It's good to know I have company in this boat. Barb, D16's past was littered with hospitalizations, surgeries, seizures, etc. We've been in a good place for awhile now, and I'm very grateful for it.
But like Ryan and Finn, we also have our fair share of surprises. This week has been one of them. First an appointment with the nephrologist on Tuesday - her seizure meds are processed through the kidneys, and she has renal acidosis. D16 is supposed to drink a gallon of fluids a day. Her dad and I make sure we always have water bottles around and on her night stand. But she never comes close to that (not even a half gallon), and I get lectured. I totally understand the gravity of the situation, but how do you make a cat bark? Or make it understand it *could* bark if it put its mind to it?
Anyway, she had a 4 hour EEG yesterday, and the results were no surprise. Her seizure activity has doubled, and there is a medication increase. I just got off the phone with the neurologist's nurse to make sure she lets the Dr. know that she needs to talk to the nephrologist before I do anything (I promised that). They are in different hospital systems, but I'm hopeful that they can chat sometime today.
It's TOUGH.
And Fig, it always makes me feel blessed to live my own existence. She has it so tough and always has a cheery smile. I love having a special needs kid. I couldn't imagine her any other way.
I'm sorry Chuck didn't follow your lead, Barb. It's his loss. I'm grateful that my XH shares this load with me, and Sweet Stuff is supportive as well.
My landscaper is here so I'm going to sign off. I'm finally getting the HOA and my neighbors off my back.
Betsey
"There are only 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
