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March 02, 2009

A state of stunned (and hopeful) disbelief.

In mid-February, I took Jade down to BC Childrens Hospital for an EEG. It was a little over three months since we started her on the ketogenic diet and it was time for a check-up.

We know that the ketogenic diet is helping to control her seizures, but the EEG showed that her sub-clinical seizures (the ones that stay in her brain and don't manifest themselves through jerking, staring, drops, etc.) were worse. It wasn't cause for concern, though, because she never had an EEG when her seizures were at their worst, the latest EEG may be worse relative to her previous EEG, but it's likely an improvement over where she was before she went on the diet.

The keto team decided that there was still room for improvement, so they wanted to increase Jade's ratio so that 95% of her calories come from fat (instead of 90%). Fawn and I were dreading the change but it went quite well.

And it helped.

Yesterday, for the first time since September, Jade had no seizures (that we could see). It's a little hard to believe. You almost come to expect the seizures the same way you might expect squirrels at your bird feeder or ravens in your garbage - you don't want them there, but there they are, making an appearance and causing trouble!

Today, she had a short little drop at breakfast but, overall, that's still an amazing improvement. Before the increase, she was having eight to twelve full drops a day.

Now, she's running around like a three-year-old should. She's using new words and word combination like crazy. She's a little chatter box! I don't care if she climbs up on the furniture, because I'm not worried that she's going to have a seizure and fall! If she falls it's because she doing normal, adventurous, three-year-old stuff!

We've come so far since those nightmarish days in October when it seemed like my daughter was disappearing inside her own shell.

We have our child back! Let's hope things stay that way!

(As you might expect, Fawn is pretty happy about it, too.)

9 comments:

Murray said...

As you know, I'm HUGELY happy for you. Maybe it's the power of positive energy (from friends, from the returning Sun, or??) but whatever the reason, I pray that it continues. You all deserve a break. And maybe Jade's dramatic improvement is advance positive energy for when you get "the call" about the best job in the world! :)

Every Photo Tells A Story said...

Aw, terrific news about Jade, Michael. That's the best news of all! I'm sure between you and Fawn (and your need to communicate in one form or another) she will continue to be a chatter box and more:)

Bryan/Vikki said...

the worry must be getting alittle lighter...you are all very brave. our wishes are with you Vikki and Bryan

Kennie said...

Hip-Hip-Houray!

Anonymous said...

sooo great to hear it:) It is the best reward for what you and Fawn's went through and efforts you both have done. Keep on charging! You both are great! Hugs for 4 of you. Love you all:)

Speaka said...

Really great to hear/read!

Allmycke said...

I'm so happy for you!

Talie said...

Oh Michael--I'm so happy to hear the great news. Jade is often in my prayers. Although I do not read your blog regularly, I get all the updates through my hubby, Speaka, and am so happy for you and Fawn and Jade. May she continue to get better and better--Your courage and strength in this ordeal is inspiring. Please keep on updating your fellow followers.

Cheers :o)

YukonJen said...

Hi Michael,

Glad to hear this news! And the tone of your relief. You guys deserve it.

I was following your "Greatest Job in the World". I voted. And kept showing my friends.

Regardless. YOU WERE ON THE NATIONAL!

Love it.
Jennifer