Little School

It’s been an exciting couple of weeks for Rose.  She was accepted into a local community pre-school.  She’s really loving it and doing so well.  A friend said they thought such a milestone was “post worthy” and I was thinking about writing something but tonight, her teacher wrote something on her Storypark account that says it all really..

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The Luckiest

Rose turns 3 today.


Thank you for your interest in Rose’s journey.  She’s a wonder and it is my privilege to “show off” her past year in this slideshow today.

Happy Birthday, Rosie!

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Gastrostomy Closure

The day has arrived!! Rose is currently waiting at the Short Stay unit at SCH to go under general anaesthetic to have her gastrostomy surgically closed. Continue reading

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Roll up, roll up,

Come one, come all etc etc

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If you have audio you’ll be able to hear that walking is QUITE a milestone in my mind!
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A year out of hospital!!

A fitting day to celebrate with a Rose update. I have lots of photographs I want to share so please forgive the slideshow. James wrote a gorgeous book in class about Rose and dedicated it to her. I’m adding it here as I expect one day she will read this blog. Continue reading

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Homemade Blended Formula

We have been busier than I ever thought possible for the last few months, establishing a Blended Diet (BD) for Rose! Continue reading

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Happy Birthday, Rose!

Today is Rose’s first birthday.  It’s strange to contemplate celebrating a birthday before she’s a year old.  At the moment 18 May, her due date, feels a lot more like a milestone for her but as the years go by this day will become the same sort of day it is for full term babies so best to start as we mean to continue.  I had planned to have a big celebration and invite everyone who helped get us to this point but after negotiating James and Daniel out of birthday parties this year as I just wasn’t able to even begin to coordinate “events” I realised it probably wasn’t going to be achievable.  I’m still hopeful our home life is going to become more manageable with the help of a generous and talented lady, Ali who’s helping me achieve some of the things I need to to get our family life back.

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Good riddance 2013

Never again will I laugh at people who are superstitious about the number 13!! Though of course I’m sure (and I hope) a lot of you had awesome years.

HAPPY NEW YEAR and thank you so so so much for all your love and support! Continue reading

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Baby Glasses

After much online research and even some old fashioned calling around and speaking to ACTUAL people I settled on baby glasses from Tomato Glasses, I found an excellent blog post from a mother who seemed to have tried them all and settled on the design we’ve gone with so hopefully they’ll work well for Rose.

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