2
July
2011
A couple of weeks after our first evaluation, I got a call from the agency to schedule the second. We were finalizing a date when I suddenly realized that they were making an appointment for there rather than here. Now why they would have assumed I’d know that, when the first person did come to the house, I have no idea.
So we changed the date to one where we could actually go, and last Thursday Bob took the afternoon off work so we could all trek up to Concord. In more amazing examples of inefficiency, the fact that they had already spent 90+ minutes evaluating her did not mean we could avoid repeating her entire medical history and answering a dozen questions which they should have already known the answer to. I do love to talk about Dorrie, but it gets tiresome after a while to have to go through the same thing over and over. I know they write it down. I see them do it. Does it disappear into a black hole afterwards?
In any case, I entertained Dorrie with one of her toys while we answered all these questions, so she remained in a reasonably good frame of mind by the time the eval finally got around to involving interaction with her.
She played with an iPad for a little while, and then the woman brought out this machine:
I guess finding out about this thing was worth the drive and scheduling nonsense. It’s actually really pretty awesome. It’s a touchscreen computer which can be fitted with different plastic grids on the front, dividing the screen into varying sized boxes. (The one Dorrie tried out had 8). In each little box it can display the image of the user’s choice, and then all the person has to do is touch the image that they want. The Vanguard says the word associated with the box.
Dorrie has been spending most of this school year practicing making choices based on pictures, so if her motor control can be improved enough that she can really hit the image she wants, this would be a really great system for her to use. In her IEP goals for next year is attempting to increase the number of things to pick from all the way to 5 choices (from the two she currently does), and I really didn’t see how that could be handled until we saw this in action.
The day couldn’t entirely end without further annoyance, however, as we discovered the evaluation wasn’t over yet! No, even though they knew well in advance she was coming and should theoretically have had all the equipment on hand for this visit, they did not get around to having an eye gaze device available, so we will have to return for a third visit at the end of July. I’m very interested in seeing how this works, so I’m looking forward to it, but I don’t think any of these places really bother to take into account or care that each trip requires someone(s) to take time off work.
Posted: medical morons, moving forward... or not, our little witch, schoolhouse rock
30
June
2011
School is over for the year! As crazy as it has been having so many different people come to the house every week, I think she’s had a really great year. She only got sick a couple of times, and she really enjoyed having so many people to interact with.
She discovered several new interests. Drawing with markers. Pasting.
Sometimes she’d even get interested enough to bring one of her hands to midline, something she finds really difficult.
Toward the end of the year, instead of laying on her stomach on the ball and trying to lift her head up, she decided she’d rather try to stand up. This is new. Prior to this she’s always been a bit of a noodle leg rather than wanting to put any weight on her feet — she’s even an expert at worming her feet out of the straps on her stander so she’s not actually standing on anything.
She was also making some progress with her head, doing better at relaxing and trying to use her muscles when we tried sitting at her bench or sitting her in someone’s lap.
She was getting much better at isolating her wrist and hand to use them to touch things rather than needing to swing her entire arm. Which is not to say she didn’t enjoy swinging her entire arm to knock things down. She was quite pleased with herself after she knocked over this cup of dirt when everyone turned away for just a few seconds. Notice the white container, which is covering the dirt still left on her tray.
In May, she made several visits to school, so people could meet her and she could have at least a bit of an introduction to the place where she’s going to go next year. She got to try out some new equipment, she met a few kids, and she generally had a very nice time.
Her work with switches was rather haphazard this year, as we tried to figure out which switch types were going to work best for her, and also because not all of the therapists had the proper training to know how to actually use the switches. (Technology literacy lags behind in many places…) This will be addressed next year with a more consistent program after Atech has finished all their evaluating. But it’s pretty clear that she can activate a switch and that she does understand that sometimes pressing the switch can cause something else to happen. She had a switch connected to a little fan and it didn’t take her long to figure out how that worked. Whether or not she’s going to be able to isolate more than one switch in a field the size of her tray and understand that they can do different things is a bigger question which we haven’t yet answered.
Posted: our little witch, schoolhouse rock
25
June
2011
I know some of the people who read this are probably interested — it’s very interesting (to me anyway, and I can’t be the only one) to compare services across areas and see what other people are getting from their school systems.
So after much discussion, we’ve decided to go ahead with trying to get Dorrie to school next fall. She’ll attend the special needs preschool four afternoons a week (2.5h/day) with transportation to and from the school. She’ll have a paraprofessional 10h/week (ie, all class time) and a nurse 14h/week (all class time and on the bus). The rest of her services she’s pretty much keeping the same, with some slight alterations – OT 1h/week, PT 1h/week, Vision 90m/week, Speech 1h/week. Units for the special ed teacher fill out the remaining hours. The teacher of the deaf teaches a hearing impaired classroom at the time Dorrie’ll be in school, so we’re going to try just having her in for consult (30m/week) and see how that goes.
