We’ve been contemplating things we can get for Dorrie that she can use and enjoy. We have had our eyes on a few things — a chair, a swing — and then there is this.

This is Dorrie’s new Jettmobile. As you can see, it is a shape designed to let her lie down in it comfortably and have some freedom of movement with her limbs (in her case, her legs). It sits on casters so that it can roll around on the floor, and as long as she can get some purchase either with her bare feet (socks are too slippery), or if she has something she can push off of, she can move herself around a little.

(It doesn’t show well in the picture, but she is actually pushing herself around a little with one of her feet here.)

The Jettmobile has proved to be a hit — Dorrie likes the new environment, and she likes the mobility, as slight and semi-random as it tends to be. It also gives us something we can put her in that lets us push her around freely on the floor, which she also likes, plus it has the benefit that we can plop her in it and wheel her over to the kitchen while we are making her food, letting her see what we are doing much better than she can from in the living room.

The first kink in our plan was Miss D herself, who didn’t want to wake up in the morning. Eventually we had to decide: wake her up or risk feeding her while she was asleep? We decided to chance the latter and so started up her food while she was still asleep. She woke up partway through the food and though the inevitable did occur, the pukie was only a very small one and entirely contained on a hotel towel.

We left the hotel feeling all wise and prepared. The first thing we did upon getting to the park was to head for the welcome center to get Dorrie her orange handicap bracelet and a printed list of rides. Naturally, we hit the first snag there as well, as the girl couldn’t get her computer to work and actually spit out the list of accessible rides. After several minutes we gave up and decided we’d just ask at the rides. (As it turned out, the only ride for Dorrie was the carousel. Which is really my only complaint about the park — yes, if she didn’t have a trach, probably she could also have gone on some of the water rides, but I’m really not sure why an amusement park with such gentle rides overall was not more accessible to someone who needs even as much assistance as Miss D. I’m really surprised there wasn’t something like a train.)

The girl running the carousel this day was more cautious and required permission from her supervisor before she’d allow D on the ride, but she was apparently a very anal employee in general — she stopped the ride several times because people were ‘taking pictures’ or ‘moving around’. But Dorrie got to ride with Grammy in the end and had a very nice time.

[Waiting for the ride to start]

[Riding with Grammy]

Grammy and I hit the stores again, spending even more money on random stuff that we’d been debating over the day before. We even managed to find the personalized books booth, which we had overlooked the day before. So we ordered a couple of those and grabbed some slushies (Grammy’s hopes were dashed, as it wasn’t nearly hot enough for Dorrie to be interested in having any) before we headed over to see the second of the three shows currently running, Abby’s Treasure Hunt.

[Enjoying the show]

This show involved more muppets than the Elmo’s World Live had, and Dorrie was in a better frame of mind to begin with, so she enjoyed it a lot more than the last one. She even managed to stay in her chair the entire time. At the end, Rosita came down to say hello, which was just great. (I’m not sure Rosita is one of Dorrie’s favorites exactly, but she’s one of mine.) Bob managed to snap a couple of pictures before a little girl who’d been sitting behind us managed to fling herself bodily onto Rosita.

[Rosita says hello]

The whole afternoon there had been thunder on and off, causing the rides and some bits of the park to close down for periods of time. As we finished with the Abby show, it was still threatening to storm, but it didn’t feel like it was overly close. All the same, we decided it would be a good time to have our break, so I went back to pick up the books and Grammy and Bob headed to the car to start getting Miss D and all of her gear packed up. I had just collected the books (saying to the guy that he’d better give me a bag in case it started to rain) and was heading to grab the picture frame I was also intending to buy when the skies opened up and the rain came pouring down. It had been several minutes, so I was hopeful that Grammy, Bob and Dorrie were already back at the car; there was no hope for me, of course, so I didn’t bother to hurry, and by the time I did get to the parking lot I was completely soaked.

Unfortunately, so was everyone else, because they had stopped to close out our locker rather than head straight for the car. We sat in the car for a few minutes, collecting ourselves, before we went to grab some food and head back to the hotel to relax for a couple of hours.

It was the right choice for sure. We all attempted to dry off, we got Dorrie a meal, and we all had a chance to decompress. And no one fell asleep!

It was a little hard to get ourselves moving again to go back to the park, since some of our clothing was still a bit damp, but we found the motivation and piled back into the car. We arrived in time for the final showing of the Elmo Rocks! stage show, which Dorrie liked very much at first, since it involved singing and dancing and familiar tunes (she broke into a big smile for the Sesame Street theme). Toward the end, when it got more “rockin’” she started to get overwhelmed by the noise and was less happy with it, but she managed to come through without a big meltdown or needing to come out of her chair. This show also turned out to be the one with the most audience participation: some on purpose, like having the kids stand up and dance at the end; some not so much, as when more than one toddler began to rush the stage, mesmerized by Elmo.

[Dorrie knows the song!]

