The Daughter Chronicles

Friday, November 09, 2018

The long, LONG saga of Mia's new chair

I've been wanting to write about Mia's new chair for a while, because it's something that we hope will help her out a lot. However, I didn't want to write about it until we actually got it, and that turned out to be … quite an epic, unfortunately. But it's here now, so buckle in!

Mia had an activity chair for several years. We didn't want to use her wheelchair indoors, both because it gets dirty out in the world and because it was difficult getting it into the house every day. An activity chair also gave her a bit more support, which a wheelchair didn't necessarily do, simply because it wasn't built for that. So we had a nice chair that she grew out of. You know, like kids do. A few years ago we realized we probably needed a new one. She had grown to the point where the button to which her feeding tube attaches was right at the level of the chair's tray, so it was very hard to feed her while she was sitting. We moved the arms of the chair down so that the tray wouldn't interfere with her button, but that meant that the tray didn't provide much support anymore. As she had grown, the harness that came over the top of the chair and supported her torso didn't reach anymore, so the tray was the only support she had.
Given her back and hip issues, she tends to twist when she sits someplace with not a lot of support. So she was sitting in her chair with little support, and she looked very uncomfortable because she was always twisted to the left a bit. Eventually, we stopped putting her in the chair and just kept her in bed most of the time, because she could stretch out and she had, naturally, a lot more support. If she was home for a long time - Christmas break, say, or summer after her camp ended - we would bring the wheelchair into the house and let her sit there. She really likes sitting in the living room instead of watching television in her bed - we think it's because she feels more in the middle of the action, even though we try to stay away from her when she's watching television, because if she's not watching the Muppets, she'll be bugging us to put on the Muppets. She really likes the Muppets these days, is what I'm saying (and Norah, through osmosis, has learned about a LOT of 1970s celebrities!).

So we started the process of getting a new chair. What we decided to get was a chair that has a crank attached to it that allows you to slowly elevate it into a stander. It has been some years since Mia had something to help her stand, and that was a gait trainer, which also helped her walk. She outgrew that, of course, and after about 2011, when her muscles started getting even tighter than they had used to be, we decided to stop worrying about whether she would walk or not. For some reason, in that year her muscle tone got really high, and it took over a year just to straighten her legs out. After that, it became clear that she would have problems just keeping her legs straight, much less going through the motions to propel herself forward, so we decided instead to worry more about just getting her upright, because then, at least, her legs would be getting stretched and she could be in different positions than just sitting or lying down. So the chair/stander we decided on functions as an activity chair, but you can crank it slowly so that she gradually stands up, but you can stop any time so that her knees are still bent and she's not completely straight, which would probably be very painful or at least uncomfortable for her. Eventually, we hope that she can stand up straight, but that's a long-term goal. So we found a good chair/stander, and off we went.

Early last year (in 2017, that is), I got a prescription from her pediatrician, because if you want equipment and if you want insurance to pay for it, you need a prescription from a doctor. Look, I liked her pediatrician very much (I use the past tense not because he's dead, but because he retired), and he knew quite a bit about Mia's condition. But he is just a general medical doctor, and while I appreciate his prescription, Mia's physical therapist actually has a doctorate but she couldn't write the prescription because … she's not a medical doctor? Maybe? I forgot to ask. But she knows a whole heck of a lot more about Mia's issues than he did. But that's neither here nor there for now, because he wrote the prescription and whenever we need anything from the clinic, they're quite good about getting it for her.
I took a long time to get around to using the prescription - the early delay in getting her a chair is definitely on me, sure, but I was the least of her problems. So around September of 2017 we submitted the request to our insurance company. We had the prescription, the order form for the chair and all the nifty accessories, and a three-page letter from her physical therapist explaining why she needed a new chair and why it had to be the kind that converts to a stander. Mia has been standing at school, but their frame is a hard piece of wood that they strap her onto and slowly raise, and because it doesn't gradually work on her knees, they can only tilt it to 30 degrees or so. So she puts some weight on her legs but not a lot. If we could get this chair/stander, we could slowly get her to put weight on her legs and possibly alleviate some of the twitching that her leg randomly engages in. It's not a seizure and it's not clonus (at least according to her neurologist), so we just think that she doesn't use the leg muscles enough and the muscle kicks in and twitches a lot. It tends to happen in spurts, where it will go on for a few days and then stop for a while, but it's very annoying to her and to us when it happens. We're hoping that the weight on her leg will cause the muscle to fire in a more productive way, and that's why we need the stander. Plus, she doesn't use her hips often enough, so we're hoping this helps her hips straighten out a little, as well. Finally, standing is just a different perspective from sitting, even if by just a little. Mia doesn't get a chance to get different perspectives, so maybe this will help a bit.

