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Two Steps Forward, One Back
Abby had a great keto followup at CHOP yesterday. I’ve shared with a few people privately, but have hesitated to say out loud, that she’s had some really outstanding and remarkable success with the...
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Paranoia
Have I told you about how on Saturday Abby snuck 3 donuts, her ketones plummeted and she had five seizures? And how she spent the entire day screaming at me about how mean I am to her and how I don’t...
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The Waffle Saga
If you never thought that waffles could be a saga, think again. On the ketogenic diet, regular kid dietary staples are a thing of the past. That means pancakes, waffles, grilled cheese, french toast,...
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The WaWa Family
Abby’s diet consists of 90% fat. Fifty percent of the fat she consumes is in the form of heavy cream. Specifically, the heavy cream she consumes is special 6g of fat per serving cream. Most heavy...
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KetoKid
Yesterday marked an important milestone: Abby’s body officially begun the transition into ketosis – her morning blood ketone levels were over 2.4. The team here looks for anything over 1.5, so...
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It Could Always Be Worse…. Right?
CHOP KETO ADMISSION: DAY ONE Today was admission day for Abby to start the Ketogenic diet. The best I can say about today is…. at least we have set the bar low for tomorrow… after today, even the...
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Frantic
So this morning, when I that my van keys were missing (they are still missing); I was frantic. The kids were already on their way out the door and I didn’t have time for such shenanigans. I ran around...
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Waiting to Exhale
I was on my way to the bank when I received a message from my son’s school: [Redacted] School has been evacuated. All students & staff are safe. Now awaiting the all clear to return to the...
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Whole Family Support
We haven’t fully moved Abby’s epilepsy care to CHOP, but we are 90% of the way there, and the thing that has convinced us that we are doing the right thing is that they have an approach that treats the...
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Ketoge-what?
When Abby first got her diagnosis, it wasn’t supposed to be a big deal. Her seizures would be simple to treat and she would outgrow them in a few years and voila! But something didn’t feel right, so...
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Dusting off the Blog
For a long time, I’ve thought that I’d like to get this blog going again, but something is always in the way. Still, I feel the void left by not having this outlet that I used to have during my...
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#Microblog Mondays: How You Choose a Physician
I posted a completely unscientific poll on my Facebook page recently asking a simple (but maybe complicated) question: do you think that your doctor/specialist needs to have personally experienced a...
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#Microblog Monday: Home again
I won’t try to catch up on the last several years of not blogging just now. I will, instead, jump into Mel’s #MicroblogMonday and hope that this jump-starts me back into blogging in general. I just...
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Happy Birthday, Tobie!
Three years ago today, my miracle baby, Tova Lieba (meaning “kind heart” or “loved one”), was born. It was the end of a hellacious pregnancy with the sweetest, most beautiful five pound reward at the...
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Support the March of Dimes’ March for Babies
My team is 1/3 of the way toward meeting our March of Dimes March for Babies fundraising goal. We need your help to support this important organization. CLICK HERE TO DONATE OR SIGN UP TO WALK WITH US....
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Update on ChezPerky
I’ve been pretty lousy about updating, but I should get back to it, so as usual, I’ll just dive right in. My health hasn’t improved significantly, but it hasn’t gotten significantly worse, either....
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Protected: 3mm
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Diving back in
I haven’t been blogging for a long time – and I’m not sure whether I’m ready to dive back in or not. Nevertheless, something’s been nagging at me for months about it, but I haven’t had the energy for...
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Re-emerging
After my last post, I disappeared again. This was not by design. On May 29th, I was supposed to see my gastroenterologist in the afternoon. Before leaving for my appointment, my home health nurse...
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And He’s Off…!
This morning, Seth finished packing, printed out directions from the airport to his hotel and various other places that he needed to go, and headed upstairs to say goodbye to the kids. He told each...
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