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Happy Fall everyone!

I wanted to share an update about what’s new with Elsa, age 8, these days…

We aren’t back to school full-time (yet?), but have established a rhythm of sorts. She goes into her school for therapy for an hour on Monday and an hour on Wednesdays, and goes to outpatient PT at a nearby town one day a week, as well.

I finally decided to bring in help, in the form of a sitter two days a week. She is as low-risk as we could find – and also knows Elsa well, as she is her was her one-on-one buddy at our church on Sundays last year. Feeling very blessed to have her and to have that break – a few hours here and there – and even a date night last week. Wow, that was wonderful.

Elsa has started tolerating a mask for short periods of time 45 minutes to an hour, which has allowed us to go to the library and into her therapy sessions without a plastic cover over her stroller. (This mask is from Target.) Really needed one with a high nose, because the standard ones always end up in her eye lashes – and this one works well.

Elsa recently got a new style of orthotic, which she is getting use to, slowly. In order to let her calf muscles get stronger, we moved to a lower SMO (which only provides support at the ankle and foot). When her legs fatigue earlier than normal (and they definitely do), we add on an AFO that’s super light weight and thin and only provides support in the front, so her calf muscles can flex and build up.

Home school/e-learning is completely draining, and I’m constantly trying to decide if keeping her home was the right call. I continue to see that school is, on the whole, going great in our state. Kids are getting COVID of course, but not in our state’s schools. Transmissions are happening elsewhere. And I see all of the precautions her teacher is making on the screen every day, during our e-learning meetings. On top of all that, Elsa is increasingly frustrated and unhappy at home, and she has been expressing a desire to go back. When we were talking on her PODD the other day, she said, I want to go > Places > School > Classroom. And then she hit classroom aggressively, three times! We have her IEP in a few weeks, so I imagine we’ll begin discussing this more then. This is our home e-learning set up…

We’re spending lots of time outdoors while we can. As usual, Elsa gets more love from her sisters than she probably wants. But I truthfully don’t know what I’d do without them. They are amazing with her. Now ages 7 and 5, they do so much. They hold her hands when she is upset (so she doesn’t hit herself). They grab her PODD communication book when she has something to say. They know exactly what she needs all day long – from a potty break to bedtime routine items. We are totally a team.

I hope all of you are continuing to find your way through this extra hard coronavirus time. Not sure about you, but I think I’ve finally adjusted my expectations to align with the reality that this isn’t going to come to an end for a long time. Integrating exercise into my week has made a huge difference in helping me guide my family through this extended limbo. Sending all of you our best – would love to read an update from you, if you get a chance to post. I know finding time is hard!