The Daughter Chronicles

Wednesday, April 18, 2018

Not a quinceañera to celebrate!

Today is 18 April, which means it's time for my annual post about Mia's accident and her progress over the past year. Today marks the fifteenth (!!!) anniversary of her accident, and as always, we're glad she's alive and (relatively) well, even though it's a sad day for both of us, because we both remember the date with such clarity.
But we also know how lucky we are, because Mia is a happy and healthy kid, and she's not, you know, dead.

I mentioned last year that I wanted to post more often, and since then, I wrote on this blog ... once. About our vacation in June. As the kids get older, they settle into patterns, and not a ton of new stuff comes up, at least for Mia. Norah is dealing with junior high drama every day, but as it's junior high drama and often (but not always) as ephemeral as smoke, I don't write about it. But I will write about Mia's year, as there have been some things of note.

Of course, she went on vacation, which you can read about right below this post. We're fairly confident that she enjoyed herself, even though she wanted to watch television most of the time. But we did get her out and about a few times, and she did play in the ocean a little, so that was all right.
She went to her summer camp, which she really likes, and even though it's in Mesa and we're now living in Chandler and it's probably a good 15-20 miles away, we're still sending her there this summer, as well. They don't care where you live as long as you can pay them! It's nice for her to get out of the house, and it's so hard to figure out what to do with her, so camp is a great benefit. And, of course, the people love her because she's awesome.

She also started high school, so that's been a transition. Because of her birth date (30 August), she comes in before the cut-off date for the grade (1 September), so technically she could have started 9th grade last year, but then she would have started when she was 13, and we had already anticipated that and kept her in 6th grade for two years to get her a bit closer to her peers in age. It doesn't really matter what "grade" she's in - she has an Individualized Education Program (IEP), so she follows that for her curriculum, and she'll be in school long past her 18th birthday, so keeping her an extra year in elementary school didn't really matter, and she's not 15 and in 9th grade, which lines up perfectly well (she'll turn 18 a month or so into her "senior" year). So she started high school, which meant a new school and new teachers that we had to train! It's been a pretty smooth transition, to be honest. Her high school has a big Special Ed. program, with a lots of aides and a program in which some students come in and help out, so there are plenty of people around besides the students. When we met with the Special Ed. coordinator, we were a bit apprehensive because she told us that they don't really do one-on-one aides at the school. It's in her IEP, so legally they have to give us one, but she assured us that there are so many aides and teachers that we wouldn't have to worry about it.
We decided to give it a little while at the start of the year and if we thought she wasn't getting the attention she needed, we'd push the issue. Happily, it hasn't been an issue. We've already had her IEP meeting for the year, and we discussed that topic, but her teacher put our fears to rest, because she always has someone helping her, just not the same person all the time, but everyone has been trained in dealing with Mia. Everyone knows how to change her and get her feeding together, and the biggest thing we worry about is her behavior, because if she has a one-on-one aide, we've seen that over time, the aide feels more comfortable making sure Mia is behaving. It doesn't seem to be an issue this year, thought - either Mia is acting much better or everyone knows how to shut her bad behavior down. Either way, whatever they're doing is working. She seems very happy at school, and she has a good mix of students in the class. Some of them are in wheelchairs, some aren't, some are much less verbal than she is, but many are far more verbal, and there are always plenty of either able-bodied aides or typical students around, so she gets to see a lot of people. As usual, she loves choir, and she's been doing a lot of other things, too. She's been making food, for instance, which she probably doesn't do a lot of, but I'm sure they're making sure she gets into it. They got a stander for her, and she gets into it quite often, which is groovy. We're working on getting a stander for her for our home, but that's a whole other thing that I won't get into right now. It's a giant ranting post on its own!

Meanwhile, her therapy is going well. She still has physical therapy and horse/swim therapy, but this past year she got a new speech therapist, which she hadn't had for a few years (we were on the waiting list!) and a new occupational therapist, which we also hadn't had for a few years. Her speech therapist comes to the house, but her OT is at her hippotherapist's clinic, so she gets two hours of therapy when she goes there. They hired the OT last August, and she knew Mia was looking for one, so we were able to get a good time - right after her horse/swim therapy. It's 25 miles away from our house, so it's a good thing that she can just stay there. Going out there twice a week would be annoying. Her OT has been working with a lot of things, but one thing she's been doing is getting Mia to use a knife, which we find very humorous but which is apparently working pretty well.
I haven't sat in with the therapist yet, because her parents are a distraction, but I'd love to see her using a knife, because I'm very surprised that she even tried it and that Mia is getting better at it.

