Maria Rose

The big news is that Sue is back after being gone for six weeks taking care of her dying mother. She and Maria missed each other terribly and everyone is happy that she is back. She still has to have her surgery but first she’s going to take a couple of weeks to get used to being back and to get lots of Maria time.

The other big news is that I finally got around to posting all the videos we’ve been taking over the last year or so. Most of them are pretty old so show Maria at a lower level of ability than she is at now.

I had to be a little obscure about the “#2″ video because a more explicit name would attract, well, people looking for those kinds of videos. But now people who haven’t heard Maria’s unique little noise can do so.

Maria had a busy day today. She went to Shriners, to the gastroenterologist & nutritionist, and had her usual speech therapy.

At Shriners we finally met the guy who contacted Cathy about the stander after that article. He said he was “spittin’ mad” after reading about her and was glad he was able to help. He told everyone she was the girl from the newspaper.

The doctor said her hips looked better than they did in December. Her only slight concern was how tight Maria’s hip flexors are, which are the muscles that lift the leg. She gave us a simple stretching exercise to help with that. She of course also encouraged as much standing and walking as possible.

The GI and nutritionist didn’t have much to say. The neurodevelopmental specialist had suggested we go to the nutritionist to see if we needed to add anything to her diet. The nutritionist was kind of perplexed why we were there. Maria’s diet is so absurdly good that she couldn’t think of anything to tell us. It was a wasted visit, but we like those. Maria’s weight was over 33 pounds.

It wouldn’t be Maria if we didn’t get a new diagnosis to worry about. The Shriners doctor noted that her beautiful hair, bushy eyebrows, long eyelashes, small hands and feet are all symptomatic of a genetic condition called Cornelia de Lange Syndrome. She mentioned that we might want to get a genetic screening, then dismissed it as unimportant.

For laughs I looked it up, and it’s not really that unimportant. The symptoms fit Maria really well and the complications include heart and kidney problems.

It’s not something we are obsessing about but we’ll mention it the next time we see the pediatrician. A genetic screen wouldn’t hurt.

Maria had another of her respiratory episodes. She got all congested, her fever spiked to 104.7, and everyone got very worried. However the fever came back down quickly to the 101 range. She got sick Wednesday of last week, which was an off day for school, missed Thursday but then had the next 4 days off anyhow. Nice timing!

Even when she was sick, she was doing great in the walker. She doesn’t seem to love the stander as much, but she still does really well in the walker. Yesterday when I was with her she did 23 steps, then later another 23.

Someone asked what we mean by “steps”. A step means that she moves her feet on her own, left-right-left-right. She’s not holding her own weight or balance, but she is consciously moving her legs like walking. She’s figuring out that moving her legs makes her go forward.

When we were walking by holding her up by the arm pits, we’d have to prompt her for a time. The PT would have to walk with her back and forth in laps about 40′ long and on about lap 5-6 Maria would get it and start moving her legs. That’s when we got those 150+ steps in a row.

With the walker, she doesn’t need so much prompting. I find within about half a lap or less, she’s moving her legs. It’s also a lot easier on our aging backs.

One final thing. Now that I’ve seen the walker and the stander up close I just have to ask: How could those idiot medical directors at DDD and Care1st think that a stander and a walker are the same thing? Sorry to shout but GEEZ! Have they ever even seen a stander or a walker? They are nothing alike! It just goes to show that doctors are not qualified to make decisions about therapeutic equipment. They should have PTs making those decisions.