Charlie's Blog

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

Tuesday, December 13, 2016

An unexpectedly positive day

Our hospital really knows how to surprise, and apparently how to do Christmas.
There has been no news in the past few months, so hence, no updates. We had a great summer (camping, Winnipeg-ing, day-trips) and a good fall (I'm back to work, being a teacher-librarian, so it's been an adjustment but overall, a smooth one). Elizabeth is loving daycare, Charlie is loving French Immersion SK, Matt & I are liking our jobs. Ripken still likes chewing things. Generally, boring and good but not blog-worthy. Pics at the bottom of this post.
Today, however, we have news of the health-related variety that our blog audience is interested in. We had an appointment at Sick Kids (our now-yearly one) and both kids had echos. They were as good as gold during their tests (probably more because of the promise of a trip to the gift shop afterwards more than any innate good behaviour they have) and the techs got good pictures on which Dr. D. could base her assessments. We were expecting Charlie to stay status quo - in fact, I hadn't thought much about Charlie because it's pretty obvious that he's clinically fine. If i had thought about it, the only change I would've thought was possible was adjustments to dosages because he's gained a bit of weight (1kg in a year). What consumed my thoughts, as least, was the possibility of Elizabeth coming off her medication entirely. Her heart was 'low normal' when she was born and as a precaution, they put her on a support medication. In the ensuing year and a half, they were allowing her to outgrow her dose. That said, she is a big almost-two year old, and I hoped a teeny tiny bit that they'd say she had outgrown her dose already. I was not expecting this, though - our expectations for this visit were for both kids to stay on track and on meds.
Maybe it was the better pictures, maybe it's their miraculously healing hearts, but Elizabeth came off her meds today and Charlie went from two medications down to one.
This means Charlie's heart is SO normal that they want to see if his body can handle no medications - our cardiologist said that sometimes they have to put kids back on a medication later, but it's years later and that doesn't happen very often. Even his heart walls have thickened up, which hardly ever happens. Elizabeth coming off her one medication means no more 11pm bedtimes (meds were at 7am, 3pm and 11pm) so life is basically normal. Which for us is very, very weird. I think I'm still processing.
So, tonight, and all other nights, don't call us after 10pm. We'll be in bed. Maybe even earlier! Oh, the rest! I can't wait. it's amazing that they both recovered to totally normal hearts. Our next appointment is next year, and by then we will see how everything has adjusted. For now, we are the very happy parents of two normally-hearted and limited-medication-ed children. <3

Family Photo, Fall 2016

JK Graduation!

Elizabeth is ready to go in the pool

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