Posts by author: Anitra

Summer is off an running. Let’s be real… how are you doing? On our end, we’ve done a few camps and used a daycare program sporadically, to get a little free time. And to give Elsa’s mobility a boost, we’ve been pushing her hard on walking. Naturally, it takes a lot of time and energy. […]

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I don’t want to write a super detailed post on this topic, but I did want to share that Elsa is going on the potty… regularly!! (She is age 6 1/2, and we’re just now officially making it part of our routine.) I think this new development is the result of a myriad of things: […]

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It’s International 4p- / Wolf-Hirschhorn Syndrome Awareness Day – the day each year when we let those both in and outside of our immediate circle know more about the 4p- syndrome and the children and adults who are redefining what WHS means every day. If you have someone in your life with WHS, you likely […]

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Center of Attention

April 9, 2018 by

It’s easy to be hard on yourself, as a parent. As the mom of three small kids, things are busy. And often I take the path of (not least resistance, but…) greatest efficiency. I’m always trying to streamline, always thinking five steps ahead. Something I certainly don’t do enough: Make Elsa the center of attention. […]

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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 […]

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And the 2017 winner is…

December 9, 2017 by

Sending a BIG thanks to the following kiddos for entering the 2017 WHS Halloween event! Your costumes were amazing, and so were your updates! Madison… Juniper… and Bryan! One of these kiddos will win an awesome Foamnasium set! The other two will win a fun prize. Elsa, my little gal with WHS, and her sisters selected the […]

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As family and friends of children and adults with WHS, we are all on the same team. And through wolfhirschhorn.org, we can support each other and cheer each other on. In this spirit, we are announcing the 2017 holiday fundraiser item is… a Team WHS hat!   The stories we share here at wolfhirschhorn.org are […]

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Our little girl has wings! Elsa, now 5 1/2, was a fairy this year for Halloween. She’s standing against the wall here – but still. Looking so good in standing these days. Can’t wait to see everyone’s costumes this year! Reminder that if you post to the WHS website, you could win an amazing prize […]

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Halloween Event 2017

October 8, 2017 by

It’s that time again, folks! Halloween is around the corner. And that means we’re kicking off our annual Halloween costume event. Every year, when the leaves begin to fall, and Oct. 31 draws near, our kiddos don their Halloween best and share their awesome costumes with us. It’s a tradition at Wolfhirschhorn.org. You post a […]

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Connecting Our Families

September 25, 2017 by

Wolfhirschhorn.org recently had the opportunity to connect the parents of a baby with WHS to a family with an older child with WHS. That’s because in addition to sharing stories about our kids, Wolfhirschhorn.org also maintains a database that enables us to make these important relationship matches. If it’s been a while since you’ve updated […]

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Sister Love

September 12, 2017 by

Our younger two daughters (ages 4 and 2) are often all over Elsa. It can be pretty cringe-worthy. They rub her cheeks and pat her head. They hold her hand… then squeeze it way too tight. They literally hug (choke) her with love. All day. Everyday. If they are unattended with her, things can go a […]

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When packing for vacation, and maximizing the backend our van, it can be hard to know what to bring. Beyond the essentials, my husband and I always hash out what positioning equipment will give our daughter Elsa the most comfort, access and independence, given the unique environmental factors of our destination. For our weeklong vacation earlier this month, […]

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Living in Lockstep

June 19, 2017 by

Moms, dads, grandparents, caregivers – how are your backs holding up? Our Elsa isn’t walking yet, so that means lots of lifting. As a result, our backs often are aching and in need of stretching and TLC. Elsa is 5 years old and 36 pounds. A great size. A healthy size. No complaints there whatsoever. […]

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Three Girls in a Swing

May 22, 2017 by

Elsa was swinging so happily in the new therapy swing at our neighborhood park. It must have looked like the place to be. “Can I get in there?” my #2 asks. “Um, I guess we could try that,” I say. I squeeze two sets of little buns side-by-side in the green seat. It’ll work. “Me […]

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Bedtime Gear Essentials

April 25, 2017 by

What does bedtime look like for you? Here’s a little glimpse of our bedtime set up for Elsa. I like to think she seems pretty happy in there, despite all the gear and gadgets. She sleeps fairly well. (Although lately she seems to be waking up between 5 and 6 a.m., which is not ideal…) This video […]

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April 16 is Wolf-Hirschhorn Syndrome Awareness Day. What will you do to spread the word and increase understanding among those in your sphere? Share your pics and stories (and the pics and stories of others!) on April 16: On Wolfhirschhorn.org On Facebook On Twitter (@wolf_hirschhorn) Thank you all for your support of and contributions to […]

