we try to infuse the trip with fun.

We arrived Thursday morning and spent the day with my “Facebook friend” Christy, her husband, and their adorable son, who also has Marfan syndrome. Her son was pretty skeptical of me at first, but by the end of the afternoon we were totally buddies! I love meeting my online friends in person, especially those I talk to as much as Christy!



That evening, J and I had dinner with my fraternity friends from college. Our kids are all the same age and it’s been fun watching them grow up over the course of the past 3 years of visits. Too bad we don’t live closer for playdates!

Friday we had to be at the hospital early. J was getting versed to calm him down for the echo. Thankfully I didn’t get as much resistance from the nurses about that this time. He started crying before he’d even had his blood pressure taken. He was afraid of getting shots or blood draws or being put to sleep.

One of the fabulous things about our hospital though is how well they “get” kids. New addition to the prep room this trip: a doctor kit! J gave me “bwud dwa” after blood draw, and took waaaay too much satisfaction from that. (“Ouch! That really hurts, J!” “I know! Bwhahahaha!”)
kid playing doctor
The last hurdle was getting him into the echo room. He immediately started screaming and saying “no sleep! No poop test!” Apparently he thought he was getting another sigmoidoscopy. He hasn’t had one in 18 months. Thankfully the versed worked quickly, and Sophia the First was on Disney. The echo and EKG were smooth sailing from there!

He was so excited to meet with our nurse practitioner. He called her “Doc-TOR” and “Doc-ky.” He rarely to never addresses his other doctors, so clearly he recognizes how special this one is to our family :-) J was also a complete stinker during the appointment! He’s lucky everyone was so patient with him! We were really happy to hear that his aorta is stable and his valves continue to function well. All he has is a medication increase.

Afterwards, I promised him a trip to the science museum to see the dinosaurs. From T-Rex munching on his hand, to chasing bubbles outside, it was a big hit!
T-Rex skeleton
boy chasing bubbles

Glad we’ll be back here in just a couple of months for conference!

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One Comment

  1. I’m so glad the EKG is over with for now. It’s good to hear J handled it okay and the results were mostly good too. I’m happy you were able to meet Christy IRL. I’ve never met online friends in real life (well, I’ve gone to organized meetings and technically speaking I met my husband online, but I didn’t know him before he sent me a PM asking to meet up). Anyway, it’s good to have someone you can relate to.

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