Wildman Emmett!

This turkey's determined.

24 Hours Without Phenobarb And A Fallen Pizza

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Yep, you read that right! Who was freaking out for those 24 hours? This mama right here.

We met with the neurologist on Friday and Emmett had another EEG. We were hoping his EEG would have been clearer but the Dr. said there hasn’t been any change in epileptic activity and the results were the same as the EEG done before he went on the ketogenic diet. It’s strange how these things work. Then we talked about his blood tests and those results were pretty normal. He just had high cholesterol and lipids, which is common when on this type of diet.

Then came the discussion about how lethargic he’s been. Two weeks before Emmett started the ketogenic diet his seizures were worsening again. We didn’t want to start him on another new medication since he’d be starting the diet so soon. The Dr. suggested we increase his phenobarb to see if that would help and his theory was that he was getting too much now. He said sometimes it can take a few weeks for the phenobarb to kick in to his full potential when there’s an increase in dose and since Emmett had to fast before the diet started and then he lost some weight, it makes sense. He wanted us to not give Emmett any phenobarb Friday night. Now, Emmett’s been on phenobarbital since his first seizure when he was 2 days old. It’s been the only medication that has really helped keep his seizures at bay (for the most part). It made me really nervous but we made it! 24 hours without phenobarb! He didn’t have more seizures, either!  The Dr. said phenobarb stays in the system very long so we shouldn’t have any issues taking him off it for a day and to see if he perked up a bit. And he has seemed to perk up! He even laughed a little bit today and is starting to bare weight on his legs again! We started to give him the phenobarb again last night but lowered the dose. He had been on 75mg and now he’s on 45mg. Hopefully this is what has been making him so lethargic and fingers crossed that this lowered dose will be enough and he can get back to being Wild Man Emmett! I feel so horrible that I didn’t think about the increased dose before his diet started. I hate to think that he was being over medicated for a month and a half, ugh. Since the lethargy started literally when the diet started, we figured it was the diet for sure. And I’m sure that did factor in a bit at the start. If it turns out that the phenobarb was the issue, we will be able to continue to stick the with the diet for the 3 month “trial” period and see how that goes.

What’s with the fallen pizza, you say? I did groceries yesterday and bought one of those “take and bake” pizzas from Sobeys to have for lunch today. Not sure why since we made enough seafood chowder last night to feed us for the next year. Anyway, the pizza was resting atop one of the grocery bags and of course I got stuck with the bunged up cart. I tried to veer left and away from a pile of ice in the parking lot but of course the cart preferred to go right instead. The cart popped up and out flew the pizza. Upside down. Onto the ground. Pizza everywhere. There was a guy behind me with his groceries and I heard, “OH NOOOO!” He sounded more upset than I did. Boys and their pizza, you know. So there I stood, cars waiting for me to pick up my mess so they can get by, looking annoyed that I am holding them up for an extra 2 minutes. Looking annoyed because it’s Christmas and no one can ever smile during this time of year. AMIRIGHT? I really had to laugh. I mean, of course this had to just happen, right? Of course it did. I scooped up most of it, left a pile of mozzarella and chopped peppers and onions behind, flashed a smile at Mr. Impatient and headed back inside with pizza-mess and the stubborn cart full of groceries. I gave it to the lady at the counter and she told me to go get another one. Sweet! Needless to say I held on tightly to that one. Wouldn’t want to upset anyone else sitting in their warm car while they watched me in the freezing cold struggle with a cart full of groceries and a fallen pizza.

I’m not even sure if we’re going to eat this pizza today! We ended up making a seafood chowder for the first time, and I swear the recipe should really have added “a pot the size of a small fridge” to the list. We had some (a lot) overflowing chowder which had to be transferred into two pots and now we have enough chowder for breakfast, lunch and dinner for the next month.

While I’m on this food kick, this is what Emmett ate for lunch today. It’s “spaghetti and meat sauce” only it’s not noodley spaghetti, it’s spaghetti squash. I love his mini frying pan!

IMG_2727

 

And this is the result. A wee small meal!IMG_2736

 

Then I tried to get a smile out of him and got a cranky face instead. I don’t blame him, I was taking pictures instead of feeding him!IMG_2735 Also, I think this is the first time I ever get a photo of a cranky face!

 

Don’t worry, he returned to blowing raspberries as soon as his belly was full! IMG_2744

 

I still have yet to get my Christmas cards in the mail. At least I just wrapped a ton of gifts so the tree looks nice and full underneath. Hopefully the cats will be kind and stay away. Now to finish addressing the Christmas cards. Eeesh! I need more hours in the day.

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Author: Nicole Valdron

Just a loving mama.

2 thoughts on “24 Hours Without Phenobarb And A Fallen Pizza

  1. Nicole….I ate spaghetti squash tonight too with my sauce!!! Uncle Roger had regular spaghetti. That was funny…I liked the pictures especially the one of his funny face. Too cute!! I know there’s nothing we can do to change your situation but please know that we continue to pray for Emmett and you and Ryan. Hopefully soon they’ll figure out the best treatment for Emmett. Thanks for keeping us up to date with his situation. We love you…and we are proud of you and thankful that Emmett has the best mom and dad ever. Love, Aunt Donna

    Sent from my iPad

  2. I LOVE YOU…..MOM OXOX

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