She's doing pretty well otherwise. She keeps gaining weight, but very slowly, which is fine with us. The last time she was at the gastroenterologist he wanted her to gain some weight, but I'm trying to increase her feeding amount very slowly, because she can't work off fat so I don't want to her to get fat. She's eating as well as usual, which means she's doing fine but still doesn't eat nearly enough to get her off her feeding tube. She wants to sit a lot more than we can let her, because she has outgrown the chair she used to use. She can't really sit on it without leaning too far forward, and we can't put the straps over her shoulders so she twists in the seat and just looks miserable (even though she claims she wants to sit there all the time). So she has to stay in bed a lot, because it's a pain to bring her wheelchair into the house every day (and then get it back out every day). We can do it, but for when she's not in school for longer periods, like during spring break and over Christmas. As I noted, we're trying to get a stander, one that starts as a chair but converts to a stander, but things are going ... slowly, to say the least. When she gets it, she can hang out in the living room more often and watch all the television she wants. She's still having seizures every once in a while, but only one freaked us out - about a month (or maybe six weeks?) ago, she had her worst seizure ever. We weren't even sure what it was - we heard a weird noise and thought Norah was schlumping around upstairs (as she does; she's working on her sullen teenager act). We called up to Norah, but it wasn't she, so we went into Mia's room, and she was having a horrible seizure. It lasted far longer than any she'd ever had - at least a minute, if not two - and we were unable to calm her down for a long time, which we usually can.
She was breathing heavily and moaning and twitching quite a lot, and she certainly wasn't focused on us in any way. It woke her up, of course, so Krys stayed with her for quite a while afterward, calming her down and getting her back to sleep. It wasn't fun, but it hasn't been repeated. We're still not sure why she has random seizures, because there's no real rhyme or reason to what sets them off. She's a lot better than she used to be, but we were reminded that she's still not in the clear completely.

So that's our update on Mia. She's still a wonderful kid, although she still has impulse control problems so we have to remind her constantly not to grab and scratch us, which really hurts (she thinks it's hilarious). She's getting a bit better at using full sentences, although she still prefers one word commands. Occasionally she'll say something that's amazing, with a complete sentence and words she doesn't often use, and we'll be dazzled, but it never lasts. She's getting harder and harder to lift, because she's still gaining weight (even if it's slow, it's still inexorable) and I'm getting older, but for now, I can still lift her, so that's fine. She's enjoying school, and she always happy, so while it's frustrating that we can't find out what's really going on in her head, she seems to enjoy life. I guess that's all we can ask for!

As always, if you haven't read much about Mia, I will provide links! Here's the story of her accident. I've been doing annual updates every year since: 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016, and 2017. I haven't posted here since June, because I stink, but Mia should be getting her new chair soon, which will definitely rate a post, and I keep meaning to rant about the horrors of junior high as experienced by Norah. We shall see. Thanks for reading, everyone!

Sunday, July 02, 2017

Going on vacation with Mia is like mounting a major military operation!



On 2 June the family went on vacation for the first time as a complete unit in a long time. I guess the last time we did something like this was 2014 when we went to San Diego, but we drove there, so airplanes weren't involved. We went to Pennsylvania in 2012, but we stayed at my parents' house, so hotels weren't involved. I can't recall the last time we flew somewhere and had to stay outside of a home with Mia, but we did it this time! My parents' fiftieth wedding anniversary is this year, so we decided to go on a whole family vacation. Which they paid for, I might add. Yeah, my parents can be pretty awesome.





