Charlie's Blog

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

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. :)

Tuesday, July 29, 2014

Positivity to the max!

Halfway through the summer already?! We can't believe it. Things have been SO busy for all of July, and mostly it's because of the news most of you already know - I'm pregnant with #2! :) We are super excited, and super scared. Get ready for full, painful, honest disclosure.
We went into this whole adventure with a 'plan' (which, admittedly, we knew could change). Because Charlie's DCM is genetic, our plan was to have a genetic test called a CVS done, get the results and go from there. If the fetus has the same genetic makeup as Charlie, we'd terminate this pregnancy and start again. I've always been 'pro-choice' (despite hating that term), and had no issue with having an abortion. However, once I was actually pregnant and started to show at 7 weeks, my mind changed. Matt and I were no longer to even consider the option of termination because, even though Charlie's DCM was hell to deal with, we still wanted this child. I'm sure, has I been 16 or in university, even without the DCM genetics being known, I could have had an abortion and recovered from it. While married and when raising a child who has done just fine, thankyouverymuch, despite his DCM, we just couldn't. I know I have friends who think they would've made a different decision, and this would be the point of STILL being pro-choice. Everyone can make their own decision, and this is the one that's right for us, right now.
Once that decision was made, it had a domino effect on everything else. Suddenly, the 1-in-100 chance of miscarriage from the CVS was unacceptable to a baby we were going to keep (can you imagine going through that only to miscarry, only to find out that the child was fine? GEEZ.). We can still get an amino, but why would we? We can do the genetics at birth and find out then. It doesn't change the plan at all for the newborn, so we are avoiding all risks. We'll have a fetal heart echo (science = amazing) at 20 and 28 weeks, and that should be enough to give us a diagnosis. So, well sit on pins and needles until then, and then again once this baby is born. We are very, very happy with our decisions.
I think it's a girl (apologies to my possible future son if you're reading this. Thought you were a girl.).
The rest of the summer holds more adventures for us. Today, we went to the zoo, and we're off to Winnipeg for a week in August. We are enjoying this time at home (the 'calm before the storm), so to speak, and are excited for what the future might hold. :) 

Jumping at a birthday party
Pony ride at the zoo

Hanging out with Charlie the Rooster

Dressy at a friend's wedding

Super Charlie!

Sunday, June 8, 2014

Worst. Blogger. Ever.

I know, I know...I AM the worst blogger ever. I don't update, I forget, I think about it then don't do it...worst. Ever! In my defense, though, I DID go back to work this year and while there is news about Charlie, it's positive. It's more pressing to blog about the negative stuff so everyone know. That said...
The last time I updated was Hallowee'en, 2014. It is now 8 months later. I've been back to work this year, teaching music and a grade 4/5 halftime. It's been lovely, as I switched schools and am with a staff that is supportive and fantastic in only the ways a small staff can be. I love teaching music and love my grade 3/4. I'm headed for a change in the fall since I'm going back full time, but that's classified information for now. Suffice it to say I'll still be music but no longer a 4/5. :)
Matt's fine too...just plugging along, getting to the end of the school year. He only had one more week of classes and then two weeks of 'exams', which is really 'two weeks of trying to find work to do so no one dies of boredom'. This time of year makes me wish I was a high school teacher.
Charlie (the reason you're reading, I'm sure) is GREAT. After my last post, he kept on trucking right through Christmas (while this past Christmas was fun, this year is going to be INSANE), and in January he was doing so well, Sick Kids decided to take out his g-tube! :D It was a bit of a surprise - we had it scheduled for March Break in order to have a restful week after removal, but we were down for yet another infection (4 in 6 months...gross) and since the nurse had his requisition for the removal already...we just took it out! It was a crazy day. Charlie is now eating well (for a's frustrating some days but most days he's OK), and that was the beginning of an upswing for him. With the g-tube out, he realized within a week that he could climb on things and jump and do all the things a normal 3 year old could with no he started doing them! We noticed and so did his daycare provider. It was a pretty big deal and continues to be. He is so much more independent and much less 'medical'. Much more a normal boy.
And what a boy he is! Cars, trucks, airplanes, trains...does it 'go'? Than Charlie LOVES IT. He is interested in all things stereotypically 'boy' - throwing, crashing, cars and trucks, did this feminist have a boy like this?! That said, though, he does love the princess movie 'Frozen', so that's something. ;)
He is also a giant flirt! This weekend we had a 9-year-old staying with us and, rather than use the pickup line 'You know, I have my own car/house/vacation island...', he turns to his new friends after lunch and says, 'I've got my own park. It's got a swing and a slide. Want to see my slide?'. Eyebrows and winking abounds, annnnddddd girl is putty in his hands. Hilarious! Matt nor I can see where these traits come from.
Charlie turned 3 in March and we had a great birthday party. Charlie loves to swim so we rented out the local pool and had all his friends over for a swim and some pizza. Both favourites!
Last week we had a bi-annual Sick Kids appointment. The team was very pleased with his progress (weight and height were good), and at our next appointment (November) they're hoping to a) take him off the blood thinner and b) change one of his medications so that we're down to meds twice a day versus thrice. WHICH means no more 11pm bedtime for Matt and I. Thank goodness! :)
That's the update for now. No promises on more regular updates BUT I do promise to try my best. Thanks for reading! Pictures now!

Peek a boo! Making the best of a TERRIBLE WINTER.

Snuggles with Mummy

Happy 3rd birthday!

Christmas morning with Dad (notice the theme PJs)

Neo's at the dentist

Hangin' with baby ducks