Wednesday, April 29, 2015

We have a weird clothes line!

It was a long weekend here last week and as I headed back to work someone asked me what I had gotten up to.... so I flicked through my phone for photos to help jog my memory.... so with the help of these I will do the blog tonight to illustrate just a 'normal' kind of weekend.

Photo One:
A Family get together and  an impromptu 'massage train' was started with a genuine ache and a helping Auntie... as you can see, it was impromptu and participant heights not considered.  But that didn't seem to bother Sam who joined on in and we weren't sure if Uncle Eddie got pick pocketted or a bottom massage!  This photo just shows Sam as he is - full of joy and not wanting to miss out on anything.

Photo Two:

Just a normal day at home catching up on household chores and the usual washing... although our washing is truly bizarre.  I think Sam's washing is probably the dullest of jobs that I have to do three times a week - washing out and sterilising bile bags (he uses 3 each night - 2 collect urine and 1 collects stomach juices), cleaning GJ connectors with a knitting needle (they don't come with the knitting needle but had to figure out how to get them clean) and various containers.  I took this photo as I was in the garden and looked up and it hit me how weird the washing line is compared to my neighbours.

FYI, Sams leg ultrasound exam has all come back fine.  His legs are fine, although yesterday they were green as he found a felt tip pen when I wasn't looking and in the flash of an eye he resembled 'The Hulk'.

I was talking to our community nurse and wondering if we shouldn't be giving Sam some milk via his GJ tube during the day.  He is not concentrating well at school, especially in the afternoon.  It dawned on me, that unlike those of us that eat, he has no extra nutrients or calories going in to his body from 7am when I hook him off until 6 at night when I hook him back up..... so this is something we need to look at so we can see how it will work in practice.

Friday is Sams first 'mufti-day' at school and the theme is 'Animals', so he is going to go as a shark, as he has a shark dressing gown that he loves.  So that was easy - none of this up til 2am creating some paper mache wonder like with the girls - boys seem a little more straight forward - I can do a dressing gown.  I will wow you with his cuteness next blog.

Friday is also the day that Francis comes home so we are looking forward to that very much.  Sam has been pretty good this 2 weeks, inspite of missing his Dad, but daily skype chats makes his absence not as hard as previously.  X

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