Tuesday, September 22, 2015

Long overdue update...

Botany and Ormiston Times : Botany and Ormiston Times Thursday September 17 2015, Page 12

So I've been a bit quiet for too long - so much to say, so little time to put fingers to keyboard.... a little of the time has been filled with my training runs.  With only 5 + weeks to go, training is in full swing - click on above!

On Sunday we took the caravan to a beautiful beach nearby for the day - Sam loathes sand and all things to do with the beach (noise of the waves, sandy feeling, wet feeling, shells etc et al....) so we felt this was a good compromise - he sat in the caravan and played with his cars and watched cars drive by whilst we enjoyed the scenery and had somewhere to cook and eat.  The other very useful thing was I went for my 12 k run and had somewhere to shower and then relaxed with the family!  So our trial day out in the caravan was a success and also a useful exercise to see what else we need and what we need to tie down when moving it.  We aim to get brave and head away for a night soon!

Sam has been fabulous - he has had another uti, but it cleared up for the first time ever on a medicine that we always use that normally doesn't work!  He has had a school disco (hated the noise and the dark... on no wait, that was his Dad......), had a pirate day at school (loved that!) and was Star of the Day yesterday as he had really good phonics!  Today he came home proudly spelling 'ook' words - Look, Book, Cook, Hook and Took!  So he is a sponge and loving learning.

We have had a psychologist involved to help us with feeding and oral skills and that has been fabulous - really sensible doable ideas that help us understand how a baby learns to eat.  The first thing a baby does when learning to eat solids is promptly spit it out... and that is a normal piece of development that gives the child confidence they can protect their airway by expelling food.  This was a lightbulb moment for us as Sam has no clue about how to even spit anything out.  So we now have a weekly family event on a Sunday afternoon - if you drop in then you are most welcome to join in. It involves us sitting around as a family with a variety of food and an ice-cream container.  We all take turns taking the food and putting in in our mouths and then spitting it into the container - it is seriously a lot of fun and neat to see Sam starting to play with food.  We need to get him confident that whatever he puts in his mouth he is in control of and can get rid of.

He now is on 3 nights of TPN and all 7 nights he is on 2 other feeding pumps into his GJ.

On normal child development he announced to Jasmine today, ' I DON'T want you to be my sister ANY more!' and 'I DIE you'..... so normal family stuff going on.  He is also totally infatuated with getting his lunch box ready for school. It takes at least an hour each afternoon of him going back and forth to the fridge.  He grabs a variety of interesting objects and has gone to school with curry paste, a bag of radishes, a box of jelly crystals and a satchet of yoghurt powder.  He always take a mandarin and an apple and is very keen on a chunk of cucumber.... is so funny/endearing watching him potter about with great intensity, packing and repacking his goodies (which always come home slightly jaded and mashed up together).  But we don't care - just lovely to see him learning.

I leave you with some photos of Sam to update you and an apology for being so slack at this blog - I do like writing but it takes time to write well (this is a rushed one!), but I am now working 5 days a week and any free time is taken up either training or normal life stuff, or like today a trip into Starship to do Sams monthly blood tests.

AND before I forget, a very special THANK YOU to the staff at Ernest & Young Accountants in the Auckland office, who did a 12 hour tredmill challenge a couple of weeks ago - the tredmills were on non stop and 60 staff each did their 20 minutes and collectively raised $5,800 for Starship!  It was such a fabulous effort and thanks must go to Aunty Victoria who worked with the team at EY to get it sorted.  A special thanks also to CHRIS BARRETT, the gym manager for his hard work.

In 2 weeks time Sam has a respiratory consult and then he is booked in for a GA to do a broncoscopy, to try and see what the state of his lungs is.  He continues to do twice daily nebulisers, with another 4 weeks to go.

Ok, gotta fly X

Team Davy

1 comment:

The Doughertys said...

Far out you have grown up Sammy. Love the photos and love that you got away in the carryvan. What a flippin awesome family you are and I can help thinking how incredibly blessed we are to have you in our lives. Hope the holidays are fab and we look forward to one day holidaying with you. Much love xxxxxx