I realized I can’t really blog and say anything if I can’t talk about “it”… Or even have conversations in general! And that’s just silly. So here it is.
Since day 1 of starting the ketogenic diet Emmett’s seizures have reduced.
YEP! Reduced! Since the first day.
He went from having a dozen or so a day to now having 2-4 a day. And some of those only last 2 or 3 minutes, as opposed to 10-15 minutes. We’re still fine tuning everything that goes along with the diet. The routine, new scales, new recipes, ketone testing, etc. Once we get in a really good groove we’re hoping to see even better results. And of course we know that this could be that “honeymoon” period where things get better and then start to waiver off and return back to what they were before the diet. But we’re trying not to think about that.
Everything has been going pretty well in regards to Emmett eating. He’s eating everything but starting to get a little tired of certain meals. We can sign into a keto-calculator online that the dietician hooked us up with which allows us to browse recipes and add them to Emmett’s profile. Here’s a screen shot of his meals he can have so far. A lot of them still need to be approved (I am keeping our dietician busy). When I find a recipe each meal has to be calculated especially for Emmett. So I send it to the dietician for approval and she works his meds in with each meal.
We haven’t tried the Keto Cuisine baking mix yet but we have tried his Ketocal formula. It acts as a meal replacement and is handy if we’re traveling or just out and about and can’t prepare a meal. He seems to like it, it kinda tastes like those powdered instant breakfasts.
Emmett is still pretty lethargic and “blah”. That’s what’s been bothering us the most. He’s not his usual excited and vocal self. He has been super cuddly, which has been nice. Because he never cuddles. Ever. He usually just wants to moving. We’ve definitely been taking advantage of these cuddles and snuggles. The dietician said this can last a few weeks and that it’s normal. His body is learning how to burn fat for energy as opposed to burning sugar and protein for energy like it’s been used to. I also wonder if his body is metabolizing his medications differently. It’s like he’s in that sleepy state all over again like when he first starts a new med. He’s gotten some energy back but I really hope he gets back to his normal self soon. I miss him.
I have noticed some subtle improvements with his vision, though! If we hold a toy to his right or left, he can reach diagonally for it. Before he would put his arm straight out and slowly move left or right until he found the toy. So it seems as though he’s able to locate toys easier now and grab for them even when they’re not directly in front of him. He had a PT appointment yesterday and while he was too lethargic to do lots of the usual stuff, he seemed to notice himself in the mirror. At least we think he did, because he sat on his PT and held his head straight up looking into the mirror. Lately he hasn’t even been keep his head up, it’s very droopy/floppy. So something definitely caught his eye in the mirror.
Apart from all of this I’ve just been looking forward to Christmas. I made some Christmas cards and am waiting for them to arrive in the mail. This year we’re staying home for Christmas. I just want to relax with my little family and not haul our entire house to Maine and Moncton. It’s always so loud during the holidays too and that gets to be too much for Emmett. It only made sense to stay put this year and have family come to us. It would be nice to start our own traditions, too.
So there you have it. Some good news and we’re hoping it continues!