Zack's 1st St. Patty's Day

I hope everyone had a good St. Patrick's Day!! Ours was about as perfect as it gets: Zack was SO close to having a seizure free day!!! He had the only one around 11:30 at night, but it was only a single jerk and some spaciness, much better than his typical seizures so we will gladly take it! 

Happy boy!!

Not so happy now that we tried to make him pose for some pictures.  Webster didn't really care for it too much either...

We have been doing pretty well lately, with a couple little bumps here and there.  I'm not sure if I mentioned it before, but we have concentrated Zack's formula a little bit to get him some extra calories, and he has been doing pretty amazing overall.  I had my wisdom teeth taken out and Zack did great with Dad and Grandma(s), even having a day or two where they only saw a couple seizures!  The problem is that since we changed his recipe, he has started throwing up here and there.  It seems to be that he will power puke (sorry for the description) once or twice a day for a few days, then be fine for a couple days, then start the cycle again.  We have tried to wait it out a little and see if he just needed to adjust to the change, but after no luck with that we decided to change his antacid and see if that helps.  He is already on Zantac, but he has been arching a lot lately and gets fussy here and there, so we are hoping it is his reflux kicking up again.  Reflux runs on both sides of our family, and the Keto diet is known for causing reflux because of the higher fat content, so our poor baby boy stands no chance.  We are switching to Prilosec from the Zantac to see if that helps, otherwise we may have to look at changing the diet around.

As with anything, getting this new med has proven to be difficult.  We have to be very careful about the medications he takes because of how strict the Keto diet is.  We first had to find out what the our options were for antacid, then we have to find out which has less carbs.  We learned that Prilosec has less carbs than Prevacid, but that if you get the generic version instead of the name brand, the amount of carbs can be different and/or change without warning from the manufacturer.  So of course we had to try to get the name brand version, which we got insurance to agree with covering, and now we have to wait for it to be ordered because no one carries name brand meds anymore. I truly wish there was a Ketogenic guru in our area, because sometimes things are just much more difficult than they need to be.  I will say that the Charlie Foundation website and discussion board has been an amazing help to us, and for other Keto families that is a mind-saving resource, especially when we get those frustrating "well that product should be ok" responses from our local Keto team :).

Zack is still trying to cut his first teeth, and he has been getting crabby!   Plus he is starting to develop an attitude, and is letting us know when he doesn't like something.  I must say, that even though no parent wants to see their child upset or uncomfortable, I get an odd sense of happiness out of seeing him fuss.  He went for so long in such a fog that nothing seemed to phase him, so seeing him whine, fuss, and protest his therapies lately has secretly been a joy :). 
 

And protest he does now!! When his ladies come to make him work he has learned to resort to one of two things.  He will cry and whine when they try to make him do something he doesn't want to, and when that doesn't work for him he has figured out "playing opossum" works wonderfully.  He acts like he is asleep, regardless of what we do to wake him up.  The funny thing? About 3-4 minutes after the therapist leaves....Zack is wide awake and bright eyed! While this is frustrating because we only get a limited amount of time with them each week, it still makes me laugh.  Despite the seizures, meds, delays, and everything else that has been thrown at him, my boy understands enough to know how to shut those ladies down and get his way!!

He was supposed to be working with Miss Amanda on his vision, but he decided he'd had enough and shut down on us like this. Little stinker ;-)