Two decades too many!

It's 18 April, which means it's Mia's anniversary, and once again I lament that this is the only time I update her blog.  I don't mean to - it's just that things get away from me, and suddenly it's a year later, and here we are again.  On 18 April 2003, Mia and I were the car accident that left her with a traumatic brain injury, meaning it's been ... yikes, 20 years.  I don't mind her getting older except that it reminds me that I'm getting older!

The reason I don't write as much as I used to is, as I've noted recently, that Mia's life has settled in pretty nicely to a good routine.  This year was no exception.  After COVID, she's been back in school and at summer camp, and she loves it (we did all get COVID last summer, but it barely affected Mia, because she's super-tough!).  She comes home, watches television, gets therapy on the days she gets therapy, and sleeps.  After this school year, she has two years left, so we don't have to worry about what to do with her when school isn't an option for a little while.  We're not looking forward to that, I can tell you.

This past year, we began, slowly, to explore options about not only her future care, but her current insurance situation.  She's always had private insurance through Krys, of course, and usually, special needs kids have secondary insurance through the state.  Mia, however, does not qualify for that because of her insurance settlement from the accident, which left her too rich to qualify for the state insurance.  Once she turned 18, however, her circumstances changed (a bit), and she is now able to at least have a support coordinator from the state who can help with services.  The most important service, to us, is long-term care, and she doesn't qualify for that.  We've been figuring out the best way to move her money into something that won't have an impact on the long-term care criteria - it can be done, but there's a lot of annoying things attached to it.  Mostly, we want her to qualify for, say, improvements to the house as she (and we) get older - so that's it a bit more friendly to special needs people.  That ain't cheap, and we want to make sure her settlement money lasts, so if we can get help from the state, that would be nice.  One of the hang-ups is selfish on my part (well, sort of).  I get paid to stay at home with her, because one of us needed to stay at home with her.  Now that she's older, I'm not as necessary, but someone still needs to take her to doctors and therapists and be available in an emergency.  That's still me.  The problem is, the state may or may not pay me if we section off her settlement money (which is what pays me) into a more inaccessible trust.  Even if they do, I don't know how much it would be.  Furthermore, I can't really get a full-time job because I still need to be available, plus I haven't had a full-time job in almost 20 years, so who the heck knows what I would be able to get?  It's frustrating, but we're figuring it out.  We just want to make sure that she's taken care of in the far future, because we're not going to live forever (even though I plan to, I might hit a snag) and she's as healthy as a horse.

So she's had a decent year.  I wrote last year that she was in the process of getting a new wheelchair, and she did, and it's nice.  In October we went to Italy and we hired a caregiving company to come in and help with her, as my parents are getting too old to be the primary caregivers when we're not around.  So my parents were here, but people came in to help out, and it worked very well, which was nice.  Mia has gained a little weight in the past year, after her weird weight loss of a few years ago, and she recently went to the gastroenterologist, who was pleased with her progress.  Her biggest health issue, as usual, is her seizures.  Over the past few months, she's had a few that are more severe than her usual ones, which ain't good.  I took her to the neurologist last week, and she increased her medication slightly and told me that there are some other options as well, if needed.  I managed to get video of two of her seizures, one a "normal" one and another of a more severe one, and the doctor agreed that the more severe one looked more like a traditional grand mal seizure (although it was not close to being life-threatening, it just presented like one) and we wanted to nip those in the bud.  We shall see.  Her regular kind, which are more "startle seizures," are bad enough.  We do not want her shifting toward far worse ones.

She's doing fine, otherwise.  She's as fun and silly as ever, and she works hard when she wants to and sings along with the Wiggles and enjoys life as well as she can.  Her speech therapist has been doing nice work with her (well, I mean, all her therapists do nice work with her, but her physical therapists are a bit limited with what they can really do), as she's actually speaking a bit more - she's saying goodbye to people more often instead of just pointing at them and saying their name, which is what she usually does (Sample conversation: Me: "Say goodbye to _____, Mia!" Mia (pointing at them): _____!" Me: "Yes, I know who it is - say goodbye!" Mia (possibly): "Goodbye, _____!" ... but possibly not, too).  Her vocabulary is expanding slowly, but consistently, and usually she comes up with something about once a week that we've never heard her say before or haven't heard in a good long time.  Which is neat.  Small victories, people!  She just got a new occupational therapist (so new she hasn't seen her yet!), so we'll see how that goes.  And we decided to take her to some of her choir concerts, which has been a nice success.  She loves choir, but in the past, she's been too tired to make the concerts, so she just goes to the class and has a grand time.  As she's gotten older, she's been able to stay awake and alert longer, so this year we've taken her to the past two concerts and her aide (who happens to be married to the choir director) has taken her up on stage and let her rock along with the group.  She might say a word or two (I'm sure she's heard the songs enough to have memorized some of the words, but she's not quick enough to keep up), but generally she just rocks back and forth smiling.  It's very neat, and the concerts have intermissions so we can leave then, because by the time the intermission comes along, she is actually getting tired.  We're glad she's able to participate - the kids seem to love her (I mean, who doesn't?).

That's really all that's going on.  She's doing well, and we hope she can always do better.  We hope the increase in medication will at least quell some of the worse seizures, but she's going back to the neurologist in 6 months for a check-up, so we'll see.  As always, we're looking forward to hanging out with her, because she's fun.

As always, I link to things: the story of her accident, and the yearly updates: 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016, 2017, 2018, 2019, 2020, 2021, and 2022. Thanks for reading, as I know it's a foolish promise, but I will try to write a bit in between now and next April!