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

Wednesday, February 24, 2016

Elizabeth turns 1.

Our beautiful, healthy baby girl turns 1 today. I have spent the last 24 hours going over where I was a year ago today: getting induced, waiting for that to work, heading back to the hospital, labour, delivery, no epidural. I have very specific memories - snapshots from those hours. I remember the jerk nurse we had when we first got to the hospital who had clearly been through a zillion births before and was past caring. I remember my mum calling my cell phone the morning after Elizabeth was born and asking what I was doing, and I answered 'Oh, we're just looking at the lights.'. Pressing my forehead against the cold glass of the car window on our final trip back to the hospital. How weird it was to be waiting for the induction to work, at home, with no Charlie (he went to my parent's house for a couple of days). My doctor making fun of me because holding Matt's hand made me feel less pain ('magic hands, this guy!'). It's all a blur and yet it's not. I'm sure all that is typical.

What is not typical, of course, are the memories of our stress and worry throughout the pregnancy and beyond. What is this new girl baby was the same as Charlie? What is she was worse? All of our fears seemingly confirmed on day 10 of life, with a 'not normal' echo result. That first month was brutal. To have a sick child we weren't expecting was one thing. To have brought a possibly sick(er) child into the world knowing the risks would have been worse.

As it turned out, though, everything was fine. Fast forward a few months and Elizabeth was growing, eating like a horse, healthy heart and happy face. While she techincally has DCM genetically, those genetics are such a grey area that they shouldn't even be a consdieration. She is on a preventative dose of a simple medication three times a day, and will hopefully come off that with no ill effects as of May of this year. Her heart is normal. She is 'normal'.

We lucked out, plain and simple. Charlie recovered and Elizabeth is perfect. For people who at one time felt like we couldn't have much else go wrong, it has all gone so, so right. So today is a day of gratitude, more than anything else. I simply could not love them more.

First birthday outfit

Walking home from school

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