Thursday, December 15, 2016

School is OUT!

Sam marched in the door this afternoon and said, ' Mum, next year when you go to school you can't find me in room 6, don't go there.... you will have to go to room 10 to find me because I will be in year 3!'.  It was so cute - he has just had the best time in his class - truly the teachers have cared for him, the children have embraced him, the school community have cared for him and school has been a safe and happy place... and occasionally he has learnt something!  We have a report, but it says nothing that we didn't already know - so proud of our boy for getting through a really tough year and still smiling.

Monday saw Sam at gastro clinic at Starship.  Over the past 6 weeks we have been playing around with Sams feeds, with great success.  We have had a 6 stage plan, titrating one lactose based milk up and phasing the non lactose/pre digested solution out.  Sams gut has coped so well that now we are on total Nutrini feeds - this is revolutionary for us, as the milk comes made up so we don't need to be measuring and mixing with powders, washing out bottles and caps.  So it is a whole lot easier to administer and to maintain.  In the new year we aim to start a new feeding regime, where we add in a higher calorie type of Nutrini, which will mean we can drop the amount of hours Sam will need to be hooked up - potentially getting him from the current 16 hours down to 10 - that would be A mazing!!

We aim to have lots of time at the beach over the summer. Sam is now asking to head to the beach - YES, never thought that would happen.  His world has opened up so much since he has been in water, so we will be encouraging his new found love of all things wet.  Truth be told, he likes the concept of water, but the reality of splashes on his face and sand and seaweed on his feet means he still has a long way to go to be a chilled out beach bunny - but with his two big sisters very much able to take that title, he will have two role models to follow.

I leave you with a variety of photos from the past week - a Christmas Party put on by the charity Kids Foundation, was a great day out.  Sam was very brave and went and met the Big Red Guy on his own, without a fuss to get his gift.  School has also had various fun days and of course swimming.

With 10 days until Christmas we have the usual traditions yet to completed - making of Gingerbread House is tomorrow, visiting various places/lights etc still to come.

I will endeavour to update the blog one final time for 2016, before Christmas.  I hope your lead up to Christmas has plenty of time to stop and breath, to enjoy the wonder of life and be thankful as you look back at the year that is fast drawing to an end.


No comments: