30 Jan 2011
“I distrust camels, and anyone else who can go a week without a drink.” ~Joe E. Lewis
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.
A good bed is, I agree, very important. As for the nurse, if it’s taking so long, she must be THAT bad? Nice links…ahem…You are going to win too, no question, with your daughter and with that damn IEP. Cheering you on.
* yay tongue! Now see if she can repeat it 😉
* Body jacket: To be honest I’d go for something that wouldn’t show under her clothes. Like tan. The Blue Jean looks cool too, but if you let her wear a white top it’ll show.
* I don’t really do that prayer thing, but she’ll be in my thoughts. Together with a friend of mine who’s in the hospital now with pre-eclampsia at 25 weeks pregnancy 🙁 The baby’s gonna have to come out this week.
Looks like you’ve been busy. Don’t forget to take care of yourself too. (been seeing too many people lately taking care of others and forgetting themselves, resulting in them needing care instead…)
Some of those patterns are very cool. I like the “tattoo”.
Sorry, I forgot to ask what you are planning to use the recorder for…
Sorry been a bit absent of late. This was a meaty one, full of tasty morsels, none of which I have time to chew on. I do wish they would move faster on the Nurse thing, that pisses me right the fuck off.
I wish you could videotape the IEP meeting. I’d pay money to watch that.
I’m with Jules on the tattoo pattern. It seems very 18 year old girl.
I’m hoping like anything that Pearlsky will stick out her tongue if she disagrees.
With luck the nurse thing is taking so long because they don’t strip people of their licence without due process.
Hidden camera on the IEP would be awesome. I’d want a gif of their faces when you say your goals for Pearlsky are to stop having her civil rights violated, to suck her fingers at will and to press a button that makes a recorded voice say “fuck you.”
Trusting your feelings – but believing things have already changed. Only 45 minutes? As the Canadians say, good on ya! for digging out that voice recorder thing and hooking it to a switch.
Now about your housekeeper – guess he took vacation over the holidays when you were stressed over your mother and sister coming for dinner. (I forgot to ask, did you cook a goose this year?) There is something perfectly right about you becoming the health care proxy for someone you trust with your life. Good on ya!
Did you happen to mention the word “tongue” when you requested the red and black lacy number? That might explain their consternation.
On a serious note, I was treated for scoliosis when I was a preteen. Back then, they called the garment a corset. It had metal stays and was actually pretty effective, all things considered. Corsets rule!
We went for white, a nice neutral color that will disappear under most clothes. It does get me out of bra shopping, I guess, which was always a mixed bag.
Thinking of tweeting from the IEP next week … 🙂
The first thing on the agenda better be to get rid of those arm/elbow things. I wrote a comment about them on an old post, but suffice it to say they are not being used properly from what I can gather.
I know goal ideas are always a sticky point. Maybe choice making? Maybe I should shut up.
Will you be sharing your twitter identity now?
I love the design of the sleepsafe bed – it definitely takes the medical feel out of hospital beds. Also the jacket seems like it’ll be relatively comfortable as far as jackets go. Maybe I say this from years of corset wearing and I know that while it does take a while to get used to, the feeling of good posture is just… I dunno. It’s nice I guess!
And I fully hope that now that she has stuck her tongue out at you, that every time you do a stereotypical dad thing (you know, “dad” things.) she does it as a response.