14 October 2021
Hi All,
Just a quick update
Since the last time we updated, Jaxon was going well and seemed to be progressing ok with the 3rd bottle of CBD oil. He was starting to chatter a little bit more and wasn’t having seizures, so as we lowered his usual pharmaceutical medicines and upped his CBD oil there was a turn, Jaxon’s brain couldn’t cope without his usual medication lowered which sent his seizures spiraling out of control. This is a common side effect from lowering AED’s it’s all Jaxon’s brain knows.
Over 4 days Jaxon endured over 500 seizures which was devastating for Lauren, Ryder and myself to watch. We had to give him a higher dose of his usual medication to stop the cluster. With that come horrible side effects. It was a tough week!! Like the true warrior he is, he’s back trying to play and going to kinder again after a week off due to these seizures.
Lauren and I will consult with his neurologist to see what we can do next. We have purchased Jaxon a new car play mat to which he loves playing his cars on.
Milo is returning to his training at the end of October once restrictions have eased, see photo of Milo laying close to Jaxon after he had a seizure.
Thanks again everyone in the APM Group family for the support of Jaxon’s Journey.
From Lauren & Matt & Family
DISABILITY TRUST FUND
In regards to Jaxon's Journey Disability Trust with Centrelink Lauren received verbal notification that the Disability Trust for Jaxon had been approved. Notification is being sent through the post to both Jaxon’s Journey accountants and Lauren/Matt. Once this has been received Belinda will set up the bank account with NAB and we can move forward.
Also thank you to Belinda for collating and looking after the financial spreadsheet for the Trust.
JAXON’S JOURNEY WEBSITE
We are creating a website for Jaxon which we hope to have up and running in the coming weeks.
The website will be used for selling of auctions items, uploading of the regular bulletins and in the future, an avenue for people wishing to make donations.
Further details around the launch date to follow.
TRUSTEES MEETING
Next meeting Thursday 28 of October 2021
If anyone requires a copy of the meeting minutes please contact Belinda at HQ.
CURRENT FUNDRAISING
The following items are new products that will be available in the near future for fundraising to Jaxon’s Journey Trust:
KEEP UP THE GOOD WORK
IF ANYONE HAS ANY NEW FUNDRAISING IDEAS PLEASE CONTACT
B, TUBBY, DELILAH, ECTOMORPH OR FOSS
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