Mia – Jan ’18

January 10, 2018 by

Happy New Year, folks! Once again it has been too long… Life is busy, but all good. Mia will turn 7 next week, she’s doing great and continuing to follow her own leisurely but steady developmental curve. We appear to have broken the back of winter without any major illness and Mia’s epilepsy, thankfully, remains very well […]

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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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Officer Bryan

November 8, 2017 by

Bryan really got into the Halloween spirit this year and thoroughly enjoyed trick or treating with his sisters. This was his most independent year yet. It was great seeing him open his own bag for candy and making sure his sisters got some as well. And at every place we stopped, he was sure to […]

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JuniperMaya is 27 1/2 months old. She has made large strides in her ability to interact and communicate. When we ask her questions she loves responding with “yeah”. She says “hi” and “Mama”. She likes to babble while playing. She signs for food, milk, more, diaper, and her own sign for pick me up or […]

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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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  Madison turned 2 years on July 19th 2017 Today we are overwhelmed with joy to see how far Madison has come.  She has met or exceeded most of her goals that were set regarding her weight and height during her one year wellness check.  Madison’s Growth: We are so proud of her as she […]

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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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Paige turned 2!

July 25, 2017 by

Hi Everyone, Well, I’m a little late on this post as Paige turned two on April 27.  What can I say?  I’m on special needs time!  (Always running late)  Paige is now approaching 27 months, and while her accomplished milestones list is short, she is actually doing very well.  Her health has been exceptionally good, […]

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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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Together

March 27, 2017 by

Sophia taught me this from the beginning of knowing her spirit in my womb.  Of course, then, we did everything…together.  Now it takes more purposeful focused attention to detail.  Here’s my latest understanding “of getting” Phia, by listening to her words and by participating with her actions. “Shopping, Mom? Go shop?”  She saw the shopping […]

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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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January 10, 2017 by
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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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Hello Friends, Wow…I cannot believe Paige is already a year and a half.  It has been a very humbling and educational time in our lives.  Paige is just under 14 lbs, and she has grown to 28.5 inches.  We have been very fortunate in regards to Paige’s health.  She has only had two low grade […]

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  This was Marshall’s first time trick or treating door to door. He absolutely loved it. He held his hand out and put each piece of candy in the bag himself. You could see how proud of himself he was to do it.

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