Imagine this with O Fortuna cranked up with crackly, static in the background.
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Cole is not doing so great. Repeat.
We think it is time to switch meds. Repeat.
Cole is creating un-human amounts of urine, therefore creating un-human amounts of laundry. Repeat. Repeat.
We think we're going to try Clobazam. Repeat.
Cole is doing a little better! Not repeated so much.
Oh, just kidding, we're not trying Clobazam. Repeat.
Is Cole allergic to milk? This could be the end of his eating by mouth. Repeat.
Niki thinks she's having a mental breakdown. Niki commences pulling out hair. Repeat.
Cole is having too many seizures to count. Repeat.
Cole is totally wired in the middle of the night. Hardly sleeping, therefore his parents are hardly sleeping. Repeat. Repeat.
When is the nurse finally starting? Repeat.
Cole needs so many rescue meds during the week, that they have transitioned to regular meds. Repeat.
That new medication sure acts a lot like the rescue meds. What will we do if his body gets used to benzo' s and he needs help? Repeat. Repeat.
Niki wishes there was a way to make her legs look something beyond a whiter shade of pale. Repeat.
Should we stop giving Cole Valium, maybe he is becoming addicted? Repeat.
Maybe we shouldn't even start something new. Repeat.
Niki is going out of town for a few days, starting something new would be ridiculous. Repeat.
Might as well start now, he surely isn't getting any better. Repeat.
Cole's stomach starts rebelling. Repeat.
Cole is super cute and says something funny like, "Oh my goodness, I love you!". Repeat. Repeat.
Niki searches for a way to unplug the record player, take out the batteries and remove the chanting voices in the background. No such luck. The record starts again.
Is it just me, or is it like Groundhog Day around here?
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I was just thinking the same thing. I was trying to think of something to post about, without repeating my same depressing...well, here we go again, seizing, emotional, angry, not eating, weird urine pattern cycle we keep going through. Just when I think we have something figured out....yeah, not so much. But, my brain never stops trying to place logical structure on this completely random disease....UGH. Anyway, I thought I would mention that Nolan did become addicted/tolerate to his rescue meds (his benzo's), while we where in Ohio picking up Ani, his dog. We ended up weaning him and now use a combination of Benzo's and Phenobarb to help...Don't know if that will work for Cole. But, I do know how scarey the process is when ER drugs become mainentance drugs. Take Care -- Kathy
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