Saturday, January 4, 2014

Because, you know, life was boring

FOR PETE'S SAKE. Seriously???

If you've read any of my past posts, you may know that my younger daughter Sophie was diagnosed with Prader-Willi Syndrome shortly after she was born. She will be 10 years old very soon, and it has been an interesting, educational, tiring 10 years. The next 10 years should prove to be even more..."educational"...if the stories from other PWS parents are any indication.

So, because life is wholly unpredictable, and because really, who wants their life to be boring and without incident, my older daughter K has just been diagnosed with "Primary Generalized Epilepsy". Wanna know where she was when this diagnosis came about?

She was a gazillion miles away, on a school orchestra/band/choir trip to Orlando, Florida. Talk about a phone call you never, ever want to get at 11:15 p.m. when your child is that far away and experiencing something that must have scared the cr@p out of her. She was in excellent hands, though - the orchestra director was on the trip, and accompanied her through the entire experience of two hospital trips and an EEG which conclusively dx'd PGE but triggered another seizure another seizure in the process.

It hurts my heart to think about my beautiful, smart, funny girl having a seizure, even when there are 3-4 highly-qualified doctors right there to help.

Sorry for the swearing but, honestly, it has been a shitty couple days. K has been dealing with severe anxiety since March of 2013; having dealt with that and turned a corner with it through meds and counseling, now she has this to accept and understand and live with. Certainly she should gain confidence from this experience! Heck she made it through this trip and the seizures and the hospital stays without her parents being physically there with her...IMPRESSIVE, without a doubt. I wish this trip had happened and finished without this added detail? Most definitely.

Here's hoping that 2014 does NOT become "The Year of The Bad Keppra Adventures". :-/


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