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

Friday, October 2, 2015

Summertime, and the livin' was easy...

I miss the summer already. Everything is in full swing now - Matt's back to work, Charlie has started JK and Elizabeth and I are into a (mostly) nice little rhythm at home. But the summer was so lovely even in its tumultuous moments, I can't help but miss it immensely. It serves to remind me how lucky I am to be a teacher who is married to another teacher!
We spent a week with lovely friends in a beyond-our-dreams cottage on the Muskoka River. Charlie had a great time swimming - he certainly overcame some fears while we were up there and Matt and I could see the benefit of cottage life for kids. The friends we were up there with were family already and this trip only strengthened that bond. We were planning futures trips by mid-week. I cried on the way home because I didn't want to leave.
We also went to another cottage. Our friends Tom and Leanne have their own up in Bracebridge, and we are lucky that they are kind enough to invite us up for a few days each summer. It is the PERFECT spot to visit friends who like your kids - they have a bunkie, a main cottage, a boat. And a dog, Satchmo, who is one of Charlie's favourites (Leanne was Charlie's daycare provider, and will be Elizabeth's next year).
We also went to the CNE, the Aquarium, a Blue Jays game, Matt's parent's place, my parent's place, the library, parks...the list was seemingly endless. The summer seemed to LAST this year, even though we did so much and had so much fun.
I was anxious for Charlie to start school, though, so even as our wonderful summer ended, I was glad to get back into everything. He has mostly transitioned well. There were a few tantrums from sheer exhaustion during the first week (my personal favourite was when he started crying because I couldn't get a cricket to sing in the garage...) but he is doing better now. He LOVES school, even though he has spent some time in the Thinking Chair - for touching the girl's hair who sits in front of him at carpet time. I couldn't get mad at him, even though the Thinking Chair is a Big Deal in Kinderworld. I just couldn't.
Elizabeth is a Dream Baby, still. She had a few rough days this week for whatever reason (It's teeth! No, she's growing! No, it's a cold! Maybe it's a developmental leap!) but she seems to be back on track. She's beautiful and charming and adorable. And all mine.
I have been working out and cooking (see how those are related? ;)). I have lost 20+ lbs of the baby weight so far and have about 7 more pounds to go. I had a LARGE piece of cake to celebrate tonight, so maybe I have 8 to go now. Whatever. My jeans fit! Big plans for a fundraiser once I'm ready to truly start training. I'll save that for the next post.
I'll leave you with some photos of our summer. Love, love, love my little family. We are so incredibly lucky.
Walking in the woods.

Charlie's Huck Finn impression

Days at the park

LOTS of fishing!

Trucks in the sand.

A baby pike I caught.

Santa's Village, Bracebridge

Matt & Elizabeth hanging out.

The Butterfly Conservatory, Niagara Falls.

Beaching in the backyard.

Charlie the soccer star.

We grew tomatoes, which Charlie was obsessed with picking but would not eat.

More fishing...

...and boating.

Matt made that bench with Tom! At Picnic Rock. 

Charlie, Auntie Leanne, and Satchmo.
At the Jays Game!

*sigh* And JK begins.

Charlie is ready for Elizabeth's baptism!

And so was Elizabeth. <3