The following post was composed by a grade 4/5 class who love Ali as a classmate, a friend, and a boy with WHS. We want everyone to know what he means to us. By Division 6, W… Elementary There are very few people that have Wolf-Hirschhorn Syndrome in the world but in Division 6 [...]
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Some time ago, I wrote an article about our children and what siblings mean to them across all phases of their growth and development. There is no question that today, Kendall has developed more quickly due to the presence and interaction that her siblings provide her on a daily basis. Some of the activity she’s [...]
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Looking at her now I find it hard to believe Mia’s the same tiny baby we brought home from the hospital 2 years and 3 months ago. She weighs 15lb and 5oz, can transition in a controlled manner from sitting to lying, roll like a boss in all directions and prop her self up on her [...]
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 →Back a few months, I signed up some additional help with the wolfhirschhorn.org-1-man-show by adding Ross Lennox. To this day, his existence continues to be irreplaceable to all of us in ways that nobody will ever notice. I can’t thank him enough for all that he has done to keep the site live, up to [...]
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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 [...]
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I remember when Alexander was young. I’m going to be brutally honest about my arrogance. He was so young and we had years and years to prove people wrong. The one thing I know for sure Children with WolfHirschhorn Syndrome will fight ….. they are fighters. I pushed him to eat orally. He fed from [...]
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I hear a lot of people say, “Oh where did the time go?” or “When did this happen?” when their children turn a certain age. I know I was guilty of this when the boys both entered Kindergarten and for Joey, Middle School. Today Amelia turns five and this is the furthest sentence from my [...]
Continue Reading →I’m not sure if I’m writting this in the right place but hey ho. I’d like y to introduce my daughter Ava, she was born on 27th January 2012 weighing 4lb 2oz. (we live in the UK) Anyway here’s our story… We found out she had whs when I was 30 weeks pregnant.. It [...]
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Nathaniel has had what looked like fluid-like red bumps on his lower back from the time he was born and they stayed the same….never changed. But at the end of December I noticed what looked to be a heat rash under his pits….this was a week before admitted for Pneumonia. I figured it was probably [...]
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 [...]
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Well, so much has happened since my last post. Nathaniel spent this past Halloween in the hospital. That’s when he was sick and lost weight, so he had an emergency g-tube placed. Then 11/27/13, there we were, back in PICU-seizure. Then 12/27/13….he was originally admitted because of Pneumonia and respiratory distress. A few hours later [...]
Continue Reading →Hi everyone, I’m posting this in here because it seems that the discussion area has been spam attacked. Isabella is going to have the strabismus surgery on the 14th this month, this is her first invasive surgery so i’m a bit anxious. Has anyones kids gone thru this, if so can you let me know you [...]
Continue Reading →Elsa just turned 1, and we’re looking forward to lots of progress in 2013. We’d love to share her current status across a few areas — ones that we’re always keen to read in other people’s posts, as we look to the future and wonder what might be in store for our angel. Hope this [...]
Continue Reading →Hi everyone, It has been a while and i’m glad to be back and active! Much has happened and i’m not sure where to start. Many questions to ask too and was really hoping i can use the WHS network here to get some answers. So here goes the update! Weight and Height Isabella is [...]
Continue Reading →Wishing a very merry Christmas to all our wh.org pals, and all the best for a happy, healthy 2013 when it comes!
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 →Hey everyone! I have been meaning to talk about the progression of this web site and the WHS.org community over the past 3 months but haven’t found the time to spread the news. I am excited to announce that Ross Lennox, father of Mia is “officially” an integral part of wolfhirschhorn.org. Over the past year, [...]
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I am going to take a cue from Kevin’s post on Kendall’s five year milestones, and do something similar for my son Frank, who just turned three this past weekend. I find it helpful to have some idea where other kids are at, and I hope this will be helpful to others. Frank has been [...]
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I was hoping I wouldn’t have another update so soon. So, as you may have last read, Nathaniel had a touch of the stomach virus on the 22nd (Mon.) and saw the doctor on the 26th (Fri.)…..on the 29th (Mon.) had to go back to see the doctor because he hadn’t been eating and had [...]
Continue Reading →This is Liam Francis Donovan. He is 6 months old and is a little monkey he originally was going to be Eeyore, as that is his best friend. However I couldn’t find Eeyore in his size so we decided the next best thing to showcase his silliness would be a monkey! Liam hopes you think [...]
Continue Reading →We were last minute costume people this year, just found what we already had and dressed up! So this year Miss Emma is a ballerina, not your typical ballerina obviously, that is NOT a ballerina bun for sure! Emma enjoyed trick or treating this year with her sibs and some of her cousin! We only [...]
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