10
June
2011
I mentioned a while ago that I had asked Dorrie’s PT for suggestions of equipment that might not have any theraputic benefit, but which would be fun for her to play on. Eventually, after looking through a bunch of special needs catalogs, we both thought that the Tumbleforms JettMobile might be something Dorrie could use.
So we asked Dorrie’s DME vendor if they could bring one over so we could try it out. They cost about $600 so we certainly didn’t want to order one without seeing how she looked on it. They weren’t sure they could, but our sales rep managed to wrangle one for a couple of days from a teacher she knows, and brought over so we could have a look.
Dorrie thought it was pretty cool, and more importantly, in spite of the awkward looking setup, it looks to us like she really will be able to use it to push around on the floor and be more mobile than she has been pushing herself around on her back. It will hopefully also spare her poor ear, which tends to look pretty red after a day of sliding around on it.
So the next step was to contact our area agency (an organization that provides support services for people with special needs and their families. I believe at least partially funded by state money but I’m not entirely sure how that works) and see if they had any funding we could access to help pay for it. Normally we’d go through Dorrie’s insurance for this, but she already has a mobility device (her chair) and everyone was in agreement that they wouldn’t authorize it. Since we’re going to need another chair within the next year or two, we didn’t want to risk jeopardizing the future funding for that. In any case, we submitted our quick application and a couple of weeks later they came back and said they would cover part! (Now we might be able to afford a swing, too!) So we went ahead and ordered… haven’t heard yet when it’s expected in, but we’re all very excited.
Posted by mom, under insurance drama, moving forward... or not, our little witch
3
June
2011
Back in February, we began attempting to make an appointment for Dorrie to have an adaptive communication evaluation with the state agency that’s supposed to assist the schools with equipment. There was a lot of bureaucratic red tape, of course, and we were told at the time that the waiting list to get the eval was 3-4 months long.
We were not best pleased, but we sent in the forms we were supposed to fill out and assumed they’d eventually get back to us with a date. Things were busy and time passed and suddenly we realized it had been 3 months and we’d heard nothing from them. So first our SLP from the school called, and by her reports they were very unhelpful until she called a second time and was more aggressive. They began giving her some song and dance about a missing form.
So we called to demand an explanation — were we supposed to psychically know there was a form missing? — and got a different story. Apparently our info had been passed to the billing department, where the billing department determined that our primary insurance would not pay for the eval, and that medicaid needed a form signed by our doctor before they would do so. And then… they did nothing at all. Because apparently our doctor is psychic too!
They at least admitted it was all their fault, though I wonder if they would have been so up front with this had the involved billing person not left for another job in the interim.
So things finally got moving again and after some scheduling confusing we finally got an appointment for an OT evaluation on June 1st. Apparently this was a required preliminary to the actual communication evaluation, which we weren’t aware of, but whatever. Additional information is always good.
The woman who came out was very nice and brought an iPad for Dorrie to play with, as well as a few switches. She also made use of the switches we already had here from the school. Dorrie was in a good mood (surprisingly — at the same time and not two feet away, workmen were busy demolishing our kitchen so we could get new cabinets.) and very agreeable to playing with the different apps and switches. She did a surprisingly great job at using her fingers as fingers and not as a big unit to hit things.
We’re supposed to get the results of this eval as a report and they’ll call us to make an appointment for the second eval with the speech therapist.
Posted by mom, under insurance drama, our little witch, schoolhouse rock, wtf, people
10
May
2011
Dorrie got her teeth right on schedule and in the correct order. She’s also never really eaten much of anything by mouth, though to our dismay she continues to occasionally return her food to us by mouth.
Because of her poor swallowing ability, and her inability to understand not to try and swallow something, we’ve never felt comfortable using any sort of toothpaste with her and have relied on dry brushing to keep her teeth clean. But beyond that I’m ashamed to admit we’ve done almost nothing at all. The summer she turned two we discussed going to the dentist, but she was still on the vent full time at that point, and we never got further than discussion and asking a few people for recommendations about a dentist to try. (We got conflicting recommendations, which didn’t make us any more eager to pursue the matter.)
Last summer she turned three and was off the vent during the day, but we still didn’t have a better idea of where to go, so in the end a visit remained in the realm of discussion — though with additional guilt and concern that we really needed to get this done. So finally this winter we polled her teachers for recommendations and got a very enthusiastic one from her vision teacher. After some hemming and hawing, we made an appointment. When I would brush her teeth I could see some gunk on there that the brush just wasn’t getting off, so it was clear she needed a dental cleaning.
The visit went extremely smoothly all things considered. Dorrie is a biter, and she will try to chew anything that goes into her mouth. I was very afraid she would try to bite the scrapey thing the dentist uses and injure herself, or turn her head suddenly while he was working and again, injure herself. I had horrible visions of Dorrie with bloody holes in her mouth, so I was pretty on edge when the cleaning started. But as noted, it went very smoothly. The mirror the dentist used for some reason made Dorrie keep her mouth open rather than chomp down on it, and she didn’t try to bite the scraper at all. She was also very calm about the whole thing and didn’t freak out. We were very pleased to hear that in spite of her incessant vomiting, her teeth are actually in very good shape – no pitting or other obvious signs of deterioration. So yay. Hopefully they’ll continue to be in good shape for our next visit.
Posted by mom, under moving forward... or not, our little witch, trying to stay healthy
10
May
2011
Our plan for Mother’s Day was ambitious: we took Dorrie over to the Children’s Museum of New Hampshire and then out to eat.