We actually weren't surprised when the insurance company rejected our claim the first time. I worked for a few years in insurance, and I know they tend to do that (it's stupid, but don't even get me started on how insurance companies work) and even some people who had done things like this told me to expect it. I learned later that part of the reason for it is that almost everyone who gets equipment like this is covered by secondary insurance, almost always through the state. So insurance companies reject the claim and the secondary insurance kicks in, and the people get their equipment and the insurance companies don't have to pay out anything. Everyone wins! Except, of course, that state-run insurance is taxpayer-funded, and while I'm completely in favor of government-run healthcare, I can see why people who don't need it would get grumpy about it. Secondary insurance should be just that, secondary, except that it's easier for people who have it to simply use it instead of fighting with their primary insurance providers. But Mia doesn't have secondary insurance, because her car accident came with an insurance settlement, so she doesn't qualify for state insurance. We don't think our primary insurance company was used to dealing with people who don't have secondary insurance. They would soon learn that it's hard to get rid of us!

So we appealed the ruling. They claimed that there wasn't enough explanation about how it was medically necessary, despite Mia's PT writing the letter about how medically necessary it was, and they also said that Mia hadn't done a trial with the chair, so how could they know it would work with her? To which I wanted to reply, "How can she trial the &%$(*#@ chair when she doesn't actually have the &%$(*#@ chair, you know?" But we did what we were told, like good little trained seals, and I contacted a representative of the manufacturer of the chair, who brought a model to our house so Mia could try it out. We took photographs of her and put them with our appeal. This is in early December by now, because that's when the dude could come out and see her.
So we have the original prescription, a second letter from her PT explaining in even more detail why it's medically necessary for her, and photographs of her hanging out in the chair. Off went the appeal!

We didn't have too long to wait, but only because I called the insurance company. We had already waited a few months, and they claimed they would be quick about it (not the last time I would hear that, and it was almost always untrue). I managed to get in touch with a customer service representative at the end of January. She checked and found out that they had just approved the chair that very day, so yay! Little did I know that this was really just the beginning of our problems. She said that they would send the paperwork over to the vendor, which is a local company. I said groovy and called them the following week to find out what was what. They told me that they had received the paperwork, but there was a problem. The base of the chair was covered, but none of the accessories. I said that's weird, as she needs the accessories we asked for, such as a tray (so she can eat while she's sitting) and footplates (so she can place her feet on them) and straps on the footplates (because she will lift up her feet if they're not strapped down) - yes, technically they're accessories, but for someone like Mia, they're vital. So I asked the person I spoke to at the company if she could get me a list of accessories that weren't covered. I did this for two reasons: One, so we could appeal it to the insurance company if we needed to; and Two, because if the list was small and manageable, we could pay for them with our own money. If they didn't cover swivel castor wheels on the frame, for instance, they were something like $100 - we could deal with that if it meant getting the chair sooner. So I wanted the list of accessories that weren't covered. Easy, right?

