Our HLHS Journey: Dancing in the Rain

Life isn't about waiting for the rain to pss... It's about learning to dance in the rain

We went on our first family “vacation” (only 4 days 3 nights) post Fontan over the 4^th of July weekend and this was hanging on the bathroom wall. How appropriate for our life and THIS trip. Instead of holding back and not traveling just yet, we pack up a bag full of meds, cooler full of fat free food and a large first aid kit and take off for a mini vacation (cardiology approved of course)

My travelers as we head out

During this short stay in Wisconsin Dells, we visited the Urgent Care clinic, Walgreens pharmacy and the local Walmart, can you imagine if we went on a weeklong vacation. After this trip, Jasiu looks like he went to war instead of a vacation, our toddler is on the move all the time and I feel like I need to invest in one of those kid leashes or something and even that wouldn’t be enough to hold him down. He is LIVING his live, with each bump, bruise or cut and we are just learning to go with the punches.

To give you a quick recap of Jasiu’s adventures: 1) as we check in he decides to make a mad dash for the door and trips, Emily decides it’s a good idea to drag him by his foot to us and that creates a pretty nasty rugburn on his back (we didn’t even check into our room yet). 2) as we unpack, Jasiu thinks it’s a good ida to cover his head with his blankie and run around like a madman. Before I got to stop him he bumps his head on the rather tall table with his forehead. Creating a nice bump and a bruise 3) we go miniature golfing at the resort after we unpack and calm down after the bump, Jasiu gets a Hole in One on his first ever try to golf and a few holes down he trips backwards over the curb and hits his head on the only pointy rock in the area. He gets a pretty deep laceration about a half an inch long. After we get the bleeding under control with the help of the resort paramedics we visit the urgent care clinic with the help of our friends leading the way. The clinic doctor advised that this cut does not need stiches (I was sure this would require stiches but apparently it didn’t) A call to the cardiologist and we are advised to “watch for signs of possible concussion” and stop Coumadin and aspirin for 3 days. Then we continue on with our vacation.

Forehead bruise (3 days later)

See the rug burn and head wound (both 3 days later)

Next, I realize that one of Jasiu’s meds were not closed properly, totally my fault, and spills all over the medicine bag so we need to transfer our script to the local pharmacy to get our 3 days’ worth of meds. Finally on one of our sightseeing adventures Jasiu falls asleep with the pacifier in his mouth and as we are walking along a bridge on the river, the paci falls out of his mouth straight into the Wisconsin river. No Nuk pacifiers in Walgreens so we had to head out to Walmart for a new pacifier, we almost had to buy a pink one but I was able to search the racks for a boy color in Jasiu’s desired shape and size. ( he won’t take other pacifiers and is one cranky baby/ car traveler without it).

Despite the above, we had a great time. We learned that both kids can take up to 4 hours in the car traveling before they get bored out of their mind. Jasiu loves jumping into the water and Emily wants to start swim classes. Both kids were so exhausted from the days’ adventures that they fell asleep very quickly in the evening. We also didn’t need to bring the pack and play because Jasiu did very well sleeping on the bed with Emily, although he didn’t like being smothered by Emily, who loves to cuddle and Jasiu is not a big fan of that, he needs his space when he sleeps.

We visited Christmas Mountain Village at the Dells and it was such a relaxing place to stay away from the hustle and bustle of staying on the main strip. It had plenty of things to do for the entire family and a nice porch for mommy to enjoy a frozen margarita on the front porch.

Finally, we began the transition to regular food for Jasiu and he was quite happy to enjoy an ice cream cone, mac and cheese and ravioli one day at a time. On the day we came back, we treated the kids to some McDonald’s French fries for being good travelers and we actually had to take the fries away from our little guy to make sure he we didn’t go overboard in the first few days of transition. He LOVED them. I don’t think he knew he missed them so much since we never mentioned them or ate things he could not in front of him, but the pure joy when we mentioned fries and then while eating was priceless. It was almost as great as when he got his sippy cups back.

So this crazy journey we are on, we learn to dance in the rain and not wait for it to pass because frankly, our rain will never pass.

I hope the rest of the summer is just as memorable as this trip, just less painful for Jasiu. Maybe on our next trip we will be able to eat out more instead of bringing a fridge full of food because of special diets.