They decided to take us on a Disney cruise in the Caribbean, so it would be them, the four of us, and my sister and her two kids (she's divorced). Whenever we take Mia anywhere, a great deal of planning is involved, and this time was no exception. My mom made sure we had a wheelchair-accessible stateroom, and she called ahead to make sure that we could get from the hotel on Saturday morning to the ship, and Krys did a bunch of research to find out what Mia could actually do onboard. It turns out, not a lot. Disney is quite good with special-needs kids, especially at their theme parks, but I guess ships present some unique limitations, and a kid like Mia, who can't walk and can't even stand and isn't potty-trained, is someone they're not really equipped to deal with. She couldn't go on shore excursions because her wheelchair doesn't collapse and therefore wouldn't fit anywhere. She couldn't go in the pool because she isn't potty-trained. She wears a swim diaper and has never, as far as we know, gone in the pool, so Krys planned to take her in anyway, because we figured she'd be fine. We did assume she'd want to watch a lot of television, so we weren't too bummed that they weren't better at accommodating her, but it was still kind of annoying.





Mia hadn't been on a plane since 2012, so we weren't sure how she'd react to it, because when she was younger she flew like a champ. We were able to get the bulkhead row, because Southwest let us on first and they don't have assigned seats, so she could stretch her legs a bit. She likes to sit by the window, and I sat next to her while Krys and Norah sat in the row behind her, because Mia will not act very well if she can see Krys. She wants food or DVDs all the time, and will not let Krys relax. With me, she's more placid (probably because she's learned that I can ignore her a lot better than Krys can), and she was very quiet for the entire four-hour flight. She just looked out the window most of the time, or she looked around the cabin. She still flies like a champ!



When I write that going on vacation is like mounting a military operation, I mean because we have to bring so many supplies. One suitcase was taken up with Mia's diapers, medications, and feeding pump, while I put some of her formula and the bags we use to feed her in my suitcase. When my parents were here in March, they took home an entire case of her formula so they could drive it down to Florida instead of making us put it on a plane. We also needed her portable DVD player and the case for the individual DVDs, which isn't very big but still takes up space. So we had quite a lot of luggage. My sister decided she didn't want to check any bags, so she just brought carry-on items, and my parents drove down, so they could leave things in their car if they wanted to. We looked like we were going on a Grand Tour of the Continent in the 1920s, by contrast. Good times!



We stayed the night in Port Canaveral, and in the morning we got ready to go. That's when we hit our first snag. The shuttle to the ship was supposed to leave at 10.30, and it was about 10.15 when my dad called me and said it was ready to go and where were we? Of course, it took us a bit longer to get ready than it did them, but we thought we still had time. I guess the shuttle driver was getting a bit antsy, so I took Mia down (I was ready to go, because I'm a dude) so that he could see we were coming. Apparently what the hotel meant by "wheelchair accessible" for their shuttle was that they had room to put Mia's chair in with the luggage and she could find a seat in the shuttle (after I carried her on board, of course). Well, that wasn't happening, because they overbooked the shuttle and we were the last ones to arrive. I got on the shuttle, found my mom, and told her she had to come with me. She asked why, and I said, "You're going to want to yell at someone." There were no seats left on the shuttle, and the driver was going to suggest that some of the kids sit on laps. Even that would have been a problem for me and Mia. I suppose I could have been okay with putting her chair in with the luggage and having her sit in a seat (that's what we did coming back from the ship a week later), but on my lap? I don't think so. So we went back into the hotel and asked what they could do for us. They called a taxi service that actually had a lift and could put Mia in the van in her chair, and we made it to the ship a few minutes after the rest of the family did. I don't know who my mom yelled at, because by then, I was outside looking out for the taxi.



