Small Victories

I was a little elated. A little jump for joy. Looking forward to sharing my new adventure in making balanced organic food for Sylvie's feeding tube which I hope is only for a few more days anyway.

But as I was waiting for the not-so-fast Wi-Fi connection, Nurse Jessica took Sylvie's temperature and it's 102. I may be trying to find my spiritual center with a firm base of kindness and understanding but nowhere have I read that cursing is forbidden. So here's to a giant FUCK. When are we going to be able to leave the hospital? I may not have mentioned that when Sylvie has a temperature, she cannot leave the hospital room.

Dr. Rosen came by this morning for a visit. I was so thrilled to see him and review the past week. He laughed at the Coca-Cola/Hershey's Syrup/Food debacles of the past few days and promised to look into a solution.

So I'm staring at a plate of french fries and grilled cheese with a peach yogurt smoothie on my LEFT and to my RIGHT is a giant syringe of feeding tube slop. I do not think Sylvie will take so much as a bite out of her lunch and must acquiesce to the latter. I was pretty excited when the nutritionist came to talk to me today and explain that they knew I'd hem and haw at the 'dog food' food supplement but that it's really the best packaged stuff available. In addition, she said that I wanted to make my own concoction, that I could do so. I'm not sure I could get the calories high enough but cooked/pureed/strained turkey, squash, lentils, rice, kale, blueberries, avocado, olive oil, and something in the dairy family (sorry, not Kosher!) is going on the menu.

Sylvie looks like a little drama queen in a big big bed. On hand backwards across her forehead as if to say, "I feel faint!" She was actually pretty nice to the nurses today even when they fixed up the port that had been inactive since Saturday's bleeding incident. We stood up, walked a little, did PT. Made princess sticker pictures from the princess book that Patrick picked out :-).

At 7 tonight, Ricky from Cozy's Cuts for Kids in Ridgewood is coming to cut Sylvie's hair. Yeay! Very excited. Thank you Mrs. Rickert for hooking it up. I'm sure Ricky doesn't remember us from last month but as soon as he sees Sylvie, he might have a flashback of Sylvie having a tantrum while her BFF Sammy looked on like a little beauty queen.

As for this fever, they really can't identify the cause but since Sylvie's blood counts are so low, they have to treat this very seriously. The nurse does not think this will result in another week's stay but perhaps an additional day or two. However, because Sylvie had a staph infection, there is always a risk of it returning.

Right now Siobahn from Tomorrow's Child/ Child Life is playing with Sylvie. She brought pink, purple & blue Play-Doh and a 'fun factory' set of toys. Sylvie is in heaven and I'm glad she's allowing someone new to befriend her. Small victories. One day at a time.