Her goals are pretty ambitious, so we’ll see how they go. She has shown some improvement over the school year, though not as much physically as I would have hoped. I’m really hopeful that her immune system will be up to the challenge of being exposed to so many kids, but we’ll have to see how it goes — I do think that being in school will be a really good step for her, and I want her to have that experience, just not at the expense of her health.
Posted: our little witch, schoolhouse rock
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: insurance drama, our little witch, schoolhouse rock, wtf, people
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: moving forward... or not, our little witch, schoolhouse rock
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: moving forward... or not, our little witch, schoolhouse rock, trying to stay healthy
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
18
February
2011
Looking back, I don’t often write about our day to day activities. Our days are all very alike. A while ago I had started a post detailing a day pretty much minute by minute, but it really wasn’t coming out as I’d hoped. But it might be time to try that again.
* * *
Dorrie has several favorite TV shows, but by far her two favorites are Angelina Ballerina and anything Sesame (This somewhat extends to all Muppet shows, as she quite liked Fraggle Rock as well, but we generally have a pile of Sesame Street, Play With Me Sesame, and Plaza Sesamo saved on the Tivo.) At the urging of one of my friends, I’ve started watching Top Chef this season, so everyone at our house was pleased to see the summary of this week’s upcoming episode. A cookie challenge! And, of course, to judge a cookie contest, you must go to the world’s cookie expert: Cookie Monster. He brought along two of his friends (Elmo and Telly) and Dorrie was overjoyed to see them all appear on what I’m sure she thought was a boring mommy and daddy show. She went absolutely bananas, laughing and wiggling and trying to flip herself out of my lap.
* * *
Dorrie is a biter. I’m sure it’s a sensory thing; the fact is, I’m a biter too — I’m always chewing on stuff. Pen caps, fingernails, it’s endless. I don’t even realize I’m doing it. Sometimes gum helps. In any case, Dorrie has the biting gene, but not the understanding that biting people (including herself) is not nice. It can also become a problem while she’s having school, because there’s a fine line between Dorrie chewing on something for a few seconds and Dorrie completely frantic to chew on everything to the exclusion of all else. Plus, some of the school things are not good for chewing on.
Today during PT, one of the activities we did was for her to sit supported in the PT’s lap while we helped her to draw on a dry erase board. She chose between two markers and I helped her draw with the red marker for a while. Her attention started to wander, so we stopped and asked if she wanted more, or if she was all done. She didn’t really seem to have an opinion, so we offered her a choice of two colors again, and she picked the green marker instead of the red. The green pleased her much more, and she allowed her hand to be supported to draw for quite a while, watching the board intently and smiling to herself. [She was looking so adorable while she did this, it was killing me that I didn't have the camera or a hand free to take her picture.] After some time, I took the marker back and asked her again if she wanted more. We thought she was indicating she wanted it back, so we started drawing again. This time she had more of an idea of where she wanted her hand to go and started inching it down the board. Then her head began to tilt toward the marker and her mouth opened oh so casually — she wanted to bite the cap.
I took the marker away and said it was all done, since she just wanted to bite it. And she started to laugh, quite obviously pleased with herself for having tricked us into thinking she wasn’t done drawing.
Posted: moving forward... or not, our little witch, schoolhouse rock
26
November
2010
Another long delayed update.
First off, as hasn’t been mentioned here, November is Prematurity Awareness Month. I don’t really hold too much with ‘awareness months’, because generally they’re about something that most people are already quite aware of, thank you.
But in this case, aware of doesn’t really mean understanding. So I thought I’d link to the post Eliza Grace’s mom Anne wrote earlier in the month. She does not overstate the situation; if anything, the impact can be far worse than described.
Now, on to less depressing subjects.
Nurses Eleven and Twelve are still with us and things are going good with them. We’re especially pleased to have a reliable competent day nurse (Twelve), as this is quite a novelty for us. In fact, it’s the first time EVER that we have had such a person in the over two years we’ve been home.
The agency had called a couple weeks ago to say they might have found us another nurse to cover one more night a week (a search that has been ongoing for months now). However, this elusive person was supposed to come for a meet and greet a week ago and this did not occur, so I’m assuming they have disappeared again in a puff of smoke.
* * *
At the end of October, we finally decided to take a big step and trial just how long we could go without any supplemental oxygen at all. It appears the answer was idefinitely, as we haven’t had to turn it on again since!
Dorrie had an appointment with Doctor Optimist the day before Thanksgiving, and she issued new orders to the nurses that we need only do spot checks with the pulseox during the day (mom and dad, of course, were long taking it off when it was getting annoying with all the movement-induced beeping). A couple days before that I had spoken to the RT from the vent-supply company, and we both agreed that it’s just silly to have giant tanks of liquid O2 sitting around evaporating just in case we need them, so they’re going to come and take the tanks away. We’ll continue to have pressurized O2 tanks in the house which we can use in an emergency and for long enough that if we needed longer-term O2 back they would have time to arrange a delivery.
* * *
Back at the beginning of the month, my mom’s sister was visiting for the weekend, so Grammy and Auntie Grammy came over and we all went out to lunch. Dorrie was extremely well behaved, and sat contently in her chair while we ate, just looking around at everything in the restaurant.
