Simply Loving Taylor Incorporated in Singleton, New South Wales | Non-profit organisation

Simply Loving Taylor Incorporated

Locality: Singleton, New South Wales

Phone: +61 499 707 553

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25.01.2022 Day 2 Not going as smoothly as day 1 Taylor has just undergone Fluid Infusion testing where they insert fluid to his brain. This showed high levels of pressure and has made him extremely nauseous. Taylors medical team will now gather all the testing information & meet with us either tonight or early tomorrow morning with the results

25.01.2022 Paediatrician Appointment We had Taylor’s VERY in-depth paediatrician appointment today. Taylor has a huge list of specialists looking after all aspects of his health: Neurosurgeon... Neurologist Geneticist Plastic surgeon Craniofacial team ENT specialist Ophthalmologist Spinal surgeon Sleep specialist Special needs dentist Australian Hearing Physiotherapist Occupational therapist Speech therapist The Paediatrician goes through all results & reports to form an overall summary of Taylor’s current & future needs. We are very pleased with today’s outcome but unfortunately still no actual diagnosis. Undiagnosed Complex Syndrome ...... that’s our WARRIOR

24.01.2022 Craniofacial Clinic Delighted is an understatement! Taylor just had a checkup with the Craniofacial team at Westmead & the Doctor is Extremely impressed (docs words) with his progress. No skull procedures needed in the near future & we dont need to see the Cranio team for 12 months. ... Our Warrior continues to amaze us everyday

24.01.2022 A Surgeon in the making??? He knew exactly what to do, in the correct order, to give Puppy a GA & stitch up his ear.... This Puppy has been with Taylor EVERY time he gets put to sleep for a surgery/procedure (22 times!)

23.01.2022 Taylor you are a Super Star!

23.01.2022 Poor little poppet has been unwell for a week now, just cant shake the virus. He even took himself to bed for a nap, normally he naps on the lounge

22.01.2022 Determined Learning to tie shoe laces!

22.01.2022 Hunter Urban Dance Studio Thank you all so much for giving Taylor the gift of Dance, we shall see you again next year!

22.01.2022 RESULTS After 3 days of procedures & tests (some of which were very invasive), we have answers as to why Taylor suffers from dizziness, headaches & migraines. Dizziness is from a combination of a few things, anaemia, low iron levels & his eyes have deteriorated. Well visit the Ophthalmologist & Paediatrician for further treatment.... Headaches are caused from all of the scaring in the skull from the many surgeries hes undergone over the years. Good news is that he doesnt require any skull surgery in the near future. Migraines - were starting a preventative medication to help with this so were eager to see how this goes. Were also visiting the ENT as we know his ear bones have not formed correctly, theyll also check his sinuses. Both of which can be causing dizziness & headaches. Hes feeling much better today & is catching up on the meals he missed yesterday! Great news, home today

22.01.2022 Taylors Dance Studio shared this post

21.01.2022 BOYS CLASS IS BACK!!! Our boys were utterly amazing at last years concert, we can’t wait to see what they do this year!! These guys have the best time in class... and have learnt to let loose and be themselves. So proud!!! Agility, coordination, strength, friendships and confidence are just some of what these guys have built in class. #boysdancetoo #hiphop #strength #dance

21.01.2022 HAPPY MOTHERS DAY Being a mother is learning about the strengths you didnt know you had, and dealing with the fears you didnt know existed

20.01.2022 Our Warrior In recovery enjoying some sleep. Itll be a long wait for results but at least this one is a short stay & well be back home tomorrow.

20.01.2022 Warrior Newest scar & healing nicely

20.01.2022 Christmas 3 years ago was spent in Hospital! Thanks so much to all of the amazing specialists for continuing to look after our warrior Christmas this year will be spent at home with our little family of 3, enjoying a seafood feast and being extremely grateful for all of the good things we have in our lives

17.01.2022 Just love watching these memories & seeing how far this guy has come Hed just turned 3 & was taking his first steps!

17.01.2022 Poor lil poppet has spent the last 36 hours like this. Headaches are nasty

17.01.2022 Orthopaedic Specialist Great news - Taylor’s spine hasn’t changed since last visit so no surgery required at this stage, back for an assessment in 12 months. Not so great - the MRI scan showed that he has a cyst at the base of his skull, we’re waiting on an appointment with Taylor’s Neurosurgeon to find out more.

17.01.2022 RESULTS ARE IN After being told Taylor has a lump on his brain, we have had what feels like the longest wait for results. The scan was reviewed by the Neurosurgeon, apparently Taylor has an abnormal Cerebellum (which is part of the brain). This causes:... * Dizziness * Balance issues * Impaired muscle coordination * Trouble eating * Uncontrolled eye movements * Headaches There’s no treatment, but we are relieved to finally have an answer as to why Taylor has been experiencing these issues. Keep on battling little warrior

15.01.2022 Well done Taylor Great work with spelling & handwriting!

15.01.2022 They shall grow not old, as we that are left grow old. Age shall not weary them nor the years condemn. At the going down of the sun and in the morning, we will remember them. LEST WE FORGET

14.01.2022 Our amazing boy had needles today, Taylor was much braver than Puppy He walked out smilingly, such a resilient boy!

