4
July
2011
Everyone here is very excited, as in less than 24 hours we leave for our first overnight vacation with Miss D! We’ll be taking our little Sesame Street addict to Sesame Place.
The logistics involved in travelling so far away from our supply base are very complicated, and we’re not at all sure how Dorrie will react to a) being outside for so long in hot weather, b) giant muppets and c) sleeping in an unknown hotel bed. Mom and dad are also very stressed as we try to figure just how much of our stuff we should try to bring with us. What if the vent circuit we bring has a hole?! (This has happened before!) What if the suction machine stops working?! (So we’re bringing two.) This would be why we’re planning to keep the trip very quiet and haven’t made any effort to arrange meetups with people who live relatively nearby.
One of the things I’ve been trying to do is get us ready so we can put up some posts about the trip right after they happen. But in order to get over the mental hump of doing that, I need to fill in all the posts that I wanted to write and haven’t gotten around to over the past couple of months. So watch for them to fill in over the next day or so.
Posted: moving forward... or not, our little witch, tales of interest
3
July
2011
We say this pretty often, but it really just can’t be said enough: Dorrie is a very happy little girl. She’ll just be laying around on the floor when suddenly she’ll get a giggle fit and laugh and laugh. Sometimes it’s clear why: Sesame is on, or she’s playing with a toy, or someone’s playing with her and making her laugh. Other times it’s a joke only she understands.
Which is not to say she doesn’t get cranky. She does, frequently, especially when she’s tired. She gets annoyed if she wants attention and she’s not getting it. She does not like it when people make her do things she doesn’t care to do. But overall, about 90% of the time she’s in an excellent mood. It makes it much easier to want to do things with her — her lack of control means she is often smacking you in the face or pinching you or kicking you in tender places, or biting you somewhere that doesn’t need to be bitten. (Recently, on the way up the stairs, she swung her arm and somehow deformed my glasses completely. I still can’t figure out exactly how she made them crooked, but crooked they are.) But because she’s generally smiling or laughing, it’s difficult to stay annoyed with her (since she really didn’t mean to do any of it anyway) so you go back to reading the book or swinging with her or helping her play with one of her toys.
She also has a very funny laugh. Because of the trach, she really hasn’t learned properly how to make sounds, even though at this point she’s had a speech valve that she’s worn regularly for over a year. So when she laughs, she holds in the air instead of letting it out, and then she sounds like Ernie.
She does not stand up well.
She plays with a toy until she gets what she wants.
Posted: moving forward... or not, our little witch, tales of interest
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
17
June
2011
We have been meaning for a while to pay a visit to a developmental pediatrician at DHMC. One of our goals has been to get a list of diagnoses for Dorrie, and to make it good and official, in case we are called upon to justify all of the services we are receiving. So that is exactly what we came away with — based on his observations of Dorrie and our discussion of what she is like and what she is capable of, we now have a laundry list of all of her medical and developmental issues, in big bold letters with a board-certified neurodevelopmental disabilaties specialist’s name at the top. He also pointed us to a specialist we can talk with about Dorrie’s physical development, and revisit the matter of AFO’s for Dorrie (which most of her team still feel she would benefit from).
Posted: moving forward... or not, our little witch
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: insurance drama, moving forward... or not, our little witch
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: 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: 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: 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: 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: moving forward... or not, our little witch, schoolhouse rock, trying to stay healthy
