We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
6 comments:
When you are done picking brains, can I pick yours?
Taylor has been having seizures non-stop for 13 years now. No meds or surgeries have stopped them. Oh how I long for the days before she turned 8 when we only dealt with 1 or 2 seizures a month. I thought life was rough back then. *laughs*
I hope you find some answers. Your Peanut have the unrelenting seizures in common...along with the "hate having the hair washed & brushed" thing too.
oops, I left out part of the sentence...Your Peanut and my Taylor is what it should have said.
Typos make me crazy...sorry.
As you know, I am in your club. I hate being in it, though (nothing personal, of course). I feel dragged in, kicking and biting.
Aren't you the one who told me you were told that depakote sprinkles clog tubes? So we were avoiding it, until I read on a support group that Red Dye #40, which is in Phenobarbital elixer, can cause seizures ... and when I went to research it further, I learned that depakote syrup has it too!! So I did a search for something like: does depakote sprinkles clog g-tube? and found a site that says it is less likely to clog if mixed in applesauce instead of a liquid. And the same site said that both of those red liquids contain a lot of sorbital, which is probably the reason for all the diarrhea we've been having, ... and that is probably lowering her med levels! So we made the switch. MUCH better. I'm just way too tired to try posting that on her blog. :( I'm sure being up at 5am mixing sprinkles in applesauce isn't helping the situation.
Have you ever thought much about the modified Atkins diet?
HEY. We have the hate-the-hair-brushing thing going on, too!! :)
Can't wait to hear all about it! :)
I am sooo glad to hear this! I attend my local meetings when I have time and they are so helpful, if just for the emotional support! There are lots of people with epilepsy as well as parents of children with epilepsy there.
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