Posts by author: Ross
Hard to know quite where the time goes, but earlier this week our (not so) little Mia turned 12. Mia remains well and is growing feistier and more sassy by the day! She still wears a spinal brace but is booked in for surgery later in the year to hopefully correct her scoliosis and do […]
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Hello everyone, hope you’re all well. Mia will turn 11 in January, and she’s doing great. She still uses her wheelchair and walking frame, but can now also walk holding a hand, and recently completed a 5km walking challenge over the month of October. She wears a full torso brace to help with her scoliosis, […]
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A huge thanks to Cori Johnson, who reached out to us at the site and has very kindly agreed to let us share this beautifully put together video about her grown-up family. I hope you enjoy watching it as much as I did, and I’m sure you’ll agree that they’re a pretty inspirational bunch! […]
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Happy New Year, folks! Once again it has been too long… Life is busy, but all good. Mia will turn 7 next week, she’s doing great and continuing to follow her own leisurely but steady developmental curve. We appear to have broken the back of winter without any major illness and Mia’s epilepsy, thankfully, remains very well […]
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Can it really be 2 years since I last posted here? I guess so! Well, a few of you have messaged me asking for a Mia update, so here are a few pics from the past while… Mia turned 5 in January and started school in August last year, where she has been doing great. […]
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Hello friends – it has been a while… Mia is now three and a half and well-settled into her role as big sister. At 11 months, Finn is already considerably heavier, stronger and more mobile than his ‘big’ sister –but they get on like a house on fire and she still lets him know […]
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Happy New Year everyone! Compared with the last couple of years, I’m glad to report that Mia has had a great winter thus far and Dec 31st marked the end of a full year without any major seizures or unplanned hospital admissions. Mia’s eating has also picked up since my last post, so the g-tube […]
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Throughout Vicki’s recent pregnancy we were frequently asked by friends, family and colleagues whether Mia was looking forward to becoming a big sister. In truth, it was hard for us to tell one way or another – at most she seemed indifferent to the whole affair and, despite us talking to her about the imminent […]
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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 […]
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Wishing a very merry Christmas to all our wh.org pals, and all the best for a happy, healthy 2013 when it comes!
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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 […]
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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 […]
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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 […]
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Nothing much to say in this post, other than to share the magic of a baby’s laughter… enjoy! 🙂
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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 – […]
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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 […]
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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 […]
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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 […]
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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 […]
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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 […]
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Happy Halloween, everyone! From our little pumpkin, Mia Rose.
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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 […]
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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 […]
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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 […]
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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!
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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 […]
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…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 […]
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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.
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