Mia – Spring 2013
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 →WHS discussion board open for business (again)
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 →Merry Christmas from Scotland!
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 →Mia – Autumn 2012
It has been a few months since I last posted. So here’s a quick update on how we are and where we’ve been… Mia will be 21 months old in a week or so, she weighs about 14 lb and is generally doing great. We did have to spend a night in Intensive Care last [...]
Continue Reading →If you’re happy and you know it…
Over the past few weeks Mia has blown us away by picking up a small but increasing vocabulary of verbs that she understands and will respond to accordingly. So far these include ‘clapping’, ‘dancing’, ‘kicking’ and – cutest of all – ‘kissing’. Forgive the singing, but here is a short video clip of Mia showing [...]
Continue Reading →Mia’s 17 month update
Mia will be 17 months old next month. Recent achievements include sitting unsupported (for a short time), clapping her hands, dancing to music, recognising her name and she is currently cutting her first four teeth – none of which are at the front of her mouth! Mia’s epilepsy remains well controlled on an increased dose [...]
Continue Reading →Mia giggling…
Nothing much to say in this post, other than to share the magic of a baby’s laughter… enjoy!
Continue Reading →To iPad or not to iPad? That is the question…
I’ve been toying with the idea of buying a tablet PC for a while now, half selling it to myself (and Vicki) on the strength that Mia would benefit, while honestly thinking she was probably not quite ready. Over the past weeks, however, I have noticed Mia showing a newfound fascination in my phone – [...]
Continue Reading →Splash Splash!
Mia, albeit as a fairly passive participant until now, has always seemed to enjoy her bath time. Something she discovered during our recent trip, however, was the unbridled joy of splashing. Moreover, she seems to take great pleasure in responding to her deranged parents’ incessant demands of “ready… steady… splash, splash, splash!” This short clip was taken during [...]
Continue Reading →Mia goes Stateside
We just got back from a fantastic family vacation in the U.S. where we spent a glorious week in sunny Florida and had a few magical days in New York on the return leg. Given Mia’s respiratory virus and multiple seizures earlier in the year we had more than a few reservations when it came [...]
Continue Reading →Mia’s March Milestones
Mia turned one on Jan 17th. We threw a party and had a really fun day with all our friends and family, but a combination of the disruption to Mia’s routine on top of an ongoing respiratory virus resulted in a cluster of seizures over the following two days and yet another hospital admission. Such [...]
Continue Reading →Just when you least expect it…
Mia has had a runny nose on and off for the best part of a month and a cough for a last week or so. She hadn’t seemed too miserable with it and wasn’t running a fever but on Saturday morning, seemingly out of the blue, she had her second full-blown seizure. It followed exactly [...]
Continue Reading →Mia’s Winter Update…
Hard to believe (for me at least!), but Mia will be 11 months old later this week. Since her first – and, to date, only – seizure back in mid-October the Keppra seems to be doing its job; although we still see the occasional twitch or absence, never lasting more than a few seconds. Between [...]
Continue Reading →Happy Halloween from Scotland!
Happy Halloween, everyone! From our little pumpkin, Mia Rose.
Continue Reading →Mia’s First Seizure
From the first time we heard Mia’s diagnosis and read through the seemingly endless list of possible complications that Wolf Hirschhorn can present, the one thing that made my blood run cold with fear was the thought of having to witness my beautiful baby daughter having a seizure. On Sunday evening I fed Mia her [...]
Continue Reading →Can it really be 9 months already?!
Hi everyone. I haven’t been checking the site so much lately but have really enjoyed catching up with all your stories just now. It has been a busy but fun few months for us, so I’ll try and fill you in with some of what we’ve been up to… Mia will be 9 months old [...]
Continue Reading →Naming Day
This was a big weekend in our house! On Saturday we threw a party for Mia’s ‘Naming Day’, our first big party as a family, and on Sunday she turned 6 months old. We invited about 50 friends, family and neighbours over to our place for food and drinks; Vicki and I made a speech [...]
Continue Reading →Reaching, grabbing, batting & swatting
Over the past few weeks Mia has started ‘finding’ her hands and loves taking a pop at whatever is dangled within jabbing distance. Current favourite is this elephant mobile brought back as a present from a trip to Cambodia back by a friend of ours. Thanks Sam!
