Jimboomba Jorge | Other
Jimboomba Jorge
Phone: +61 411 264 872
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25.01.2022 Guess who's just started on Medicinal Marijuana Oil?!!!!! FINGERS AND TOES CROSSED
24.01.2022 Last Nights fundraiser was undeniably a MASSIVE success! Our Family would like to once again thank everyone involved in making it happen. The businesses and individuals who generously donated merchandise, vouchers and your time, thank you!! The volunteers who gave up their time and energy to help set up the hall, serve drinks, sell raffle tickets, wrap gifts and clean up, thank you!! Jorges supporters on this page who liked and shared our posts and helped promote our cause, thank you!! And lastly, those of you that came along and took part in the night, you all deserve a very big thank you!!! Because of each and every one of you, we are in the wonderful position be being able to order Jorges Change Table this week #wedidit!!
22.01.2022 Update on Jorge: Jorges Dad and I have made the very difficult decision to withdraw Jorge from the medicinal Marijuana Trail he has been participating in for over two months. Unfortunately, he did not respond to it favorably, in fact his seizures actually worsened. It's a shame....but it's life. We are currently in the process of sourcing a better helmet for Jorge and figuring out ways in which to protect him from the seizures he endures. Jorge continues to injure himself a...nd our focus has shifted to the ways in which we can protect him from injury. 2 weeks ago Jorge had a seizure at the kitchen counter and smashed his face on the bench. He suffered an EPIC shiner, split lip and a fractured eye socket as a result ! Times are tough for our wee man. But in true Jorgie form, he doesn't let things get him down!!! I know I sound like a broken record but this boy is an absolute trooper! I don't know any one as brave or as strong as him. I still see a Slightly green, slightly swollen, painful looking red eye when I look at him. In his mind.....Im sure it's old news! There are no more 'miracle cures' for our son. No more ' stones unturned'. However....We soldier on....with LOVE!!!!
19.01.2022 Jorges year has got off to a flying start. He’s in grade 9 now and he’s getting TALL!! He finally got an NDIS package and with that in mind we are hoping to improve his quality of life in a big way!! Jorge is still having a LOT of seizures but that shouldn’t mean he can’t participate in activities that will bring him pleasure. We finally have funding for staff to take him out and we are now looking for activities for him to participate in. Top of our list is riding for the disabled, Art, music therapy and swimming lessons (once the weather warms up). Suggestions are welcome too, by the way Currently we are using his funding for before/after school care and vacation care. I’d ultimately like to see Jorge experience a lot more of what life has to offer Photo taken on a recent ‘Funday’ with one of Jorges wonderful carers Sarah!
19.01.2022 An early ‘feel Good Friday’ post! Jorge drinks out of a toddler sippy cup and has done for a very long time. As much as we’d like him to drink from a regular cup, it’s just not a realistic goal for him at this point. The cups retail for around $8-$10 each depending on where you go to buy them. Jorge chews the teats so they don’t last long....and his milk leaks everywhere. It’s also a potentially dangerous choking hazard for him, so Jorges dad and I have been buying several... every fortnight for years. Last year I rang Nuby directly and asked if it was possible to just buy the teats instead of replacing the entire cup each time. Nuby were extremely accommodating and supportive in regards to our request, (I sent them a photo of all the chewed up teats I had in the house at the time ) giving us a great price for the teats. I was able to order 100 teats for $100 and they have lasted Jorge almost 9 months!!! I rang Nuby again last week and asked if I could buy another 100 teats and it wasn’t a problem! This support from Nubby saves us over $1000 a year so We are so grateful! (I know we are being given the teats at an amazing price too!). Jorges delivery arrived a couple of days ago and Nuby threw in a dozen brand new cups for Jorge for free as well!!! All in ‘boy’ colours too!!! We are so appreciative of the support that gets extended to Jorge and I think sharing this story on Jorges Page is important because so often, when I try to bulk purchase items for Jorge that kids his age wouldn’t ordinarily need....I get met with resistance. #grattitude
18.01.2022 Who’d of thought that 5 years could fly by so fast? It certainly has as Yesterday we celebrated Jorges 15th Birthday!! He’s still the bravest kid I know! He’s still cute as a button and as gentle as a lamb! He’s still LVES Trucks! ... He still loves cuddles and exploring the outdoors! He’s still battling epilepsy and was diagnosed with Lennox-Gastaut syndrome a few months ago. He’s been admitted to hospital a couple of times since we last posted on his page. He’s had a Vagus Nerve Stimulator inserted to help control his seizures (like a pace maker but for his brain) and he’s been taking part in a clinical trial for a new drug for the last 6 months or so. His seizures haven’t really improved, despite the interventions, which is disappointing but in typical Jorge fashion, he NEVER ever complains! Jorge is a champion! He’s our champion and we love him to the moon and back!! His team of supporters is growing now that he’s a participant of the NDIS and we are all looking forward to him receiving the social supports and disability specific equipment that will help to build both his social and personal independence. It’s a slow process but things are slowly changing for Jorge in spite of all barriers he faces. 2020 should be a great year for Jorgie! Thank you all for Supporting Jorge and stay tuned for more updates as he begins to get out and about like his peers. We have big plans!! I’d also like to extend a big thank you to Greg Tinson from Dominoes Jimboomba who never fails to forget Jorges birthday. He catered for Jorges birthday party again last night warming our hearts and bellies
