I’m afraid there’s not much new to report with Tiptoe; she continues draining between 200-300 cc per day.
Our surgeon, Dr. Jonas, visited her today, and said she needs to eat more; to feed her as much non-salty junk food as she will eat. How often does a kid get to hear that? Our kids, not that often. But the problem is that Tiptoe has ALWAYS been a poor eater. Even when she was at her very best, she didn’t eat a whole lot. And she’s unpredictable in the kinds of foods she likes, too. One day, she’ll scarf down chicken nuggets like there’s no tomorrow; the next, she won’t have anything to do with them. Ditto snacks like candy, ice cream, chocolate, chips, etc.
Tomorrow, I’m going to the grocery store near my work to buy little cups of ice cream, hot dogs, string cheese, crackers, spreadable/spray cheez, grapes, etc., all in an attempt to get this girl some calories. I’m making a big batch of tortellini (which is one of the foods she will eat consistently) to bring with me.
You know what the problem with being at home is? You can’t do ANYTHING. At the hospital, you at least have the illusion that you’re doing something every moment to add to her recovery, and help her get home. Even though you’re usually at wits end trying to entertain a child that is one dropped toy away from a complete breakdown, you are engaged in the work. You are there, with her, and you can put you fingers on her, and touch her, and talk to her, and maybe convince yourself that you are at least being an active part of her life. You can give her her medicine. You can play with her. It’s boring as all get out, honestly, but I miss it when I’m not there. I miss it terribly. So even though I’m not looking forward to spending more time in the hospital, I want to be there. I want to get my hands dirty, as it were.
Of course, it’s not as futile as all that. It just feels like it sometimes. Then other times…well. Tiptoe let me hold her for the first time since her surgery on Sunday. Really hold her—I got to scoop her up in my arms, and hold her horizontal across my chest, so her head was in the crook of one elbow, and her legs dangled over the crook of the other. It felt good. Really good. It felt like I was doing something worthwhile after all. It was the redemption of a weekend that had been otherwise, very, very frustrating.
That’s what I’m going to keep in mind as I bear this out. I hope she lets me hold her again.