Sophia's story | Community organisation

Sophia's story

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23.01.2022 cya 2019! HELLO 2020! We can’t say 2019 was a bad year! It was probably one of the best years Sophia has had with no complications from surgeries and even finishing her first ever year at school, With the best teacher and TA’s anyone could ask for! So many awesome thing’s happened including getting 2 new little cousin’s for her to love and cherish, going on our first caravanning experience, and finding out she is going to be a big sister AGAIN along with reaching so many new ...milestones! 2020 brings so many things to celebrate! Sophia is turning 6 in just a few short days! And will be starting Prep in February! Not sure how this Mumma is going to cope saying goodbye to her baby 5 days a week! But Sophia is so excited for it and to be reunited with her New friends she made in 2019. Her sister Evie will also be starting kinder at the same school which is also super exciting! And then in March we get to Welcome Sophia, Evie and Archie’s new little brother into the world! Along with all the excitement, this year we still have surgeries coming our way! Sophia will be having her left thumb lengthened and most likely another open Heart surgery! But as usual we will roll with the punches and celebrate every win that our beautiful girl has! Look out 2020! We are so ready for you! See more

19.01.2022 SOOOOO PROUD of Sophia and how far she has come since starting school this year! Today was a huge achievement! And we couldn’t be any prouder! Our smiles are still as big as hers!

16.01.2022 Sophia had her monitoring done and we left the next night on the boat with no answers what so ever as to what was causing the spikes in pressure! But we were so happy to be home! We have been enjoying getting back into routine and school and we even went to the Brighton show for a bit if fun! Just when we are getting back to our normal We get an Email today and her next surgery for her implant(new forehead) has been confirmed and surgery is happening in 2 weeks! #herewegoagain

16.01.2022 2020-2021 Entertainment book supporting Sophia’s Story

16.01.2022 The cutest cheerleader you have ever seen! #cheer #spirit #apertsyndrome #apertawareness... #apertawarenessmonth #sophiasstory See more

13.01.2022 Bruised and Battered but kicking goals! Surgery went well! She got to the ward around 8.30 last night and already up and about wanting to go shopping

12.01.2022 Sophia has just gone into surgery

11.01.2022 www.facebook.com/groups/286778399101420/ Welcome to Sophia's Story Online Fundraising Lorraine Lea Event. My Name is Kristi, I'm an Independent Stylepreneur for Lorraine Lea. I will be available to help you throughout Sophia's Story Fundraising Event. Sophia's Story will receive 10% of sales and $20 for every party booked from her event in host credits. Sophia's Story will be using the host credits to purchase items from our range to use as prizes at Sophia's next fundraising... event. I will also be donating 25% of my income from the event Throughout the event I will be posting some of our fabulous range. You are welcome to place your order and book your own Online Party at any time between now and the end of the event. Click on the event link below to RSVP and to start shopping: http://lorrainelea.com/events/FyYYnA If you have any problems or issues please dont hesitate to contact me Shipping is $12.50 no matter how big or small your order may be and it will be delivered to your door Payment Options- BPay Credit Card ZipPay Single Use Card See more

10.01.2022 WHO LOVES BINGO? Come along to Sophia’s Story Christmas Themed Bingo Night! Each game will be played for a prize so any one can play including the kiddies We have so many amazing vouchers donated! And an amazing raffle which will be drawn on the night! You can now purchase raffle tickets or early bird tickets just follow the link below! 100% of the profits go to Sophia’s Story to help with her upcoming surgeries including Thumb and Open Heart happening in 2020. By the time of the bingo night Sophia will have just ungone another skull surgery but she will definitely try to make an appearance to thank everyone for their ongoing support, and helping us through her crazy journey!

06.01.2022 Please follow the link and vote for Sophia’s Story To vote you need to write in your contact details and then write Sophia’s Story for the organisation. https://burnie.seafmtas.com.au//91161-harvey-norman-burnie

04.01.2022 It’s been a long time since updating Sophia’s page and soooo many things have happened since the beginning of the year! We have been back and forth to Melbourne and Sophia got a new thumb! they took a bone graft from her hand and made her left thumb longer and straighter. Thankfully we didn’t have any trouble like when she had her right thumb done She also started Prep and started cheerleading! it has been amazing watching her step out into this crazy world and prove she can do anything... even with a splint on her hand. She also became a big sister AGAIN! Meet baby Leo! With everything going on around us right now it’s so nice to have a distraction and spending time together at home as we isolate from the world

01.01.2022 We are home and settling back in nicely Sophia’s story Christas bingo night is this Saturday! Who’s coming It will be a bit of fun and lots of laughs! We will be playing for prizes so anyone and everyone one can play https://facebook.com/events/957159161303644/?ti=icl

01.01.2022 What a roller coaster of emotions we have been on these last few days! A few weeks ago I rang our plastics team to voice my concerns that Sophia was vomiting over night randomly and having a lot of headaches, they organised a CT scan to be done just days later! 2 hours after the CT was done we got a call saying that they were organising ICP (intercranial pressure) monitoring to be done so they could measure her pressure of a night! This involves having a hole drilled into th...e bone of her head and a monitor inserted a few cm into the brain, this then stays in for a few days! We then got a call last Tuesday saying the surgery would be done Friday in Melbourne! Wednesday they then cancelled due to an emergency, then Thursday they called and asked us to be there again Friday for surgery so we had a lot of last minute planning to do! Friday came and she had surgery! Over night she had spikes in pressure! Just like we thought! But the neuro team were thinking it is to do with her breathing and that maybe she stops breathing of a night causing the pressure we then went the whole weekend waiting for answers which no one had any until today! so we are still here and tonight we are doing more monitoring to measure her co2 and hopefully get some proper information tomorrow! If they can’t work out what it is causing the pressure they will have to put a shunt in See more

01.01.2022 Heart kids ambassador 2019