14.01.2022 Kids size Japanese Bento Box

13.01.2022 September is Craniosynostosis Awareness Month Craniosynostosis is just one of the many medical conditions Taylor was born with. He is faced with a long journey ahead of him with monitoring of his skull, brain, spine, low muscle tone as well as his anemia. Taylors medical team have said that his face & jaw will continue to grow twisted but theyre unable to know the severity. Hell need jaw & another skull reconstruction surgery when hes older but theyll continue to monitor him with regular appointments at The Childrens Hospital at Westmead. Taylor & his family would like to take this opportunity to thank each and every one of Taylors followers & supporters

12.01.2022 What a little cutie! His face when he sees himself on the big screen

11.01.2022 World RARE Disease Day - 29 Feb 2020 A day to raise awareness for rare diseases, in hopes of improving access to treatments and medical representation for individuals with rare diseases. Taylor is 1 in 7 billion with his rare condition "Undiagnosed Complex Syndrome"

11.01.2022 Spine appointment & brace adjustment Were hoping hell be able to tolerate wearing the back brace with the new adjustments/modifications, its been quite a struggle getting him to leave it on for more than 10 minutes at a time. Well be back in a few weeks for an MRI to check the scoliosis. Keep on smiling warrior

11.01.2022 Fingers crossed Were hoping the next lot of specialist appointments & tests may help to find a cause of Taylors fatigue. He is 9 years old & can easily sleep for 2+ hours each day

10.01.2022 Next Surgery Taylor will be undergoing Intracranial pressure (ICP) testing next week. This is done by monitoring the fluids inside the skull and in the brain tissue. He already has a permanent reservoir (pressure monitor) inside his skull, the surgeon will open up the reservoir & feed tubes thru to the centre of his brain. These tubes will be hooked up to the testing machine. After 24-48 hours of testing, the tubes are removed & we will have the results.... Our little warrior is well aware of whats happening this time around & is looking forward to spending 2-3 days watching movies & eating his meals in bed..... Meanwhile mummy & daddy are feeling very anxious about the entire thing!!

09.01.2022 Looks like 2020 WILL be Taylors very first surgery free year Weve had our phone appointment with the spinal surgeon and although we know Taylor needs spinal surgery, it wont be any time soon. Further scans will be done in November to track his progress but for now....... we can enjoy some time off from hospitals

09.01.2022 SUPERSTAR Taylor is the FACE of a new Research Project "Face Match" The aim of the research is to hopefully find a diagnosis for those patients that are classed as undiagnosed (like Taylor).

08.01.2022 Happy Halloween Ready to spook his dance mates!

07.01.2022 Surgery done Taylor is relaxing on the ward & enjoying some food! He has been hooked up to the monitor to check for pressure on the brain. Fingers crossed for good results

06.01.2022 Todays appointments didnt go as planned There is a chance that the pressure on Taylors brain might be building up again. He has been booked in for surgery in 3 weeks to have the levels monitored. We have our fingers & toes crossed for good results!

06.01.2022 Ophthalmologist Todays appointment went well, the lazy eye is looking much better, only need to patch the good eye for an hour a day instead of 4 (even puppy wears a patch)! Well be back on Friday for an MRI under a general anaesthetic.

06.01.2022 MRI Big day already & its not even lunchtime! In the car at 4am to get to the Hospital first thing, underwent MRI & is now resting with his new puppy blanket the doctor gave him

05.01.2022 3 monthly blood tests This little guy is the only human I know that can smile whilst having his blood taken. Time to check his iron levels to see if his anemia has improved with the new meds, fingers crossed for good results

04.01.2022 Hearing test done for another 6 months! Left side remains the same with severe loss, right side has improved to mild loss

04.01.2022 HAPPY EASTER We hope you all enjoy the Easter break with your families

03.01.2022 Poor lil guy Weve had a fantastic few days but obviously overdid it Fingers crossed a bit of rest will do the trick so we can enjoy the rest of our getaway

03.01.2022 Last appointments for 2020 With Taylor’s recent results showing he has an abnormal Cerebellum (part of his brain), we were hoping that medication would help with his dizziness/balance issues (Vertigo). Unfortunately this isn’t the case, because of Taylor’s ear abnormalities, he will always have dizziness & be unsteady on his feet. The specialist has recommended Intensive Vestibular Physiotherapy to help him manage the symptoms. Rehabilitation is the only option. Nex...t step is to find out what therapy is available in our area Warrior

03.01.2022 At our 2nd home Back again to see more specialists to get to the bottom of Taylors migraines. After a very long & in-depth appointment with the ENT, they have decided to look further into Taylors Ear & Nose abnormalities. Unfortunately this means he has to go under a General Anaesthetic AGAIN. I have total faith in Taylors medical team & we feel comfortable with their decisions. The Dr said shell mark his case as urgent but we could be on the MRI wait list for at least 3 months. It was fantastic to see that NO-ONE was allowed entry into the Hospital before having a temperature check and wearing a mask was compulsory!

01.01.2022 How is everyone? Taylor is in day 7 of ?? days of self isolation, we need to protect him especially with his low immune system, he is just 1 of the thousands of vulnerable people that need to be kept safe. Sending love & virtual hugs to everyone

01.01.2022 THANK YOU Hunter Bowen Therapy for your amazing generosity

01.01.2022 Taylor & his dad have featured in the latest ARCAN (Australian Rare Chromosome Awareness Network) flyer. This flyer will appear in Hospitals, Dr surgeries & medical offices Australia wide!