The Children’s Museum opened a new location a couple of years ago, and I had never been — in fact, I hadn’t been there since I was a child myself, and I remembered being impressed by this giant ship they had inside which you could climb upon.
There isn’t any climbing ship at the new location (and Dorrie couldn’t use it if there was), but I hoped there would be enough stuff that Dorrie would find it interesting. And maybe be able to somewhat participate with some of the exhibits (I had visions of bubble and sand and water tables, which would seem to be a standard exhibit at a children’s museum…)
I have to confess, I was actually really disappointed by the museum. It was accessible in only the loosest sense of the word: the wheelchair-stroller fit pretty well through all the exhibits. But not a single exhibit was set up so that someone actually sitting in a wheelchair could easily take part. Things were placed in the center of very low tables with no portion raised high enough for a wheelchair to get underneath, or in smaller areas where the chair couldn’t fit at all. Now, Dorrie doesn’t have the motor control to be able to play with a lot of small toys on a table, but quite a lot of chair-bound kids do, and as far as I could see there was zero thought devoted to them. In an older facility I can give it a grudging pass, but this was built only a couple of years ago! Definite failure. (Oh, and there were no bubbles or sand or water tables at all. The exhibits were not really very exciting.)
Dorrie wasn’t quite sure what to make of the place. She doesn’t look down very well, so most of it wasn’t really in her line of vision. She seemed somewhat interested in the bits of it that she could see easily. But she was far more intrigued by the ceiling fan at the restaurant we ventured to afterward.
Posted by mom, under moving forward... or not, our little witch, tales of interest
5
May
2011
Dorrie has been receiving homebound services from the school all year, and she’s handled having the teachers coming in very well – medically and otherwise.
So we’ve been discussing the possibility of having her attend the special needs preschool next year instead of having home services.
We decided to do an experiment and bring her to the school for OT. To see how she reacted to the location, and how she handled being exposed to the school equipment. (Though not the children, exactly, since OT is at lunchtime and in between the morning and afternoon preschools.)
She had a very nice time. We’ll be repeating the experience a couple more times to see how it goes, but there’s not really any good intermediate step between in-home and in-school services, so I think we’re going to just have to try it next year. If she gets sick a lot we’ll have to revisit, but we’re all hoping she’s big enough and strong enough to handle it.
Posted by mom, under moving forward... or not, our little witch, schoolhouse rock
28
April
2011
Dorrie was mostly recovered from her cold, so we went forward with our plans for her to get her haircut.
As much as I think little girls are adorable with long hair, and so cute with their pigtails or braids, neither of those work well for Dorrie because of the amount of time she spends on the floor and with one side or another of her head rubbing up against something. We’ve occasionally attempted to put elastics or barrettes in her hair but they just get rubbed out in about thirty seconds.
So without the ability to tie up her hair, it gets not just in her eyes, but it also gets in the way while we’re trying to change her trach ties. It can be quite difficult trying to keep it up out of the way while also fastening the velcro tight enough that the trach isn’t likely to come out.
Therefore: time to have it cut! We’d cut it several times ourselves, but I thought maybe having a professional take a turn would let it come out better. Look nicer. Since I get to Supercuts maybe once a year if I’m lucky, and as nice as the idea of those kids’ haircutting places are, they also seem to me like they’d be pretty germy, we made an appointment with Grammy’s hairdresser.
Grammy, the nurse, Dorrie and I all headed to Hampton. We brought along Dorrie’s orange chair as a booster seat. We weren’t entirely sure how the day would go, so we’d booked in a long appointment just in case Miss D decided to have a meltdown. But to our surprise and pleasure she behaved beautifully. She didn’t try to jerk her head around, she didn’t get upset, and she let her hair get cut with no complaints at all.
Her only attempt at rebellion came after the haircut was all over: we stopped to change her diaper in the back of the car and she decided to pee all over her clothes and the nurse. (Which she found very hilarious.) So we made a detour past Grammy’s house to change and clean up before heading back home again.
Posted by mom, under moving forward... or not, our little witch, tales of interest
27
April
2011
Many pictures backlogged, including great-grammy’s 90th birthday party. But otherwise things have been on a pretty even keel for the past few weeks. The pukies continue to be at a low ebb, the teachers have been coming (mostly) when they said, and nursing has been very stable.
We’ve been making a lot of plans for the summer, with the intention of getting Dorrie out of the house a lot more than she has in the past. The first step was to be Easter, where Dorrie would join all of us for a meal out and then visit Uncle Jonathan’s house (which none of us have ever seen, in spite of his having moved there 3 years ago.) Unfortunately, Dorrie developed a fever on Saturday night (Just a titch under 100 — but even that slight of a fever shot her heartrate up to 150) and had a very poor night sleep-wise as a result. So we postponed Easter and stayed home instead.
So far she seems to be recovering without any major issues. Fortunately it’s April vacation this week, so she hasn’t had to miss any school and we’ve been able to be very flexible with her sleeping and eating schedule.
The next scheduled event is Thursday — first non-mom haircut. Her hair is incredibly long now, but a huge mess. She’s constantly getting her fingers stuck in it, it’s in the way when we go to change her trach ties, and it hangs in her eyes. So it needs to come off. If she gets better head control we can think about letting it get long again, because then we’ll be able to tie it back. Right now any ties just get rubbed off immediately as she slides her head around on the floor.
Posted by mom, under moving forward... or not, our little witch, schoolhouse rock, trying to stay healthy
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 by mom, under 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 by mom, under 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 by mom, under moving forward... or not, our little witch, schoolhouse rock
