Monday, Monday

The nutritionist who I met this morning dropped off literature on the new food that they are going be administering to Sylvie through her feeding tube. Exciting, I know, but I had to lobby hard for this small victory. Supposedly Compleat Pediatric is a real-food alternative to the non-food (???) Nutren which she's been getting for the past week. Both are Nestle products. I almost choked when I read the print-outs.

COMPLEAT PEDIATRIC: NUTRITIONALLY COMPLETE, BLENDERIZED TUBE FEEDING FORMULA FOR CHILDREN
Blenderized? I could really vomit. The base is chicken, cranberry juice, peas but essentially it's full of fillers, preservatives and crap that literally, my dog doesn't eat. Corn syrup solids, chicken puree with natural flavors, preservatives galore like BHA/BHT. I'm really not kidding when I say that Lucky's food is better. I made Michael read it and he gave me a "Please don't say anything to the doctors" kind of look. It's not like there's a better alternative. This IS the best alternative. It's not like I can boil organic chicken, kale, squash, lentils, brown rice and pulverize it with some flax and ask them to give to Sylvie. They would have me arrested or Michael would have me committed. This whole experience continues to present new challenges every single day!

Needless to say, I am ecstatic that we are moving to getting Sylvie back onto real food although being a chemo day, I had my doubts that she'd eat anything today. I even had my secret weapon here: Sibel. Since Sylvie will eat much more with Sibel than me. Around lunchtime, I fixed her a plate of avocado, cottage cheese, challah (thanks Sara!!) and ordered up some chicken fingers, fries, chicken noodle soup, chocolate peanut butter protein shake and vanilla pudding.

TOTAL FOOD CONSUMED: two teeny Sleeping Beauty spoonfuls of avocado. I feel horrible about the food going to waste; consider having Michael bring it home for Lucky. On the other hand, I've become addicted to Kozy Shack vanilla pudding. It's a far cry from Jen's creme brulee or mini-cheesecakes from Whole Foods (again thank you Jen), but works in a pinch.

They still don't know what's causing Sylvie's fever. I hope we get it under control tomorrow and that it doesn't delay our Sunday departure. I might need to cut Sylvie's hair myself tomorrow-- something ordinarily I would never try at home! Siobhan from Child Life told me to go Pixie and not Buzz in the event that Sylvie doesn't lose all her hair. That would kind of suck. My mom asked Michael if he was going to get a buzz cut too :-). Picture that if you will.

Cindy told me this story last week while we ate the rest of Laura's famous chili in styrofoam cups in the kitchen. She learned it in Sunday school:

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PROVERB:
One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there was one only.
This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints, so I said to the Lord,
“You promised me Lord,
that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there has only been one set of footprints in the sand. Why, when I needed you most, have you not been there for me?”
The Lord replied, “The years when you have seen only one set of footprints, my child, is when I carried you.”