A day in Daystay at Starship Hospital

Hayden has been in hospital today for a renal function test.  I had a lot of time to fill while he was waiting for the different blood tests he had to have over the course of 5 hours.  That does not include the hour before it all started that was needed to get his port a cath accessed so we had a point to draw the blood from.

So this is how our time looked like today.

First step is the port a cath which needs to be put it.  I does not hurt as all the nerves have been quarterised.

Starship hospital from the inside and the playground in the foreground which filled in some of the time.  I got time to admire the paint job from the Atrium.

Of course no stay in hospital is complete without stickers and some paper.

Luckily there was a holiday programme free to attend.  So Hayden made a flying fish kite and did some colouring in .

There of course was the cutting and gluing but I forgot to take a photo of that and the long walks too and from one side of the hospital to other to kill some time.

It sure is not a test to be repeated as it makes for a very long day.

Mondays Menu 22 July

This week will be a week of trying some new meals for us.  I hope that some of these recipes will stick and will become handy during the new school term which starts next week.



Monday  Coconut Fish Chicken on rice.

Tuesday  Grilled Tikka Masala Lamb cutlets with raita

Wednesday  spaghetti and meatballs

Thursday  chicken noodle soup

Friday  lamb cutlets with salad and potatoes

Saturday  homemade beef burgers with finger grilled vegetables and hummus on the side

Sunday  leftovers

 

(An image of winter I too just last week)

I am linking this post to I'm an Organising Junkie

Project 365 May 2013

 I am still chugging away with this project so here is Mays installment.  I had to sit down one day and play catch up but it was worth it as now I just need to do last weeks page.  All is good in this department I think.  I love having my pages with bright colours.  So Orange is the flavour for this month.

 

 

 

 

(Credits; Life in a Box templates, weekly wordart, hodge podge 5 Life 365 and SS 8 from Weeds and Wildflowers)

Off site backing up

After a long break from blogging I am back with fresh energy.  I needed to take some time away because life got so busy that something just had to go or my sanity would.  So sadly my blog did. 

Anyway here I am back again with my thoughts about backing up my precious bits and pieces.  I run 1 EHD but now, with time to think clearly, I know it is time to proactively do something more.  I have, since January, been considering on line storage options.  Very nervously I must say but the thoughts have been floating around in my head and the occasional an on line search.  I was nervous because I was not sure how reliable these companies would be and even if they would exist when I really needed them.

So then the I lost some photos due to a small EHD failure and now I know I need to do something quickly.  Luckily I still have those photos backed up on CD....yes I know they were my original back ups which I did when I got my first digital camera over 9 years ago.  I used a Nero programme and I have yet to work out how to unpack then but they are still there.

So what I have decided is

1. Firstly I should back up everything in onto an EHD.  The one I have has a whole lot of digital scrapbooking stuff but my photos and things sit on my computer.  (I say this very embarrassingly).  So tomorrow I am off to get a new EHD to back up the photos and other documents that I need stored.
2. On line storage.  I have narrowed the list of possibles down to 3 companies.  Mozy, Backblaze and CrashPlan.  The things that I have been considering as important for my families storage needs are; scheduled backup updates,  access to the items stored, and ease of use.
3. I have some CDs still but choose not to continue down this line as they CD do fail. 

 (source is here ...an article about using Gmail for storage)

Wordless Wednesday 29 May

There is nothing like learning a new skill.  No bumps or bruises were evident at the end so it must have been good fun.

 

I am linking this post to My Little Drummer Boys.

When enough is enough.

Most people do not realise how difficult our lives became when my son became disabled.  Back in February 2006 when Hayden became disabled one of the many things he was left with upon recovery were significant behavioural issues.  We lived with these behaviours initially hoping that they would recover and they would moderate over time.  Unfortunately this did not happen and in fact the behaviours have become harder to deal with as he has got older and stronger.

Now for our own sanity Hayden is medicated for his behaviours but the challenge we have been trying to overcome has always been that he does not swallow medication.  Especially tablets.  Everything has to go through his peg.

Last week I was told that Hayden's behaviour is at the extreme end of things and that the consultant we see has never seen behaviour like it.  He has concluded that Hayden needs to be referred on.  Also that Haydens behaviour is like one of a kind certainly in his experience and finally that Hayden should have it noted that his behaviour is his most significant disability, even more significant than the rigors of cystinosis.

Phew..... we live with this behaviour everyday and most significantly the unmedicated times of before school and after school.  It is exhausting and stressful.  Last week when we were at the appointment I was unwell so was at a low point.  So it sure felt good to hear that his behaviour has been put in perspective and it is not just me the parent and professionally the teacher over exaggerating things.

Fingers crossed that something more can be done for use before we can no longer cope with everything he throws at us.

So while I have written a lot of doom and gloom there are a few moments of spontaneous fun....alright this is when he is medicated.....

 

(credits....kit is Berry Delight by Caroline B at Nuts4Digi)

Monday Menu 27 May

With a wintery blast in our end of the world today I have a weeks menu which reflects that.

Monday  steak marinaded with baked potato and salad

Tuesday  crockpot for today.

Wednesday  meatballs on pasta with salad

Thursday  warm chicken wonton salad

Friday Middle Eastern pizza with salad

Saturday blue cheese chicken burgers

Sunday  leftovers.

I am linking this to I'm an Organising Junkie.

Project 365 April

We very belatedly here are my pages.  I am actually very excited about the way that they are turning out.  I love bright colours and these pages do not net me down.  I know it is a long way to go but I can't wait to see what they look like in the book I will get made at the end of the year.

 

The products I used are Life 365 in a box and Life 365 Hodge Podge 4 from Weeds and Wildflowers, Over the Rainbow by Lindsay Jane  Ray of Sunshine by Lindsay Jane

Fridays Fabulous Five #39

Here is again my list of finds for the week.

• take a read with a box of tissues.
• What about some homemade laundry powder.
• What about something for the keen blogger.  A printable planner.
• Just maybe I will find the energy to make this bar to put in the lunch boxes.
• 10 printable games to play in the car.  Especially good if you and your children spend plenty of time in the car.

What do your favourite links look like this week.

Wordless Wednesday 22 May

It has been a few weeks since I have time to post for Wordless Wednesday but here we go.  Today you can see my disabled son scared of electrical storms at night. We have been having a lot of them lately. Thank fully he is not unhooking himself from his pump and overnight feed to walk down the hallway and tell us that he is scared.

 I am linking this up to Trish at My Little Drummer Boys.