Saturday, January 20, 2007


All the cool kids are moving their blogs or password protecting them or closing down altogether. Some have stopped posting with no warning, and I'm afraid they're dead.

I've been debating doing along the same lines, and finally got my shit together to do it.

Blogger has been great for me, but I need some features the new version still doesn't have, namely, the ability to password-protect individual posts.

Peanut is getting big enough now that's it is time to be a bit more cautious with details. And frankly, I am tired of watching my referrer logs go from the first page to the page that describes her physical anomalies and then go off somewhere else, child-freak curiousity satisfied. I am more than happy to discuss details with people who know her personally, who have a disabled child themselves, or have shown themselves to be respectful and kind and truly interested, which means most everyone who has commented or subscribed to the feed.

So, if you would like to follow us, please visit Maybe, just maybe, I'll even use her real name in a protected post...

There are some posts here I'll be taking down soon, that will reappear as protected ones as soon as I figure out how to do it.

Monday, January 15, 2007

Like Mother, Like Freak

If Peanut had her way, we would be putting the house on the market right now in order to move to Philadelphia so that Big Daddy and I could get jobs at museums so that she could spend every day in them.

We didn't get to see as much of the city as I had hoped, but we still got to the important stuff.

First up was the Mütter Museum, with Uncle Carlos. Before the emphasis on biochemistry in medicine, medical students were primarily taught gross anatomy, and most medical colleges had a collection of this kind. Using wax models, drawings, and real samples, students were taught medicine. Collections of skulls of people from all over the world (used at the time to study ethnic differences, among other things), a wax model of the arm of someone with leprosy, the tracing of the hand of a man with acromegaly. This sort of thing has always fascinated me, even more so now that I have a child who would have been the subject of a museum exhibit 150 years ago. We took Peanut, because, well, she likes that sort of thing too. She was proudly pointing out the lungs and heart on a drawing of body organs, and exclaimed at one point, "Let's go see the skeletons!" I was able to explain immunizations to her with a little more interest on her part when she could see not only old newspaper cartoons of Dr. Jenner scratching a baby's arm, but more recent pictures of smallpox victims.

She'll either grow up to be a doctor or a serial killer.

Even the most ghoulish of toddlers can only take so much of the cramped, crowded quarters of the Mütter (it was insanely busy--who knew so many people were freaks like us?), so Big Daddy rescued her and took her to the Please Touch Museum, where she would happily live for all eternity. If I could, I would let her. This was so much more accessible to her than the children's museum in Madison, and she had a ball. It had a ramp up to the second floor, and ramps into some of the exhibits, for example. The place has a full child-sized supermarket, including deli, pastry case, stockroom, and coffee break area, for crying out loud. She spent four hours there, and would have played until she fell asleep with her head on the train table.

I tried to get a cheesesteak, I really did, but Big Daddy had a college friend from Philly who insisted you could only get the good ones at certain places and Big Daddy didn't know where those places were, so he wouldn't cooperate. I found this irritating because we could have found out where to go before we left if I would have known he was going to be a cheesesteak snob, but oh well. Instead I ate pizza twice and a breakfast sandwich once, so I got my grease allotment in anyway.

From what I saw of it, I like Philly quite a bit. I wish we had a reason to visit it again and explore a bit more.

Friday, January 12, 2007

Worth The Trip


We spent six hours at the hospital.

The doctor doesn't think she needs hip surgery at this time. Maybe later, so we'll have to keep an eye on it. She might also need surgery later to realign one of her kneecaps, which was pulled off-center by the contractures.

They took off the top half of her KAFOs to make them temporary AFOs.

They said that with the lighter bracing, she'll be walking independently in a matter of months.

I know better than to get my hopes up too high at that idea, but I really want to. It does help us decide which preschool to put her in (it is slightly less accessible than we would like, but better academically).

What I found most amazing is that even in a hospital full of children, she was continually singled out for praise and "how cute she is!" comments. And how she completely ignores it all.

Thursday, January 11, 2007

Love Is

... picking off all the pieces of shredded basil from your toddler's slice of margherita pizza while yours gets cold, because she decided she "didn't like the green stuff."

We are ensconced in our lovely hotel in downtown Philly with free wireless internet. I will get through tomorrow because Saturday, we will be going to this museum, as well as this one. Plus, there's cheesesteaks, and apparently people think they're pretty good to eat.

Well, Big Daddy won't be going to the latter one. Uncle Carlos and I will be. And I'd like to take Peanut, because she thinks that stuff is neat (she is not the slightest bit scared of skeletons), and I think it's a nice reminder to those who are going there to look at the freaks that these were all people once too. We'll see how tired she is after the kid's place.

And a random observation: she's getting much more used to people staring at her. It doesn't make her stop dead in her tracks anymore, though I do miss the dead-eye stare she gave the particularly rude ones.

Oh, I didn't even tell you about the whole debacle with Peanut's medical records. I'm too sleepy now, but it ends well with the hospital having the appropriate records, after a crazy amount of phone calls and pleading and running around that ended up not being necessary. Made getting ready just that much more stressful.

I'm babbling. Thanks for the good wishes. I'll let you know what is said tomorrow.

Off To See The Wizard ... Of Wilmington, DE

We're leaving today for DuPont Hospital. We'll spend most of the day tomorrow at the hospital, where Peanut will see the orthopedic surgeon, a physical therapist, and an occupational therapist. They know what her issues are and are looking forward to seeing her, according to the PT.

We just need to keep our fingers crossed that the doctor says, "Surgery? She don't need no stinkin' surgery!"

Maybe not that exactly. I hate double negatives.

On Saturday, my friend Carlos (he's the coffee cup icon in that link) will come down to Philly to meet us, and we will go see museums.

Anyway, have a nice weekend.