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  • Lauren

Jaxon's Journey Bulletin No. 13

Hi All,


Welcome to our first bulletin of 2023.

I hope everyone had a great Christmas and a Happy New Year.


We had an eventful end to 2022 with the birth of our son Levi who caught us all by surprise arriving 4 weeks early. He was born on 30th December 2022. Completing our family and bringing everyone so much joy and love.


Video of Jaxon and Levi meeting for the first time.







Earlier this year we took the boys away to Philip Island for a few nights. We stayed in a house that had the perfect backyard area for Jaxon. It was nice to get away and enjoy some quality family time.


Jaxon is repeating Kinder this year, we will decide this year on what specialist school he will attend in 2024. We are so grateful for Jaxon's Kinder who has always supported Jaxon and his needs, he has formed some beautiful relationships and loves going to Kinder.


We were able to get Jaxon's seizures under control with the increase of medication. Sadly, even on the highest dose of medications we have started to see nocturnal seizures again. This is the sad reality of Epilepsy we can never predict when the seizures will take over his body and with Jaxon's complex medical condition, we are finding it really hard to find seizure freedom which as parents is really heartbreaking.

Even though the seizures are relentless and take so much out of him, we are trying our hardest to keep going and to do lots of things that bring Jaxon happiness. This has only been possible with the use of Jaxon's disability fund. Creating everlasting memories. Seeing him laugh and happy as much as we can and enjoying the short periods we have without seizures.


Therapy 2023

We have missed a few appointments already due to the seizures but have attended a few physiotherapy appointment. We have noticed he has become weaker in his muscles which is due to seizure activity and the medication side effects.

BUT last week Jaxon surprised us all and smashed his session.... we saw some strong independent standing! Jaxon did a personal best and stood ALL ON HIS OWN WITH NO SUPPORT FOR 8 SECONDS!!!!!!



This was taken at the start of his physiotherapy session, cheeky as ever. Trying to make us all laugh so he doesn’t have to do the exercises.

It was soon after this photo that he stood all by himself for 8 seconds! We hope this year he can stand more on his own and build strength through his core and legs.












Jaxon has new AFO's (ankle-foot orthosis) which have more support. We have noticed much better walking in his walker and he has been able to walk further before fatiguing. He is so eager to get walking and we hope (we have everything crossed) that he takes some independent steps this year!!!

Suffering from seizures unfortunately is like taking 1 step forward and 10 steps back. It's been a slow progress due to the severity of his condition, but we will never give up and we have the best team of therapist working with him.




Thank you for reading our first update of 2023!


Lauren and Matt.






Update from Terry (Foss)



JAXONS JOURNEY EASTER FUNDRAISER BARBEQUE HELD AT ST. BERNARDS COLLEGE

A Jaxons Journey barbeque fundraiser was held at St. Bernards College last week. The successful fundraiser raised approximately $600 for the trust and the contractors onsite thoroughly enjoyed the event. All other prominent APM Group projects will also hold a pre Easter barbeque on April 6th 2023.




DISABILITY TRUST FUND

Financial Reconciliation report to be completed in March 2023 by Systema Group (APM Group accountants) and submitted to Centrelink for their review.


JAXONS JOURNEY WEBSITE

DONATIONS ARE GOING OK AT THE MOMENT- SLOW AND STEADY CAPTAIN KIRK SAID. PLEASE LET YOUR FRIENDS AND FAMILIES KNOW OF THE WEBSITE MAKE A DONATIONS TO A WORTHWHILE CAUSE.

PURCHASING OF MERCHANDISE

IS NOW AVAILABLE THROUGH JAXONS JOURNEY WEBSITE.

TRUSTEES MEETING

Next meeting due Thursday 27th April 2023

Venue TBC

Merchandise- To all APM Group people can we make a concerted effort to try and sell all current merchandise available on sites.

Vending machines are on all sites. Sales depend on the number of workers at any one time. Once again another form of fundraising which is creating regular ongoing income for the Trust.

APM Group Raffle

The trust can announce that at the Bolton Clarke site in Bundoora two items of memorabilia will be on permanent display and offered up for a raffle fundraiser and details via a flyer will be handed out to all other APM Group sites so they have the opportunity to participate in the raffle. Details to be finalised and forthcoming.

Next year the trust has 8 items of AFL/NRL memorabilia to be raffled or auctioned off as sees fit.

If anyone requires a copy of the meeting minutes please contact Belinda at HQ.

CURRENT FUNDRAISING

NEW INITIATIVES

“Cashies for Jaxon’s Journey” has started.

Recent Cashies for Jaxon’s Journey

If anyone knows of someone who needs some work done contact MG/Foss.

Looking forward to 2023 to continue to maintain all our support to both Lauren, Jaxon and Lantern.

KEEP UP THE GOOD WORK

IF ANYONE HAS ANY NEW FUNDRAISING IDEAS PLEASE CONTACT

B, LANTERN, DELILAH, ECTOMORPH OR FOSS




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