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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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Hello All, I am so happy to finally be joining this awesome website made up of such a unique community. My Jada girl was diagnosed with WHS when she was about 2 weeks old. I had a pretty rough pregnancy. I was put on strict bed rest at 20 weeks, hospital bed rest at 31 […]

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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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Sassy Little Rock Star

November 4, 2012 by

Magnolia has just turned 2.  Some people call them the ‘terrible twos’, but we think Magnolia acts more like a pampered rock star.  She screams for attention when she is ignored, she routinely throws plates of food, leaving messy destruction in her wake, and draws a crowd whenever in public.  So it was an easy […]

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To know Ava, is to love her! She has the sweetest demeanor, always content and her smile lights up the room. She has changed so much this year … last year, I remember, she was 1 month old and was wearing preemie clothes; she only wore a hat as her Halloween costume. At 13 lb 2 oz, she now wears […]

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Rheyn: A silly scallywag who loves adventure, searching for treasure in toy boxes, sailing the seven seas of ye olde bathtub, and plundering anything from tabletops that’s left within reach.  Yo ho ho, a pirate’s life for me!

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Lucy a.k.a. Super baby

November 3, 2012 by

I often fly Lucy around the house to her delight and the delight of her big sister as I say “It’s a bird, it’s a plane, it’s super Lucy! Therefore, when I found this crime fighting Halloween costume, I knew it was perfect for my little angel.We had a great time on Lucy’s first Halloween. […]

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Little Lemur Tyler

November 3, 2012 by

Tyler is now 19 months old and doing great! He just got a g-tube and is finally gaining weight and has more energy.  He loves music therapy and being snuggled.  He is sitting up without assistance and bearing weight on his legs.  We hope to be crawling by Christmas He is happy little guy and loved […]

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We are excited for JD’s first Halloween. When dreaming about his excellent costume we wanted to embrace his orthotics rather than hide everything. When he was fitted for his boots he looked like a junior snowboarder . . .hence JD, World Champ Snowboarder was born. With a custom board, vintage vest, and killer eyewear JD […]

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esperanza is thelove of my life she is having teeth surgery on mon sleep study in nov also eyechecckup cleftpalate checkup in doc heart check up kidneys doing good no seizures yeah just wish she didnot get sick so easy shes turning book pages says four words trying sohard to sit up she is just […]

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Howdy I’m Aldrick from ATX, I’m 25 yrs old and I weigh 45lbs. They say I am rare..because I’m so small..my mom and my Drs. are always worried about me so,my mom took me to have a bone density film and as you can see these are my results. I AM PERFECT!! hAPpY hAlLoWeEn EvErYoNe!

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Halloween 2012

October 30, 2012 by

Taylor is having an AWESOME year. I hope and pray that each year to come is even greater than this one. Taylor had a great night Trick or Treating with family and friends. She hung in like a big girl. She ran house to house holding her own bucket and was even saying “Trick or […]

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Tiggerific

October 30, 2012 by

Peyton has been doing very well this year and has made great strides in his development. He is very mobile by scooting, rolling, or in his walker and has taken to growling at our very recently so we thought this costume was perfect for him. I also think he should replace Tony the Tiger on […]

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“room on the broom”

October 30, 2012 by

  Julia Donaldson’s ‘Room on the Broom’ is a wonderful children’s book about friendship overcoming adversity and so this Halloween my beautiful grand daughter Grace is dressed as the witch from that story surrounded by the animal toys that fill her nursery. No child could be more loved. Grace has a close and fiercely supportive […]

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