Posts by author: Anitra

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!

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We’re excited to share a fun T-shirt design for Holiday 2016! This new 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, 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, 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 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 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 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 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 Looking forward to reading what you have to say! Posting to – […]

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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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Halloween Event 2015

October 27, 2015 by

                Halloween is just a few days away, and many of you are surely getting your child’s costume prepped and ready to go. In addition to hitting your school parade and neighborhood trick-or-treat circuit, be sure to participate in our annual WHS Halloween Costume Event, right here at […]

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Elsa: Reading with Switch

October 8, 2015 by

Elsa has had switches to use for communication for quite some time, but I don’t think I’ve ever posted how we use them. Here, we’re reading a book made by her teacher at preschool. It’s fashioned after Brown Bear, Brown Bear. But instead of the flow of colors and animals, it features real pictures of […]

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Elsa: Therapy at the Park

August 17, 2015 by

This summer, we went to a new neighborhood park with lots of nice shiny equipment, including a sweet child-sized black gloss finished picnic table. Eager to try out Elsa’s more independent sitting skills, I put her on her bottom, on the seat facing out onto the concrete pavement below. Perhaps you can guess what happened next. I looked […]

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Elsa: Playtime at home

July 16, 2015 by

There is nothing terribly momentous about this video, but I wanted to share. This is just Elsa playing with one of her favorite toys in our kitchen… a toy that her sister stole from our speech therapist’s toy bag, a common occurrence, unfortunately. (Why are their toys so much cooler than ours?? Even the oldies […]

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As you start planning for your summer holiday, add one more thing to your to-do list: Update your information with This summer, we are updating the Child Locations database, and we need your help. Here’s why it matters, and why now is the time for a refresh: When you received your child’s diagnosis, […]

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New Friends Meet

April 17, 2015 by

We were so excited to learn recently that a family with a young daughter with WHS had moved into our area. Not the same town, but very very close by. Coincidentally (or by the Lord’s design, in my opinion), our paths crossed through our pediatrician — very respected in the area — who now has […]

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Elsa Turns 3

March 5, 2015 by

Elsa turned 3 in late December, and I’m a little late in posting due to the arrival of our third child in January. There is much to report, so I’ll get right to it!                     School: Elsa started preschool in January. We got a call from […]

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Hope you all had a wonderful holiday season. On behalf of the community, I’d like to send a HUGE thank you to everyone who participated in the 2014 Halloween Event and Holiday Fundraiser… For posting pics of your kiddos in their costumes, purchasing tote bags, and sharing the posts with your social networks, families […]

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Elsa: At-Home Prolonged EEG

January 3, 2015 by

Elsa had an at-home prolonged EEG in December. We monitored her brain activity for seizures for about 48 hours, in her home environment. We pushed the button 14 times for suspected seizure activity, but everything came back negative — no seizures at all. For now, a 2.5 ml depakene dose, 3 times a day, continues […]

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We’re excited to announce the availability of our 2014 fundraising item: the WHS Tote Bag! In our posts and conversations on, we often remark and swap stories about how our children are lights in our lives and in the lives of those around them. This is what inspires our 2014 Holiday Fundraiser design – […]

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Elsa’s Halloween Pic: 2014

November 2, 2014 by

Our Elsa was a puppy this year – and pretty happy about it! It was a really soft costume… We’ve been so fortunate to have borrowed costumes the past few years from my nephew. The fact that “puppy” fit as well as it did is a real testament to her growth! She’s getting to be […]

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Halloween Event 2014

October 29, 2014 by

  It’s Halloween week, and you know what that means… It’s time for the annual WHS Halloween Costume Extravaganza! This is our fun way of getting the WHS community engaged around a universal tradition – dressing our cuties up for the holidays and snapping their pics. Pictured above are Fiona and Ethan, last year’s top […]

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Elsa, with Bells On…

October 7, 2014 by

Elsa is now 33 months and really starting to move on her feet. Here she is taking steps with her PT with really limited help/support. We recently advocated for two times a week of PT, to make the most of her Early Intervention support from the state before she ages out at year’s end. Elsa […]

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Thanks for the great pics!

September 3, 2014 by

Hi all! Thanks to each of you who shared pictures of your beautiful children for the WHS website homepage. The photos say so much — about the innocence and spirits of your kids, about your love and care for them, and about the joy and wonder that they inspire in all of us. We can’t […]

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Call for Homepage Photos

August 2, 2014 by

WHS Families: Do you have a positively adorable photo of your child, that needs to be shared with the community? If you do, we want it for the website. Over the next few weeks, we’ll be collecting photos of our kiddos to be used in updating the homepage of We know it won’t be hard […]

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Elsa: Summer at 2 1/2

July 18, 2014 by

  Hello all! Just wanted to share a quick update of Elsa at age 2.5. – Right now, she is just shy of 23 pounds and 34 inches long. Her hair is really growing now. Most of her teeth came in at about 27 months. – Feeding hasn’t been going great since her last seizure, in April […]

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Elsa: 21 Months

October 7, 2013 by

We wanted to share some updates on Elsa — as she passes the 21 month mark: Prevacid: After being told by many a doctor that Elsa is “just a pukey kid,” last week she went on Prevacid for reflux. It has already made a remarkable difference. Normally, a cold leads to 3 or more pukes […]

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Elsa: Big Sister

July 29, 2013 by

Elsa is officially a big sister! On June 22, 2013, we welcomed little sis Cecilia to the family. Elsa was a little skeptical at first… And gave her a few sideways glances… But she’s coming around… The little ladies are almost exactly 18 months apart. Right around the time that Cecilia joined the family, Elsa made three […]

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Elsa: 16 months

April 27, 2013 by

Elsa is 16 months and really hitting her stride! Around the time of her one-year birthday, it seemed her development had pressed the pause button. We think she must have overheard us discussing this, because shortly thereafter, there were some pretty major developments: –  Reaching and grasping: This was a no-go at her one-year eval. […]

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