15
July
2011
For our second day at Sesame Place, we had made some modifications to our plan. The idea this time was to feed Dorrie at the nice, cool hotel room. Then just bring some juice with us to the park to keep her hydrated, not even bothering with the pump and bag and all that setup. If we could get over there early enough, we could spend a few hours, come back for a break (and meal) and then return to the park for some last minute fun and to watch the parade at 9pm.
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.
Posted: our little witch, tales of interest
12
July
2011
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: our little witch, tales of interest
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
20
June
2011
After our Easter postponement and then mother’s day, we waited a few weeks before trying to ‘reschedule’ Easter. In the end we decided to do it the same day as Father’s day, though as out of it as we all are, we didn’t realize it right away.
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.)
Posted: our little witch, tales of interest, 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
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
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: moving forward... or not, our little witch, tales of interest
7
February
2011
One change we made when we started having Dorrie sleep upstairs was a rededication to sticking with her feeding schedule during the day. When she was downstairs it was easy to let it slide — by the end of the day, we were off by as much as 2 hours, and she’d be getting her last meal, scheduled for 9pm, around 11pm. But we as we would much prefer her not to throw up upstairs (so much harder to clean on carpet and bedding!), she needs to be done eating for at least 90 minutes and preferably 2 hours before she’s allowed to go up to her room. So in the interests of getting her upstairs before 3am, adherence to the schedule is at an all time high.
How is this relevant to Christmas? Well, as her predilection for puking means that she needs to have an empty stomach when she gets into her car seat, the promised visit to Grammy’s house required some serious thought as to scheduling. We eventually determined that the best choice would be a 24h visit — arrive around noon on one day, and leave not later than noon on the next. That way a full feeding cycle would take place at Grammy’s house and we could depart before the next one began.
After some discussion, we decided that we’d go over to Grammy’s at noon on Christmas Eve, spend the night, and leave at noon on Christmas Day. It would be the first time Dorrie has ever spent the night somewhere other than our house or the hospital, and it required quite a bit of advanced planning!
Early in December, we did our first test: could Dorrie manage a whole 36 hours without humidification. Our lives would be made much easier if we didn’t have to bring along the humidifier unit that goes with her ventilator. So we tried her out at home, and though she was pretty suction-y by the time it was bedtime on the second evening, she did fine. Check.
Then we had to consider the sleeping arrangements at Grammy’s house. Should Dorrie sleep upstairs? With whom? Sleeping with either mom or dad would relegate the other parent down to the sofa. Sleeping with Grammy would mean mom and dad might have to get up a bunch of times anyway. (We don’t allow her to sleep on her own — she has such poor control over her arms that she tends to knock her tubes apart or accidentally grab at her trach/vent tubing/g-tube while she’s sleeping, and it’s much easier having someone right there to stop her before she injures herself.) And where would the vent go? Did we need to bring the IV pole it usually stands on?
Anyway, with much trepidation and two very stressed parents, we packed up Miss D and headed over to Grammy’s house on Christmas Eve. We got there in good time, got Dorrie eating her lunch, and then sat down to ours. Unfortunately our meal came a little soon after hers, and getting put into her chair didn’t sit very well with her stomach — so we got to clean up some pukies before eating.
That was really the worst mishap of the day, though. The afternoon and evening were very pleasant and Dorrie, though occasionally fussy due to being tired, was a pretty good girl. It was a real relief to know that we didn’t have to pack up and go home still that night, even though both of us were pretty nervous about the night to come.
Dorrie fell asleep downstairs and as it had been decided that she’d sleep with Grammy, we brought her up there and got her settled in to bed with her suction machine and her vent sitting on one of the dining room chairs. She seemed pretty well asleep at that time, but she woke up after a couple hours and decided to have a long babbled chat with Grammy (which we got to listen to over the monitor). Eventually daddy went and got her some melatonin and she quieted down and went back to sleep.
She got up very early (for Dorrie) in spite of the poor sleeping the night before, so we all went downstairs and opened gifts.
After that, it was time to go! We got home so early, everyone had baths, and mom and dad ordered Chinese food. Even though it was a good time, we decided that next year, Christmas is going to be at our house. So much easier for Dorrie to be at her base of operations.
[Dorrie's first gift]
[Uncle Jeff's guinea pig came over to have a visit.]
[Dorrie thought Mello was very interesting, and kept trying to touch him.]
[Mello, tired of having his butt smacked, looks for an escape route.]
[Safe!]
[Dorrie takes a rest after the first round of opening presents.]
[Having fun with Uncle Jonathan.]
[Reading a new book with Grammy.]
Posted: our little witch, tales of interest
26
November
2010
So, Thanksgiving!
The last couple of years, Thanksgiving has been a somewhat annoying affair, with the meal coming as it does in the middle of Dorrie’s eating period. So the first year, we stayed home so as not to get horribly off schedule, to avoid germ exposure, and for general sanity — I believe I went over to mom’s house for dinner and then she and I both came back here so Bob could eat. Last year we were still in swine flu lockdown after all the drama trying to get Dorrie her shot. So we pretty much did the same thing.
This year Dorrie seems much stronger, is rather more flexible in her food schedule, and is generally more easily portable for us. So we decided to resume a previous tradition, which was to go out to a buffet on Thanksgiving. Pros: no one has to cook, no mess to clean up; Cons: no leftovers. But the Pros are really good ones. We found out about a buffet here in Nashua and made early reservations so we could get in and out without being too crowded.
The plan worked out fantastically. We got in, got our seats, took turns going up to the buffet. One might have wished for a bit more variety in terms of vegetables, and maybe a slightly higher quality cut of beef, but overall it was really good and there was plenty of food.
Uncle Jeff and Uncle Jonathan came too.
Uncle Jeff had plenty of time to text people.
Dorrie chewed on some turkey.
She chewed it up good.
After the meal, the boys headed off to do their own things and Grammy came back with us so we could start shifting things around in the living room. But first we tried to take some pictures of Miss D in her reindeer hat. Unfortunately most of the ones taken with our camera came out kind of blurry for a variety of reasons, so we had to make plans for a second photo shoot at a future date.
Then we did a bit more work on her room, namely pulling all the garbage bags and tape up which were protecting the wainscoting and the carpet while we were painting the mural. In the living room we moved the oxygen tanks out of the way (they’re coming Wed to pick them up), moved Dorrie’s toy bin (aka the pack and play) out of the way, moved some bins of medical supplies out of the way (sensing a theme?) and put up the tree. There were a few concerning moments right after we plugged it in — some of the lights didn’t come on, so we thought we might have to go out and get a new one (it’s a pre-lit fake tree which is about the same age as Miss D. It’s also very low end, so it’s probably in its twilight years.). Fortunately after they warmed up a bit most of the lights did come on, so we deemed it good enough to decorate.
Dorrie was fascinated by the tree when it appeared, and spent a good portion of the afternoon just staring at it. I’m sure she couldn’t fathom why the heck a tree had appeared in her house.
Today the cleanup and decorating continued, with the end result that we got some lights up outside and the living room looks like a disaster area. I hate that a big clean and declutter always starts off by making things way worse than it was!
Posted: moving forward... or not, our little witch, tales of interest