At the end, Dorrie was the lucky recipient of some more attention from the characters. Cookie Monster came down and was able to spend a surprising amount of time with her, and then even Elmo came down to say hello. Elmo didn’t get to stay as long, as he was soon overwhelmed by all the other (more mobile) little kids and beat a retreat backstage.

[Cookie Monster stops by]

[Posing with Cookie]

[Elmo is rushed]

There was still some time to kill after the show, so we went back for one last ride on the carousel. There was a nice breeze blowing every time we came around one side, and Dorrie was very happy every time it blew in her face. She enjoyed this ride as much as she had the others. When it was all done, we started back toward the front of the park to stake out a spot for the parade.

[One last ride]

We ended up near the topiaries at the entrance of the park. Now, as it turned out and which we didn’t know, a spot further along the parade route would give you more to see, because the parade stops, does a little dance, then moves a bit forward and repeats. So if you’re near the beginning of the route, the parade goes almost all the way past before the first stop.

In any case, we had a good spot and it got dark surprisingly quickly — it was pretty dim by the time the parade got started at 9pm. Dorrie was starting to get kind of tired by the time it finally began, but she perked up at all the lights (which she loves) and the music was also a plus. The parade itself was very cool, and we got to see some characters we hadn’t seen yet in the park, like Murray and Prairie Dawn. But really the best part was after they stopped and began to do the first of their routines. Super Grover came right on over to say hello to Miss D, shake her hand and make friends. She wasn’t too sure about this — it was kind of hard to see, since he’s dark blue and it was dark, but she was mostly game. It was only after he left that she started to lose it: the music was pretty loud and I think she just got overstimulated.

[Watching the parade]

[Super Grover is super]

So I pulled her out of her chair, and Super Grover noticed and tried to come over and help. Which really was above and beyond, I must say.

D calmed down and the parade quickly moved beyond us after that, so we left. All in all, a very successful visit.

Back at the hotel, we had to get ready to leave. There was an astonishing amount of crap to pack up, not even counting Dorrie’s vent and associated supplies. She fortunately managed to fall asleep around midnight, and I was able to pretty much finish packing by that point, so Grammy helpfully moved some stuff down to the car. I would have been happy to lay down with her and get a bit of a nap, but for whatever reason her vent was determined not to detect her breathing and kept alarming every minute or so. I was a bit worried about how much noise it was making, so when moving her around didn’t help the sensor, I ended up sitting up and pushing the alarm silence for a couple of hours until it was time to head out.

Atonishingly, Dorrie stayed asleep when she was transferred into the car. Less astonishingly, she woke up about an hour later, while we were still in New Jersey, and remained awake for the entire rest of the ride home.

Bob and I spent the day collecting things together, so when Grammy arrived around 10pm, packing up the car didn’t really take all that long – it was done by 10:30. The natural thing then would have been to go over everything and make sure it was all in the car, but everyone was kind of keyed up at that point, and we’d spent the entire day thinking about packing and lists so it just seemed like too much work. We got Dorrie into her carseat and set off almost exactly at 11.

We hadn’t gone all that far when I realized the first item we had forgotten — the melatonin. We’re still not convinced of its effectiveness in Dorrie’s case, but at least it’s doing something, and being in the car in the dark kind of freaked her out a bit. She was very flaily for the first hour of the ride, even with me trying to hold her hands, until I hauled out her weighted blanket and put it over her arms and legs. She calmed down a bit after that, but I think she was still very concerned about what might be happening.

We drove on, and about two and a half hours into the ride, Bob realized the second item we’d (he’d) forgotten – his CPAP machine. This was the biggest problem, and frankly if we hadn’t been in Connecticut when we figured it out I would have said we were turning around to go get it! Unfortunately we were way too far along for this course of action, and though we even seriously considered whether having someone mail it to us would be worth it, in the end we just decided to deal with the situation.

Everyone was pretty tired by the time we finally arrived at our NJ hotel and started unpacking, especially Miss D, who had managed to sleep for ~1 hour of the trip. It was as we pulled into the parking lot that we realized item #3 which had been forgotten: Dorrie’s handicapped parking pass. After everyone swore a few times, we got her and everything upstairs with the assistance of multiple luggage carts and more than one trip back down to the car. Then she and I sat on the sofa together while Bob got the safety rail on the bed and assembled her vent. Happily, the bed turned out to be big enough for me, Dorrie and Grammy to all fit into comfortably, so daddy could have the entire pull out sofa upon which to find a position where he could rest and hopefully not snore. Everyone was asleep by 5am.

[Not a morning person]

Since the whole point of this trip was for Dorrie to enjoy herself in as relaxed a fashion as possible, we let her sleep pretty late, and she was exhausted enough to even sleep through an emergency diaper change around 9am. We had reservations for a character lunch at 3pm, but we were otherwise unencumbered with plans for the day, so the schedule could be flexible. We all finally rolled out of the hotel between 1:30 and 2pm. It was brutally hot when we got to the park (after overshooting the parking, since we thought, you know, there might be a big sign that said turn here…) but it was also July 5th and mid-afternoon, so there were plenty of spaces available. Possession of the handicap pass would have gotten us probably 100 yards closer, but it fortunately didn’t turn out to be that big of a deal to have forgotten it. The clips we bought for the handle of Dorrie’s chair worked brilliantly — we were able to attach pretty much all of our luggage to the chair so everyone could walk holding practically nothing.

