Dylan the Octopus

November 9, 2014 by

Dylan was an octopus this Halloween.  He loved his costume and had a great time playing with all his octopus legs.  Dylan is 5 years old and currently in Kindergarten.  He is doing wonderful and thriving.  

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This is Little Miss Kennedy, she is 3 years old. She is Tinker Bell this year.

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My daughter’s name is Savannah, and this year, she dressed up as a princess in hiking boots (to go with the book, “Do Princesses Wear Hiking Boots?” because her school doesn’t allow Halloween costumes). Boo, for real! 

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Sergio – Halloween 2014

November 8, 2014 by

      We decided to make Sergio’s costume at home this year. We went with the “Up” theme around his new wheelchair that he finally received a couple days before Halloween. We chose this theme because we know without a doubt that Sergio is always on his way “up” in everything he does and […]

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Quinn was a piñata for Halloween this year.  She was a “for looks only” piñata, of course!  It was very cold and rainy, so we didn’t get to do much trick-or-treating.  We had fun dressing up and taking pictures though!

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We went with the Disney Jr. theme this year. Jada was Doc McStuffins, and her little brother was Jake from the Neverland Pirates. The weather was pretty yucky here in the Midwest, so we didn’t get to stay out too long, but the kid’s still had a blast. After trick or treating we all snuggled […]

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Liam: Halloween 2014

November 4, 2014 by

My little monkey Liam is 1 years old and the sweetest little boy ever

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Of course we could not find a costume to fit but here is our beautiful Miss Arianna on her first Halloween as Wonder Woman!!! Small but in charge and full of strength. Arianna spent the day lounging in her cape.

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Our Baby Girl Arianna

November 4, 2014 by

Hello everyone my name is Vanessa Medina and my husband’s name is Renn. I gave birth to my precious daughter Arianna Faith Medina on 9/4/14. She was diagnosed with WHS after an amnio was performed in July to try and check why she was so small. I was hospitalized at 25 weeks due to a […]

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This is Our little monkey. His name is Marshall. He is just shy of 18 months. He is truly the happiest baby. He had an open heart surgery, double ear infection, and pneumonia in 2014. But meeting this kid, you would never have known. He is getting stronger everyday. He is a true blessing.

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Jayna: Halloween 2014

November 3, 2014 by

Jayna, age 7:

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Esperanza, age 5, as a spider witch:

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Garner dressed up as Albert Einstein for Halloween this year. We always tell him that he is as smart as Einstein so I felt it was suiting for him to dress like the genius. Garner did not like the glasses, we were fortunate to be able to get even one picture of him in them. […]

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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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We spent Ethan’s first Halloween in 2013 at our local urgent care clinic, so this was the first Halloween we were able to celebrate with him.  We had so much fun!  Yoda seemed so appropriate as a costume since Yoda was also one that shouldn’t be judged by his size.  He may be little but […]

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We were going to skip ‘trick or treating’ this Halloween, until… I saw the angel costume…(The Christmas Pageant Angel, from my childhood, was flooding through my mind.) Oh, how lovely! As I was slipping it back on the rack, between the sweet princess and scary witch costumes, I noticed the detailed wings AND adorable halo. […]

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Liam is my super hero every day.

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Evelyn celebrates her first Halloween in 2014! She is 7 months old and just shy of 10 lbs.! She has been through a lot these last 7 months, including 2 trips to the ER, G tube surgery and joining the seizure club. She has remained her sweet, strong self through it all! We look forward […]

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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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Hello Everyone, I would like to start off by saying thank you for all of your posts.  I’ve been reading them on and off for at least six months now.  Sometimes they bring comfort and joy, sometimes knowledge, and I will admit, many times I have wept uncontrollably for you and your children (and maybe […]

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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 wolfhirschhorn.org 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 wolfhirschhorn.org. We know it won’t be hard […]

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In 2007, there was nowhere to go. A brief search on the internet brought back fear and pain. For many years, The Physicians’ Guide to Rare Diseases was the primary source of information to families searching for answers.  Every geneticist reiterated the same message: your child won’t make it. But now we have the truth. […]

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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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Mia – Summer 2014

June 24, 2014 by

Hello friends – it has been a while…   Mia is now three and a half and well-settled into her role as big sister. At 11 months, Finn is already considerably heavier, stronger and more mobile than his ‘big’ sister –but they get on like a house on fire and she still lets him know […]

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