Early June

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E. is doing pretty well. She has good days (and I guess I’m defining a good day as when she gets enough calories and doesn’t throw up) and occasional hard days. A hard day is when we work for too many hours to get the food in her and then all of the sudden, we are wearing it.

It’s been doctor doctor doctor visits for the past two weeks and I’ll tell you, I’m running a campaign around this house and it’s called Take Back Our Child. Enough with six medical appointments a week. It’s not healthy.

Now that E. is stable, I’m reigning it in.

I don’t care what you think, genetic counselors, but we’ll see you in the fall. I’m not coming in there just to check in, because we’ve checked in with the neurologist and the feeding clinic and PT and OT and the other PT (in home) and the gastroenterologist and the pediatrician and the surgeon for a follow up. In the last two weeks.

I’m cutting appointments because I want us to get to do things that most people with babies do. Like go to the beach and the zoo. I want us to have a life that is not florescent lighting and a weight check and someone else’s opinion that really, isn’t always helpful. I want to take my smiley, sweet baby places that she will actually enjoy. Because she hasn’t been to the park since she was a newborn.

My dear friend Mel and I took E. out for some fancy ice cream yesterday at Sebastian Joe’s. Although she didn’t want to taste any of the super chocolatey malt that I got for her and A. (which is actually a crime in three states) she was so happy to be there with us. She was kicking her feet and looking all around and vigorously reaching out for this guys shirt in line next to us. Apparently she’s really into fashion all of the sudden or just has a new thing for coral pink. And it felt so good to be there with E. and Melly, who I’ve known and loved since we were in college and used to make macaroni and cheese together with cut up tofu hot dogs. Sometimes when E. and I get out for something fun, it’s sort of disturbing how elated I become.

Last night Cedar and I got a sitter and went out after bedtime to a party with some new friends of ours from A.’s school. I got to dance in Joanna’s living room, and as you may already know, house party dancing is my favorite, favorite thing to do. It’s been so long since we’ve been to any kind of party without our kiddos. The whole ride home I just kept saying, “Cedar, I just love dancing.” And he was like, “I know, honey.” He was laughing because I just could not stop gushing about it and no, I really hadn’t been drinking very much at all. It’s true that I get that pumped up about this stuff. I’m normally pretty effusive but also, right now every feeling is heightened because of how little we get out of the house.

I think it’s time to change that. I’ve got to figure out a way to get out more. I don’t think of myself as the kind of person who gives up too much of myself, but right now, I’m there. So that’s a goal for the summer: less intensive parenting, more free flowing fun. The whole tube thing makes getting out pretty complicated, since not many people are comfortable with administering it. So this is all a work in progress.

The other thing I’ve been thinking about is this: I want to come up with a name for E.’s diagnosis that’s awesome and optimistic. Because it really doesn’t have a name yet, so why shouldn’t we give it a good one? Like Rare Party Deletion (RPD). But not exactly that, because that sounds like she’s suffering from something contracted during an after-school special. A genetic deletion on the Q arm of the 12th chromosome just isn’t doing it for me. So, I’m open to your ideas. Let’s name this thing something funky/fresh.

Ps. The picture is from another great, out of the house adventure in which we packed up the feeding tube and a cheese plate and got to hang with lovely old friends who always make us feel like we are on vacation. So, yes, there’s been some really joyful moments lately, too.

Joy and worry; I’ve generally got those things covered.

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