Ha! It took me several phone calls and emails to get a list of accessories that weren't covered, and several weeks. In fact, it wasn't until March that I got this list. Now, by this time in the process of getting Mia a chair, you should just assume I'm angry all the time. I mean, I get the first rejection, as stupid as it was. I get the delays with the appeal. Then, once they approved it, I understood if they might not pay for all the accessories. I certainly didn't agree with it, but depending on what accessories weren't included, I might understand. But from late January onward, I started to run into brick walls, so it's best if you just assume I'm angry about this all the time. I never lost my temper with any representative at either company, because I was never sure if it was their fault or someone in a different department, but I did speak rather sternly to some of them, usually just out of frustration. I mean, I'm calling and emailing ALL. THE. TIME. You might think they would cotton to the fact that I needed something done in a more timely fashion. But I guess not, and I digress a little. So now it's early March, and I finally get a list of accessories that, I remind you, are not covered by insurance. Let's take a look at that list, shall we?



I don't know how large that is (Blogger's preview function rarely shows things in the size they get published), but if you can see it, you might notice some things. The base is at the top. The accessories listed include, for a chair, a seat and a back. Yes, a seat and a back are counted as accessories for a chair. If you find this insane, you're a rational human, but you've also never worked in insurance! Those are all the accessories we wanted, mind you, so there was no way I was going to pony up almost $6000 for them - as I noted, if they had been a few hundred, we could have swung it. But this was ridiculous. I mean, why wouldn't we just sit her in a regular chair if we didn't need all those accessories? It's madness, I tell you, MADNESS!

So I called our insurance company, and here the anger really began to boil (even though, again, I almost always kept my cool when talking to them, and the few times I got angry I didn't really raise my voice, I just told them how stupid this entire process was). First of all, they told me that her prescription for the chair had expired, so I had to go back to the doctor and get them to renew it. That made me grumpy, but I did it. Then they told me that when I appealed the first rejection, I didn't sign the authorization form saying that I was the person who could speak for Mia, and because she was older than 13, I had to do that. That made no sense - she's not 18, so she's not an adult, so I don't know what 13 had to do with it. The problem was that when we first submitted the request for the chair, her PT actually sent the stuff in, because her letter was the final thing we needed to do, so we gave it to her to send in. So her name was the one attached to the request, but then, when we appealed it, I did it, so they needed me to sign an authorization form. Actually, they wanted Mia to sign an authorization form, and when I heard that, I laughed at the dude telling me this. I told him Mia can sign things, but her signature doesn't look very good, and she won't have any idea what she's signing anyway. He actually told me that once I got the form (which he emailed to me), whatever happened after that in terms of people signing was not his business. Basically, whoever signed it would be fine. When I got the form, there's actually a place for a parent acting on a child's behalf to sign, so I have no idea what they were talking about. I emailed it back, and that small bit of annoying business was settled.

By now it was May. Yes, the gears of insurance companies grind slowly!!!! By the middle of May, the customer service representative who was assigned to my case said they had everything they needed. Ha! So the appeal process went forward, and I was pretty confident about things.
I mean, we had explained why the accessories were necessary, and if you're going to give us a chair without a seat and a back, I can't really say anything. Of course, we went on vacation to England in early June without having heard anything, even though they said they would have an answer for us. I actually emailed the representative from London to find out what was going on, and she told me … that the appeal had been rejected. What? Exsqueeze me? Baking soda? It cast a bit of a cloud over our vacation, but there wasn't anything we could do about it then. So I girded myself for more battle when we returned to the States.

I got back and emailed the rep, basically asking just what the hell was going on. The rep told me that the standing frame was covered but everything else "exceeded basic needs." You know, like the straps to keep her sitting in the chair instead of falling forward onto her face. She suggested I write a personal letter telling the appeals board why they were full of shit (okay, not exactly, but explaining why she needed all the stuff) and that they would have a pediatric disability consultant take a look at it. In the meantime, I had received the official denial letter and it implied that at some point, most of the accessories were approved. So I began to have a sneaking suspicion that what was being denied was different than what had been in the past. I asked the rep about it, but she sent a list that matched what had been denied back in January, although she also implied that at some point, it had been approved. The mystery deepened!

