February is for Hearts...

Well it's that time of year...or I guess I should now say, every-other-year. It's time for Kennedy's cardiology check-up tomorrow afternoon. She's done so well over the years that she has been reduced to being seen only once every other year, which is a great thing. She has been home from school today with a fever and cough so I'm hoping she is okay to make it and we aren't deferred, especially since she only sees them every other year now.

The routine begins: a letter arrives from the IWK Health Centre with instructions: "Kennedy will be seen on February 23rd, 2011 for a cardiology appointment. She will also have an ECHO before the appointment. Please arrange for an ECG at least two weeks before the appointment." She had her ECG a few weeks ago and tomorrow will be the ECHO and the general cardiology appointment with the IWK travelling clinic. I'm not anticipating anything major but history has taught me that I need to be prepared...

When she had her first open-heart surgery at 9 days old, we were in the shell-shocked stage still. Too stupefied to truly realize what was happening. I thought, though, that when that was over. One thing to check off the CHARGE syndrome list: we were done with heart issues except for regular check-ups. Sometime in late 2003 when she was five, however, during one of those regularly scheduled check-ups, I got hit by a Mack truck blindsided by the clinic doc who nonchalantly told me, "Yeah, so we're looking at another surgery in a few months for..." Needless to say, I don't remember much of the rest of that appointment. In fact, I remember driving to a nearby park and, after arriving, I couldn't remember driving there at all. My mind was just a numb blur of astonishment. I just kept thinking, "Another heart surgery? What? We were done with that part four years ago! That part was before choanal atresia surgeries, before hearing aids, glasses and eye patches, before gastric feeding tubes and Nissen fundoplications. This was just supposed to be an in/out/forget-about appointment." My mind was whirling but I did manage to get myself together enough to call a friend who lived near the park and carefully drive us over there so I could continue the murky journey back to coherence. Nobody had ever told us there might be a need for a second surgery so it really did throw my naïve brain for a loop.

The second heart surgery was definitely harder for us because Kennedy was so much more 'knowing' at that point. She fought tooth and nail going into the O.R. and even whacked me in the face because she was so upset. But, in true Kennedy fashion, she came through the surgery just like she always does and we got through it too - after a month away in Toronto for everything that needed to be done (cardiac cath, two-week wait, and surgery.) After that surgery, the surgeon did tell us there might be a possibility of her needing another surgery at some point in the future.

At her last checkup, I spoke to the IWK cardiologist about the possibility of another heart surgery and he told me that things looked really good and that it wasn't definitive that she would need one, which allayed my concerns somewhat. I had been operating under the assumption that it was just a matter of time. Nevertheless, each year, I wonder if I'll hear the news I don't want to hear, or if we will once again coast under the radar with a healthy check-up and go on with the status quo for another two years until the next appointment letter arrives. I don't dwell on the what-ifs because it just isn't productive in the day-to-day hustle and bustle of our lives but this particular every-other-year appointment does make me stop and consider the possibility of another what-if.

So, with all that being said, do me a favour and please keep a very special & precious heart in your thoughts tomorrow and hope we get to coast for another couple of years.

Marshmallows!

Yep, she may not eat much orally, but she DOES have her favourites! Marshmallows are right up there on the list along with Goldfish crackers (well, not eating so much as licking all the salt off), yogurt tubes, and ice cream.

Today we had an appointment with the pediatrician - she's up to 64 lbs and 48 inches, so her weight is staying right in the 50th percentile but her height is really low at only about the 5th percentile. She had some blood work done through endocrinology about a month ago, but we haven't got the results back yet. Those results will tell us whether or not she needs to go for further growth hormone testing. She just may be short. The endo is just concerned because Graeme and I are both in the 90th percentile for height and children are usually similar to their parents. That's not throwing "CHARGE" into the mix, however. Time will tell, I guess. Anyway, other than that, she's good 'n' healthy otherwise, she got a clean bill of health from good ol' Dr. Todd.

School is so-so at the moment - I'll save that for another post. Big meeting at the school next week.