* * *
Dorrie’s school has been going okay, though November and December are both terrible months, with lots of random holidays and days off. The schedule, as a result, has been thrown into chaos with teachers coming randomly and needing to reschedule at different times. For the most part she hasn’t missed too much, but I’ll be glad when things settle down again.
Her new favorite activity is to draw (with a lot of assistance) with markers on a whiteboard. She gets very excited when she sees the colors appear on the blank white board. I was at work the first time they did it, but apparently she became very upset when they took out the eraser and tried to get her to help them erase the scribbles she had drawn. She’s definitely getting more opinionated about when she’s done and not done with an activity — more than once she’s gotten visibly upset when something she was still interested in playing with is taken away. And she’ll also get upset when she’s left with a toy or activity she’s tired of doing. Unfortunately, she’s still not able to tell us exactly what she wants, so we’re left with presenting her choice after choice until she finally settles on what she’s looking for.
* * *
We finally got her stander adjusted to accommodate her increased height, so she’s been trying to use that again. The stander is more difficult than the chair, since she has to do more work, and it can be harder for the person with her to engage her attention on an activity — a lot of the time all you can do is try to convince her to hold her head up.
Everyone keeps saying she’s improving, lifting her head up more, getting stronger. But there hasn’t really been any significant progress along those lines that I can see. Maybe I’m just waiting for a dramatic change to convince me, but we certainly aren’t there yet.
* * *
After not being able to work on it for pretty much the entire month of September due to everyone being sick, we redoubled our efforts this month to finally finish up the painting project in Dorrie’s bedroom. We really want to get her sleeping upstairs by the end of the month.
The painting project is pretty much finished now; maybe a tiny touch up here and there will be needed, but we’re going to let it sit and we can see what imperfections bother us and which ones we can overlook.
It came out so much better than even I had expected it would, and I knew (as Grammy didn’t) how good of an artist Bob was. He did a fantastic job sketching out the scene and then transferring the outlines to the wall. And an even more excellent job on the detailed areas that I didn’t even want to touch. Once the room is totally done (we’re now in the process of tidying and organizing the medical supplies) I’ll put up a better series of pictures.
Posted: moving forward... or not, nurse or no nurse, our little witch, schoolhouse rock
25
October
2010
I see it’s been more than a month since I posted here. Bad me.
Well, let’s see.
Not too long after I last posted, I came down with a cold. It was an odd sort of cold — I could tell I was getting sick for almost 3 days before it really got awful. We went into our usual sickness mode, where the sick person is isolated from the rest of the house in hopes of sparing everyone else the illness. I spent from Tues night – Saturday morning in our bedroom with only a wee bit of time out (mostly on Thu, when Bob had to go to work to deal with a meeting he couldn’t miss). By Saturday I’d gotten worse and was coming through the other side, so I went back to work and we resumed normal operations, mostly.
By Tuesday, Bob decided he was getting sick in spite of all our precautions. Turnabout was fair play, so he retreated to our room and I took over downstairs. The illness took a slightly different course with him, and seemed to linger longer. And even more unfortunately, it was clear by the end of that week that Dorrie had picked up something as well. We had an appointment up at DHMC on Friday anyway, so we (me and the nurse) took Dorrie up so everyone there could have a look at her. The verdict: her lungs sounded clear, but one ear was possibly red, so we came away with an Rx for amoxicillin which we were to fill only if she seemed to be sick.
Sunday she was really fussy and angry, especially while trying to sleep; even though we had a nurse, I ended up sleeping with her most of the night to keep her calmed down. We called in sick to school on Monday, Tuesday’s teacher tends not to show up half the time anyway (she didn’t this week either) and by Wed she was still a bit subdued but clearly recovering. So while stressful, we were fortunate to get through the cold with just a few nights of poor sleep and four days in a row of pukies. (We put her on reduced feeds for the rest of the week after that.)
Once she was better, we had an amazing run of 17 puke free days!!
As a reward, we’ve started trialling hemp milk and honey as potential new sources of calories.
School is continuing pretty well, though it’s been a rare week when some teacher/therapist or another hasn’t needed to reschedule. We also started private PT again last week, after literally months of trying to get it properly approved. I’m still holding my breath in expectation that someone’s going to send us a bill for it.
And speaking of something that’s taken literally months of wrangling to get finished, the RAMP was finally installed a week and a half ago!! Of course, it’s now the rainy cold season here, so we probably won’t get a whole lot of use out of it until spring, but as long as the idiot snowplow guys don’t break it over the winter, we’re good to go.
(Note: The windows in these pictures are not ours. Unfortunately the configuration of our townhouse means that literally the only logical place to put the thing required it to snake down in front of someone else’s unit.)
On deck for this week: our furnace guys are coming to install the optional humidifier so hopefully the air in our house won’t be so dry this winter. We’ll see if that improves Dorrie’s suctions when she’s off the vent. And maybe my dry skin… but if I had to pick, I’d vote for the former.
Posted: insurance drama, moving forward... or not, our little witch, schoolhouse rock
