Avocado

Did you know that the average avocado is about 300 calories? Well Roxanne ate HALF of one in one sitting! Whoooot! That there's good eatin'!

Fun with pudding

As mentioned earlier, the handprint is a work of art.

More food camp

Greetings from week two of food camp. Roxanne is progressing well. We've reduced her tube feedings by 30%, and she's eating more enthusiastically at each meal. Polly (her feeding therapist) says that Roxanne's looking more like a typical one-year-old eater each day. If only Roxanne were supplementing her solid food with a couple of 8 ounce bottles of milk per day, then we'd be much further along, but she's not very hip on drinking anything yet, so we're dependent on her tube to give her formula.

Since this is my blog, let's talk about me for a moment. The logistics of these trips has been ridiculous. Parents: think about all the stuff your toddler needs every day. Bottles, formula, toys, clothes, diapers, crib, blankets, that special stuffed animal (in Roxanne's case, a pink monkey named, appropriately, Pink Monkey). Now imagine packing all that stuff, and add a food pump, the other equipment that goes along with it, and medicine.

But wait, it gets better! While I'm only a couple of miles away from the rehab hospital, Roxanne's schedule is so busy, it's impractical to come back here during the day, so I have to bring all the stuff she (and I) need for the whole day. I suspect I could beg an extra diaper if I needed one, but if I forget her formula or feeding pump, we're back in the car. So I have to be organized. In the MORNING, people. Those who know me know this is an unfortunate situation.

What's worse, is I'm not sleeping too well. I know some parents sleep with their kids in the same room, or even in the same bed. More power to them. But we don't, and for good reason: Roxanne is noisy at night. I've heard her snore once, but more often she makes little whiney sounds in her sleep that keep me awake. Did I mention there's also a train that passes by our hotel at regular intervals? Oops, one just went by. Really. And what's with people slamming their doors in hotels? Don't they know there's a baby sleeping? Sheesh.

Here's the other awkward thing about sharing a room with Roxanne. She goes to bed at 7pm. I have to be very quiet in a nearly dark room for about 3 hours a night. Thank God I have a laptop with an internet connection and a DVD player. After I check emails, I've been watching season one of The Gilmore Girls, loaned to me by MZ. Who knew the dialogue was so witty and acerbic?

I sound pretty crabby, but actually, I'm doing better this week than last. I've got the rhythm of the days. Roxanne is happy and healthy and eating better than ever. As my friend, MS, said, food camp is pretty "grueling" (get it?), but it's all very much worth it. I have an awesome photo of Roxanne with pudding on her face in the shape of her hand. We couldn't have missed that!

We'll be back on Friday night. I can't wait to see everyone.

What's up, part 2?

She's up.

Food camp

Greetings from food camp! Sorry it's taken a while to write, but our schedule is very full, so by the time we get back to the hotel I'm fried.

Roxanne has feeding therapy four times a day with Polly Tarbell, the guru of the whole program. Polly has being helping kids learn to eat for over 15 years, and really knows her stuff. Roxanne is lucky enough to be getting one-on-one therapy with Polly herself -- I was expecting an assistant to step in occasionally.

The idea is that most kids start getting exposure to non-liquid food around 6 or 8 months old. They're curious about what mom and dad are eating, and they squish it and taste it, and are introduced to lots of foods while they still get almost of their nutrition from formula or milk. Then kids start getting baby food, and move forward from there. Roxanne missed all that, so while we're slowly reducing her tube feedings, Polly is rapidly introducing Roxanne to lots of different kinds of foods, (often four or five different things), four times a day, every day this week.

I know enough about feeding training to know that there's no magic involved, and that Roxanne won't suddenly start eating all her meals orally. But over this week, she has been showing less resistence to eating, and more self-motivation in picking up food and putting it in her mouth. However, the progress is slow, so Roxanne and I will be coming back to UVA next week to keep up the good work. By the way, I feel very lucky we ended up here as opposed to other feeding programs, many of which force feed kids until they break down and stop resisting. That's GOTTA mess with their minds.

Our schedule goes something like this:

Feeding training
Tube feeding
Recreation therapy (guided play with cool toys)
Nap
Feeding training
Tube feeding
Break (she likes to go for walks or swing)
Feeding training
Preschool (a teacher reads to her, she plays with educational toys)
Feeding training
Tube feeding
Nap

After that, I'm done for the day (around 4pm), but I still need to do feeding training at dinner, and give Roxanne another tube feeding (they have broken them up into more, smaller, feedings.)

