Charlie's Blog

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

Thursday, November 29, 2012

For Mrs. Trotter (special edition post)

Today my mum and I went to the One-of-a-kind show in toronto, where, like last year, I met with the wife of a former art teacher of mine. Mr. T. dealt with the WORST class in my elementary school's history (my class, although I was certainly not part of the problem...ahem) (seriously, one of the kids from that class went to jail. FEDERAL jail.). His lovely wife and fellow teacher, Roz, helped me barf on a class trip once. We go way back. Now Mr. T. sells his artwork at shows around Canada, one of which being the show we were at today.

We were discussing other family members and telling Roz about my brother and his recent health issues. Here is a pic of Jamie when he was wee:

As Joseph in the church pageant


And here is one of him recently:

In the back, at Charlie's baptism.

I hope Roz remembers, but if you don't, that's OK. You probably saw 10,000 kids during your time as a teacher. Plus, you remember me (who could forget all that barf?). :)

In April, Jamie was complaining of headaches, bad enough to stay home from work for. After some tests, it turned out he had a brain tumour and an operation was scheduled. During the month of April, he had 3 brain surgeries in 4 weeks. My dad had an operation during this time, too, and I fell and broke my arm. It was a rough month.

Dad is fine, my arm healed, and Jamie's brain (while still crazy ;)) is doing OK now too. He had a hematoma (now dissipated) and while the tumour will be in there forever, it's something he can live with through the corrective actions that the surgeries did. Thank goodness. We're very glad he is sticking around.

Last year I said '2011 tried to kill us - bring it on, 2012!'. This year, I say '2013 - please be kind. Please lead to all kinds of wonderful things for a family that has been through so much in so short a time. Thanks in advance.'

Let's hope for the best.


Wednesday, November 7, 2012

The Alphabet Song

I promise I'll update more from now on. I've been getting complaints from people who I didn't even know read this blog (hi, Lynn!) so I will try to be better at keeping everyone updated.

Things are normal, which is amazing. I had a flu (which I am pretty sure I got from charlie - it seemed the same as whatever hell-fire illness he has in September) for Thanksgiving, and it was a sad dinner around here. Then, I got a cold which I am just getting over now, and I'm pretty sure Charlie is picking it up. And charlie's g-tube site had an infection which we are finally seeing the end of now.

The g-tube thing has been an interesting experience - Charlie's site started looking iffy a couple weeks ago. We just monitored it, but when it started looking really gross, we called the hospital and needed up taking him to Emergency (not our local emergency, because the docs there would have said, "WOW! A g-tube! Haven't seen one of those since medical school! So...what's the problem?") but the emergency department at Sick Kids, OUR hospital. As trips to the emergency ward go, it was a stellar experience, but it was still 4 hours of germs, late hours and waiting. We ended up on an antibiotic, but the spot kept getting worse. We ended up taking him BACK down this past Monday, after the 'spot' exploded (sorry if you just ate) and we were assured it would now go away on it's own with some TLC. Just one of the many gross things are having a tube.

Charlie has been lifting my shirt, looking for MY tube. And so begins the careful dance to make Charlie realize that no, not everyone has a tube, and while you need it now, you WON'T need to have yours forever - without making him feel shame about having one. When I ask him if he has a tube, he pulls up his shirt and points and says "Nooooo....". Oh boy.

All of that aside, though, it has been strikingly normal. Charlie is eating well (with the help of some somewhat distracting toys). He is gaining a lot of weight (yay!). Sick Kids is happy with how he is doing. He goes to daycare one half-day a week so that I can train in the pool for the triathlon. He went through the 'mamamama' phase - I could not be out of his SIGHT or he would lose his shit and start screaming 'MAMAMAMAMAMA!'. His dad was heartbroken - but this morning, Charlie woke up with a 'DADADADADADADA!' so I think we are over it now (hopefully. It was an annoying phase). So, even though we are ill, it's all been very, very normal.

The Alphabet!
I can't wait for Christmas, but I don't think that's news. ;)

The Alphabet Song

A, B, C, D, E, F, G, H, I, J, K, L, M, N, O, P, Q, R, S, T, U, V, W, X, Y, Z.