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

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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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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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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: 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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National 4-P Day!!!

April 16, 2014 by

Today is National 4-P day, Wolfhirschhorn Awareness.  Here’s Jordan wearing her 4-P tshirt.  I told her is was 4-P day and she gleefully replied “4-P for me!!” She cracks me up.  4-P accessories are available on the 4-p support site.  Enjoy your special day families.

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Need a doctor

April 15, 2014 by

Can anyone recommend a Dr. that they’ve dealt with, and like, that specializes in WHS? We live in Wyoming and don’t have anyone that understands our girl.  In fact, we just lost the best pedi neuro we’ve ever had.  The Dr. that replaced her is a sleep specialist and informed us that she knows nothing […]

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Meet Jordan

April 14, 2014 by

This is an addition to “Ten years in”. Just wanted to introduce you to our sweet girl. And in case you all didn’t know, April 16th is National 4P awareness day!

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every morning that there is a trip to the doctors office i always prepare myself for bad news and im pretty sure that is what the daily life is for families that have children with whs. i spent weeks preparing for this month. why? because it was revisit to every specialist. so far we visited […]

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Adventures in Communication

December 14, 2013 by

Hello, friends, In April, I stumbled upon this excellent article, An Open Letter to the Parent of a Child with Speech Delays. The piece was so thorough and helpful and seemed to be written precisely for Fiona’s situation (and seemed to address, with lots of compassion, all of my own feelings and initial responses to […]

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I don’t even know how to start this off. usually when i’m outside with talon i usually get the oh my your baby is beautiful or how old is he and the usual congrats. but yesterday it made me realize that they’re are some snotty people out there. yesterday was a back to back appointment […]

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at times i catch myself sitting and thinking way to much. more so when sitting in the waiting room at the dr’s office or the lab. yesterday for example i saw two different kids. one perfectly fine and singing a long to spongebob’s theme song and another sitting in a wheelchair with a few noticeable […]

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As we’ve gone along our journey we’ve had the greatest support from family and friends.  This is everything to us as we don’t walk alone. We Wear Orange for………                                 . Phia’s Grandparents, (while supporting another grandchild’s football game) proudly wearing orange. […]

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where does someone begin with this. I would say it all started maybe sometime around the summer of last year. I was sent to the hospital and found out I had a miscarriage to a pregnancy I didn’t even know about. that day I was told I couldn’t have kids or else I wouldn’t survive. […]

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Charlotte Ellen Grantham

September 6, 2013 by

This is the story of our daughter Charlotte Ellen “Charlie” who was born September 24, 2012. She is our fourth child and is such an amazing and beautiful baby girl. She was 5lbs11oz when she entered this world and that should have tipped us off. All of her siblings were 9-10 lbs and here we […]

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I am so happy I could just burst!  Emily Rose can roll over from front to back, in both directions!  And she’s only four and a half months old!  Her non-WHS brother achieved that milestone at 4 months old!  Believe it or not, she’s actually been doing this since she was two and a half months old, but […]

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Does anyone have any advice about navigating questions from strangers?  It seems like everywhere I go, someone has to ask me something about my daughter. “Oh!  She’s so cute!  She’s so tiny!  How old is she?” – well-meaning stranger “Four months old.” – me “Oh.” (insert awkward pause)  “Is she a preemie?” – semi-well-meaning but […]

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Fiquei muito feliz ao encontrar este site que fala de crianças com sindrome de wolf hirschhorn, tenho um filho de 18 anos, e apenas no ano passado é que descobrimos que ele tinha esta sindrome, até então ele era diagnosticado pelas características físicas como sindrome de optiz. Para nós foi uma grande surpresa, depois de […]

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Back in 2011 we launched the wolfhirschhorn.org discussion board and, although there was a lot of great activity from the community, it eventually became over-run with spam comments and we were left with no choice but to shut it down. We have now cleared all the bogus messages and taken some additional measures to make […]

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First time on site. Schools

February 2, 2013 by

My son Joseph is 15 years old  but I have never posted on this site. My job may transfer me to another state . We are now in new jersey. Joe has always been in a private school and has done wonderful. In fact He won a gold medal In the equestrian division of the […]

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Quick Sabrina update!

December 18, 2012 by

Hi everyone! Hope you and your kiddies are all well and enjoying getting ready for Chirstmas. I feel like I am long overdue for an update on my Sabby Sab. This year has had its ups and downs and its fair share of hospital stays, but at the moment Sabrina is healthy and happy as […]

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Meeting up with other parents.

December 10, 2012 by

I was looking on the map and it shows that somebody lives in Salisbury, NC and I live in Rockingham, NC. I think it would be awesome if we could meet up and talk! I really think it is a good idea if everybody could look onto the map and see if anybody is near […]

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Don’t be afraid! This little monster is our little precious angel!  She has touched many lives in her first 32 months!  Happy Halloween xoxo

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