Saturday, October 23, 2010

Ronnie's story or how an angel got her wings (part 2)

I'm back to finish this up and hope to make the second half shorter...

Because of the metabolic disorder diagnosis, we were referred to Genetics at the Montreal Children's Hospital.  At our first appointment, we were lucky enough to have a medical resident who had just come back from a conference on rare genetic disorders.  After seeing Ronnie, she asked to test her for Angelman syndrome.  The rest is history.  She is now 9 years old and going to a wonderful school that is pushing her skills and boundaries.  She has a great laugh, sense of humour and an incredibly joyful personality - could be part of her syndrome but I prefer to think of it as her personality.

Ronnie has had her fair share of ups and downs medically (never forget the 21 days she spent in intensive care hooked up to oxygen after contracting RSV, a nasty little virus), even when you do not include surgery when she was 10 months old to fix a duplex ureter birth defect...  thankfully in the last few years she has been strong and healthy - grows like a weed.

The last seven years have been quite the journey; one I could never have anticipated.  I've discovered that I am a much more positive person that I ever thought I could be and that my patience for self-pity and constant negativity is next to nil.  I've learned that when I'm down, my husband is up and rather than continue to feel like Hanzel and Gretel lost in the woods, we've managed to find those breadcrumbs and carve out a nice little life with our incredible children. 

That's it. 

'til next time.

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