Currently viewing the category:
"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 →As our (annual) 2011 Halloween contest winds down, we close it with a few photos of the winning kids and their new iPads. Congrats to everyone! I had to add one extra of me, Kendall and Frank. I don’t have many pictures of me and 2 kids with whs!
Continue Reading →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 →
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 →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 →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 →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 →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 →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 →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 →**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 →*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 →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 →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 →
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 →
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 →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 →