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The weather has been pretty rough so far this winter, so we’re maximizing our indoor time. This has brought about some fun updates, which I’m excited to share…

While we await a new standing frame, Elsa’s been standing at a chair that’s actually a decent height to facilitate up-right time. Last week, she surprised us by practicing standing all by herself.

After years of fretting that she might not ever walk, this gave us tremendous hope. (She just turned 6.) For years, we have pushed so hard at standing through therapy, and she has made progress. But to see her initiate such an important move independently was simply incredible.

We recently got together with three other families with kiddos with WHS who live in our area. Here are our four girlies, all together. What a beautiful bunch. Ages range from 10 to 3. We feel very blessed to have these families nearby, to support each other and celebrate progress. I love seeing how these ladies are coming along…

We also recently went on a family skiing and indoor waterpark adventure. I will not lie, none of this was easy. But I’m awfully stubborn about ensuring that Elsa gets an opportunity to try the things that her sisters do.

Here she is on skis. This was very tricky, but we ultimately achieved some balance. She didn’t really glide, so much as held on for dear life!! But I considered the muscle engagement and sensory experience worth the effort. So long as I sang Jingle Bells, she didn’t complain…

The waterpark went a little bit better. I had a low moment, where I nearly broke down. It was so hard to find an accommodating water depth. Everything was either 1 or 2 foot (too shallow) or 3 foot and full of aggressive water features shooting at our face. The water swing worked well, as did the hot tub – where we both nearly fell asleep…

So there were hiccups, but overall, we got a better sense of how to prepare for the next time around. Because there will be a next time :o)