By this time, it was July, and while I was still frustrated, I wasn't particularly angry. Then I got an email that made me angry. The rep said that I needed a new medical letter of necessity, or actually two - one from her pediatrician and one from the physical therapist. They both needed to explain that the chair/stander was necessary for Mia's daily living and that without it, her medical condition would worsen. Then she told me that one of the main reasons why it was denied the first time - THE FIRST TIME! - was because the PT had used the word "leisure" in her letter, describing how Mia could also use it for leisure activities. Now, the letter she sent was 99% about the medical benefits to Mia, but because she used the word "leisure," they denied it. It's a chair - of course Mia will use it to sit, which isn't all that strenuous an activity! Of course, just being Mia is difficult - she has two titanium rods in her back, after all - so even a "leisure" activity like sitting forces her to use her muscles more than it probably does you and me - but still - a "main reason" why it was denied? That was the final straw for me. I fired off a very angry email to the rep (even though I assured her I wasn't mad at her, because I wasn't - it wasn't her fault) about the word "leisure" and the fact that this was never told to us back in frickin' October when we got the first denial letter. I mean, it's stupid enough that they denied for that, despite a prescription from her doctor and a very detailed letter from her physical therapist about how it will help her medically, but to not tell us? That sucks. And I told her so. She was very sympathetic, and she said she was trying to figure out a way to override the necessity of sending more letters. So that was nice, even though, as I noted, we had already wasted nine months because they couldn't be bothered to tell us they didn't like the word "leisure."

As I noted, I had noticed that the approval was a bit vague, so I sent her another email asking if we could get clarification on what was approved. I didn't want to be arguing about small stuff, especially if they were being so contrarian. I looked at the order form and told her what supposedly came with the frame, not as an "add-on" but as just standard, because if the stander was approved, perhaps all that was as well. In late July, she got back to me with some good news. Apparently our insurance is through an employer group which sets the rules for the employees. She said that she got in touch with the liaison to those groups, and she explained the situation. If the employer group was willing to approve it for their employee (which is Krys, as she's the policy holder), then any prior denials wouldn't matter. The employer group's wishes override everything. She also noted that some of the problems seem to be from when the prior authorization had expired and what people were trying to add onto the prior authorization. I don't know everything about prior authorizations, but in case you haven't had to deal with them, the insurance companies need them so that a doctor already knows that we're trying to get this equipment (or surgery, or whatever). They expire, so all the foot-dragging by the insurance company had screwed that up, too, even though they managed to extend it in the middle of all this. I don't really believe her, but the rep claimed that the appeal from October was approved with the basic accessories, but then a "provider" submitted another authorization with extra stuff that was denied.
I assume she means Mia's PT, who submitted another letter, but she only submitted two: the first one, which was part of the original denial, and the second, which was part of the appeal. In both letters she stressed the need for all the accessories, so I don't know what this mysterious letter from after the approval with "new" requests was. I didn't push it, though, because if the appeal to the employer group worked, it wouldn't matter. It was just a mysterious part of the process that, as usual, no one told us about so we couldn't fix it right away. Of course.

Finally, on 2 August, the employer group said it was okay, and the entire thing was approved. Huzzah! You might think this would end the saga, or at least bring it to a swift conclusion. You, sadly, would be wrong. I didn't hear anything for two weeks, and neither did the vendor who was ordering the chair. After some weeks (the rep was on vacation for a few weeks, and we can't have someone else picking up the slack, can we?), she emailed me and said the vendor just had to submit a claim for the chair, and they would get the approval. She sent me the approval, which I couldn't open because it was a Word document and I don't have Word on my computer. The vendor said they couldn't submit a claim without the approval (and the insurance company wouldn't give out the approval without a claim?), so I forwarded the document I had - which I hadn't read, of course - over to them and told them I hoped they could open it. Yes, this is the state of health insurance in our country today - isn't it grand? Finally, the vendor was able to open the document, see the approval, and submit the claim to the insurance company. Success!

