Amelia’s Story 2019 Update

It’s been a whole year already since I’ve typed up an official Amelia update. I can’t believe how quickly the last year flew by.


We’ve had a pretty peaceful year here and Amelia’s really only seen progress. Very, painfully slow progress across the board, but she moved only forwardly developmentally and didn’t really have any regressions to speak of, so we’re continuing on in the right direction at least.

She’s also had a hospital-free year. We did spend a few days hashing some things out with neuro at the beginning of 2018, which in typical Amelia fashion, resulted in more confirmation that there’s really nothing we can do but wait and hope for the best. It’s frustrating, but it is what it is, I guess.

Becoming a BIG sister. Amelia loves the baby SO much!

I think her big gain for the year is in the sleep department. Some nights she’s up half the night tapping away on her ipad (and I won’t even get into how frustrating that is but at least it keeps her occupied so I can catch some z’s) but she does have some nights where the ipad is still on my nightstand in the morning. So, maybe someday that’ll be an every day thing. I sure would love to meet a fully-rested Amelia. I bet she’s much calmer and less prone to random freak-outs. I’d imagine she would always use her words first and scream like a crazy person much less often…or maybe never. THAT would be amazing!

I know, I know…some gain, right? I’m sure that’s small beans for most people but for her, it’s really big stuff!

Amelia playing Watch Ya Mouth…what a hoot! 🙂

Her vision, which has always been a huge frustration, continues to be…well, I’m not sure what it is anymore. Her script has been confirmed by a couple of different specialists as something that should really cause her problems, but it doesn’t seem to. There’s not a pair of specs out there that can survive her, so she almost always goes without. It SHOULD bother the heck out of her, and it used, but it doesn’t seem to anymore. It’s yet another thing I don’t really understand.

Amelia’s still a mover and a shaker but less so as time goes by. Sensory input in general bothers her much less now than it used to. We still carry a set of ear muffs for her in each of our vehicles just in case but we haven’t needed them in I don’t know how long. We’ve even been able to enjoy movies in the theater without them. I can’t tell you how many times we’ve gone to catch a movie (or anywhere loud and people-y for that matter) and had to walk out with a child in full-on freak-out mode because, even with the ear muffs on, it was just too loud. So, that’s mostly a thing of the past now. Thank goodness!

Showing me her zombie makeup. She does an amazing zombie impression!

Amelia continues to be homeschooled and still learns primarily through osmosis. We’ve tinkered with different curriculum for her but the attention span just isn’t there for much of that yet. She’s still working on basic life skills so we focus a lot on that and get in bits of bookwork where we can. I plan to kick that up a notch in the next year or so but for now, we’re taking it slow.

So, that’s the update on all the health stuff. Amelia’s so much more than all of that though. She’s silly and spunky and fun. She enjoys playing games and collecting little toys. She loves babies and kitties and anything she deems “cute”. She has the nicest circle of friends who love her just the way she is. It’s beautiful! And she’s beautiful…inside and out. She’s our little ray of sunshine and we love her so very much.

Library time!

Amelia’s Story – 2020 Update



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