Disney lets people on the ship in stages over several hours, and Krys had read that you should make sure you have what you want on you on that day because you might be onboard for a few hours before you can get in your room. She also read that if you want to go on the water slide, you should do it that first day or on a port day because the line is so long otherwise. So I was wearing my swim suit and a T-shirt, because I wanted to go on the water slide (which wasn't that great, so a long wait would have been disappointing). So we went up to the upper decks and went on the slide. Yay, vacation! We got on before my parents and sister, but we eventually found them, and then we got into our staterooms. We foolishly did not take pictures of the rooms, so I can't show the difference in size between the accessible one and the ones my parents and sister had. Theirs had a narrow corridor slightly wider than the door that had closets on one side and two small bathrooms - one with a shower, one with a toilet, both with sinks - on the other side, which opened into the living area, which was only slightly wider. Our door opened automatically (after you passed your key card across the access panel) and there was no corridor, just the room. The bathroom was probably as big as the other two combined, and it had a large shower with the seat that accessible showers have. The living area was wider than the other rooms, as was the space for the kids to sleep. It had a Murphy bed, a sofa that converted (Norah slept in the former, Mia the latter), as well as space for a bunk. The other rooms didn't have the Murphy bed. It was about 299 square feet while the others were about 246 square feet. That felt like a HUGE difference, believe you me. You can check out the staterooms here, if you're interested. Everyone was very envious, but of course we always have a ready-made answer for that: We'll take a healthy kid over any of this. (We don't say it bitterly, because we're not, but it's something that we always have to remind ourselves about - yes, we get some perks due to Mia, but the cons FAR outweigh any little pros.) So the stateroom was neat. We had our own personal porter, as well as our own personal servers at the restaurants, so that was nice, because we got to know them a little and they got to know us. The porter was bringing up our luggage over the course of the afternoon, and I noticed that everyone in our room was getting their suitcases except ... me. Yes, I got my carry-on bag with all my books in it (I planned to do a lot of reading on the cruise!), and we got our garment bag with our fancy clothes in it (there was a formal night on the cruise), but my suitcase with all my other clothes ... yeah, nope. I didn't fret too much about it, because there are a lot of people on board, but the afternoon went on, our departure time got closer, and I still had no luggage. I asked the porter a few times about it, and he said he hadn't found it yet. Finally, about 4.30 (before the ship left port), I went to the lost-and-found and reported it, but they didn't have it on hand, although they said they'd look for it. I told my mom that I'd be wearing a swimsuit and T-shirt to dinner that night and possibly for the next few days before we got to our first port of call, where presumably Disney would have to fly my luggage. We left the port, and I actually did start to get a little worried. Finally, around 7, I went back to lost-and-found, and they had my suitcase. All was well!



We left Florida about 5, which turned out to be excellent timing. The SpaceX rocket was launching at about the same time, and it had been delayed by weather from two days earlier, so we were in perfect position to see it - Kennedy Space Center was a few miles away, and we had a clear view (well, almost) of the launch pad. It was pretty cool, but even cooler was a few minutes later when it came back to Earth. So that was a neat way to kick off our vacation.









The cruise was a lot of fun, despite the minor difficulties. Mia spent most of the time in the stateroom, because it was so loud on deck. We took her up there on the first day to see if she'd like it while she was watching her DVDs, but we could barely hear each other talk, much less her DVD, so we kept her in the room. The television had a bunch of movies on demand, so some of our DVDs were superfluous, but that was fine with us (I also got to watch Zootopia - which was pretty good - and Captain America: Civil War - which was a bit bloated - so that was fun). We did take her to breakfast every day, and she ate lots of Froot Loops and doughnuts, but we didn't take her to dinner because our seating was at 8.15 and she wouldn't have eaten anything and she would have been too tired for it. The porters usually took down the beds and fixed the rooms up while guests are at dinner, but our porter learned to come early because we were putting Mia to bed between 6 and 7. She did go to see two shows - one an Aladdin one and the other a general round-up of Disney tunes - and she loved both of them, so that was pretty keen. She also went to the beach on Disney's private island, but more on that later. So we think she had a pretty good time.



We were at sea for the first two days, and we found out that my sister's kids are really boring. Her son is 15, and he's a fairly typical 15-year-old, especially one with divorced parents. He's a nice kid, pretty smart, but he can be a sullen jerk, too, and he didn't want to leave the room because ... well, I don't really know why. You're on a ship with a bunch of teenagers and very little parental supervision - take advantage of it, man! He had downloaded a bunch of stuff from Netflix before he left, and he watched it on his phone. There was no internet access on the ship (well, there was, but you had to pay quite a hefty fee, and my sister wasn't going to do that), which I thought might make him die a slow, painful death, because he couldn't find out the latest news about whichever video game he was interested in! So he spent about 2/3 of the time in the cabin, I swear. Whatta maroon, am I right? Meanwhile, my niece gets along famously with Norah, so they had fun, but they still didn't take advantage of almost anything on board. My niece didn't want to go to the "tween club" because she claimed kids drank there. Yes, the raging 12-year-old alcoholics would destroy her innocence! She claimed we didn't know what kids her age got up to, and I said that I certainly do believe that some 12-year-olds drink (as depressing as that is), but I tend to think that Disney has a pretty good handle on not allowing it to happen on board their ship. But whatever - she didn't go to the club, so neither did Norah. We had to tell her to get out of the room a bit more than I would have liked, but at least she did get out, go swimming, go on the water slide, and do some exploring. She was annoying because she didn't take enough advantage of what was going on, but she had a great time, so that's what matters.