Continue Reading →Mia at 4 months…
Mia was 4 months old last Tuesday; that’s one third of a year! I simply cannot believe how the time has flown since she entered into our lives. And like most new parents, life pre-baby seems like a distant blur. We are really lucky that Mia is continuing to feed well, so well in fact [...]
Continue Reading →11 weeks on…
…and it seems like a lifetime already! Mia is thriving and has put on over 2lb since she was born, she is now hovering somewhere around the 6lb mark. She’s starting to hold her head up and thrilling us daily with the beginnings of smiles. Last week, for the first time, she was big enough [...]
Continue Reading →Along came Mia…
Our story begins much like many of the others I have read here. Throughout Vicki’s pregnancy a lot of friends, relatives and colleagues had commented on how “neat” her bump was.
Continue Reading →Donate to wolfhirschhorn.org
Discussions
Recent Comments
- Tamara on Meet my little treasure Cassidy Renee
- Letty on Meet my little treasure Cassidy Renee
- RANJU NAIR on Meet my beautiful Niece Nayana
- Tamara on What I know…
- M on Meet my little treasure Cassidy Renee
- Janet on Meet my little treasure Cassidy Renee
- Tamara on My angel, Cezara
- aura on Meet my little treasure Cassidy Renee
- aura on Meet my little treasure Cassidy Renee
- Tamara on Meet my little treasure Cassidy Renee
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 Christmas contest results Dentist development Doctor Visits Early Intervention eating family feeding Feeding Tube food Fund Raiser Halloween Halloween 2011 Holiday Hospital introduction IQ kidneys Kidney Transplant kidney ultrasound Magnolia milestones physical therapy pictures School scooting Seizures Siblings Sitting Position Social Media Speech Therapy talking Tethered Spinal Cord Therapy Top 10 List Unborn Child update Vacation video Walking Weight GainSelect Your Story
- Addilynn (2)
- Alexander (8)
- Alexia (2)
- Ali (1)
- Amariah (3)
- Amelia (22)
- Arin Rae (16)
- Ava Lynn (8)
- Ava Ruby (1)
- Blake (3)
- Brett (2)
- Brodie (15)
- Charity (1)
- Claire (3)
- Clover (3)
- Contest (17)
- Corrine (1)
- Corwin (2)
- Dakota (1)
- DeLaney (1)
- Deliany (1)
- Denise (3)
- Devin (3)
- Dylan (13)
- Elijah (4)
- Ellye (3)
- Elsa (6)
- Emma (7)
- Esperanza (1)
- Evan (2)
- Eve (3)
- Evelina (1)
- Evvie (2)
- Featured Stories (15)
- Fiona (2)
- Frank (6)
- Fund Raiser (5)
- General Information (14)
- Grace (5)
- Harry (1)
- Hayden (2)
- Isabella (2)
- Isabella N (6)
- Jake (1)
- James Douglas (2)
- Jon York (1)
- Juliana (2)
- Justin (1)
- Karly (4)
- Karson (2)
- Kaylee (13)
- Kayleen (1)
- Kendall (78)
- Kinga (2)
- Leo (1)
- Liam (4)
- Lists (2)
- Lucy (1)
- Magnolia (5)
- Marley (2)
- Mason (3)
- Matilda (1)
- McKenzie (6)
- Mia Rose (20)
- Nathan (1)
- Nathaniel (19)
- News (2)
- Norrah (18)
- Olivia (1)
- Olivia Grace (5)
- Olivia Stella (1)
- Paisley (1)
- Parent Profile (2)
- Peyton (4)
- Reese (1)
- Region Gatherings (2)
- Renee (1)
- Rheyn (6)
- Riley (6)
- Rochelle (1)
- Ryley (2)
- Sabrina (9)
- Social Media (7)
- Talia (2)
- Talon (1)
- Tanner (13)
- Taylor (9)
- Taylor T (3)
- Teejay (2)
- Tommy (2)
- Tyler James (5)
- Unborn Child (7)
- Uncategorized (58)
- Vincent (1)