Of course, it still took a while, because why would anyone hurry up at this point? The vendor got the approval and had to contact the manufacturer. The manufacturer, it seems, is in Minnesota, so it would take a little bit to ship the chair here, but okay. They told me they had to get a quote from the manufacturer, because they had a certain amount that the insurance company would pay and they needed the quote to make sure it would come in under that. They told me that the quote usually took a day to get, and on the phone, I nodded and said, "Yeah, okay" because I knew it wouldn't take a day - everything else took longer than everyone told me, so why not this? Of course, a few days later I still hadn't heard, so I called back, and they said they would call about it. So they got their quote, which turned out to be quite a bit less than the insurance company approved, and as we have already met our deductible this year, we didn't have any out-of-pocket expenses, which I guess is a small silver lining in all of this. They said they would order the chair and that it usually takes 4-5 days to arrive. Once again I nodded and said, "Yeah, okay" and already began thinking about when I was going to call them to find out where the chair was. This was in the middle of September - I can't remember the exact date, but it was probably around the 20th or so. I waited for a week, maybe, then called the vendor back. They couldn't give me any updates, because they claimed they had ordered it from the manufacturer, so it was out of their hands. I asked them to call the manufacturer, and then I waited a little longer. I was hoping that the chair would arrive during Mia's Autumn Break, which began on 8 October, because then it could be delivered during the day and she wouldn't be at school and therefore they could see how it fit her. The week before the break, I called the vendor back, and they told me the manufacturer said it was "scheduled" to ship … on Tuesday, 9 October. SCHEDULED TO SHIP?!?!?!? You mean it hadn't already shipped, even though the vendor said they had ordered it a few weeks before? So it would be probably three weeks since it was ordered that it was shipped? Was Geppetto carving it out of the highest quality wood deep in the forests of Bavaria? Were aliens constructing it out of space-age polymers somewhere in the orbit of Betelgeuse? Without freaking out too much, I asked them when they expected it to arrive in Arizona, and they told me the 13th - which in my blind rage that I was trying valiantly not to express I didn't realize was a Saturday. So I said "Groovy" and waited until Tuesday the 9th, when I called the manufacturer. They did confirm that it was scheduled to ship that day, and I didn't get the chance to ask them if their 97-year-old blind man who was reading the assembly instructions in Old English had managed to put the thing together correctly.

I called the vendor on Friday the 12th and asked if the chair had magically appeared a day early, but of course it hadn't. I called on Monday the 15th and asked where it was, and they told me that it was either in their warehouse already or was going to arrive that day. The dude on the phone told me that he would check with the warehouse and call me back, but it shouldn't surprise anyone to find out that he straight up lied to me, because I never heard back from him.
I called on Tuesday and found out it was in the warehouse, and was "in line" to be assembled. "In line"? What the heck does that mean? Do they only have one person assembling these things? Did the 97-year-old blind man accompany it, and only he could put it together, but only after he assembled fifty other items? The woman on the phone told me she'd call me back when it was assembled (a day or two, she assured me), but of course I didn't believe her for one hot minute, so I called back on Wednesday, and it was ready to be delivered! Huzzah! Now, I had no confidence that they wouldn't load it on the backs of donkeys and try to walk the ten or so miles between the warehouse and my house and that it would turn into a Humphrey Bogart/Walter Huston movie, but I thought that it was 2018 and they must have heard of a van by now. The woman told me they would deliver it the next day, and when I asked when (again, I wanted to make sure Mia was home), she said the delivery dude would call me on Thursday morning to set up a time. "Yeah, right" I didn't say but thought, and sure enough, I had to call on Thursday to see if the delivery dude could come around 3 o'clock, as Mia gets home from school around 2.45. So around 3 o'clock on Thursday, 18 October, Mia's chair was delivered into our living room. You'll forgive me if I fainted when the delivery dude left it with us, as I thought I might die of old age before it actually arrived.