On Tuesday we arrived in Tortola in the British Virgin Islands, our first port-of-call. My nephew was happy because he had heard that there was an internet café on the island, so he set out to find it. The women went shopping, so my nephew, my dad, and I took Mia out for a short walk to find said internet café. Tortola is not built for wheelchair access, in case you're wondering. The sidewalks are very narrow and the curbs are very high, so it was difficult to get her onto the sidewalk and almost pointless to do so because her chair wouldn't fit too well on them. On "Main Street" (which is very narrow and not in any way "main") in Road Town, the capital, I had to walk on the street because the sidewalks were almost non-existent. We eventually found the location of the internet café, a bookstore that was ... closed. Oh well. Mia was getting a bit grumpy, so we headed back to the ship, but my nephew still wanted to see if he could get on the internet, so we figured the bookstore would open at some point, so my dad took Mia back and we headed back out. The bookstore was open by this time, but they told us the internet café was upstairs in an Indian restaurant. The place was tiny, but dang, the food looked good (I wasn't hungry, although I did buy those Indian doughnuts - I guess they're called gulab jamun?), and he got to look at the internet for 20 minutes or so. Huzzah! Road Town is a typical Caribbean town, which means it's nice but a bit ragged, and I would not want to live there at all with a special-needs child. We had a nice day, though.









We arrived in Charlotte Amalie, the capital of the U.S. Virgin Islands on the island of Saint Thomas. Krys had signed us up for a shore excursion, so off we went on a snorkeling voyage. My sister had signed up, too, and amazingly, her kids went along! We went out to an island that we weren't allowed to stand on (I assume it's a nature preserve), but we were allowed to swim around it, and we saw a bunch of sea turtles plus a bunch of fish and some manta rays. It was pretty neat. Then we went over to a cove where we could hang out on the beach. Norah LOVES the beach, so she was digging it, and Krys and my sister dug the free rum punch the crew/tour guides were pouring out (I liked the rum punch, too, but I quit before it started to affect me too much). Krys had to take a long nap when she got back to the room and therefore missed shopping in the city, while my sister had to leave dinner early and go to bed because she was feeling so terrible. Rum punch + humidity + lack of water = feeling crappy. Who could have foreseen that? Later that day we went downtown so the women - my sister and my mom, along with the girls - could go shopping, while my nephew searched for internet access once again and I searched for ... Dr. Pepper. Yes, I was on a quest for Dr. Pepper. Almost everything on the cruise was included - the food (unless you wanted to go to one of the fancy restaurants) and the fountain drinks. If you wanted alcohol or soft drinks they had in cans, that was extra. I was looking forward to endless Dr. Pepper, but when I got on board, they didn't have it. They had Coke products, which usually means they have Dr. Pepper, or at least Mr. Pibb, which is a poor but okay substitute for Dr. Pepper. The cruise didn't even have Mr. Pibb!!!!! They also didn't have Dr. Pepper in cans, which I would have happily put on our tab. So there I was, drinking Sprite like a sucker. I looked a few places in Road Town, but didn't find Dr. Pepper, but I figured the U.S. Virgin Islands might be a better place to find them. So I went into town with them to search, although I did actually want to see the town - Charlotte Amalie kind of looks like New Orleans, and it looks like a slightly nicer place to live than Road Town, although it's still not wheelchair-friendly at all. One of the proprietors of one of the jewelry shops (lots of jewelry shops in Charlotte Amalie!) told us about a bar on the waterfront that had internet access, and a nice lady from Texas who worked in one of the jewelry shops told me that a gas station near the dock might - might, mind you - have Dr. Pepper. My nephew and I made it to the bar, where he looked at his phone and I had a beer while waiting for the women. When they got there, we had three kids all checking their phones. Ah, this generation - so much fun. We couldn't stop at the gas station on the way back, because we were taking a taxi, but right by the dock was a strip mall, and I wandered around looking for a place that might sell Dr. Pepper. I found a Medicine Shoppe and lo and behold, they had cans of Dr. Pepper! I bought six of them and secreted them in our refrigerator, because I didn't want to drink them all at once (and I would have!). So that was a successful day.

















