Hi All,
We haven’t had a very good run with Jaxon's seizure control.
For the last month Jaxon has sadly been suffering nocturnal seizures, this means once he is asleep the neurons start to fire up causing Jaxon to wake and suffer a seizure. We were hopeful we had the right medication on board and persisted with that. Unfortunately, the seizure activity just got worse.
Over the weekend we saw Jaxon have over 200 seizures day and night. Not even his emergency medication was able to stop them.
Saturday 22nd October during the middle of the night Jaxon was taken via ambulance to The Royal Children’s hospital. He continued having a seizure every 10-20 minutes. By this stage his little body was totally exhausted.
An IV drip was placed in his arm so they could easily administer some strong fast acting medication in the hope to stop the cluster of seizures.
Thankfully on Sunday night we saw the seizures ease after a strong dose of a sedative was given. With the help of some oxygen Jaxon was able to finally sleep.
We were discharged Monday afternoon. With a new plan in place to increase one of his usual medications in the hope that it would help settle things.
Tuesday night the seizures started again every 20 minutes, 8 in total. Thankfully his emergency medication worked this time and helped him have a few hours rest. After consulting with his doctors, they suggested we also increase Jaxon's other medication. He is now maxed out on both his antiepileptic medication. We hope this will ease his seizures.
It will take a while for Jaxon to come back to his usual self, as his body tries to recover.
Hopefully we will see his Neurologist in the next few weeks and get some answers on why this keeps happening.
We hope to stay out of hospital so we can celebrate his 5th Birthday on 29th October.
Jaxon showed so much strength and resilience through yet another setback, our warrior!
Jaxon’s therapy has been slow as we have been canceling a lot of his appointments due to the seizures.
Hopefully in the next bulletin I have more to share, we have a few exciting presents for his birthday that we can’t wait to share.
Melbourne Marathon Sunday 2nd October 2022
This was a special day for us, seeing all those out there walking and running in support of Jaxon. A day we won’t forget.
Thank you all who participated and donated. Amazing effort!
Seeing Jaxon go through the finish line was a special moment.
As always thank you for everyone's ongoing support, we have been able to use the fund to help us stay in accommodation close to the hospital and to pay for all his medication. It is one less thing to worry about and we are so grateful.
Wishing everyone a safe and relaxing long weekend.
Lauren and Matt
Update from Terry (Foss)
Melbourne Marathon
A great day had by all of those APM Group stalwarts and their participating families. A good amount of money was raised and we saw young Jacko walk over the finish line with his walker in fine style.
Highlights of the day-
Luch showed great stamina to outgun his son in the walk.
All the kids enjoying their time with all the activities going on around us.
Paul & Tracey walking hand in hand.
Jerome couldn’t find a carpark so he went back home with his tail between his legs.
Onions or Bibs as he is currently being nicknamed due to his forgetfulness- When the boys ran what did they need???
When the walkers finished and we sat down for a beverage the Axe drank all sorts of strange beers and ended up drying the bar out of all alcohol. Good effort!!
We will make this an Annual Event moving forward
DISABILITY TRUST FUND
Nothing to report in this space since we have been given the all clear from Centrelink.
Financial Reconciliation report to be completed in March 2023 and submitted to Centrelink for their review.
JAXONS JOURNEY WEBSITE
PURCHASING OF MERCHANDISE
IS NOW AVAILABLE THROUGH JAXONS JOURNEY WEBSITE.
\TRUSTEES MEETING
Main actions from the recent Trustees meeting held at St. Bernards 27th of October 2022-
Merchandise- To all APM Group people can we make a concerted effort to try and sell all current merchandise available on sites.
Fundraising
Upcoming Melbourne Cup Sweeps will be held for the big event next week.
All monies raised will go to JJ so get in early.
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.
APM Group Family Day to be held on the 4th December 2022 at Luna park a raffle and auction will be carried out throughout the day for Jaxons Journey.
Next year the trust has 8 items of AFL/NRL memorabilia to be raffled or auctioned off as sees fit.
Next meeting Thursday 26 of February 2023.
If anyone requires a copy of the meeting minutes please contact Belinda at HQ.
CURRENT FUNDRAISING
PAKENHAM RACE DAY FUNDRAISER
Thanks to the generous support from APM Group Directors the Pakenham Race day fundraiser will be held again. Hopefully it will be bigger and better than last time.
NEW INITIATIVES
“Cashies for Jaxon’s Journey” has started.
If anyone knows of someone who needs some work done contact MG.
Looking forward to 2023 to continue to maintain all our support to both Lauren 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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