photos for the local newspaper

We had nominated one of our beautiful nurses from the Royal Children's for a Pride of Australia medal - last October (after we had spent the day together with Jodie doing an endocrine test on little one - for 4 hours of bloods and toe pricks).

In the last few weeks we had some photos of taken for our local newspaper and I couldn't be prouder of our boy and Jodie.

The photo looked great and I am praying and hoping that her nomination will be one of the top three in the State as then she will go through to Australia wide nominations.  She really deserves to be recognised for her work and also to be a representation of our amazing nurses at the Royal... fingers crossed.

Here is a link (hopefully) to the article: Pride of Australia nomination for our nurse Jodie

P.S. Photos courtesy of soon to be 6 year old son!

a very pretty distraction

images from Cote De Texax blog... thank you for making my week

Escaping from my ho-hum week of suburban wife/motherhood, I have been escaping in to the 'It's Complicated' house.  This would be my dream home.  I would even forgo a Cape Cod dream house or my Formosa Road dream house for THIS house!

Trying to live in the moment and be mindful of my time and days, although it has been hard this week.  School holidays start on Saturday and I am dreaming of the squally winter coastline of Northern New South Wales just a little too much.

First fete... just getting used to this whole school thing!

First fete prep ever.  I can't believe that my Mum and Dad this every year for what feels like forever! Plus the netball/swimming/triathlon support, help, baking and set up/pack up.  How do I ever even begin to repay my parents?

Very daunting and my only contribution is baking and preserve making (first time for both).  As long as it does not have my name on, surely I can not be held responsible for food poising/botulism?

It's been too long...

I am making a comeback... it has been too long between drinks.

We have been home since 6 January 2013 (only with one hospital admission for surgery within that time).  It is amazing, 'normal feeling' and lovely to finally have my three babies at home with us.  I now have three washing piles, three washing baskets and three beds to make.

Little one is coming along beautifully and has a funky vpap machine (variable positive airway pressure... similar to cpap/bipap) that I think I am contributing much of his growth too... not that I am going to admit it to our respiratory doctors just yet, as I was very adamant that I didn't want him to have it.  He is amazing and celebrated his second birthday last week - out of hospital this year!

So in love with our babes! And its so nice to be consistently at home in our own beds.

The day after Boxing Day

I am back and I am still tired. We have been busy enjoying life this past month with a trip to the beach, Christmas celebrations, a camping trip for my three big boys and having visits from one of my London sisters.

Now we are back in for a 10 day stay for IV treatment (I am learning that this is called a 'tune up' in no uncertain words.

One of my New Years resolution is to post more often. Some days go so fast I don't have time to think and I want to keep track of everything. I want my life to pause some days so I can keep my boys this age forever. They are so lovely and smell so beautiful after their evening baths that they are truly the most divine things ever.

They rock my world, make me laugh hysterically, make me want to pull my hair out and press my rewind button because I swear some days I say the same thing constantly... It annoys me, I can't imagine how they must feel!

Stay tuned, we are going to be in for a massive 2013 filled with good stable health, wealth that is coming our way, simplicity of being together and peace at being home with our family under the one roof!

 

Birthday love to my travelling sister

Wishing you all the love, happiness and joy on your old lady birthday.

Welcome to the dirty thirties! It's great fun... Just wait and see.

Your strength, patience and determination is beyond amazing and you have achieved everything you have because you are so incredibly committed to building your life by your own choices.

You are an inspiration.

Enjoy Garth, looking after the little itty and be kind to your liver.

XXxxx

 

I am grateful for Wednesdays

 

 

Our first tomato harvest (that's my definition of a harvest... Not my man's though... Country born and bred, his definition of harvest is very very different).

Not too bad for first timers. Now we just need to work out what to do next? Rip everything out and start again? Let the soil recover? Or keep everything the same until it browns and withers?

XXxxx

 

Inspiration when I needed it...

The right place at the right time and I found exactly what I needed to hear to lift my spirit.

I found A-M's blog our second day in to transplant and I have been stalking it ever since. I have never commented or mentioned it before but it is my most favourite blog ever and one of the inspirations in starting my own.

Her writing is honest, insightful and her thoughts are so human, ,motherly and normal. I want to send her one of our little one's thank you cards (But I don't want to really seem stalker-ish) because her blog got me through many restless nights and was a very welcome distraction first thing in the morning after normally very long nights of morphine and mucositis.

I used to check a million times over at about 5ish in the morning to see if there was a new post... I used to try and beat or be on the same timing as her posting... Odd but nothing else to do in a positive pressure air locked isolation transplant room!

Since I have revealed my most favourite blogger, I intend to link to her site more often. She is amazing and a joy to stalk her blog every day.

XXxxx

Slowing down

 

 

I found the Slow Your Home blog last night in my search for advice and motivation to make myself of aware of time and gratitude.

Feeling a bit better today in my mood, though I am going to try to do things a little differently each day... Change my normal patterns and see how things go.

XXxxx

The rain and a rut

 

The rain came over the weekend and so did my mood. I feel like I am stuck in a rut, doing the same thing over and over again and taking everyone along with my foulness. I need a change, or a challenge or something exciting to happen (not sure what sort of exciting but it always sounds so exotic and interesting).

I know I am dealing with enough to fill my days and my time, but I want to do something different and to stay awake at night with a purpose and an outlet. And maybe to feel like I have achieved something... I know I am achieving something in raising three boys to be the best people they can be, but maybe some sort of achievement that's about me?

I don't know, my head is over thinking things and I know it needs to stop.

I think maybe today I will take a step back, take my time to do things and realise that I have all the time in the world to be with my boys and with myself. I am normally Ms Grateful and I think I am forgetting that with this mood. I am going to be slow today and hope to be more mindful. Then I'm hoping this mood will pass (which I know it will).