By the time we got into the park, we had only about 10 or 15 minutes before the Dine With Me was supposed to begin, so we found a small patch of shade and waited for the doors to open. One thing which I found very smart about Sesame Place was the thought given to shaded and air conditioned areas — there were very few places where standing in the direct sun for a long period of time was necessary (most of those were in the water park where D cannot go anyway because of her trach). For instance, I was afraid the character lunch would be outside under a tent thing — but in fact it was in a nice air conditioned cafeteria where everyone was able to be very comfortable.

The food was fine, but what I can’t say enough about here is the people who play the characters. Without exception, they were absolutely fantastic both of the days we were at the park, starting with this character lunch. They went out of their way to come over to Dorrie, since she couldn’t approach them, and they were very friendly and not too aggressive about it either. They were perfectly willing to spend quite a while with her to let her warm up to them, which we really appreciated. The Count, Abby Cadabby and Cookie Monster were all just great, and we couldn’t have been more pleased with how the Sesame Place experience began.

After a very pleasant, unhurried experience with the lunch, we did a bit of shopping and then headed out in search of the Elmo photo area, where we had pre-paid for a picture. It turned out that both Elmo and Big Bird were there, so in a last minute shuffle we got Dorrie’s speech valve on and took her out of her chair so the picture could be with her, mom and dad. We got shots with both Elmo and Big Bird, but one of the Big Bird ones was the best, so that’s the one we took home with us.

Then it was time for Grammy and me to hit the store again, and for Dorrie to eat some more of her meal. Her feeding schedule was the only part of Tuesday that didn’t really go as smoothly as we’d planned. Anticipating the heat, we’d already decided to knock her down to three feeds instead of four and add in extra water to replace the missing meal. But we really didn’t want to be dealing with pukies in the park, so we were pretty jumpy whenever she started to act at all gaggy, which she had started to do during the character lunch. We ended up dumping quite a bit of her meal and mixing what little was left with some apple juice we acquired from our waitress. Even so, having the pump on while we were moving around in the park just did not work as well as I’d hoped. She and Bob sat at a table in one of the restaurant areas while the pump was running and when Grammy and I got back with our purchases, we all had a drink while Miss D digested.

We took her over to the first aid station to change her diaper and then, since she was still wearing her speech valve, she got a chance to ride on the carousel. The breeze was nice, and she loves the sensation of being moved around, so it was a big hit.

[With mommy]

[With daddy]

[More mommy]

Grammy and I were still in search of more merchandise though, so next we went over to another of the gift shops and got Dorrie a new pair of shoes. It was around then that we found out we could get a special pass for her chair so that she could cut to the head of all lines — the park info just said ‘accessibility guide’ which may be code for this sort of thing, but I guess I just don’t speak sekrit park language. Since the park was quite a reasonable size, we headed over to the front of it to pick this up, then went back to try and catch the next showing of Elmo’s World Live, where, spotting D’s chair and her new orange ankle band, they waved us right on in to the front row.

[Dorothy and Dorothy]

Dorrie was pretty tired and worn out by this point, so she wasn’t as pleased by the show as one would have hoped, but she behaved (as soon as I took her out of her chair to sit on my lap). We were all wiped out, so we left pretty soon after, grabbed some fast food, and headed back to the hotel. Sadly for all of us, D fell asleep just minutes before we got back to the hotel.

[Wiped Out]

We all got to eat in peace, but a nap at 7pm was not conducive to an early night which is what I had been hoping for. We had to wake her up by around 8:30 or 9 so she could have at least one full meal before bedtime, and she could not be convinced to sleep again until after 2am.

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.

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.

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.

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.

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.

So we made reservations at the same place as before. And then, on Thursday… Dorrie started acting like she had a cold.

I swear, this place is cursed.

But fortunately for everyone, it was a very weak though insanely contagious cold. Everyone who caught it felt better in about 48 hours or less. Unfortunately, in addition to Dorrie, she managed to spread it to mom, dad, grammy and one of her nurses. So even though mom wasn’t feeling great on Sunday, we all still decided to keep the date.

The restaurant was nice, and the food was quite good. Though Dorrie decided she didn’t really care to be there and spent the entire meal in mom’s lap. Which meant that it took mom about 10x as long as everyone else to eat, and grammy got a chance to cut up some meat for the first time in many years.

After we ate, we headed over to Uncle Jonathan’s place which, even though he moved in there about 3 years ago, none of us (meaning me, Bob or Dorrie) had ever seen. It was very nice. Though Dorrie found it not interesting enough to stay awake for. (And neither did daddy.)

On the way home we finally managed to locate the mythical Sonic. (You have no idea how many times we’ve tried to find this when we were in the area. It’s fairly pathetic.)