Ordinary Extraordinary

BIG ANNOUNCEMENT ‪@OrdinaryExtraordinary‬

Since December of last year we have started a health tech start-up! (This is my face when realising what we are doing!)

Since the boys were about 2 years old, we have been passionate about finding and giving the boys the best possible treatment.

But finding what these are has been so challenging! For River our medical team originally told us there were no treatments that could help him. But that has not been true, and many of the things we have found even have strong evidence in the literature that our team were just unaware of.

So we are building an App using advanced AI algorithms to be your own ‘Personal Medical Researcher’ and hopefully work towards better treatments and cures (for all chronic health conditions).

And we are looking for anyone with a health condition (or carer/parent) to share your experience with us. So if that is you and you have 7 minutes we would love to hear from you (and please circulate on your networks!).

Copy link to the survey: forms.gle/L5BqErUqjE9qgG6h9

Can’t wait to share more!

4 years ago (edited) | [YT] | 38

Ordinary Extraordinary

What did you think about our latest video AND our latest big adventure decision?? (And in case you missed it you can watch it here: https://youtu.be/ACbJDWNNIfA)

5 years ago | [YT] | 44

Ordinary Extraordinary

A big and hard day for us today.

River had to go under and have a procedure in hospital, nothing too serious and it actually went pretty well. But recovery was very very rough for him.

This was a real emotional throw back for Tim and I seeing River so upset and in so much discomfort. Remembering all the multiple surgeries and endless months he had in intensive care. Honestly, I don’t know how we endured it when just a few hours today was so hard. And that so many are in those moments of hell right now.

At the end of today Tim and I shed some tears and were reminded again of how grateful we are for our boys, that they have come through so much medical uncertainty, that most days are good days, and to breath in the now and every single good moment.

I think that is the “gift” of any terrible big pain and trauma, that you really know deep down what is truly is important.

And some days I forget and let the business of life, and mostly unimportant things take my focus. But not today xx

5 years ago | [YT] | 112

Ordinary Extraordinary

So here is a happy boy (about to get served ice cream and jelly for lunch) but in a not so happy place. This week started off normally, with Tim editing a vlog to go up on Tuesday. But River woke up very cranky on Tuesday and with very low sugars 😞 Not sure what is going on, but grateful it was picked up and he is in safe place at hospital - although not sure whey they are feeding him ice cream when he is having sugar issues!!

5 years ago | [YT] | 94

Ordinary Extraordinary

My eternal super hero! We ‪@OrdinaryExtraordinary‬ have been playing lots of treasure hunts on our street this week. Our wonderful therapy assistant continues to think of simple fun games where we practice our walking.

But (as usual) I am super grateful it is Friday and we can have a few days off from our therapy life, and just have family and rest times. Happy Friday friends!

5 years ago | [YT] | 109

Ordinary Extraordinary

What did you like about our last video and our new project? (And in case you missed it you can watch here: https://youtu.be/UXUWmaRQrmE)

5 years ago | [YT] | 13

Ordinary Extraordinary

This week we celebrate Tim (happy birthday babe!). The boys had a ball planning breakfast in bed, drawing pictures for presents, and performing a birthday magic show. Tim is the champion of dads and gives every ounce of himself (and then some) to all of us. Every. Single. Day (and sometimes even throws in a rap or two) xx

5 years ago | [YT] | 88

Ordinary Extraordinary

What was your favourite thing in our latest vlog, sharing life in isolation? (ps. if you missed it you can watch here: https://youtu.be/EDwy4PqWTrQ)

5 years ago | [YT] | 16

Ordinary Extraordinary

Day 35 in isolation.

My little helpers wanted to bake and bake in style with chef hats, and that is what Papa made them (I think? or large king hats..). And of course sing away a beautiful chorus!

This is the season for simple and domestic pleasures and little people are experts in this (leading me down this road). Sending love however today finds you #isolation #domesticlife #simplepleasures

5 years ago | [YT] | 84

Ordinary Extraordinary

Been very quiet on our end. Had more hospital times and now day 2 of our self-imposed isolation. And early days of settling into our new rental and new neighborhood.

Today has been a good day, but honestly, this whole week has not.

We have been so unsure how to play this virus situation, as we were about to start so many things!! But have realised that keeping our lung disease boy healthy is the priority!

Today we embraced the sun and the beautiful new suburb we are living in, tuning out the news, and creating a home that we will BE IN more than we could have realised. For Tim and I this is not our first isolation. When we left hospital with our boys we had very strict isolation for about 1 year. Crazy what you can get used to.

Finding moments in nature is how I got through the last stint, and will try to do for this stint (while we can- unlike so many friends around the world who can’t). Sending sunny and home vibes to all, and to finding good days amongst the hard #togetherathome #newhouse #family

5 years ago | [YT] | 96