Last week we went to Children's Hospital for Alex's 6 month follow-up nutrition appointment. We had gone in February and she was 53 pounds - this visit she was 55 1/4 pounds. Her nutritionist said normally kids average 5 or more grams of weight per day, Alex is gaining less than 3 grams a day. She's still only in the third percentile for her weight. She's eating and tolerating her blenderized diet really well - and we boost all of her foods with extra calories so I'm not sure why she's not gaining at the rate she should. I will say lifting her 55 pounds of basically dead weight, she feels awfully big and heavy to me! And she's still in the 25th percentile for her height - which I was again surprised at - she seems SO tall to me and everyone else who sees her for that matter - she's all arms and legs - but her nutritionist said because she's so skinny and petite, she looks taller than she is. The plan right now is to boost her 100 more extra calories a day and we'll see where she is in another 6 months.
Last Monday night Alex had a seizure at 9PM and then another one at 5AM - the 5AM one was a lot more intense than most of them - and that was her 16th seizure for the month. I called her neurologist and like we had discussed at her last appointment, he added a second seizure medicine. In addition to her Depakote three times a day, he's now added Keppra. We're starting out at just 1ml three times a day for the first two weeks and then we'll talk about how she's done and up her to 2ml's three times a day. As far as I can tell, she isn't having any real adverse reactions to the Keppra. The one thing I think it has done has made her a little dizzy or lightheaded. A few times she's grabbed her arms to her chest really tight and closed her eyes really tight - open them back up and then shut them really tight again, almost as if the room is spinning. That's my guess - but of course, I can't say for sure. Today has been one week she's been on the Keppra and she's had no seizures.
As I'm typing this she's sitting at the kitchen table with me playing on her I-Pad with Tabitha and just as happy and silly as can be!!
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