Charlie's Blog

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

Monday, February 2, 2015

Almost cooked.

Just sitting here at the kitchen table with Shark Charlie, who is eating go,dish and cream cheese for breakfast (he did have a 1/4 croissant with Nutella, banana, raspberries and some old cheddar first. No one is nominating me for mother of the year for Charlie's eating ha it's, trust me.). ;) There is a lot of crunching and shark noises happening. We are currently obsessed with the Octonauts (SO MUCH BETTER than Toopy & Binoo) so there is a nautical theme to home life right now.

I figured I should do an update pre-Bop because who knows when I'll have time after she arrives? I'm hoping to update more, but than I've promised that before and we all know how that's gone. I've been home for more than a month already and am just getting to this now, and really only because Charlie's breakfast is taking forever.

So, I'm 38 weeks pregnant. I alternate between a few days of feeling OK (I can sit comfortably, sleeping isn't a total exercise in futility, I'm not a grumpy, patience-less asshole) to the opposite of all those things. On those days, I'm a real treat. Matt and my family are doing a good job is putting up with me. I save all my patience for Charlie, who gets what little I've got. He is being a general champ, although mostly that's because he is home with Mummy and doesn't have a clue what's coming next! :)

Bop is being good so far. She's quiet at night which gives me some hope for her schedule once she's born - Charlie was almost completely backwards for sleeping, which would equate absolutely no sleep for me if Bop was a repeat.

I sometimes think I should be filled with anxiety and guilt about Bop's upcoming diagnosis, but I'm not. I don't know if it's an avoidance thing in my brain or what, but neither Matt nor I have really thought much about the possible DCM diagnosis. I guess we figure if it happens, it happens, and until we meet Bop, we won't have a clue. I'm more concerned about overreacting if Bop isn't a good nurser immediately, or if she has some other normal-baby behaviour that I equate to her having DCM. The last thing one needs in those first few weeks is additional, self-inflicted stress. But we shall see.

Believe it or not, I'm more nervous about the birth! I have this nightmare that is ends in a c-section even though I had Charlie the regular way. It didn't help that I had a co-worker that that happened to. Who told me about it. In graphic detail. :*(

Charlie continues to do well. He's even been eating pretty well with limited help from us. We're pretty sure he's growing - he is definitely over 3' finally, so that was a nice milestone to pass. He starts school this September and is very excited about it. He calls school his 'job'! (Thanks, Matt).

I'll update hopefully once Bop is out. I'm hoping to do an update fairly soon after Bop is born, including pictures. After all, they do have wifi in the hospital. ;) Until then...

Charlie stuffs his face with popcorn
Making chili with Dad

Snuggling with Buddy


Sunday, November 9, 2014

A Big Day

I've started to think about the whole medical side of charlies life as its own, separate journey. If that's the analogy, today was a major turning point in that road. Charlie had an appointment at Sick Kids and, although still not normal, our airs-on-the-side of caution cardiologist, Dr. D., says 'His echo's looking WAY better!'.


So, let's tell this story chronologically. We decided rather than spend the 2+ hours in the car to get down to the city, we'd take Charlie on the train and subway. WHAT a great decision. Charlie had a great time, we were able to relax, and we got to the hospital in just over an hour. It's funny that we finally figured out the public transit option on what was ended up being the day we were discharged to once-a-year hospital visits.

We got down to the hospital, had a tea and went up to our appointment. We had our weigh in and BP done first with one of our lovely nurse practitioners, Kristen, who was so happy to see Charlie. But, seemingly bad news abounded: I wasn't happy with charlies weight gain initially (+400gms in 6 months) AND Kristen told us we weren't going to be able to switch to twice-a-day meds because Charlie wasn't 4 yet. I almost cried, since that was the ONE thing we were really hoping for at this appointment. I'm sure the disappointment was written all over my face (I haven't trouble hiding how I'm feeling!) because Matt took over the conversation. We were sent to echo.

Charlie did really well at his echo. He doesn't like having his blood pressure taken, so those were the only times he got whiny. Other than that, he did really well. We put on a Toopy & Binoo and he just laid there and let the overly-sweet tech get her pictures.

We reported back to ECG and Faith, the tech who did charlies initial ECG when he was diagnosed, happened to be with us again. Charlie did well and we reported to 'Room 8' for results.

At this point, matt and I were feeling anxious but also defeated. As far as we knew, we were sticking with the 11pm bedtimes AND dispite months of seeming to eat better, charlies weight wasn't anything to write home about.

Then, Dr. Dipchand and Kristen entered with big smiles, Dr. D. says 'So, his echo looks WAY better, you can go to meds twice a day, and we're taking him off the Warfarin. You also don't need to come back for a year!'. Matt and I sat in stunned silence for about 5 seconds, as Dr. D. and Kristen sat staring expectantly at us, smiling. Both looking at us with that 'Well...? Isn't that great?' eyebrows up look. Matt and I eventually got over our shock, and held it together until they left the room. At which point Matt turned to me for a happy hug and I started to weep.

Sometimes, being pregnant and overly emotional sucks.

We saw our genetic counsellor next (everything is still fine with Booboo, the fetus) and our dietician, who told us our final good news - that Charlie's weight gain was just fine for his growth curve.

In the end, this was by far the best clinic day we've had at Sick Kids. It's funny that we were hopeful, then crushed, then elated. We ran the gamut of emotions and diagnosises in about an hour. And Charlie's doing great. :)