Pages

December 29, 2013

Kissing Ketosis Goodbye?

Around that time that Jade's seizures were at their worst, I wrote this entry on Finding Strength.  (Go ahead and read it.  This post will be waiting for you when you get back.)

That was a little over five years ago.  Five long years and just a little before we started Jade on the ketogenic diet.  Thank goodness we were able to find the strength to get us through the storms because the good times have arrived!

Long-time readers of Michael's Meanderings will know that we achieved seizure-freedom for Jade a few years ago and last September she had a squeaky-clean EEG.  We owe so much to the ketogenic diet and to the team at BC Children's Hospital who helped us to administer it - but gosh darn it the diet is a pain in the butt (still better than the seizures, though) and after so many years of having to kowtow to the diet's demands, we dreamed of a day when we would be free to prepare a meal without having to weigh every ingredient to the tenth of a gram, or plan our every waking moment around Jade's snacks and meals and supplements.

Well, I am pleased to report that the day has come.  Actually, it has been several weeks now, but it takes a while to do the wean off the diet and I didn't want to jinx anything.  Jade is out of ketosis and appears to be thriving.

Here she is, being allowed to eat as much protein as she wants for the first time in five years.



I'm tickled by how much she enjoys being able to eat new foods and by how much she enjoys eating as much of it as she wants.  She has so much more energy! She's growing (She's very short compared to her classmates: A "side effect" of the diet)!  I'm also tickled that we don't have to use the scale anymore! She can eat when she's hungry and isn't constantly begging for food! We don't have to prepare multiple meals at supper! We don't have to lug her meals around with us or prepare them in advance!  Oh, the freedom!

So much freedom, thats we're going to Disneyland! I kid you not!  While possible on the ketogenic diet, the logistics of traveling from Whitehorse to Disneyland while administering the diet sounded as reasonable as packing the car for a weekend trip to Mars.

Now, we're not out of the woods yet.  Yes, she's off the diet.  Yes, she appears to be doing well, but that doesn't mean there aren't things going on in that noodle of hers that we can't see.  We'll be going back to BC Kids in February for another EEG and, hopefully, everything will look great.  If not, well, we'll cross that bridge when we come to it.  For now, we'll revel in the glow of what feels like a fairy tale ending and hope that there's no sequel.

10 comments:

Megan said...

So so so so great.

Carole said...

So very happy for Jade. You all have been through so much.

Shockr said...

This is so exciting! :-) Everything must taste so new to Jade.

Doree Kovalio said...

So happy for you all to be enjoying this new freedom and most of all that your little princess has a clean bill of health these days. Enjoy Disney Land!

Allmycke said...

Fantastic news! I'm so happy for all of you.

Lindsay Milne said...

Wonderful! We are so happy for you and for Jade. You all have been amazing and have so much strength. Xoxo

Catherine said...

We are so excited for you and Jade, Micheal!

Matt, Kara, Hunter and Cavan said...

So freaking awesome. :)

Ben said...

We know the feeling and it can't be described. What an amazing way to celebrate! Congratulations!

Nancy said...

Jade looks so healthy! Such great news for all of you.