What happened in 2017!

2017 was a busy but happy year for Hugo. Here's a bit about what happened!

The year didn't start out terribly well as Hugo had quite a bit of illness early in the year. As soon as school started he had a few long stints in hospital with very bad respiratory issues - a couple of these very serious stints in intensive care. We originally put this down to aspiration or illness but it kept happening with no apparent other reason and so we then started to think about what else might be triggering these periods of respiratory distress. After much thought one possibility we came up with was that he was very allergic to mould. He had been attending physio at a local clinic situated in an old house. It was known that this house had mould in it in places and the physio did suggest this as a possibility for what might be causing his respiratory issues. This seemed like a plausible possibility and so we stopped taking him there (he now does physio at home) and once we did this he didn't have any other (serious!) illnesses during the year. Since those early stints in hospital last year he's been really quite well overall and (touch wood!) hasn't been in hospital at all!

Hugo otherwise has had a very happy and productive year. He's starting to make some real progress with communication and in the past few months he has learned to 'high five' with people as a way of saying hello, which is fun. You have to be very patient waiting for the little hand to come up and meet yours, but he does eventually do it. He's very pleased with himself when he gets praise for that and continues to always be very impressed with himself for doing clever things. 

His standing and walking are making progress, albeit slowly. He got a new walker during 2017 (see the photo above) which helps to support him better through the torso and he enjoys spending time on this walker more than the last once, which he found very tiring and didn't quite have the right level of support for him. He's making a little bit of progress on being able to propel himself on the walker on his own, but hasn't quite got the hang of that yet. If motivated enough he can work out how to get from place to place though - even if moving backwards! He did this in order to find some of his books on a table not long ago - making his way over to the little table just so he could swing his arm out and knock all the books on the floor. Go Hugo! :) 

School has continued to be really enjoyable for Hugo. He is very popular with his classmates and his best friend Maddison has been with him from kindy now, and is in his class again for 2018, which is lovely. They have a very special bond and Maddison rarely leaves his side at school. For the 2017 Christmas concert Hugo dressed up as a koala for the class performance, which was super cute - you can see a picture of that in the gallery above. 

2017 was our first year of NDIS funding. While we did end up getting a pretty good package of funding for Hugo's therapies, equipment and care support the interactions throughout the year with the NDIA were unbelievably frustrating and upsetting. I won't go too much in to all of that here, but it really was a difficult part of the year. However, in the end we have managed to get funding for some new car seats (one for our car and one for Bertie and Bunny) plus some other equipment that he desperately needed. But a great part of the year was that with the funding for a care/support worker for Hugo we were able to find Thomas who became a great support to the family and a great friend for Hugo. Thomas is a medial student who came to work with Hugo during the summer holidays while he was on a break from Uni. He did some great things with Hugo and even bought him a little basketball set - as you can see in the photos. Thomas has now returned to uni but we are lucky that his sister, Rosie, has joined us to help look after him after school on 2 or sometimes 3 days a week, which is a great support for Bunny and Bertie. So there have been some big bonuses about having the NDIS funding introduced, despite the frustrations that it has also caused. 

Hugo turned 7 in 2017 which we can't quite believe! He's now incredibly tall and is such a friendly and sociable boy. He continues to really enjoy the company of others and loves to be the centre of attention at parties and gatherings. Like his brothers he's a high achiever in his own way and is always incredibly proud of himself when he masters something new or when he does something clever. There's lots of examples of this in the gallery photos from the past year.

Overall it's been a pretty positive year for Hugo with not too much ill health, lots of happiness and enjoyment and some progress with his communication and physical achievements. He's recently started school for 2018 and has a wonderful teacher who is creating some fantastic experiences for him. He often comes home with a button recorded by his teacher with an update of the day and he loves to press the button and "tell" us all about what he's been up to. This is a great initiative given that he obviously can't tell us about his day himself.

We are looking forward to a fantastic year ahead and can't wait to report on his new achievements next time!

Clare, Hugo and the family xx 

End of year update

As usual I haven't had a chance to update Hugo's blog as much as I would like but I thought I would put together a bit of an end of year update about what has been happening throughout 2016. 

Hugo has enjoyed his first year at kindy. Earlier in the year we had to take some family photos so he could take these to school and some of these turned out really nicely so I thought it would put a few of these below. 

Hugo has made quite a bit of progress with a range of things this year. 

