Daily Life

Written by Daddy

We are physically and emotionally exhausted. The nights remain sleepless and the days are clouded by "roid rages" and hunger fits. The steroids that ViviAnne takes twice a day make her insatiable. She craves cheese like there is no tomorrow.

She was well enough on Sunday to go over to my parents' (Grandma and PawPaw) house. She found PawPaw's Greenbay Packers Cheesehead on the steps and took a bite of it. Kristen had to pull the rubber foam out of her mouth. She said she knew it wasn't real but is soo hungry. We laughed about this, but in reality, it was absolutely pitiful.

We are trying very hard to moderate the amount she takes in to keep her from making herself sick. The steroids also cause a swollen stomach and her tiny figure to fill out. The doctors swear that this is a side effect of the medication, not her newly found appetite. She is so chubby right now that she looks and even sounds like a different person. In a way, it is unbelievably adorable. She has always been so petite and now she waddles around with little chubby cheeks that you just want to pinch.

She still talks constantly, now it just sounds like she is talking through a mouth full of peanut butter about nothing but food. Kristen now sleeps with her almost every night to dissuade outroars that typically get Cooper going. Cooper has taken to demanding to sleep with me or not sleep at all. I fight him for an hour or so and then eventually concede defeat. Monday night it wasn't even good enough to be sleeping in our bed, but he wanted to lay a certain way. We had a little stand-off before he eventually fell back a sleep.

I feel that I'm slowly losing control of it all. But in recent times, my 18 month old boy just wanting to snuggle is a welcome affection. So, I give in and I hold him extra tight. ViviAnne usually rolls over at 2am and 4am and says "How 'bout a schammich (sandwich)?" We are like, "What? No. How 'bout sleepy." We try to console her with diversionary tactics. I told her one night "Let's talk about the zoo and get our minds off of it." Her response was, "I like the zoo, but want my mind on getting some cheese." You can't help but just laugh at that, regardless of what time it is. But Mommy usually gets up, makes a small snack and they head back to bed.

Tuesday night was especially hard because she was NPO (not allowed to eat) from midnight on, due to Wednesday's procedures (see below post). This, to me, was a sadistic form of torture; pumping a child full of drugs that make her feel as though she is starving and then not allowing her to eat for 12 hours. It was like trying to hold water in your hand. It went all night, into the morning , and through the first three clinic stops we made before her bone marrow test.

After she woke up from the anesthesia , she looked up, then asked Kristen again ,"How are you?" I think this sentiment that I mentioned before has become what Kristen looks forward to after each procedure. She then immediately asked for mac&cheese. I ran like hell through the hospital corridors looking for the food cart. I found it. By the time I returned, holding the mac&cheese high like the Olympic torch, she was already face first into a full helping of it. So she ate both.