17.01.2022 A Big Belated thank you to Andrew from 3 goats promotions who donated 2 custom merchandise Packs! One to be added to the OPrime Prize and another to be raffled off separately
14.01.2022 I've had a couple of messages recently from people asking how Jorge is going on the Epidiolex (Medicinal Marijuana) trail. I thought I should update his page to let those of you who are following his story, know how he's getting on. I'd love nothing more than to inform you all that it's been a massive success. Sadly, this is not the case. It's only been 6 weeks so I'm mindful that things may change. However, to date we haven't seen a reduction in the number of seizures Jorge... is having. If we are completely honest with ourselves they actually seem to be getting worse. We will persevere however and give this drug ample time to deliver its fullest effect and reevaluate things when that time comes. Hopefully we will see an improvement very soon. Jorge is still having a really hard time with his epilepsy, yet he soldiers on without complaint. He is constantly covered in bruises, cuts, scrapes and marks from his heavy falls. Every loud bang causes instant panic and everyone involved in his care is on high alert because he drops so frequently and usually in the worst places! How he copes is beyond me but the kid never stops smiling. He's an inspiration!
13.01.2022 Fantastic news, just in time for Christmas! We received word today that Jorge has been conditionally approved to take part in the medicinal Marijuana trials for epilepsy, being run at LCCH in 2017, on compassionate grounds. We are so excited and happy for our beautiful boy!!! Woo Hoo!!! We have just been given the gift of hope! #priceless
13.01.2022 Staff wanted to help Jorge live his best life Week 1: 3-5 mornings per week 6-8am 8- 10 hrs on a weekend 6am-4pm 2-5 afternoons per week 3.30-6.30pm... Week 2: As above but with reduced hours School Holidays: 20-50hrs per week Role includes: -Transporting and supporting Jorge with after school activities such as music therapy and riding for the disabled. -Assisting Jorge with activities of daily living such as meals, personal hygiene and dressing -Taking Jorge out into the community for trips to the park, shopping centers and similar -Domestic support Successful Applicant/s will require the following attributes/skills: -blue Card -current first Aid -possession of a current ABN -drivers license/reliable and safe vehicle -patience and kindness -previous experience working with children and/or disabilities -physically fit (able to lift heavy wheelchair) -the ability to remain calm during a seizure Full training will be provided. Hours are negotiable and can be flexible. We are hoping to build a small team of awesome staff to help Jorge build independence and form friendships. Ultimately we would like to increase his interactions with the broader community and see him engaging in the world around him as he grows into a young man. We would welcome staff who are keen to offer suggestions for activities and experiences also. Please send all enquiries/applications via email to: [email protected]
12.01.2022 This post is LONG overdue and as such....it's going to be fairly long winded. Grab a cuppa and settle in. I haven't posted for a long time because I've struggled to find any positives to write about for Jorge. I know this page isn't supposed to be purely positive in nature but it gets hard to know what to write when life for him, feels unfair. Jorge has struggled this year so far with his seizures. He's been having terrible ones where his body literally jack knives without ...Continue reading
10.01.2022 Three years ago to this very day, the trucking community came together and showed my boy how big their hearts were by giving him the best birthday a 10 year old could ever wish for!!! Today, as Jorge turns 13, I’m reminded of this special day and just how lucky Jorge was to be the recipient of such a show of generosity of time and spirit. The time has just flown by but the sentiment is still there. Today Jorge has turned 13 and I’m compelled to thank you all again for supporting my beautiful boy! He is so loved!
09.01.2022 We had a little party at home today for Jorges Birthday with his extended family. There were lots of hungry kids to feed so it was a massive treat to have Greg from Dominoes Jimboomba/Yarrabilba offer to supply a hot lunch for everyone. He even sent a box of chicken balls (without the sauce) to accommodate Jorges ketogenic diet needs. Lunch was way less stressful than what I’d originally planned, thanks to the generosity of this kind hearted man! #feelinggrateful!
07.01.2022 Update: Jorge is now walking up to 5 meters independently and started standing up on his own yesterday too! This little guy is keeping busy kicking goals!!