His communication has been improving quite a bit which has been helped enormously by his interactions at school. We are now seeing quite a bit of consistency in subtle communication signs, particularly between people he knows well. He is now very good at showing when he's upset or uncomfortable and his smiles are very clearly in response to things that make him happy (e.g. the sounds of familiar voices or sensory activities that give him enjoyment - e.g. in the leaves below on his Autumn holiday).

We are trying more adaptive switch toys and buttons with him to help him learn and develop more communication skills. His school, St Lucy's, have been trying lots of different techniques to help with communication. One such tool has been a button that helps Hugo "say" good morning to his class and teachers. When they go around the morning circle Hugo is encouraged to press his button that has been programmed with "good morning Mrs Gold" and is quite good at now using this. We see this as very early stages of him potentially learning some speech or at least some kind of verbal communication down the track maybe. 

Here's a video from a few months ago with Hugo saying "get well Tall Grandpa" who had a bad fall and broke his pelvis....gives you an idea of how this early communication is starting to take shape with him. 

He is also making strides with his physical development. His walking with the walking frame is getting increasingly better all the time and he gets lots of enjoyment from the praise he is given when he does this well! As you can see in the video below...!

He is also getting quite good at walking just on his own with people holding both his hands. Hopefully during 2017 that will continue to improve and perhaps we can drop to him walking with just a single hand. 

School has been lots of fun and he's enjoyed lots of parts of that. HIs teacher, Viv, and teacher's aide, Suzie, have both been absolutely fantastic with him and have tried to develop a whole range of ways to adapt the curriculum to his abilities. 

Earlier in the year he and I really enjoyed an excursion his class took to the Museum of Contemporary Art. We took a bus trip to get there (you can see below how excited I was to have to do that without a car seat for Hugo - that was certainly a challenge for the hour bus trip there and back but we both survived pretty well actually!). We enjoyed a great day together looking at the various exhibitions. There was a lovely sensory room with costumes and soft things to lie in and Hugo and his classmates really had a great time. 

So that's some of the good news of the year!

Unfortunately along with this has come quite a few bad patches. It's been a particularly bad year for Hugo's health and throughout winter he had multiple admissions to hospital including three very serious respiratory illnesses that landed him in intensive care for long periods of time. His seizures have now also returned periodically, particularly in response to high temperatures, which is a shame as he hadn't had a bad seizure for close to three years before that. In addition to this his sleep has become quite troubled again and he increasingly is waking throughout the night for reasons that are hard to work out.  Here he is feeling quite miserable on one of his ICU admissions. :(

So that's a quick snapshot of the year. I'll finish off on a more cheerful note with us all setting up the Xmas tree and decorations last weekend. Hugo came over to stay so Bertie and Bunny could have a well deserved a night out so we took the opportunity to set up the tree together. Hugo of course loved to play with the tinsel and enjoyed looking VERY closely at all the lights on the tree and he really enjoyed the Xmas carols playing in the background. 

Merry Christmas to you and your family from ours....more to come in 2017!

Clare, Hugo and family. xx


Progress at school

A quick update with a few photos of the big school boy! Hugo is absolutely loving school. Yesterday we had a lovely note from Viv, his teacher, which I'm sure she won't mind me sharing:

Isn't it just wonderful to see so many smiles these days?!

Just a 'couple' of other things:
He's waving his arms in songs he recognises, often looks up for his name, looks for his light and take itwhen found, loves the light box, does lots of mouth movements at feeding times, shows 'affection' when close... looks up at you when you talk/sing! Is reaching out and discovering his peers sitting alongside him in morning circle! Verbalisations... and more!

Fantastic, I think he is enjoying school!

A few weeks ago Viv also sent us this lovely collage of her and Hugo laughing at school. 

Viv sends collages of the kids every day - showing what they did and things they've enjoyed. It's such a great thing to receive, especially for kids that find it hard to communicate what happened in their day. If only all kids could have such a wonderful school experience!

Each Monday Hugsie has to bring in a photo for 'news' on a topic that Viv asks for. This week it is his 'sleeping friends'. Here's the photos: 

Until next time!

Clare and family x

First day of school!

