Seems like it’s been a week since I posted. Wonder why that is.
Jules sent me a link to a post by a dad of a disabled boy that mentions how great it is that he got insurance to pay for a hospital bed for the son. I find that bed design is extremely important, from custom like Pearlsky’s, to Tommy’s hospital bed, to Anteros’ SleepSafe bed.
Looks like a fourth kid in the U.S. may have just been diagnosed with the same metabolic disorder as Pearlsky and David.
I hate when I see something great for someone in some e-store and I put it in my shopping cart and then I realize that, no, dad died three months ago, but he would have loved it.
The Department of Public Health, Office of Public Protection, tells me I have not heard anything about the school’s Head Nurse because the investigation is still going on.
There’s this guy who has been cleaning my house since 1987. Every week. He’s 66 and I trust him with my life. He ended up in the hospital yesterday, his first time ever in a hospital. He does not remember when he last saw a doctor (and I believe it). Never married, no kids. As of today, I am his health care proxy. He freaking better get better.
It took about forty-five minutes, but I got Pearlsky to stick her tongue out at me.
Several of you sent emails and contacts, and comments on the blog, about the scoliosis stuff. It is all appreciated. We get the body jacket thing this week. Adding “thing” to the name of it seems to soften it a bit. They can make it in a vast assortment of colors and patterns and stuff, but when I asked for Pearlsky’s to be in a red and black lace design, they were aghast. Go figure.
I dug out a voice recorder thing and connected a switch to it. I am going to go about this an entirely different way. And I’m gonna win.
Looks like the Professor’s new daughter, Aria, is having surgery on Tuesday. Keep her in your thoughts. And if you do that prayer thing, go for it.
Pearlsky’s IEP is coming up in a week and a half. I can’t tell you how much I am looking forward to it. I saw the Special Ed Coordinator for the high school (who I think is fantastic) and gave her the head’s up that I am putting my foot down about a number of things. (Something is wrong with that sentence.) I am sure I will be writing more on that.
Something’s changing. I can feel it. She’ll prove it.