It's been a long three weeks... here's why...

Hey.
I know I've been distant. Ok, not distant, actually non-existent here on A Life Less Ordinary. Mostly by circumstance, but some by choice too because I wasn't really sure how I was going to post about what we are going through and still manage to stay light-hearted and funny. Remember, I am not really a huge fan of blogging for sympathy, in fact I kind of hate it... but recently I have come to understand it a bit better.

Back in April I did a very brief and non-informative update about my son being admitted to the BC Children’s Hospital in Vancouver, BC Canada. Back then, he was ‘diagnosed’ with Cerebullitis which is more of a description than a diagnosis (much like tonsillitis is an inflammation of the tonsils) and we were sent home with the knowledge that it was post-infectious and not likely to happen again. He was 10 months old and had the motor skills and development age of a newborn. We were reassured that his mobility would return, and with regular physiotherapy would catch up with his milestones.

On October 9^th my son had another ‘attack’, meaning after a small fall seized, went in and out of consciousness and had extreme vomiting. We were rushed to Children’s where we spent 11 days meeting with numerous neurologists and metabolic doctors who were perplexed with how he was presenting, and determined to find the cause.

We are home now without any real answers, but are assured by the excellent team of doctor’s that they WILL find out what my son is suffering from. They have confirmed that he did not have Cerebullitis back in April, but more likely suffers from a rare genetic neurological disorder. They believe it revolves around “Channelopathy”, but which disorder is still unknown. Because of how rare Channelopathy is, testing is done through government grants and is sent out of the country. DNA testing is currently underway, and we hope to have the results within a few months.

To everyone who has thought of us, prayed for us, and sent us words of encouragement, thank you. We love you all.