A quick post to put up a few pictures of Hugos' first day as a kindergarten boy! Quite an amazing accomplishment and a day I really would have struggled to pictures 5 1/2 years ago. But it couldn't have been better. His new school - St Lucy's at Wahroonga - is absolutely terrific and he has the most incredible teacher and teacher's aides who are already doting on him (and his other class mates). In fact I reflected on the pictures I have been sent from the school this evening and thought that if only more children had the opporutnity to have an education like what it seems will be given at St Lucy's then the world would be a better place! Today I saw a collage of images of the teacher lying on the floor reading books with the children. How nurturing, fun and educational - all at the same time! 

Here's a few pictures of the big kindergarten boy - and yes, you are right if you have picked up that Bertie is dressed in the school uniform - not sure if this was an accident or not!! :) 

Until next time!

Clare X (Hugos' mum)

The last 6 months

There's one thing about having been too busy to update Hugo's website for the past 6 months and that is that when I have come back to update the blog and looked at my last entry I can't quite believe the progress Hugo has made in such a relatively short period of time. 

Here's a snapshot of what's been happening! 

Hugo turns 5!

A few photos from Hugo's 5th birthday party back in September

Some time with his brothers

Bertie and Bunny took their big annual holiday late in 2015 and Hugo came to stay with us for a few weeks. The other boys, Caleb and Archie, loved having him to stay and we just hung around home, went to the park and generally relaxed and had fun. Here's some photos from during that time. 

Morning ritual - iPad and chatting with Hugo in bed. 

Hugo not so thrilled to be having dinner together! 

But LOVING shower time :)

LOVING shower time

LOVING shower time

The end of preschool

Hugo's time as a preschool boy has now come to and end. The experience Hugo and the family have had at Waterford Preschool has been nothing short of incredible. Hugo has loved the interaction with the other boys and girls and the staff at the preschool we so kind, patient and loving to him and the extended family. Hugsie loved the music lessons, reading, painting, going on the trampoline and he had lots of room to be able to walk up and down in his walker. His communication skills have made some dramatic changes with him now turning to respond to sounds and to show he can tell if someone new is coming to say hello to him - generally smiling as they approach. 

If you would like to read the report of Hugo's time at Waterford you can do that here. It has examples of the things he did there and the progress he made. A terrific keepsake from his period as a little preschooler. 

Hugo and his nanny, Jodie, practising walking at Waterford Preschool. 

Hugo's time with his nanny Jodie

Hugo, Bunny and Bertie have had a big move this year. Moving from Bellevue Hill up to Wahroonga to be close to St Lucy's, where he will start school this year (more on that below). This has been a big adjustment of everyone and has also meant that his regular days with nanny Jodie have sadly come to an end. Jodie has been an incredible support and carer for Hugo and they have developed a very special bond. She will still be making trips up to Wahroonga to babysit once a month or so but the family definitely miss her positive energy and enthusiastic support for Hugo's accomplishments - not to mention the hard work she puts in to his physio. 

Here's a photo Jodie took one day on one of their regular walks and trips to the park. As you can see he's very happy in her company and loves the swings!

I love the swing 180815.jpg

Physical developments

Hugo's physical progress has been remarkable over the past 6 months. He's now walking well on his walking frame and spending longer periods standing and supporting his body weight. He now uses a rope to hang on and practise standing which makes him have to correct his balance and use his upper body strength. Here are some photos from a physio session about 3 months ago (November 2015) and his progress has improved even more since then. 

He's not always thrilled about going to physio as Debbie and her team (at Therapies for Kids) work him very hard. But by pushing him beyond what everyone (except Debbie!) thinks he can do, he's making some very promising progress towards independent standing, and perhaps independent walking down the track as well. 

St Lucy's - Kingergarten Boy

Tomorrow is Hugo's first day as a big kindergarten boy, so I will save the details of what school is like for future posts. St Lucy's is a special school in Wahroonga and we feel very lucky that Hugo has been accepted to go there as they have such a wealth of experience with kids like Hugsie and so far have been really kind and welcoming to us all. 

Here's a picture of Hugo at his orientation day at St Lucy's, with Bunny and Bertie.

Everyone is very excited (and also understandably apprehensive as all parents of kids heading off to school!) about this next chapter in Hugo's adventures. I personally can't quite believe that Hugo is already a school boy - this year I have a Year 2 boy and a kindergarten boy - how time flies!  It makes me very proud to see Hugo standing so grown up and tall as a 5 year old school boy on. It's quite simply amazing. 

Hugo with Bunny and Bertie on orientation day at St Lucy's school

Hugo with Bunny and Bertie on orientation day at St Lucy's school

Until next time!

Clare x (Hugo's mother). 

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!