Charlie's Blog

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

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

Wednesday, June 17, 2015

"What do you mean, normal?"

1.usual; normal; customary: to put something in its regular place.

Last Friday, Elizabeth had her follow up echo at Sick Kids. I was concerned about how she'd do since they weren't sedating her and she is now a wiggly almost-four-month-old, but (of course), I needn't have been. It's become a running joke in our house how perfect a baby she is - she will actually tell you when she needs to sleep (growly sounds) or eat (whiny sounds). And other than that, she just quietly sits and obsess the world. She's amazing.

So, Sick Kids. We arrived, checked in, had her ECG done and headed into echo. It was fairly quick and she did well, laying there sucking her thumb and listening to me sing for most of it. Matt and I had a very interesting chat with the tech who was on exchange from Ethiopia. After, we waited over in good old 4A until Kristen came to get us.

Both Matt and I are pretty sure she tried to play it cool until we went into the room. I was super nervous and sat down, at which point Kristen says "So, her heart is normal." Matt and I just sat in stunned silence, to the point where Kristen says "Can I get a yahoo?". We were so bad at taking good news - bad news, we're experts. We immediately come up with questions and know what to say and do. Good news, we just sat there looking awkward and confused. I honestly said, "What do you mean, normal? Like, normal-normal?". Talk about PTSD.

But that's the news. Her heart, under the support of medication, is normal. Elizabeth will go back in 6 months for another echo and then perhaps go off the medication. Or not. Whatever.

It really made us think about Charlie and whether he would have done much better had he been diagnosed earlier. Surprisingly, that thought didn't make me bitter or angry...just food for thought. He was much sicker than Elizabeth from the get-go, though, so while he may have been better off than tube-in-the-nose, weeks-away-from-complications-including-death sick, I still think he would've been sicker.

Elizabeth and Charlie are joys and I'm glad we don't have to persevere through the mess we had with Charlie on the second time around. Thank goodness for Sick Kids and the great work they do.