Charlie's Blog

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

Wednesday, June 17, 2015

"What do you mean, normal?"

regular
[reg-yuh-ler]
adjective
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.

Wednesday, May 13, 2015

Baby, baby

Just a quick update to let you know that Elizabeth continues to grow and be the most wonderful baby ever. There, I said it. I think that every time I tell someone this, I jinx myself and she'll 'turn' on me like a bad bag of salad. She IS so lovely...sleeps, eats (a ton! What a relief/change!) and is really well-tempered. It's great.

Our next echo is June 12th, at which point Sick Kids can assess what our next turn is - adding or switching medications and what her heart is responding to. I don't know what to expect that day - sedated or not, results, etc. - but we are always hopeful for good news.

Charlie is still...adjusting. I've heard it can take a year. Speaking of which, Matt and I have decided to take Elizabeth to Bora Bora for a year. Any takers on our remaining child? Kidding. Kind of.

This comic basically explains our life. Thanks to the illustrator (this was uncredited on the source I found it on):

Sooo...yeah. We love him all the time. We like him...most of the time.

Here are some adorable shots of various family members! Enjoy! Know we are well.

Charlie and Elizabeth hanging out.
Charlie got his 4-year shots. Tough guy!

Elizabeth looking like the future rugby player she is.

Matt, Charlie and Elizabeth having a visit.

Me, drinking champagne (oh, how I've missed you!) and having a Dorito. Stay classy!