Tomorrow is our official start day for the ketogenic diet! With less than 24 hours to go, I don't think they can come up with a reason to stop us this time! Ethan has continued to do well, with a few things here and there that are probably little seizures. We noticed he had a little rash for about a week now, and yesterday his entire body broke out. I called his neuro, and the nurse there told us he had to be seen by a pediatrician that night. We got him in and the doctor (who wasn't our regular one) said the rash was probably viral and sent us on our way. We got a call back from his neuro this afternoon and she said there was no way it was viral and she's pretty sure the new med is causing it.... you know, the new one that is stopping almost all his seizures. Yeah, so now they're most likely going to take him off it tomorrow when he gets up to the hospital. Isn't that just great!....
So as a last day of fun before the diet, we took Ethan and Taylor to Chuck-E-Cheese for a day of fun and food he won't be able to eat anymore! It also happens to be epilepsy awareness day today, so Taylor was decked out head to toe in purple for epilepsy! Mike and I wore purple ribbons, and I wore a purple shirt as well. Ethan didn't have any purple and we don't trust him with pinned on ribbons so he was purpleless!
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My purple girl! |
We had a blast and played all the games. He has been having so few seizures that I almost got a sense of normal while we were there. No one knew looking at him that he was any different (although I wonder what the lady stamping his hand as we went in thought when he couldn't stop shaking to get his hand stamped!) and it almost felt like we were free, if even for a moment. But then I noticed sitting next to me was a ring sling (normal if you have a baby) and then a dose of emergency meds just in case.... never leave home without it! So I guess it was almost normal, but it felt great!
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He always loves the monster truck! |
So that's where we are for now. We are so excited, but this is all going to be such a change. They wanted us to try to cut out sugar and carbs today and tomorrow to get a little jump start, and I constantly found myself dashing across the room trying to take a sugary drink out of his hand, or remind myself that he can't have this or that. It's ok if he has it now, but once he's home just one sip of soda could totally throw off the diet. NOT going to be easy. I think we're ready though:)
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Having so much fun! |
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Baby girl in the new sling I made this morning |
What awesome pics!!I love her pigtails!Too cute!I love the sling,too!I'll be praying all goes well!
ReplyDeleteLauren