06.01.2022 Patience is a virtue and THIS has been worth the wait! Today is a good day! Jorges upright change table has been installed and it's AMAZING! It has caused me to reflect on last years fund raiser and all the love and support shown to my beautiful and courageous son. Thank you again, to each and every one of you who helped us to achieve this goal. We could never have done it without you. #attitudeofgrattitudexx
05.01.2022 We haven’t posted to jorges Page for the longest time and in truth, the past 12 months have been very hard for him and there hasn’t been much in the way of ‘feel good’ stories to share. Jorge continues to suffer seizures on a daily basis despite numerous failed interventions. He turned 14 last November and spent his birthday in hospital, which was less than ideal. However, we’ve had some great news in amongst all the hardship which leads us to this post. It’s been a long t...ime coming but Jorge FINALLY has an NDIS package and we are so excited to start looking for the very best carers to help us help Jorge! We are looking for 2-3 very special humans who possess compassion, common sense, empathy and are driven to enhance the lives of those less fortunate than themselves. We hope to offer ongoing work to several people so that Jorges support network will grow with him. Regular hours will be available before and after school on Mon-Fri, along with occasional weekend work and rare sleepovers (at his house or yours depending on the circumstances/situation). Whilst rewarding, this job would only suit someone with stamina, flexibility and resilience as Jorges seizures can be emotionally and sometimes physically difficult to deal with. Full training will be given to the successful applicants. Our bottom line is and always will be Jorges safety and his happiness. You MUST have an ABN, a blue card and a first aid certificate as a starting point. Experience working with people with disabilities and or children would be advantageous. Wages are negotiable based on experience and will be discussed at time of interview. We are hoping that carers who would enjoy taking Jorge out into the community to actively participate in the community around him, will apply. Some domestic assistance and supports with hygiene and activities of daily living will be necessary to fulfill this role. Only serious applicants need apply. Please PM me for further details and please feel free to tag any very special people in your life that you think may be interested in Working with the most precious boy in our universe
03.01.2022 WE DID IT!!!!!!THANKS TO YOU!!!!! Because of all the tremendous support from so many companies, families and individuals, Jorge is finally getting the change table he so badly needs! We can't thank you all enough!!! We are all so excited! The table arrives on January the 9th 2017!!!!
03.01.2022 Wishing you all a very.......
02.01.2022 Some Fantastic Photos from Jorges Charity Night taken by Bel from Shutter Shock Photography! Thanks so much Bel!!
02.01.2022 It’s been a busy start to the year for young Jorge! He’s started grade 8 and was lucky enough to get the same teacher he had last year, who we all adore! He’s loving school and keeping himself very busy exploring the world around him every chance he gets! Jorges seizures increased in both frequency and intensity at the start of the year and we have attributed the change to both his age (puberty) and the high temperatures we have been experiencing. We had officially hit a ...wall and had no choice but to venture back down the path of pharmaceuticals. Something we’ve avoided for the longest time, knowing nothing much really works with any measurable or ongoing positive impact. He had an overnight stay in hospital a few weeks ago and was started on a new drug called Vimpat that isn’t normally available to people under 16 years of age. So far we’ve noticed a small reduction in the number of seizures (about a 10% reduction) and the intensity of the big seizures he suffers seems to have decreased slightly too. Jorge is still a VERY long way off where we’d like to see him but we are at a stage now, with his epilepsy that we’ll take whatever positives we can get. Additionally, Jorge is now on the waiting list as a category 2 patient for a vagus nerve stimulator. This device acts much the same as a pacemaker for the heart, only it’s connected to the Vegas nerve and sends impulses into the brain with the intention of interrupting the abnormal electrical spike wave formations that cause seizures. It won’t stop the seizures from occurring but will hopefully shorten their duration by interrupting the electrical activity in his brain, causing the seizures, to stop. It works really well for some people and only marginally well for others......but we’re forging ahead with it anyway! Jorge may just be one of the lucky ones. Fingers crossed. Jorge also has an appointment with a specialist orthopaedic group in Brisbane next week for a fitted fiberglass protective helmet for his head. One that will hopefully protect his eyes and forehead from further injury. We are all really looking forward to Jorge having better protection for his head!! We’ve got a couple of busy months ahead of us with Jorge but I don’t doubt for a second he’ll breeze through all of it like the champion he is! #lovethiskid
01.01.2022 This amazing prize was won last night by Peter Michael, owner/operator of Peter Michael Mechanical on Trade Link Rd in Hillcrest. As we were wrapping up our night, Peter bought his prize over to Jorges father and I and donated it to Jorge!!! Such a nice thing to do The best part about is, is we get to share Jorges photos with you all when he redeems this prize! Jorge has no idea just how lucky he is!!
