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