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I have been reading WHS stories on this website for a while, but never wrote anything myself. My daughter Cassidy was born on June, 5 2012. She has WHS… My entire pregnancy was fine. Neither ultrasounds nor prenatal doctor visits showed any abnormalities with her. We could not wait to meet her, but she was [...]
Continue Reading →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 [...]
Continue Reading →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 [...]
Continue Reading →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 [...]
Continue Reading →Hey everyone, In light of some really great posts about the milestones our kids are reaching and when, I posted this on my blog. If you want to scroll past the reflection and just get to the milestones, you’ll see a list of what Fiona does at 18 months. http://starinhereye.wordpress.com/2012/12/16/what-my-daughter-can-do/
Continue Reading →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 [...]
Continue Reading →Amariah is making great strides in school. She is using a touch screen computer for activities and has begun typing this week. She is trying to get her name down pact. Baby steps, but I am proud of her. Am
Continue Reading →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 [...]
Continue Reading →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
Continue Reading →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 [...]
Continue Reading →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!
Continue Reading →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. [...]
Continue Reading →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 [...]
Continue Reading →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 [...]
Continue Reading →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 [...]
Continue Reading →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!
Continue Reading →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 [...]
Continue Reading →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 [...]
Continue Reading →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 [...]
Continue Reading →Nayana is 5 months this October. Time sure flies by!. I admit i dont get to log on here as much as i’d like but I would like to say that i really do appreciate all of the well wishes we have received. I try to read everyone’s posts, nd im saddened by some of [...]
Continue Reading →Happy Halloween! I can’t believe it has been 2 years since McKenzie has entered our life. She is a joy and learns new things each and everyday. I can’t wait to see all of the other kiddo’s in their costumes. Good luck!
Continue Reading →Karson is now 13 months old. He is receiving speech therapy and physical therapy. One of his goals for physical therapy was rolling and raising his head for more than 15 seconds. I’m proud to say that he has reached both of those! Now I can’t take my eyes off of him; he’s rolling everywhere! [...]
Continue Reading →Leo the Lion is roaring!!! He is so excited about Halloween and wants to wish all his WHS friends a Happy Halloween. We all know how strong our kids are and so it only seemed fitting to make him a lion for Halloween. Although, I was quite surprised when I “roared” at him, he “roared” [...]
Continue Reading →So guys its been a while since our last blog….. Grace turned 1 back in july… it was a good day but a great sadness shadowed us as to where we stand with milestones…. or what little milestones we have achieved along our 1year journey. It takes great effort to write this as although we [...]
Continue Reading →The 7 month mark brought a bunch of exciting events for our Elsa. In honor of the milestone, we’ll share the top 7 highlights: 10 pounds: Elsa made it to double digits around July 4. She was cookin’ for quite a while, after we switched from Level 2 to Level 3 nipples. That seemed to [...]
Continue Reading →Nayana is 2 months old now. And these past 2 months have been a whirlwind of one appointment after another.Two weeks ago she finally got her NAM device. i don’t have any pics of her with her NAM device uploaded yet but here are some pics of her when she was only a couple [...]
Continue Reading →20 months?! That cannot be right, because if it is that means that in 4 months she will be 2! How did that happen? Magnolia’s personality becomes clearer everyday. She loves to be in the middle of everything. She has started to make it known to everyone around when she is mad and not [...]
Continue Reading →Nayana was born May 23,2012. We found out she had WHS via an amnio after an ultrasound found she had a bilateral cleft lip and palette and that she seemed to be growing at a slower rate then she should have been. The months following the diagnosis were filled with denial,depression,and then by the time she was [...]
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