Bad Mama

December 14, 2008, 11:01 am
Filed under: Disability, Peanut, Uncategorized


This last week has been pretty eventful for Peanut.

On Wednesday, she and I got on a plane and flew to Philadelphia, for a visit down to Wilmington to A.I.  Dupont-Nemours Children’s Hospital and their arthrogyrposis clinic. First, however, we took a train in to New York City to visit with Uncle Carlos*. Our timing was pretty bad, though, as it was pouring rain and cold, so we didn’t get to do as much as we wanted to do.

We started out at the American Museum of Natural History, so she could see the dinosaurs. After seeing how big the barosaurus and allosaurus was in real life, she was not so keen on seeing more. So we wandered around looking at the animal dioramas, with a brief detour into the Eastern Woodlands Indians room. Then she was getting tired, so we hit up the gift shop. There she fell, cracking her elbow on the marble floor. It seemed fine, if sore, so we pressed on into the rain to Rockefeller Center, to see the Big Tree. She really enjoyed seeing all the giant ornaments and nutcrackers decorating the buildings nearby.

It was raining and gusting wind, so that was about all we were going to do. We walked over to Times Square (it makes reading “A Cricket in Times Square” more interesting for her now) to show her all the lights, and saw the Charmin public bathrooms, Carlos and I wondering  just how hard-up we would have to be in order to take a job dressing up as a giant roll of toilet paper and standing in the rain outside a bathroom. Then we took the subway back to the train station. Peanut talked to a nice young woman we sat next to pretty much non-stop all the way back to the station, and we went home.

The next morning was the Please Touch Museum. We didn’t get as much time there as we wanted, partly because of morning pokey-ness and partly because of poor signage and interstate road on-ramp accidents (not us, thank goodness). We did get to see  a whole lot of downtown Philadelphia, though. She was ecstatic to play in the Alice in Wonderland exhibit, and rode the carousel. Then we drove to the appointment.

One of the reasons we decided to go back to the clinic is because she needs new braces, and are not and have not been happy with the braces she has gotten here. Her doctor is very good, but somehow there seems to be communication problems between him and all the allied professionals, and nobody has ever been able to get braces made that do what they need to do or that anyone was satisfied with. So I decided that we were done dicking around and we were going to see the doctors and have them made there.

The other concern is related to the braces, and it involves her right foot, the one that was clubbed and has been operated on. Her foot is “collapsing”, the talus bone moving far out of place and her ankle rolling in. Her doctor here told us as long as it was able to be braced that he wasn’t concerned about it. But it seemed to be getting worse, and that answer just wasn’t good enough for me.

They took x-rays of her feet and an ultrasound of her knees. Her kneecaps are all right, not placed exactly where they should be but close enough. The foot x-rays showed the foot collapse, and the team was very concerned about it. They felt that without proper bracing she would need another surgery, and may need one anyway. I said we’d been told she probably would anyway, and there was a pause before they said, “well, that was usually the case.” It turns out that proper bracing in these kids can prevent the need for more surgery. And she hasn’t had proper braces.

They were kind of surprised when I said, “you make them, and we’ll come back for them”, but I didn’t know what else to do. They don’t seem to understand what she needs here. Her PT here says they are so used to seeing kids with cerebral palsy, which causes some similar issues but is NOT the same and can’t be treated the same way, so it is hard for them to switch gears. Regardless, she was casted and picked out the new colors for her braces. They will be very different than what she has now, in good and bad ways. They’ll be lighter, which is good, but they’ll have less flexibility, which is good for her bones but bad for her independence. I will be okay with it because, as one of the team explained, it will mean the difference between wearing a brace on that leg her entire life and perhaps not needing it after she is done growing. Pretty easy choice, in my mind. She also got a new hand splint to go on her left hand and help stretch out the finger that is pinned down to her palm. She will only have to wear it at night.

Oh, and one last thing. Remember the fall she took? Yeah, she was still sore when she woke up, and didn’t want to straighten out her arm nor turn her hand palm-up. How convenient we were going to be seeing orthopedists that day! A couple of x-rays later, and she is sporting a bright pink splint on her right arm. They suspect a break, but couldn’t see one, so she needs to keep it still for a week or so. Poor kid, shuffling around with braces on both legs and a big plaster splint on one arm. Let me tell you how much fun it was getting around the airports and planes on the way home with a too-small stroller and a kid unable to use one hand or climb stairs.

Peanut is a very good traveler, and was good pretty much the whole time, falling apart really only on the way home. The next time will be only a trip to Wilmington and back, which will hopefully be much cheaper and way, way less rainy.

*Carlos is not really her uncle, but one of my oldest and dearest friends. I was visiting him when I met Big Daddy, so without him there wouldn’t be a Peanut.


5 Comments so far
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Vince was in NYC last week…..I don’t think he knew you were there, or he would have caught up with you! He did come back saying it was way too rainy and nasty there.

He thought it was funny that it snowed down here in Houston while he was up in NYC with just cold rain.

Comment by Jen

Well, I’m sure the weather was a pain and poor kid, injuring her arm — but I’m glad you got to have a big-city adventure together. That part sounds like some great mommy and me time for her. I hope this new clinic and their staff hook Peanut up with braces that do indeed help her be more independently mobile in the long run.

Comment by elizasmom

They are so fucking good at everything at duPont, it is unbelieveable, honestly. Did you see Bowen? I love Bowen & his whole Colonel Saunders affect.

I hate to be all shallow, but I am, so whatever; she is so beautiful it takes my breath away sometimes.

Comment by michelle

Is it wrong that I covet Peanut’s hair? I wish mine looked just like hers. That was quite a trip you two had – glad you got to enjoy some city life together and here is hoping you finally get the proper braces!

Comment by Meredith

Peanut is a cutie!

I have never been to New York City. It’s one of the places I’d love to visit. The museum with dinosaurs sounds cool (minus the elbow injury).

Comment by NaeNae

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