One of the ways I'm currently struggling with my daughter's recent health struggles is that I'm realizing how hard it is going to be to maintain baseline health. I've said it before and I'll say it again: the last three years has really lulled me into a false sense of security.
Yesterday my daughter had an appointment with a nutritionist. She has a horrible time gaining weight because of all the medications she is on. For example, the carbatrol increases appetite, but the focalin decreases it. On the weekends, I try to keep her off of the focalin so that she spends two quality days eating, but the carbatrol is so thoroughly changing her moods that I can no longer do that. Anyway, we'll now be seeing a nutritionist regularly to help us help her gain weight.
I also will be making lots of phone calls to the neurologist in the coming weeks and months to discuss the medications she's on, side effects, and seizures she's having. I'm not exaggerating when I say I'll probably talk to the neuro at least once a week.
I'm not really having trouble adjusting to this fact. We've done it before several times. It's mostly that I forgot how much it takes to keep her healthy when the seizures are with us.
As a side note, she had a seizure Friday. New countdown: 4 days with now seizure activity. Let's hope for many more.
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