His heart

I still get nauseous and anxious for a couple of weeks leading up to his appointments, let's get that out in the open right up front. For the most part Ever is doing great, but you never know what's going on inside that broken heart of his so whenever he's symptomatic I worry that it's heart-related (as opposed to being 3-year-old related). You never know with an Ever Knight, you just never know. So I worry when his lips turn blue--is he cold or are his oxygen sats dropping? And I worry when he's overly exhausted--did he run too much at the playground or is his mitral valve stenosis severe enough that it's causing his body to fail? And of course I worry when he cries and tells me he doesn't want to die--is this just heart-kid anxiety or is this some sort of horrible sign? Worry, that's my name.

I tend to make his heart appointments a big deal--a Mommy Ever date day extraordinaire. I get a babysitter for the other kids so I'm not distracted and can put all of my attention and energy and love into just him. We get donuts, we get Happy Meals, shoot, he can pretty much have whatever he wants because it's on this day every year that I am reminded again that he deserves it. He's been through a lot for a three-year-old, and a street cart donut is the least I can do! This appointment came the day after Quinn was diagnosed with pneumonia (and James was still out of town) so the timing was not even close to great. Luckily, my friend could watch my sicky Quinny and another took T to school and sure, we may have all been in tears when we left the house that morning but the day ended with a Happy Meal, so all's well that ends well, am I right? 

Ever was a stud through all of his tests and exams. He's getting to the age where he wants to know what the echo tech is seeing and he asks all sorts of questions to every nurse, technician and doctor he sees. I love and encourage his questions, sometimes being the middle man but oftentimes telling Ev, "That's a great question, let's hear what the doctors answer is." and then waiting for a response. I feel very passionate about him having control over his medical journey so that when he transitions into adult care (and I'm not accompanying him to every appointment--but I always will if you want me Ev!) he will feel empowered and can advocate for himself.

The short story about this appointment is that everything looks just about the same as it did last year, which is just about the best thing we can hope for. His wonky heart is still rather wonky, but it's doing an amazing job and it grew with him this last year--hooray for Ever's heart! Another surgery is looming in our future, but if that wonky heart keeps growing year to year our surgery could be aways away. Now wouldn't that just be the greatest thing? Yes, yes it would.

Oh yes, the above picture...we went home with a little hardware to see how his EKG handled exercise. Between rain and three-year-old behavior I don't think that EKG machine could detect anything but a game of checkers and a massive fit on Central Park West when I asked him to scooter for a bit instead of being pushed around on the rideboard. I'm waiting for the doctor to call me and say, "We've actually detected that your kid never moved during the whole 24 hour test." and I'll have to say, "You mean my energetic Everett? Well I'm sure he walked to the table when I said his breakfast bacon was ready!" I'll let you know when she calls.

When it's National Donut Day and he's spent a good chunk of the morning in an exam room you owe it to him to get two donuts on the street. And of course, it's best to let him chew the sprinkles and lick the frosting off of both of them!

 

We rode home in an empty C train--crazy right? And while Ash and I took advantage of any empty train to act a-fool, Ever kept whining and saying, "Is too scawy wif no one on it. Don't stand so faw fwom me!" City kids = people people.