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Help Joey, help Sarah J

$53,414 of $55,000 goal

Raised by 479 people in 8 months
Created November 19, 2018
Joey got injured whilst having a horse ride. Without going into the nitty gritty, anyone who knows his Mum will understand why I am starting this page.
Step up and lend Sarah a hand.

The response has been so outstanding, THANK YOU to everybody for helping out at this time of need.
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We have survived our first week in the transition room, have had some visits from some special people from one end of the country to the other, and a couple of Origin players as well. Joey has done amazingly well this week, for long distance needing his wheelchair, shorter distances with his walker and around the room walking independently (as long he's got something to grab when the wobbly boot comes out). He has limited range in his right calf which may need Botox down the line. He's going really well at school, now writing letters of the alphabet, and remembering more and more. He's got a rash all over his torso that we are finally treating with steroid cream, took his PEG out yesterday and he now has to cart around a negative pressure pump for the next week or so to help close the hole into his stomach. No surgery required at this stage. For those that are interested the Amazing Sim has started a started a Facebook page called 'YOU GOT THIS JOEY' copying and pasting these updates, and I do the same with the Gofundme page if it’s an easier option for anyone that wants to pass on updates. Thanks again for your continued Love, Prayers and Support ❤️
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Big day today.... we moved out of Joey’s hospital bed and Ronald McDonald House and into a ‘Transition Unit’. It’s still on the Rehab Ward, is fully self contained and we all stay together. Michael and I have to provide all cares, administer meds, cook, and provide round the clock supervision ferrying him to school and therapies etc. Basically it’s meant to ease us back into home life. We are in the Transition Unit for 2 weeks then move everything back to RMH for a time yet to be determined. We have been told 2 weeks but I have said there is no way in the world that I am jeopardising all the hard work that’s been done over the last 6 1/2 months and taking him home to an unsafe environment. We are waiting in NDIS approval to have home mods done (bathroom/toilet mods, handrails, ramps etc) and we WILL NOT be bringing him home until these are all completed....so stay tuned for the next exciting episode!!! Joey is progressing beautifully taking more steps on his walker and conversing more and more. We will be forever grateful to the hands on nursing support we have received at QCH Rehab Ward, they are amazing souls and I have no doubt Joey is where he is today because of them. ❤️
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Can’t believe it’s been another fortnight! We have had another cracker, with Joey taking a few more steps and standing with support....He has been trialling new wheelchairs and ‘rollators’ (because walkers are for old people!!!!) in preparation for our NDIS submission to see how much they will provide for Joey going home. We’ve had Occupational Therapists and builders out to home to plan home modifications (bathroom, toilet, ramps and handrails) and hopefully we’ll have a report submitted in the next week or so to find out what the NDIS is prepared to cover. Thanks to so many amazing family, friends and complete strangers we will have the ability to cover the shortfall with fundraising money. Speaking of Fundraising if anyone is in the Mareeba-Chillagoe area this weekend please have your Pom-Poms out to cheer on the ‘Costa Coyotes’ who are competing in the Great Wheelbarrow Race 140kms and be sure to support their sponsors who have donated thousands of dollars to Joey’s cause. A massive Thank You to the Costa’s crew, Carolyn Tomerini, Ben & Shannon Turner and everyone else that has has contributed to pulling this together. We’re off to Hydrotherapy this morning and then Speech and OT in the arvo. He has school every morning for a couple of hours each day and is loving the interaction with the other kids, is starting to write some letters of the alphabet and even a managed to write his name on a ‘Mother’s Day’ Card last week that means more to me than all the presents in the world.
Our days may be numbered on the QCH Rehab Ward, which I know is a great thing as Joey has come so far he doesn’t need the care and attention of Medical staff (or more importantly there are others that need it more). We will soon have to move into a ‘Transition Room’ which is self-contained and Michael and I will provide full care for a maximum of two weeks as an inpatient and we’ll then all move back into at Ronald McDonald House Bris for a further six weeks to complete the Outpatients Rehab program...and then with any luck home!!!! As was our move from the cocoon of Townsville PICU to the Townsville Paeds Ward it is with great trepidation that we move from Room 3 on the Rehab ward at QCH but the lure of home with the hopes, dreams and prayers of so many coming to fruition makes the daunting prospect a little less scary ❤️
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I’m starting to sound like a broken record....we’ve had another amazing week. Joey is now off all major meds. They did another x-ray of his left elbow as it has been giving him some discomfort now that he is starting to dress himself and gets himself into all sorts of twists and knots. He was initially diagnosed and treated in Townsville for Heterotopic Ossification (HO) Dr Google explains...is the abnormal growth of bone in the non-skeletal tissues including muscle, tendons, or other soft tissue. When HO develops, new bone grows at 3 times the normal rate resulting in jagged, painful joints. When we got to Bris we were advised that he did not have HO. The x-ray on Wed revealed that he does have HO so he will go back onto an anti-inflammatory and possibly need surgery down the line. Other than that he is going gangbusters, going to the toilet now (fully supported), standing and taking a few steps on his walker (refused to use the one with the seat because it’s for ‘old people’.) Physios have been great implementing fun play as a distraction to the task at hand... you will see attached photos of the only way we could get him to stand and use walker was with a NERF gun. And he stood for a good 30 mins at table making a volcano. Short term memory is not good but more of his long term memory is returning and therefore the Joey of old. He’s very anxious and hates new things but hopefully that will abate in time. ❤️
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$53,414 of $55,000 goal

Raised by 479 people in 8 months
Created November 19, 2018
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