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We’d love an update on how your kiddo is doing! What are the challenges you’re facing this week, or in the coming months? Are you contemplating a procedure, or do you have surgical outcomes to share? How is therapy going? What new things have you tried? Do seizures continue to be a big factor, and […]

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All that we carry

March 1, 2017 by

Do you ever stop and think about all that our children carry, in a single day, to meet their needs? We load it up so regularly, we seldom reflect on it. At least, that’s how I feel. But it hit home the other day. I was typing up an email to my 5-year-old daughter Elsa’s […]

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Elsa Turns Fabulous 5

January 31, 2017 by

Our big girl Elsa is now 5. And my-oh-my, there is a lot going on in our world. Here are some updates across the board: Seizure: After two years of being seizure free, our neurologist OK’d Elsa going off of her seizure med Depakene. We started weening off of it two months ago, and… so […]

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The adult-sized “Real Stories. Real Power.” T-shirts are now ready! The shirts are available for 8 days through this Bonfire campaign. Buy yours today and help us spread awareness of WHS! https://www.bonfire.com/wolfhirschhorn-adult-tee/

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We’re excited to share a fun T-shirt design for Holiday 2016! This new wolfhirschhorn.org T-shirt features a superhero theme because it can’t be denied: Our kids are real-life superheroes, who everyday face herculean obstacles and defy the odds. The shirt reads “Real Stories. Real Power.” That’s because here at wolfhirschhorn.org, we believe there is real […]

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Elsa: Halloween 2016

November 2, 2016 by

Elsa: Halloween 2016 Minnie Mouse was the look this year! And thankfully, it was warm-ish this Halloween, in our neck of the woods. I made a special request that Elsa was in a stander-on-wheels for the parade again this year, which her teacher gladly accommodated. It means so much to me, to see her up on […]

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Halloween Event 2016

October 24, 2016 by

If you’re new to Wolfhirschhorn.org, you may not know it, but you are about to be inundated with some serious cuteness… Every year at Halloween, our kiddos put on their best costumes and wow us with creativity and inspiration. It’s a tradition at Wolfhirschhorn.org to share our costumes with each other on the website, and in […]

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Our family just wrapped a big weeklong summer vacation. It was a marathon. Can anyone relate? The packing… the maneuvering… the stress… and the fun, too, of course. On the trip: My husband and me, our girls Elsa (4.5 year old with WHS), Cecilia (3 years) and Lola (1.5 years), and 15 immediate family members in […]

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Elsa’s eye surgery

June 8, 2016 by

In March 2016, Elsa had eye surgery. I won’t bury the lead, as they say in the newspaper industry… The results are crazy good.  We have patched her eyes on and off for several years to address drifting. It seemed to work for a while, and then around age 3, not so much. Especially when […]

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Elsa turns 4

February 27, 2016 by

Hi all, I cannot believe our Elsa is 4. Years 1, 2 and 3 were so full of medical issues and doctors visits and life coordination. Ever since she turned 3, it seems we’ve fallen into a rhythm of sorts. Don’t get me wrong, we have our tough times. And we still somehow have 2 […]

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The 2015 Holiday Item is ready for purchase! What is it this year? A newly designed wolfhirschhorn.org notebook. The 80-page orange notebook features this fun design and (literally!) uplifting message: The 2015 Notebook is the annual fundraiser benefiting the children of wolfhirschhorn.org. The cover reads “Going Up, Up, Up” – representing the trajectory of our kids and […]

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We are extending the entry deadline for the Halloween Event to this Sunday, Nov. 15, 11:59 p.m. We want as many kids as possible to get the prize! This year, we will give all kids who enter the event a newly designed WHS notebook (along with crayons and stickers to make it their own). We […]

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If you’re thinking of posting to the wolfhirschhorn.org site (for the Halloween Event or otherwise), but are feeling less-than-confident in your computer skills, here’s a quick step-by-step guide. If you have any questions while creating your post, just email me at anitraschulte@gmail.com. Looking forward to reading what you have to say! Posting to www.wolfhirschhorn.org: – […]

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Elsa Halloween 2015

November 1, 2015 by

Elsa was a swan for Halloween this year — quite fitting for her calm, graceful demeanor, I must say! Her costume was a mash up composed of a faux fur hat that my sisters and I wore long ago when playing dress up and a hand-me-down dance recital costume. In a pre-school parade filled with super […]

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