Archive for April, 2013

Soccer and Fires and Such

Saturday, April 20th, 2013

Maria’s soccer team played against Re├íl Phoenix, a semi-pro team, a couple of weeks ago. It was a pretty good game. I thought the guys did a good job of bringing their game down enough to make the kids work a little but not so much it was condescending. Since they had amazing skills they were always able to put the ball wherever they wanted and control the flow of the game. Maria didn’t play though. We just sat on the sidelines and cheered on the others.

Maria isn’t the only wheelchair kid in soccer anymore. In the last two weeks two more kids in wheelchairs joined the team. I met the first and his parents seemed to enjoy it so I think he’ll be coming back. I don’t know about the second since I didn’t meet him/her.

Speaking of wheelchairs, Cathy was at Maria’s school a few weeks back and they happened to have a fire drill. They took Maria down in the elevator! Cathy said, “Um, I’m pretty sure you’re not supposed to do that,” but they said they weren’t sure what else to do. What, is Maria the first kid in a wheelchair in that school? There are ways to evacuate people in wheelchairs safely down stairs. Cathy’s bugging the school to figure it out and they are being…well not exactly resistant but not exactly cooperative. I just read a story from February about a school in NY where a girl with CP who was in a wheelchair was left behind on the third floor during a real fire, and nobody thought to tell the fire crews where she was! She’s fine but people are a teensy bit upset about it.

Meanwhile we continue to try to figure out what Maria’s whining is about. She doesn’t do it all the time but when she does it’s quite heart-wrenching. The orthopedic surgeon did x-rays and confirmed there are no fractures. The neurologist–well the physician assistant anyhow since the doctor didn’t have an appointment available for months–said it’s not a seizure. The general consensus is it’s probably a muscle spasm of some kind but we really can’t figure it out. I do think certain positions are worse but since we can’t just ask her where it hurts, it’s hard to say. There are other doctor appointments coming up I believe but I imagine that’s going to be more of “the tests don’t show anything so we don’t know what it is”.

Maria’s Latest Mystery to Solve

Thursday, April 4th, 2013

Maria has been awake and keeping us up frequently the past couple months yelling or crying, and in obvious distress. If you know Maria, you know how strange this is. Any thoughts on what it might be? We ruled out a fracture. We’re wondering about seizure, reflux, lung something, night terrors, shunt problem, headache, muscle spasms, or something else. So now the doc appointments start. That’s why I’ve Ben putting this off, but at least I have a video now to show… It’s a 45-second video and it’s too big to upload to this site. Trying to figure out where to post it so I can send the link to Maria’s docs. Hmmm

Ok, try this link to see the video: Maria’s Latest Mystery