The DI Vicious Cycle

*sigh* DI is going to be my crazy-breaking point. I am so insanely frustrated with it. Every time I think we understand it and have a handle on it - it flips me on my head and laughs in my face.

While LB was sick her sodium dropped to an alarmingly low (like seizure low) number of 131. We later figured out this was due to her not eating, and thus not taking IN any sodium, than to do with her actual desmopressin (ddavp) amount - that we had just upped.
So, we slowly made our way back up to the original dosing after the antibiotics did their work and she started eating again. And then we made our way back to the dose we had upped (2.4ml) Now she is still drinking like crazy. First thing in the morning is "Wa Wa? App Juice? Milk? Wa Wa?" Try changing a diaper and her wet pajamas while dodging those requests!
And the wet pajamas. GRRRR. We go through at least 2 if not 3 PJs a night. And usually one sheet a day. It's all because at the end of the day when her medicine wears off (called "break through peeing") she is insanely thirsty. When she wakes up from her nap at 3, she has about 27oz in less than 2 hours. And then she has at least 9oz for dinner and another 9oz before bed. By the time we put her to bed, her belly is so huge and swollen with liquids and even though she gets a dose of ddavp before bed, well, it has to go somewhere! And that somewhere is all over her pajamas and clean sheets.
It's insanely frustrating.

We got her sodium checked yesterday and her first morning was 140 (normal) and her afternoon was 143 (creeping up on mid-high) *sigh again* I just want her to be able to not be tethered to the sippy cup.
I feel like for awhile we were really great and she was eating more and drinking less (for the record, she's eating GREAT but has to have a lot of water to eat too.) I remember she was getting through the night without peeing out of her diaper and refusing her water at 3am. I just want that back again!
And can I tell you how sick and tired I am of having to take her to get her blood drawn? One at 8am and another at 4pm? It's annoying and sad and frustrating and most of the time, pointless.

END RANT.