XXxxx

Sundays

We are very bored this afternoon... But the great news is we are expecting company! My girlfriends are bringing wine and cheese. The weekends can be the hardest when I know the big boys are hanging out together, so the girls are a very welcome distraction.

I wont see the big ones until Tuesday, so I am trying not to think about time. It is such a cliche, I want to enjoy every second but then all on one thought, I just want the next 10 days over so we can go home again. At least we go home home, many of the family's stay at accommodation houses near the hospital and can be nearly 2 years without being home home for any extended period of time.

I miss my big boys, all three of them but am trying to be grateful that at least we have an end date of home time rather than never knowing when home day was which was what we dealt with for 10 months. There is really truly no place like home (your own bed, bathroom and backyard... Oh and having all of my little family under the one roof).

X

Fridays

What a beautiful way to start the day after a very very long night is the arrival of a beautiful boy for our beautiful friends.

Little one had an odd night but we are soon going back to our oncology ward so that will mean a sleep for him and a shower for me.

Sleeping until 8am

Not sure where this one came from. But Tiny Buddha is always a source of joy for me x

 

A slight diversion... Smiles

Sorry, no link to where I found this, but I thought it was beautiful. Borrowed from a friend of mine who is one of the most inspirational mothers that I have met in the last 16 months. She is amazing, open, witty and honest,

It's been a while since posting and I'm not sure why. Little one is doing well, still at home, still ok and still smiling like he has discovered the best kept secret ever. He smiles like there is no tomorrow and he smiles through vomit out of his nose (due to his non existent cleft palate) and he smiles when he sees me. His smile makes everything better and his smile makes me more amazed than ever that he can smile after everything he has been through.

I can spy him smiling at me when I'm in the laundry and I can spy him smiling at our Ruby dog when she walks past. I like to think he is enjoying his life outside the Hotel Royal Children's and I like to think that he is enjoying his life as part of our little family.

He makes me smile when I see him and he makes me smile when I think about him. And he makes me grateful for so many more things than I ever thought possible.

Treat or Manage?

Middle one's creative side

Sunshine time (although not too much with some of the meds we still have, oh and transplant in general)

We had a really good meeting with our respiratory doctor yesterday. She asked who we were going to use for general paeds in a few months once we move away from being under Dr brain the size of planet's care. I nearly cried. I don't want to see general paeds, I want Dr Brain for as long as we can. He knows little one better than any other doctor and I have always felt completely secure, safe and at peace with him. I am very (or maybe extremely) proud to call him our doctor and I want to stay with him forever, but I think that will not be the case as we move towards the management of little one's ongoing issues.

As transplant gets further away we are moving to the management of little one's issues such as respiratory, ENT, Gastro, physiotherapy, occupational therapy. Booking in regular bronchoscopes, grommets, planning for cleft repair and the change over for the peg. It feels weird but great at the same time. We are at the other end of the BMT process nearing our 12 months post date and I can not believe that it feels like yesterday but 10 years ago all in the one sentence.

One of our previous general paed doctors would say to me when they were trying to figure out what was wrong with little one... 'let's hope that it is treatable and then easily managed'... I understand that sentence more than ever know (maybe not the easily bit though, this young man is a lot of work, although so so so worth it, his happiness, strength and health is the best reward).

Hello Surf Ward... It's kind of nice to meet you

 

Back in... Once again hoping for only a few days.

It completely threw me yesterday, I was upset, crying and very very over thinking, worrying and wondering why little one can not have a week without any temp or infection. I go through the whole 'it's not fair for him, why does he have to go through this... It's not fair on the big boys' and then I move through to the I am so grateful for our beautiful doctors, I am so grateful for little one's temperament, I am so grateful for my mother and my sisters, I am so grateful for little one's patience... Overall I am feeling grateful today.

If you asked me that question yesterday afternoon when I was crying hysterically in to my mothers arms on our front lawn as she piled our big boys in for an overnight stay, then I would have answered with a whole lot of 'this is bullshit'. So I am happier with the grateful mood (oh and tired, but that seems to be the common theme at the moment and after 5 hours in DEM, anyone would feel tired).

I am grateful for little one's strength xx

Beautiful Wednesday...

Life will always be a balancing act.

 

The Ekka comes to the Royal

 

The Ekka has started in Brisbane and they visited the Royal on Tuesday. Little one received a big showbag of toys, but sadly I missed out on a Bertie Beetle bag or a Sticks and Pops bag... I really think they should be bribing the parents too hehe!

I went down to see the baby animals on the front lawn... little one slept through the entire visit.

Our roomy at the moment received an iPod touch from the Hannah's Chance Foundation. She was so excited and cried... I had only seen her cry with nausea so it was nice to see how happy she was and to see a smile on her cute little face. What a beautiful and very simple way to bring a distraction and smile to an 11 year olds face. All of these amazing foundations really do make a difference in our lives, our roomy has been blissfully distracted for most parts of the day, so thank you to Hannah's Chance for making our roomy so happy and that her days have been a little easier to deal with.

More distractions

My last hospital distraction is the French Navy designs and blog. Thank goodness for iPads.

I need a holiday

I need a holiday from washing... I know that I need a break when I am getting annoyed at washing. I find washing therapeutic, a time for me to hang clothes out in the sun and not think about anything but matching peg colours and listen to the birds (and planes!). It is my escape and strangely enough I do enjoy it... But for the last week I have had enough. Maybe because the sun has not been out much and a few days have felt very London like, reflecting my mood maybe. But a bit of sunshine, salt water and sand is in order!! Even if it is only in my head.