New wheels and new school!

This week Hugsie got his new "big boy" wheel chair - with personalised embroidery and all! A little splash of yellow makes it a bit more fun and child like and Archie (Hugo's little brother) is thrilled as yellow is his favourite colour! 

In other big news, Hugo has been accepted to St Lucy's school in Wahroonga which means the family is on the move. It's certainly hard to believe that little Hugsie is going to be a big school boy. Mum and Doug will be selling their Bellevue Hill house and making the big move up to the upper North shore of Sydney so that Hugo can start there next year. They've bought a beautiful house with stunning outlook and a swimming pool (a long time dream of Mum's!). So it will be a very busy 6 months getting everyone moved and settled but fantastic news as the school will be perfect for Hugsie. As we have also recently moved to the North Shore it will be good to have everyone close by. 

What it does mean is that the nice sits outside in the sunshine near the spa at Bellevue Hill with nanny Jodie will come to an end in due course, and as you can see Hugsie loves to do that! 

Until next time!

Clare, Hugo and family xx

What's been happening....

Well it's been a few months since the last post and that's my fault as we have been buying, selling and renovating a new house for the family. During these months Hugo has come along in leaps and bounds and we are well overdue for an update!

Here's a few of the major milestones...starting with Hugo's new ability to Houdini straight out of bed each night! The blankets couldn't be tucked in more tightly but no matter what happens he's out. With his new ability to also sit up on his own this makes for a bit of a dangerous combo of tricks so he's getting a new bed - more on that soon! 


In February Hugo had fun celebrating his cousin's first birthday. Here he is with his brothers and Aveline. 

March saw a fun trip to a Babies Proms concert at the Sydney Opera House with Bunny and Bertie and Caleb. 

Hugo is getting huge enjoyment out of being a preschool boy at Waterford in Sydney's Eastern Suburbs. Fiona, Fran, the educators and the other families at Waterford have been incredibly supportive and welcoming to Hugo and his involvement with other kids in and with the day to day program has been hugely beneficial. Like other 4 year olds he loves water play and art and enjoys the music sessions. He loves to bounce on the trampoline and he's made some friends who enjoy playing dress up and role play games with him. He's now able to sit with the other kids on little chairs and participate in his own way with what they are doing each day. Here's a few photos of things he's been getting up to there: 

Hugsie has also made some incredible physical developments in the last few months. His walking is getting better and better each day, including now spending increasingly longer periods of time being able to support himself at the walker. A few weeks ago at his physio session he walked all the way down the entrance ramp and out on to the street on his walker! It takes hours of practice and persistence but day by day and step by step this is certainly paying off! 

One more big physical change has also been Hugo's new painted artificial eye. This has been something we've been keen to have for a number of years but have had to wait until his eye socket was mature enough for this to be worth it (so the prostheticist doesn't have to paint it regularly as the eye shape changes). So this was quite a fun and different change for Hugo a month or so ago. It took some getting used to for us actually. To see him with two "real" eyes, instead of his normal characteristic white socket, was quite a new thing for us - but it really gives him a new character. It's been hard to get a good photo of this yet - but we'll keep working on it! (it's his right eye in case you can't tell!!!)

Finally, a few family photos we've taken recently. These are always rare for us so a nice thing to have. The challenge of getting three wriggly boys to all sit still at one time is always interesting - so there's certainly room for improvement in capturing this photo as well :) You can see it's much easier when we only have to get Hugsie to try and smile on his own..! 

Until next time...!

Clare, Hugsie and the family. xx

The holidays!

Well Hugo's been having a busy time since the last post on the blog. We've had Christmas, he went on holiday to Tasmania and today he's starting preschool (how grown up!). But I'm getting ahead of myself, because before all that fun Hugo had a bit of a set back. The picture below gives you a hint...

Yes, that's right. Just before Christmas Hugo had an accident and broke his arm. Poor little thing. As you can see this made him very sad and sorry for himself. It was a nasty spiral fracture and was very painful. It meant some time away from his physio and other therapies and generally made life a more difficult than normal. Although there were a few goes at getting the right treatment (as often is the case with us and the hospital!), it was finally agreed that he would have his arm, unplastered, in a sling for 6-8 weeks and that the pull of gravity would heal the bone. This happens quite quickly in young children apparently, but amazingly, as is always the case with little Hugo, he has bounced back in a much shorter time than we all expected and within about 5 weeks the break was largely healed and he is now pretty much back to normal life.

So what else has been happening?? Well we've had Xmas, which we had with all the family. Here is Hugo opening his Santa presents. 

Bunny and Bertie also took Hugo on a holiday to Tasmania where they all had a lovely, relaxing time. Here he is with Bunny in the park at Launceston. Bertie and her family are all from Launceston and my sister and I used to play in this park as children ourselves, so it's lovely that Hugo could visit and enjoy the sunny weather. 

He's also had time playing with his brothers while they have been on school holidays. Here are Hugo and Archie playing at Hugo's light table last week. 

And finally, to finish this update, here is a lovely video of Hugo playing peek-a-boo with his OT (occupational therapist) a few days ago. How clever he is to have worked out the game - and you can tell by his reaction at the end that he was very pleased with himself and found it quite funny! 

Until next time!

Clare, Hugo and all the family. xx

Hugo's first steps

This is the first post on our new blog where we will keep you up to date with Hugo's progress and offer any advice and tips we pick up about how to navigate the complex disability sector and how to advocate for your own child with special needs. 

To kick off the blog we start with some fantastic and amazing news - and that is that this week Hugo took his first couple of steps. Check out the video!