28
March
2011
When we heard about great-grammy’s 90th birthday party, we weren’t sure if we could make it. We weren’t ready to make an overnight trip so far away from our house, and though we had driven there and back once before (it’s about 3.5-4h one way), it wasn’t an attractive proposition — especially since Dorrie has grown far more opinionated over the past year about how long she’s going to be happy in the car.
But since people don’t turn 90 every day, we did want to make the effort if we could. Our day nurse agreed to come with us on Saturday, and having a third person around who could watch Dorrie on her own proved to be a very big help.
We left around 9am, all of us packed into Grammy’s car with a load of supplies to try and keep Miss D entertained for the length of the trip. Unfortunately, she was none too pleased about being put into her car seat and driven away, and eventually we had to pull over to give everyone a break from her anger. She got out of her car seat and sat in mom’s lap for a few minutes, which seemed to cheer her up considerably. She was also pleased to watch some Sesame Street videos on mom’s phone after she was returned to the car seat.
The party was at a function hall I had never been to (but then, the number of places I haven’t been in the area are nearly infinite compared to the few I have), but it was nice. We got there before almost everyone and were able to claim a table in a far corner. We set out some of her floor mats and let her lay down and play.
After a while we untied one of the helium balloons that were around as decorations and tied it to her wrist. She had played with a balloon in school, though it was just one filled with regular air — so it didn’t float. This one floated and bobbed and Dorrie found it extremely interesting.
So did her cousin E. who was perhaps more intrigued by the balloon than he was by Dorrie — he soon had about 5 balloons tied to each wrist in an experiment to see if he would float away. Dorrie also had a chance to meet her great-uncle Bill for the first time, and some more of mom’s cousins.
Great-grammy made her entrance at the appointed time, and her table was a very hopping place. People were coming over to say hello and congratulations and as you can see, it was tough to get everyone’s attention at once!
Dorrie was not too thrilled by the food, but the rest of us found it very tasty. But by the time we rolled out she was starting to get tired, even though she’d been quite happy to play around on her mats. We all hoped she’d nap in the car on the way home, but though she fell asleep briefly, it was not enough. She was soon awake again and displeased to discover she was still driving. We all took turns holding the phone where she could see it so she could watch the Sesame Street 25th Anniversary Special over and over again.
Posted: moving forward... or not, our little witch, tales of interest
19
March
2011
This has been big news in the world of premature births, but I’m finding that even though it was reported in the mainstream, it hasn’t made as much of a splash as it could have.
The backstory:
For more than 30 years, it has been felt that progesterone supplements for some pregnant women might help prevent premature labor. The practice was never as widespread as it could have been, probably due to a number of high-profile cases where other drugs were given to pregnant women with terrible results. (See: DES, thalidomide). But this treatment has picked up in recent years, and there are now actual studies that prove that P17 shots given from roughly week 16-34 can reduce the incidence of preterm labor. These shots, made up by compounding pharmacies, are extremely cheap – about $10 – $20 apiece, and since they only need to be given once a week, the total cost per pregnancy is about $200.
Cost effective and medically effective — a great combination.
And an opportunity for mega profits, apparently. The company KV Pharmaceuticals, which has a pretty shady record, acquired a company which was working on a commercial version of this drug and got it fast-tracked through FDA approval. The FDA in its infinite wisdom decided to grant KV exclusive rights to distribute the drug in the US for the next 7 years. KV promptly issued C&D orders to all compounding pharmacies creating the cheap version of P17 shots and declared that from now on everyone must buy from them at a cost of $1500 per shot.
Their rationale? The average preterm birth costs $50,000, so to prevent it at the cost of a mere $30,000 is saving money! Of course, at that price, insurance companies will have to be very strict about who gets approved for this drug (meaning you’ll have to have ALREADY experienced pre-term labor in a prior pregnancy before they’ll pay), and I’d be hard pressed to find anyone who has $30k just lying around to pay for this out of pocket. KV, of course, claims no one who needs the drug will fail to get it due to finances, but that is complete BS. At $200 it was inexpensive enough to be used as a preventative measure in marginal cases where the PTL risk was unclear; at $30000 there’s no way that’s going to happen.
Posted: insurance drama, wtf, people
19
March
2011
Things have been both busy and boring around here, both of which are good, but don’t make for much to post about on a day to day basis.
Dorrie has been doing well with school, and we’re currently beginning the process of working out her IEP for next year. The school has recommended/approved that she continue to get the same services over the summer session as we have during the regular year. I’m not positive that she’ll have the exact same therapists (my impression is that the school district only employs a few over the summer) but I’m hoping.
The big change may be next year, when we’re tentatively hoping to let her actually go to the school at least once a week. We’re still in very preliminary stages of talking this over, and it depends a great deal on what the doctors think and how the nursing works out, but I’m hopeful that it will come to pass. The idea of exposing her to the germs of a dozen or more little kids makes me extremely nervous, but it has to be tried at some point.
I’ve also asked her school PT if she has any thoughts on equipment that would be FUN but also work within the somewhat cramped confines of our townhouse. We have very low ceilings and no yard space, which makes many of the better things (such as a freestanding swing) difficult. And the equipment we have, the stander and the chair, while useful and theraputically important, are not really fun in and of themselves.
* * *
I’m also pleased to report that Vomit-Fest 2011 has gone on hiatus. After upping her zegerid, eliminating several items from her diet, pausing her food after 6oz for about 10 minutes, and being sure to vent her stomach and press around on it to get all the air out before the food starts, we seem to have landed on a combination of protocols that is working! We’ve now gone four weeks with only one pukie, a new world record!!
Posted: moving forward... or not, our little witch, schoolhouse rock