Dinner on the cruise was in three different restaurants, which we rotated through. The food was pretty good, although it wasn't great, which I suppose was to be expected. Our server was from Jamaica, and he was a very nice guy - the kids, especially the girls, really liked him - who made some good recommendations. On the final night, we ate at Animator's Palate, where we drew our own figures that were then animated. I drew Batman just to be a jerk, but they animated him just the same. On Tuesday night we went to one of the fancy restaurants for my parents' anniversary and left the kids to their own devices (the girls went to dinner at the restaurant, while my nephew - shocking! - stayed in the room), which was nice. There was also a "pirate night," which my wife and daughter dressed up for, but which I ... well, see below. Anyway, there was food available pretty much all the time, which was just a bad thing for my gut, but what the hell, right?













Thursday was another day at sea, and on Friday, we arrived at Castaway Cay in the Bahamas, which is Disney's private island. We weren't sure if we were going to take Mia on the island, but we decided to give it a try. We had planned, as I mentioned, to take her in the pool, restrictions be damned, but we hadn't, because the pools on board are tiny. It's kind of weird - they have space for bigger pools, but they're still very small. And, of course, they're packed with kids all the time, so we figured Mia wouldn't enjoy herself too much. But on the island, we could take her in the bay and she'd have more room. The day was actually not great in the morning - there was rain and lightning during the night, and it was overcast in the morning - which turned out pretty good because it wasn't too uncomfortable for Mia (it got hot and sunny later in the day, after I had taken her back on board). We got a beach wheelchair with the big wide tires, took her down to the shore, and she had a grand old time in the water. She was splashing everyone who came near her and laughing at Norah and her cousin, who were leaping out of the water near her. I took her back to the room after a while, but the rest of the family stayed at the beach ... except for my nephew, who didn't leave the ship at all that day. Sheesh.









We got back to Port Canaveral on Saturday morning and our vacation ended. I don't even want to write about our awful journey back to Arizona - I wrote about it on Facebook, but basically: we ran out of gas on the way back to Orlando because the rental car agency gave us a car with a quarter-tank of gas, which I thought would be enough to get the 40 miles from Port Canaveral to Orlando; the wheelchair line at the airport was really long and no one told us that actual wheelchairs could go ahead, so we stood in line longer than we needed to; the conveyer belt wasn't moving for long periods of time because apparently everyone in the line was bringing banned liquids in the carry-on bags because they think it's the 1990s; Mia got patted down, as usual, because she is apparently a terrorist mastermind; Norah's bag got pulled to be searched, because she is apparently a terrorist mastermind; I cursed very loudly at the TSA people because they pulled Norah's bag and just because of the whole mess that we were going through (Krys and I always joke about being put in "airport jail," but she was really scared that I would get arrested this time); and Mia threw up while we waiting for our luggage in Phoenix and on the drive home. So, yeah, not the best journey home. But that vacation was nice!







We don't get to do too much with Mia out of the house because it's such a chore to take her anywhere. We have to bring all her feeding equipment, her medications, her diapers, and her wheelchair, which doesn't fold up so it doesn't go too many places. She generally doesn't like doing a lot of things, and even if she does, she grows bored with them quickly, so the two shows she saw were about an hour long, which was about perfect for her. It always feels like a waste of money to take her places, because she doesn't really care to go anywhere, but I think she enjoyed the vacation, so we're glad we were able to go. Norah had a good time, too - she got to go to two beaches, which she liked a lot, and she got to see her cousin - so that was nice. My parents see the kids a lot for people who live 2000 miles away, but it's still nice that they got to hang out with them, especially because they didn't have to take too much care of Mia, which is something they've done for us in the past (they at in our room a few times when Krys and I wanted to do something - like snorkeling - but they didn't have to do too much). And it's always nice seeing my sister and her kids, even if they're sticks in the mud (as my mom would say).









So that was our vacation. We probably won't be taking another one with Mia for a while, so I hope she enjoyed it!