Charlie's Blog

Welcome to a blog about a boy with a rare heart disease, his mum and dad, and his adventures.

Friday, January 8, 2016

New year, normally.

This post has been on my mind for 2 months and 2 days. That's a long time and yet I still don't have the words to describe our trip to Sick Kids. In one way, it was anticlimactic because we expected good news about Elizabeth and didn't expect bad news about Charlie. It was better than good on both accounts, though.

Elizabeth's heart continues to be normal. Sick Kids tends to air on the side of caution (and that's the side we are most comfortable with!) so they are continuing her on her medication, proactively, until her next appointment at which point we can discuss taking her off of it. Her heart looks normal and acts normal now, which of course leads us to unanswerable questions like "Would Charlie's heart have been normal if someone had caught his issues earlier?" and "Did Elizabeth ever really need her medication?". These questions will never be answered and they are not useful, really, to even contemplate. Still, they're there.

Charlie flirted and thrilled his way though his appointment, and weathered his echo with no issues. He continues on the same medications as they are working well - Matt and I both got the impression that our cardiologist, Dr. D., was surprised at how well the meds ever worked. We didn't suspect before this appointment that the team ever thought the meds wouldn't work, so that was a bit of an eye-opener. The best part of the appointment was when Dr. D. told us that Charlie's heart is indeed now 'normal'. His ventricular walls are thinner then they'd like, an after effect of the tissue being stretched so thin when he was a baby, but other than that, it's picture-perfect. She actually said that you'd have to be a cardiologist to notice anything amiss with Charlie's heart now. Charlie's happy heart!

Our day at Sick Kids was mercifully brief and full of good news. It is very difficult for us now to see parents crying in the cardiac hallways, both because we know the helplessness they feel, and because without knowing their specific child's story, we can't tell them it's all going to be OK. We are so grateful that our story has had a happy ending for now and we know that's not the case for many families that become patients at Sick Kids. 

So Merry Christmas, happy Hanukkah, happy whatever else you celebrate, and happy new year. We all have a lot to be grateful for in 2016.

Walkin' in the woods
Swimming lessons!
Elizabeth looooves the water.
Hallowe'en was good times, although Elizabeth was pissed she couldn't eat candy yet.
Charlie rocked his Christmas concert

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