Recently, Luke's seizures have been showing up at crazy hours....like 3 am, 4 am, 6 am. I'm not too sure if this is recent change or if he's been doing that all along and I'm just now catching it. We bought a video monitor a couple of weeks ago, and it has definitely been helpful in keeping a constant eye on Luke. During the day, he rarely has any seizure activity that we can see. THANK GOD! But these pesky night time seizures seem to be a constant reminder the seizure monster still lives here. Ugh.
So, after talking with his dietician, the plan now is to resume night time feedings. y-a-w-n. We've been so blessed with babies who sleep so well at night. This will be hard to get used to again....setting the alarm for 2 am...stumbling to the kitchen, getting the bottle ready.....you know the routine. Hopefully, this helps. I would do anything to get rid of the seizures, so in that sense, it's really no big deal. (but I will miss the sleep!) The dietician thinks that Luke's 10-12 hour nights are just too long for him to go without food...or should I say fat. So, at 2 am, he'll get two extra ounces of heavy whipping cream. The dietician also increased his daily caloric intake...he's at 1,400 calories per day now. He's still losing weight :( so we're hoping the extra calories will help.
Luke's been on the ketogenic diet for 2 full months now. Here are some improvements we've seen:
* Luke's vision has improved A LOT! Praise God! He still struggles some in this area and when you're with him, you can tell he still doesn't see everything. But he tracks so much better, he focuses and he makes great eye contact.
*Babbling makes a come-back! Luke lost his babbling skills when the seizures started and now he's back at it. I just put him down for the night. He wasn't getting settled and I had to go back in twice to tuck him in again. Both times I got to his crib, he started babbling "Ma-ma-ma-ma" :) Realistically he probably isn't saying "ma-ma" because he knows that's who I am (although it's nice to think that maybe, just maybe he does?), but either way, it's just GREAT to hear his little voice again.
*Luke is able to bear more weight on his legs and his upper body is beginning to get stronger too. He still has soooo far to go in this area, but we're seeing some improvement.
*Smiling.....lots of smiling...and laughing.
*Last, but certainly not least. the clusters of seizures are beginning to vanish.
You there? I may or may not have just Googled, "Is blogger still a thing?" I guess it's still going.....but possibly not th...
So November is Epilepsy Awareness month. And purple is the color assigned to epilepsy awareness. I remember getting the boys all purpled up ...
So, the boys haven't been thrilled with getting haircuts...well, really...ever! Even when they were little guys and we took them for th...
This won't be a long update, but we want to share some disappointing developments with Luke. On April 19th (Easter Eve), Luke had a lo...