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  • The McInnes family

Jaxon's Journey Bulletin No. 2

Hello all


An update on Jaxon and the trust fund and how that is all tracking.


Thanks to the generosity of everyone at APM Group and through the donations for Jaxon’s journey we were able to purchase a SAMi-3 seizure camera.


This has given Matt and Lauren a little peace of mind during the night when Jaxon is asleep.


Jaxon has nocturnal seizures which can be life threatening. The camera alerts us when there is unusual movement, it automatically records the movements so we can check to make sure Jaxon is ok. The camera is smart enough not to alarm us for normal tossing and turning during sleep.


Having the ability to check the recordings each morning has been great, we can see how much he moves during the night and wakes.


This information will be great to share with his treating team at The Royal Children’s Hospital. We find his medication is affecting his sleep which makes it hard for him to function during the day.


Thank you again to everyone who has been involved, we are forever grateful.



From the Lauren & Matt Family



Photos from SAMi-3 seizure camera









DISABILITY TRUST FUND


In regards to Jaxon's disability trust with Centrelink we have been sent all the paperwork from Centrelink. We have an appointment next Wednesday with Jaxon's GP to fill out the lengthy paperwork regarding Jaxon's Epilepsy and disabilities. Then we need to submit these back to Centrelink for assessment, apparently, it's a very specialised team who approve and set up the trust so may take another 1-2 months.


Jaxon is back into his therapy after having a few weeks off due to being sick. We are currently doing physiotherapy once a week and OT. He will start Hydrotherapy in 2 weeks, we are hoping this will help build some strength in his core. We are patiently waiting for Jaxon to take his first steps which will be a life changing milestone for us all.


We hope to trial CBD oil by the end of the year through The Royal Children's hospital. In doing this we hope Jaxon can decrease some of his AEDs (anti-epileptic drugs). Currently he is on a high dose of two medications morning and night. These medications in my opinion are just as bad as the Epilepsy itself causing some horrible side effects.


Our latest appointment with the Neurology team regarding surgery is to hold tight, they want to do some more extensive genetic testing before deciding the next step.


Jaxon will be turning 4 in October and at the moment he is at the development age of a 1–2-year-old. Due to Jaxon's brain activity constantly "sparking" it's hard for him to catch up. This has been a heartbreaking journey to say the least for Matt and Lauren. We are both grateful for the love and support received by so many. This support is what gets us through every day.


Someone said to me the other day, "To know him is to love him" and that is so true. Jaxon gives us so much love and happiness. He has been through more than he should have in his short life but he continues to fight every day and is slowly making gains.


Recently both Lauren and Matt have purchased a night camera, two breathe easy anti suffocation pillows and Milo “the wonder dog” has undertaken 5 weeks of training.


Also thank you to Belinda for collating and looking after the financial spreadsheet for the Trust.



PAKENHAM RACE DAY FUNDRAISER


Unfortunately the COVID-19 lockdown caused the postponement of the fundraiser to be held at the Pakenham Race Club. This event now has been rescheduled for Tuesday 27 August 2021. All seats were taken up quickly so we’re hoping everyone who put their hands up last time will be available again.


The Trustees will be auctioning off a number of items on the race day so make sure everyone has their pockets full.


At this stage we are looking forward to a “special guest” appearance on Race Day.



CURRENT FUNDRAISING


APM Group project teams have currently sold $1020.00 (51 beanies) worth of beanies.

Well done we now have 50 beanies to sell!!


Soon the Pom Pom beanies will be available on all sites for $25 each soon.


The beanies are being sold at a fast rate which is a credit to all APM Group Project Teams.


Also the AFL have donated a framed Nathan Fyfe lithograph Brownlow Medal framed picture and an indigenous TW football. In the pipeline, we hope to acquire a signed jumper autographed by the current Bulldogs players and a signed Kangaroos jumper by Brett Harvey.


KEEP UP THE GOOD WORK


IF ANYONE HAS ANY NEW FUNDRAISING IDEAS PLEASE CONTACT


B, TUBBY, DELILAH OR FOSS

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