Kendall Update 2015

January 23, 2015 by

It’s been almost exactly a year since I last posted an article about Kendall on the Wolf Hirshhorn website. So much has happened over the past 12 months and I feel guilty for not continuing to write articles about Kendall and her journey. Kendall has done so much in the past year. She has fully transitioned from […]

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Hope you all had a wonderful holiday season. On behalf of the wolfhirschhorn.org 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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Thankful

November 26, 2014 by

It’s funny how typically you have a baby and your family increases by one (more if you have multiples).  If you look way into the future that one child may take a husband or wife increasing your family again, then maybe a grandchild or two will come into the picture.  Usually our families increase in […]

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Maryland

November 23, 2014 by

An update on Joseph who is now 16 and doing great. It has been awhile since I wrote the article Gods Handiwork and put it on our site. We may be transferring to Maryland and have alot of anxiety about the move and the services for Joseph. If anyone knows what the services are like […]

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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 wolfhirschhorn.org, 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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This is my brother Vance!  He was a happy mime this Halloween, and enjoyed dancing the night away at a Special Olympics Halloween Dance!  he plays on a special olympics floor hockey team and loves all sports!  He’s a caring, sweet and kind fella, whos a bit shy now and then, he will hold your hand […]

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Magnolia the Garden Gnome

November 9, 2014 by

Magnolia, the garden gnome, really enjoyed Halloween this year. It was her fourth Halloween, but the first that she actually figured out that people would smile and ohh over her if she participated.  Needless to say, she got a lot of candy this year.  We can’t wait for next year.

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Our little Tinker Bell!

November 9, 2014 by

  This was the first year the Caroline dressed up for Halloween. Last year she was still so tiny that we didn’t even attempt at finding a costume. Well, this time, I knew months in advance what I wanted her to be, because she has always been my personal little Tinker Bell. She had a […]

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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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