I'm nervous about going home for the weekend, where we won't have Polly to guide the feedings. I'm concerned we're going to lose the momentum we started here. But I've been watching and asking a lot of questions, and hopefully, I've picked up on some of Polly's techniques to encourage Roxanne to eat. Wish us luck.

What's up?

Tomorrow we're going to the UVA feeding program. Food camp, whoooo!

Literature and viruses

Everybody in my house has a cold. Dan has it the worst, with the terrible congestion and feeling like he’s been hit by a bus. My cold is on its last legs, so I’m just tired. Roxanne is somewhere in the middle, and had one heck of a rough night last Friday.

On Friday night, Dan and I put Roxanne to bed, and I went to Fencergal’s house for a book-swap party. All the attendees were avid readers and female, and we each brought at least one book to swap. Fencergal had a yummy array of hors devours and lots of drinks, and after the group socialized for awhile, we gathered for the main event. We each briefly described the books we brought, then drew numbers to see who would pick first from the batch o’ books. I took notes to help me remember which I wanted -- there were about 40 books on the table, and I didn’t want to linger too long on my turn. The group had two rounds of drawing numbers and picking books, then broke for more refreshments and chat. (There were 3 other moms there with kids around one year old, including my dear friend L.P. What a surprise!)

As we returned for round 3, my phone rang. I answered to hear a miserable-sounding Dan with Roxanne wailing in the background. After telling Dan where to find the baby Tylenol, I rushed home right away. Roxanne was congested, uncomfortable, and angry about the whole thing. I can relate. Dan was sick, too, so I was up with Roxanne till about 2:00am, when she finally fell asleep (mostly). The good news is she’s getting better, and I expect she’ll be back to herself soon.


Here she is, pre-cold, post-bath:

Catching up - mostly Renfaire

I don’t know what was in the air a few weekends a go on August 18th, but I was invited to no fewer than four social events. I made it to two: the independent interpreters meeting, and S.H.’s birthday dinner. Happy 30th, baby!

Remember how hot it was on the weekend of August 25/26? Upper 90s with a heat index of 106? Well, that was the weekend I sang with the Revels group at the Maryland Renaissance Faire. Hanging out in the heat in shorts and a t shirt is tolerable, but in costume? Wow. Bad. Luckily, we didn’t have to change into our garb until just before we performed, and we only had one show each day. (I don't have a photo of me in costume. It was just too hot.)

I’ve been going to Renfaires in Arizona, and now Maryland, for years, and the whole scene is an amazing sociological experience. I participated in the Society for Creative Anachronism when I was in high school and college, plus I’ve been in theater for a very long time, so I’m used to seeing people in costume. The performers at the Renfaire wear Renaissance-ish clothes, as do many of the attendees. Check. But where it gets wacky is that many people who come to the faire dress in other kinds of costume: pirate, angel/devil, leather/studs/tattoos, body paint, etc. It seems that the Renfaire is an open invitation to let your freak flag fly. Not that I mind -- watching the crowd is a big part of the entertainment at the faire. I don’t quite get the intersection of leather and tattoos and giant turkey legs, but I’m rolling with it.

The "backstage" area of the Renfaire was equally fascinating. There are several stages at the faire, so I saw the backs of those, with people entering and exiting, like in a theater. Plus, I saw several of my favorite performers from previous years (Bob and O, to name a few), hanging out and chatting in that offstage kind of way. I heard an amazing Renaissance band, Slaveya, practicing backstage, and enjoyed them enough to see their show later. I even talked with my ex-husband, who performs at the faire. Finally, I had the opportunity to give FlirtaciousJ a birthday hug on Sunday. You just never know who you'll see.

I digress. At the Renfaire, I sang with a group of about 15 people from the Washington Revels, and had a great time. I haven’t been in a show or choir since Roxanne was born, so this was a real boost for my creative life, which has been flagging. It was cool to be in such a small, new group, where we could each have input. The meat of the show was a mummer’s play, St. George and the Dragon. Somehow, I became kind of the “bit girl,” for lack of a better term. I didn’t have any lines, but I did little amusing schtick and/or held up signs for audience response. Fun! Now I really want to be in the Revels’ Christmas show. I didn’t audition this year, but I have my eye on next year.