So now we have her chair. It's impressive. It's very heavy and rather wide - the dude tried to bring it in through the garage, but it was juuuuuusssst a bit too wide for the door, so we had to lift it and carry it up four steps to get it into the house, and I was surprised I didn't get a hernia from that. All the accessories are there, and Mia fits in it nicely - she's actually a little bit small for it, so she has room to grow if she wants to, which is nice. She enjoys sitting in it but hates it when we make her stand, as it's extra work for her! We haven't made her stand too much, and we haven't gotten it straight yet - we keep her legs bent a little bit, but we're working on longer standing times and getting her straighter. One of the reasons we wanted to get her a chair is because she can sit out in the living room instead of lying in her bedroom, and even though we can't be in the room with her (we're far too distracting!), we think she likes being more centrally located. She can eat a wider variety of foods, too, because in bed, she can't have things that are too crumbly. Out in her chair she can eat Doritos and fig bars and such, because she drops more on her tray and not a lot on her seat, so it's easier to clean up. It's a nicer television, too, so maybe she digs that.

This annoying odyssey was annoying because it shows the problems with health insurance in this country so very well. Yes, there's insurance fraud. Mia's PT told me she has seen people with chairs like this who never use them, or others who get it for free through the state insurance and then sell it and keep the money. Of course there are unscrupulous people all over the place, but here we are, paying our premiums to a company that wants to make a profit and probably doesn't on someone like Mia. Still, they make a profit on so many other people, yet they're being jerks about paying out to Mia. We did everything they asked, and it still took over a year to get the chair. We had documentation from professionals who work with Mia all the time, and they still kept rejecting us. I threatened to call Mia's lawyer, whose firm doesn't do this kind of thing but she knows plenty of people who do, and when you have to threaten to get lawyers involved simply to get something that, according to the insurance company's coverage guidelines, they needed to provide to us, it's ridiculous. I was frustrated because all summer, when I called the insurance company, they kept telling me the appeals board had deadlines for an answer, which they never met. At one point I got so frustrated I told the customer service representative that either she was lying to me or she was incompetent, which I do regret as she (and anyone else I talked to) was just looking at a screen and going off what others were telling them, but when you tell me there's a deadline and then, when I call on that deadline and you tell me that the deadline has been pushed back, I get angry and decide that you're lying to me, you're incompetent, or someone else is lying to you, so why aren't you angry that someone is lying to you? I think part of the problem was that these people didn't know exactly what they were trying to get for me - more than one person thought it was a wheelchair, even after I told them it wasn't. Some thought it was just a stander, so they couldn't understand why I needed "chair" accessories. That I sent in the order form, which says exactly what it is, and that you can easily find pictures of it on-line, apparently never crossed anyone's mind. They hear "chair" and they think "wheelchair," or they hear "stander" and think something rigid that can't convert to a chair. It's mind-boggling that people who work for a health insurance company can't be bothered to get this basic information correct. There's also the fact that, as I noted above, most people just go through their secondary insurance. They don't fight their health insurance companies because it's not worth their time. I wonder if the insurance company didn't know what was going on and their appeals people kept thinking, "Why doesn't this dude just go away?" Mia doesn't have secondary insurance, so this was it. That's not a reason for them to string us along, but I wonder if they were just mystified as to why we kept fighting this battle.

It's nice to have the chair, because we think it will help Mia use her muscles more, perhaps help her twitching (although we're always looking for other things to help with that, too), and get her to eat a wider variety of stuff. The tray is nice and big, so we can play some games that she likes on it, too. At Thanksgiving, she can sit with the family, even though she doesn't really like doing that - we don't "force" her to eat with us very often, but it's nice that she can. And she likes sitting, so that should be neat, too.

I apologize for the length of this post, but it's been a long process. Anyone who's had to deal with insurance for big-ticket items probably knows the frustration and even anger that can accompany it, and I certainly sympathize. But we have it now, and Mia digs it, so all's well that ends well? I guess?

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!