Family members have been calling to check on Bug and have told me that they noticed I haven't updated the blog in a while and they were just making sure everything is ok. I'm sorry I haven't posted in a while. It's just that nothing really big has happened since my last post... or maybe too many things are on my mind and I'm not sure how to put it all into words.
Either way, this will be a quick post (mostly because it's after midnight, I've been working on my CutieBug party decorations since Bug went to bed and I'm exhausted).
Bug is eating well since we quit the Keto Diet but she has not gained any weight back yet so I'm getting creative and adding carbs and calories anywhere I can - like adding sour cream and butter to her mashed potatoes and things like that. Hopefully it works soon. She has a visit with her pediatrician on Monday so we'll see where she's at on the arch and go from there. May have to start including calorie supplements to her foods.
Rayleigh had a bad couple of days of increased seizures last weekend then they went back down for a few days then she had a fever, most likely from teething, and that brought on a whole new round of increased seizures and sleepy baby starting Wednesday night. We went around and around with her neuros to get something done about the drastic increase of seizures. The answer we finally received was to increase her dose of Clonozopam/Klonopin. This is an emergency medicine we use to control her activity on seizure-frequent days but we hadn't changed the dose in over a year so the small dose was having no effect on her. So we raised the dose of the pill and she is to take 3 pills a day for 2 days then wean it off slowly after that.
It helped yesterday and today but tonight she had 4 small seizures while she was trying to fall asleep and it's just so frustrating and saddening. At least her fever has been gone for over 24 hours and we can focus on controlling these seizures now. We'll keep working with the doctors to get these back under control and I'll keep you posted.
We are strongly considering the Vagus Nerve Stimulator (VNS) treatment for Rayleigh. I'll do a post on that soon with all the information about it.
Sorry I don't have better news but hopefully we're moving in the right direction.
So goodnight and good-bye for now.
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