What’s New with Norrah
We’ve meant to post an update on Norrah for quite some time. In various moments and seasons we’ve thought – “we should really write about this” only to find that our daily life routines (and unexpected events too) distract us from putting fingers to keyboard and telling our friends about our little lady and all of her […]
Continue Reading →Norrah: The Little Engine That Could
It’s a classic tale, The Little Engine That Could. An engine pulling train cars full of toys, games and treats for a town full of good little boys and girls breaks down while climbing a mountain. The toys aboard the train are desperate to get to the town on the other side of the mountain […]
Continue Reading →She is Three!
It has been several months (OK, five) since my last update on Norrah. In the course of the last 5 months our family has made some major changes and so has Norrah. Norrah is now 3! Her third year of life was an eventful one filled with so many new and amazing accomplishments. Norrah is […]
Continue Reading →It’s Official
Norrah has been walking with assistance for quite some time. Honestly, some days I thought she might ALWAYS need some type of assistance, not for her physical body, but for her EGO! She seemed to be so wary of taking steps on her own, even though we could sometimes coax her or trick her into […]
Continue Reading →Happy New Year
It seems that every year on New Year’s Eve Norrah declares to our family that she is indeed an overcomer and that we have lots to look forward to in the new year. Last year (12/31/2009) she surprised us by deciding to stand for the first time ever. Assisted standing was her New Year’s Eve […]
Continue Reading →Norrah’s New Favorite Word
SHE WALKS AND TALKS
Check out the most recent videos of sweet Norrah! She is walking in her walker (without assistance) and saying lots of new words these days. We are in awe – as always.
Continue Reading →On Her Way
Norrah is learning to walk. Though she has had her walker for many months, she has usually had a love-hate relationship with it. She loves to look at it, pull up on it and play with it. She hates to “do work!” in it. That is, until recently. The video does not do her justice, […]
Continue Reading →SHE’S TWO!
Norrah turns 2 years old on Thursday! I cannot believe how quickly time flies. Since we have a busy weekend planned I thought that I would write her ‘birthday post’ a few days early. Norrah’s second year of life was filled with miracles and memories. She learned to feed herself and is now eating a variety of […]
Continue Reading →Norrah Videos
Check out the videos below. They include clips of Norrah reaching milestones and living life. She is our littlest miracle and I cannot believe that she will be two in less than two months! *Please disregard the poor lighting, the crumbs on the floor, dirty clothes in the bathroom and the fact that my kids […]
Continue Reading →The Odds
**This post has been republished from our personal blog, KnowingNorrah. Two disclaimers: the view points in it are my own and not necessarily the opinion of this site. And – as we have all discussed and even recently posted about, the odds of WHS may be even slimmer than the “1/50,000” currently cited in medical […]
Continue Reading →Hope Loves Company
*Below is a blog post that was written in September 2009 and originally posted on our personal blog KnowingNorrah. Enjoy.* “There’s this saying – I’m sure you’ve heard it “misery loves company.” I haven’t said those words too often, probably because I don’t quite know what the statement means and I certainly do not want […]
Continue Reading →It’s Not What You Think
Wolf-Hirschhorn parents, family members, doctors and therapists are rising up and I LIKE IT. The crowd is getting motivated to produce change and that makes my little heart go “pitter-patter” with excitement. We are no longer willing to let outdated scientific studies with gloomy photographs of emotionless kids in corners, poor prognosis and all-encompassing phrases like […]
Continue Reading →A Post Where I Brag About Norrah
Yea… the title says it all. This is a post where I brag about Norrah. On our personal blog and here on the WHS blog I haven’t really said much lately (SO UNLIKE ME, I KNOW). We are having some health issues in our family that have NOTHING to do with Norrah or WHS and […]
Continue Reading →Norrah Videos
I just wanted to post a link to our YouTube Channel for your viewing pleasure! If you click on THIS LINK you will be directed to our YouTube Channel where you can check out all of our uploaded videos and find several clips of Miss Norrah! You will also find some videos of her big sister Izzy. We do […]
Continue Reading →What on Earth Do You Feed Her?
