Many times, as I encounter ( or Sophia encounters and makes) another friend, they often declare how she has touched their soul and I’m reminded of the miracle in Sophia’s giving heart. Our “new” friend will quickly tell me how lovely and amazing she is and how she gives her all, in all, she does. […]

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Baby casen 2015

May 21, 2015 by

Hello everyone we just wanted to give an update on baby casen , he resently had a his big 1 birthday!!! Casen has been doing very well, he has only had two small seizures since December , he’s doing very well on keppra. Casen is smiling , grabing at toys, he is such a happy […]

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Stronger is Happier

May 16, 2015 by

I’m going to share here, because here is one of the few places in our world where honesty still lives.   I have been angry.  Anger I didn’t know still existed.  With the exception of Christmas and Easter, I haven’t been to church in over a year.  I have been angry with God and the […]

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Paige Elizabeth

May 13, 2015 by

Greetings, We are new to the Wolf-Hirschhorn family.  Our daughter, Paige Elizabeth, was born on April 27, 2015.  She weighed 4lbs, 3 ounces.  We found out last Thursday that Paige has been diagnosed with WHS.  She is currently still in the NICU due to feeding issues.  We are pretty certain she will have to come […]

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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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Long & Overdue Update

April 15, 2015 by

Well, it’s a little short of a year since my last post. Nathaniel is now 4 years and 3 months….he’s still hopping around, can pull himself up on things like the sofa, table, and the edge of my bed, but will only walk with his walker when he wants to. He’s like a puppy…constantly chewing […]

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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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Overcoming Obstacles

February 20, 2015 by

With the exception of the post for the Halloween contest, it has been nearly a year since I’ve given an update on Caroline. I usually keep up to date with the group on Facebook but realized I needed to update here as well. So many things have happened since our last update when she turned […]

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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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