Senin, 11 Februari 2013

A Monday night update

Dear Scarlett,
Last week, Dad and I took a quick trip to Naples, Florida to see a "renegade neurologist" who has some new and exciting ideas about ALS. I am now taking some additional medication and am on a crazy sounding version of a ketogenic diet. I have an appointment with a dietician tomorrow, after which I will explain more about that last part. The idea is that you are burning fat to use as energy, and we have now reached the end of my ketogenic knowledge. But it was a good appointment and we got to see Grandma and Grandpa for a day.

You stayed in San Francisco with Nonnie and Pops, and I confess that I missed you intensely. I used to travel a bit for work, but it's been a long time since I've spent multiple nights this far away from you. We talked every day, and the thing that struck me most was how you sounded like such a big girl on the phone. You told us stories, made demands, and burst into giggles at your own jokes. You make a lot of jokes lately, and most of them are of the "Daddy pooped on his face!" variety. Lest there be any confusion, Daddy has never pooped on his face.

Almost immediately after our plane landed in San Francisco, my phone rang. It was Aunt Liz telling me that you had swallowed a marble. She said that you were sort of pretending to eat it and holding it really close to your mouth, and when she tried to get it from you, it shot straight down your throat. You both stared at each other for a moment in surprise and horror. "Did that go down?" she asked. You nodded.

Liz called 911 and learned that this is actually quite common and that we were to watch for the marble on the other end. Today we found it. This involved wooden skewers and a lot of soap afterwards. Let's just...no more on that.

We've been house hunting again, which is sort of fun and sort of horrible. The good news is that we've seen some things that we've liked, so I'm sure it's just a matter of time before we make the move. I'll be sad to leave this house, the only one you've ever lived in. But it's really time to get away from the stairs. They're becoming more and more challenging for me. Other than that, I'm feeling ok, and I'm optimistic about all of the things we learned and will learn from the folks in Florida.

I wish that I wrote down more of the things that you say. Dad comes home and I realize I've already forgotten half of the funny things that happened. For some reason, you were fascinated by the fact that I had a t-shirt on today. I guess I don't wear them that much. You told me I couldn't wear a t-shirt if I wasn't at a baseball game. These rules of yours are interesting. This afternoon you asked me if I was feeling "very tormented."

"Tormented," I said, just to clarify, as I have never heard you use that word, and don't think it's in high rotation at our house. "Where did you learn that word?"

"It's in Bad, Bad, Bad Kitty!" you cackled. This is a book you read months ago, and for the record I think there's only one Bad.

Every night before bed, you ask for stories, in addition to books and songs. Bedtime takes a little longer, but is still a fairly easy routine. Your favorite stories are about Baby Scout and her adventures, like flying to Hawaii and trying ice cream for the first time. Mommy bedtime songs are "5 Balloons", "Sing Roo" and "When You're Tired and Cranky." Daddy bedtime songs are "Raindrops", "Fix You," and "We are Going to Be Friends."

As always, there's more to say, but I'll end here. I'm pretty sure my dietician is going to tell me that wine is not on the menu, so I have a bottle to finish. Ignorance is bliss.

I love you,
Mom








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