This is a copy of a blogpost from our personal blog, KnowingNorrah (http://knowingnorrah.blogspot.com). Since so many WHS moms have asked me about Norrah’s diet I thought this was an important post to put on the Wolf-Hirschhorn Blog too! FYI: at most recent weigh-in our 20-month-old Norrah is 24+ pounds and 33 inches tall. “To be […]
Continue Reading →Introducing Norrah
In as short and as SWEET of a post as I can (which is no small feat for a person like me) I wanted to introduce my daughter Norrah. Norrah was born on July 1, 2008. My pregnancy with Norrah was fairly uncomplicated until my 20-week ultrasound that revealed two markers for genetic disorder namely a 2-vessel […]
Continue Reading →Donate to wolfhirschhorn.org
subscribe
Contribute Your Story
To share your story, create your LOGIN and sign in once you receive your password via email. After logging in, write your story, upload pictures and publish your story! It's that easy. If you would like to comment on our stories, you can comment without creating a login. Each comment is posted once approved. If you need help, please email us.WHS Growth Chart
In 2007, a WHS growth chart was created. Download the Wolf-Hirschhorn Syndrome Growth Chart here.Most Popular Topics
1st Birthday 2011 Easter Birthday contest results Dentist development Doctor Visits Early Intervention eating family feeding Feeding Tube food Fund Raiser Halloween Halloween 2011 Halloween Contest Holiday Hospital introduction IQ Kidney Transplant kidney ultrasound Magnolia milestones Nayana Parent Profile physical therapy pictures School scooting Seizures Siblings Sitting Position Social Media Special Needs Speech Therapy talking Therapy Top 10 List Unborn Child update video Walking Weight GainSelect Your Story
- Addilynn (2)
- Alexander (9)
- Alexia (2)
- Ali (1)
- Amelia (23)
- Ansel (1)
- Arianna (2)
- Arin Rae (16)
- Ava Lynn (8)
- Ava Ruby (1)
- Bethany (2)
- Blake (3)
- Brett (2)
- Brodie (15)
- Caroline (9)
- Casen (1)
- Cassidy Renee (2)
- Charity (1)
- Charlotte Ellen (1)
- Claire (3)
- Clover (3)
- Contest (19)
- Corrine (1)
- Corwin (2)
- Dakota (1)
- DeLaney (1)
- Deliany (1)
- Denise (3)
- Devin (3)
- Dylan (16)
- Elijah (4)
- Ellye (3)
- Elsa (32)
- Emily Rose (5)
- Emma (7)
- Esme (3)
- Esperanza (2)
- Evan (2)
- Eve (3)
- Evelina (1)
- Evvie (2)
- Featured Stories (14)
- Fiona (4)
- Frank (6)
- Fund Raiser (13)
- Garner (1)
- General Information (23)
- Giveaway (3)
- Grace (5)
- Halloween (28)
- Harry (1)
- Hayden (2)
- Isabella (4)
- Isabella N (6)
- Jaap (1)
- Jada (2)
- Jake (1)
- James Douglas (2)
- Jon York (1)
- Joseph (1)
- Juliana (2)
- Justin (1)
- Karly (4)
- Karson (2)
- Kaylee (13)
- Kayleen (1)
- Kendall (82)
- Kinga (2)
- Leo (2)
- Liam (7)
- Liam John (1)
- Lisa (3)
- Lists (2)
- Lucy (1)
- Madison (7)
- Magnolia (7)
- Marley (2)
- Marshall (1)
- Mason (3)
- Matilda (1)
- McKenzie (6)
- Mia Rose (27)
- Natalie (1)
- Nathan (1)
- Nathaniel (28)
- Nayana (3)
- News (3)
- Norrah (18)
- Olivia (1)
- Olivia Grace (6)
- Olivia Stella (1)
- Paisley (1)
- Parent Profile (2)
- Peyton (4)
- Quinn (2)
- Reese (1)
- Region Gatherings (2)
- Renee (1)
- Rheyn (6)
- Riley (6)
- Rochelle (3)
- Ryley (2)
- Sabrina (10)
- Savannah (1)
- Sergio (2)
- Shadyn (1)
- Social Media (10)
- Sophia (6)
- Talia (2)
- Talon (1)
- Tanner (13)
- Taylor (10)
- Taylor T (3)
- Teejay (4)
- Tommy (2)
- Tyler James (5)
- Tyler Jay (1)
- Unborn Child (7)
- Uncategorized (128)
- Vincent (1)
Google Ads 1
Google Ads 2
Google Ads 3