The reason why they like to keep in contact is mainly to share any new information that's discovered about CHARGE and any major changes in Caelan as well. They're there to support us with any questions we have about his diagnosis and future.
Well there were no new developments with CHARGE in the past two years and we really don't have many questions for them. We're well supported through a number of different channels regarding CHARGE and I didn't have any concerns to discuss with them.
I'm happy to say that we our follow up appointment will be in FOUR years time!! That was probably the highlight of the appointment for me... Four years is a long time in CHEO hours!
I was also happy to get a weight and height for Caelan. So here are the stats, to the best of our/their ability, nothing too exact!
Weight: 14.75kg or just over 32 lbs.
Height: 93.5cm or 3ft. 6inches
He seems to be hovering around that weight forever!!
They also wanted to take pictures of Caelan's CHARGE features, however that was when Caelan's patience for this appointment ran out and he "lost it". He quickly recovered when we packed up to leave though so nothing to traumatizing. Just typical 4 year old behaviour at being fed up of adult talk in a hospital room for almost an hour. I advised that I'd e-mail them some pictures so they could share them with the residents. CHARGE isn't that common so they don't get to see these features very often and because it's a learning hospital I like to help out if I can.
Caelan's "CHARGE" hands have a more square palm and that crease in the top half of his palm takes a sharp curve upwards making it resemble a hockey stick... If you compare it to yours, yours probably doesn't do that.
One of Caelan's "CHARGE" ears. That cartlidge that goes straight across his ear usually is in more of a "Y" shape... I think?!
They also wanted a picture of his asymmetrical facial features that show that his right eye is smaller than his left and his facial palsy if I can capture it... Haven't been able to yet!