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New mom with questions

November 29, 2013 by

Hello everyone! My son Elijah was born almost 2 months ago and right away the doctor mentioned a possible chromosomal disorder, so the possibilities have been weighing on me for a while now. However, we finally received his diagnosis of WHS on Monday of this week. I’ve been researching all I can and I’ve read […]

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One of the most beneficial things we can do as a group is help each other on tips and tricks around being a parent of a wolf-hirschhorn child. For us, one of the scariest things that we faced with Kendall is wondering how to effectively care for her feeding tube and Mic-key button. So, we […]

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As a group, we need to stand up and applaud each other, thank our families, and be proud of our accomplishments. A bubble was building and it finally popped. We all know the story now and if you don’t, just check out this link: Brick Walls. On Friday, January 13, 2012, a historical event occurred […]

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Hope

November 11, 2011 by

I’ve been trying to explain what this website is to my friends and family. As I encourage them to come here and read our stories, I find myself attempting to describe why this website is different.

This website is HOPE.

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It’s going to be the road trip of a lifetime. I made my list and have packed my bags and made my go, do and see plans for when we reach our destination. However, I didn’t have a plan for when the travel does not start the way I want it to. In spite of […]

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Please remember that life can change in an instant. There are people already in your life that you love unconditionally, and you would go to the ends of the Earth for them…. don’t worry – you will feel that way about this baby also.

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So, we are in LOVE with the iPad and so is Tanner.  I’m writing today to show you ours, how amazing it is and to possibly help you get one for your WHS child as well. When I first heard about and started to research the iPad and it’s “special needs” applications I knew we […]

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For those of you that have mastered the arts of the G-Tube, this information is probably old school. However, for those of you that are just venturing out into the feeding tube world, you might find this post helpful.

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Three years ago, I wondered if my daughter Kendall would talk at all. Well, she talks, and actually, it’s hard to get her to be quiet! Some of what she says doesn’t make much sense, but some of what she says has quite a bit of meaning. At the ripe age of 3 1/2, here are the Top 10 words she uses on a daily basis:

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It’s been almost 1 year since the original wolfhirschhorn.org site was launched and we’ve come a long way. Here are a few facts that I wanted to share with all of you.

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Of course, we all know the negative that is scattered about, with doctors and geneticists labeleing the early renditions of the syndrome as scary and ridden with horrifying outcomes. That is about to change.

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Evvie is about 45 lbs at 9.5 years. She can walk, but she tires easily and if she gets worn out, she has seizures. She loves to go places, and since she outgrew a stroller, we (mostly my husband)have just carried her on our shoulders when she gets tired. We can’t do that anymore with […]

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Hello? New teacher, or therapist, or doctor? Is that you? Oh hello… I just wanted to chat with you a second. To caution you. Or warn you. Please, tread carefully. You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, […]

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WHS growth chart

October 28, 2010 by

Sabrina’s Dr has given us a growth chart based on children with WHS from 0-4yrs old. Is anyone else using this? Just curious…

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Wolf-Hirschhorn Frequency

April 26, 2010 by

I don’t recall the who exactly quoted that Wolf-Hirschhorn is a 1 in 50,000 frequency. This number has stuck in my head for 2 years now, which is how long we’ve known about Kendall’s diagnosis. We’ve all read about this number and wonder at times how we got selected as that 1 occurrence. Well, I have been really questioning the WHS rate of frequency for some time now and I really can’t seem to pin an accurate number on it.

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