DorrieDorrie

Sunny Days4

Dorrie’s last food is generally given at 9pm and takes roughly 30 minutes. Due to the risk of pukies, we don’t allow her to go to her bed until 11pm – so 11pm became our planned departure time. Google Maps told us the ride would take about 5 hours, so we were really hoping that she might fall asleep for most of the trip.

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.

Posted by mom, under our little witch, tales of interest