An anniversary it never gets easier writing about!

Today is the 19th anniversary of Mia's car accident, which damaged her brain and almost killed her.  Every year on this date, I write about the year just past, and today it's been a year since I updated the blog, which is now a new one because for some reason, I can't access the old one.  I wish I wrote more on this blog, but real life is just too much in the way these days.  Mia is doing fine, which is nice.  Things surrounding her are a bit less fine, but that's the way it is.

I don't have a lot of information about her - things are moving along.  She's been doing fine in school, and we're always glad that she's able to go, see her friends, do a bit of learning, and spend some time out and about in the community.  She's a very social animal, and she always gets to school and yells out her classmates' names (she doesn't actually say hello to them, because that would be too easy, although her teachers are always trying to get her to do it!) and is always excited to do things.  They go on expeditions to the grocery store or Target, and she has fun with that.  She's still seeing her many therapists, which is nice.  Her speech has improved slightly over the past year, but she still uses one word if she can get away with it.  As much as we encourage her to use sentences, it's tough to get her to remember that.  If she can use one word to get what she wants, she'll use one word!

Her weight has increased slightly, which is good.  A few years ago she lost 7-8 pounds kind of inexplicably, and when you're dealing with someone who weights less than 100 pounds, that ain't good.  But she's gained it back and then some, so she's doing well in that regard.  The doctor and nutritionist wanted to put her on "adult" formula - it has some more adult things in it rather than pediatric stuff - but it's very thick and does not go through her pump and tube well at all, so we've stuck with the kids' formula.  The doctor said it wasn't that big a deal, he just wanted to try it, so we're not that put out about it.  It was a frustrating few days, though.

Of course, she's still having seizures more than we'd like.  That's probably always going to happen, unfortunately.  She has an appointment with her neurologist coming up, and I'm going to ask him if her increased weight means he can maybe increase the dosage on her anti-seizure meds just a bit.  He has said in the past that if she takes too much, it can make her too sleepy, which we don't want, so we've tried to keep it down, but if her weight increases, perhaps she can handle it.  As usual, it's frustrating because she generally has them at night, which wakes her up, and then she's tired during the day a lot.  We shall see.  Otherwise, her health is fine - as I've often noted, she's kind of indestructible, and I imagine she used up all her bad luck on one day, so she's never gotten COVID (none of us have, officially, although we still suspect Krys had it in late 2019) and she's just trucking along.  Her seizures are annoying, but they don't do any damage beyond keeping her awake.  It's frustrating but not dire.

The biggest issue we've had this year is that she needs a new wheelchair.  The one she's using is a bit over five years old, and it's getting a bit rickety.  We had a guy out to fix something on it in the fall and he said she needed a new one.  His company got the ball rolling with the insurance company ... and then we switched insurance at the beginning of the year, and they had to start over.  Groovy.  Then the insurance covered the entire chair ... except the metal loops that are attached near the bottom of the chair that we use to strap the chair into a bus or the van.  They said those weren't "medically necessary," although how she's supposed to leave the house without getting strapped into the vehicle she's in is beyond me.  We appealed it, which was a whole other saga, and they still rejected it.  So we're probably going to have to pay for the loops out of pocket, because why should the insurance company, to whom we pay premiums every month, pay for something that both her physical therapist and general practitioner say is medically necessary?  I mean, that's crazy!  They are working on the chair right now, so I hope to have it soon.  But, as usual, insurance issues is a big source of stress in our lives.

I don't have a lot to write about Mia this year.  She's doing well, she's working fairly hard, she's enjoying life.  She doesn't do much, of course, but what she does do she enjoys, and we're glad for it. She went back to summer camp last year after they took a year off, and we're looking forward to sending her again this summer.  Her health is fine, her demeanor is fine, and her therapy is fine.  We have a few things to take care of - we're trying to get her back on the state-run insurance now that she's an "adult," but that's a whole process - but other than that, her life is nice and stable.  I know it makes for boring reading, but it makes for a happy and calm life, and that's really what matters!

If you haven't kept up with Mia's story, I'm here for you!  Here are the links to the annual posts I've written over the years.  Fun times! The post about her accident is here, and then we have each year: 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016, 2017, 2018, 2019, 2020, and 2021. Let's see what happens in the next year!