wolfhirschhorn.org

As 2021 comes to a close, and Elsa approaches her 10 year old birthday, we have lots of updates!

This summer, we vacationed in Missouri and Arkansas, which brought lots of boating time for Elsa. She absolutely loves the vibrations and breeze and misty spray that go along with lake life. We hopped on for a tube ride at one point on our vacation at Table Rock Lake. Not one bit of nervousness from this gal! She loves all things water sports, which makes me want to live near a lake so badly.

We still use Elsa’s jogger stroller quite a bit, when we hit a trail or if I want to get a run in, when my other gals are on their bikes. A frequent destination is a nearby park. We always swing, and sometimes I push Elsa a bit to climb the steps, with help, and hold onto bars and ropes, to practice her grip. She does not like doing that at all, but will hold on tight if I tell her in advance how long I’d like her to hold on (30 seconds or so). When she knows what the finish line, she will definitely put in this very hard work.

A park a bit farther away from us recently opened up a renovated park, which includes a wheelchair accessible swing. Elsa loves that, and her sisters are always happy to push.

Elsa now has a light-weight home walker – she chose purple for her new equipment. It collapses easily, which makes it convenient for travel, when we cannot bring her standing frame along, so she can still get on her feet in a supported way. She uses a walker during her school day, as well. In fact, the walker has been built into her daily routine. Anytime she makes a trip to the restroom, she walks to and from the bathroom. She really looks very good in it! She does get nervous about falling forward, though, and therefore doesn’t get the forward momentum that comes from leaning in to her steps. Progress, though! Lots of it.

Here she is playing soccer at school with her classmates.

Elsa chose her Halloween costume this year using screenshots of various costumes. I love documenting this every year. Here’s a link to a blog post and video of what this process looks like for us, which includes her costume reveal… :o)

Elsa’s intellect is constantly knocking my socks off. Using a field of two, she can spell CVC words. Here is a word she put together during a recent family game night. With her PODD book and Accent 1000, she expresses her needs and wants, with increasing success. PODD does require a clear YES and NO for scanning and selecting, and some days those choices are hard to discern. We are constantly working to make those clearer, so her language is understood broadly by her friends and teachers.

She does prefer to lean in when standing – this is what that looks like. I am always within a lunge, when I have her like this! But you can see in profile how big she is and how strong she has grown! We go to PT once a week and continue to see improvement in her standing balance and steps.

This month brings exciting times for our family, as the picture book that I wrote, inspired by our family, is publishing on Dec. 1! DANCING WITH DADDY – illustrated by Ziyue Chen – is about a girl, who cannot wait to go to the local father-daughter dance in her community. The main character (Elsie) has Wolf-Hirschhorn and uses the same tools as Elsa does – a PODD book, wheelchair and G-tube. To my surprise and delight, the book has gotten some great reviews from Kirkus Reviews and the TODAY Show, even landing on a TODAY Show gift list! Surreal! I’ll be sure to share some pics of our book birthday party :o) Here’s us unboxing the author copies…

I’ll be sure to share more when Elsa turns 10 soon – it’s hard to believe that’s around the corner. That means it’s been about 10 years since I met many of you! Thank you for all you’ve shared over the years. I cannot imagine this journey without you and the beautiful kids in your world.