28 posts

surgury is all over, 7hrs and she was done. everything went as good as we could have expected feeling in both legs, numbness on the right hand side and temp is fluctuating. she had a bit of a restless night but other wise is amazing #scoliosis #mummyblogger #hemivertabrae #sick #paigesjourney2018 #love #sickkidsofinstagram #scoliosiswarrior #bentnotbroken #family #bestfriends #royalchildrenshospital
We finally have an operation date. 3rd of December Paige is nervous and eager to get this finally over with. #scoliosis #mummyblogger #hemivertabrae #operation #love #bentnotbroken #bentbutneverbroken
Pretty much current situation👆🏼 Quick Little update, Mia got discharged from hospital 🙌🏼🙌🏼 little girl is doing really well and just need to do some more healing which will need time and will go much better in her familiar surrounding anyway.. we are currently taking a couple days in a hotel to come a bit to our senses away from all he tubes needles and people, AND for mom to turn a bit into a human being again, we will be back with more updates soon! For now, much love and peace out ✌🏼💕 - #magirl #openheartsurgery #littlegirl #vsdbaby #hemivertabrae #humblingexperience #roadtorecovery #timetoheal #timetogetchunky #chunkymonkeyinthemaking #loveofmylife #roughtimes #mamaneedtobestrong #keepgoing #keepfaith #fitmom #willbeback #gymlife #delerious #sleepisoverrated #chands #cardiology #pediatriccardiology #gainesville
* T H E . O P E R A T I O N - P A R T . O N E The human spine is basically made up of rectangular building blocks (vertibrae) which all stack up on top of each other, to create a straight structure. The way Oscar's spine had developed in utero meant that some of these rectangular blocks had grown unevenly on one side, and were now triangular. Hence creating a curve to one side. These vertebrae are referred to as hemivertabrae as they are only half developed. * The day before his surgery Oscar had to have an MRI and a CT scan. The surgeon had decided he was going to operate on the top curve first, by removing three of the hemivertabrae to see if it would encourage growth on the inside of the curve. The operation would be very tricky as he had to remove them around the delicate spinal cord. If the spinal cord were to be damaged, Oscar could end up paralysed. Therefore the MRI and CT scans were imperitive to both the spinal and neuro surgeons, as one tiny mistake could change Oscar's life forever. We were told there was a 90% chance that everything would be ok, but it's amazing how huge 10% seems when you're putting your child's life in the hands of a practical stranger. * Oscar was an absolute superstar throughout both scans. The MRI was incredibly noisy, and rather long, but he was given earphones and there was a mirror inside the scanner so he could watch a movie whilst it was being done! After the scans, he had to have a blood test in case he needed a transfusion after surgery - with this kind of surgery you can lose a lot of blood. Oscar is terrified of needles and it took a lot of gentle coaxing and an iPad before the doctors got what they needed! * So then he was set! The operation was to take place the next morning. We headed off to our hospital accommodation for the night, but none of us got much sleep... * * #spine #vertabrae #hemivertabrae #surgery #mri #ct #bloodtest #superhero
. During his stay in Bristol, Oscar had numerous tests and visits from lots of different consultants. We found out that his scoliosis had caused his rib cage to form abnormally, creating very little chest capacity on his left side. As such, his heart had been shunted across into the right side of his chest. This then gave his left lung a little more space, although it was only actually half the size it should have been. He underwent tests on his kidneys too but thankfully these came back clear. . This photo looks quite scary, but for those in the know he was just about to have an ECG where they monitored his heart. This came back normal too which was another small victory for us! . We discovered during our stay that my poorly managed gestational diabetes had been the reason he'd been so poorly when he was born. His blood sugars were very low and he wasn't managed properly at the hospital where he was born. I was told late on in my pregnancy that I had GD, but that there was nothing to worry about and that I should just carry on as normal. In my two subsequent pregnancies I ended up on insulin which makes me quite sick now thinking back to what could have happened to Oscar. . Finally the day came for Oscar to have surgery to fix his inguinal hernia. I was an utter mess when they took him away, and was convinced I'd never see him again. They were concerned how he'd cope under a general anaesthetic given that he only had the equivalent of one and a half lungs. But being the little fighter he was, he came through the surgery with no complications and we returned to his bedside to find him sleeping with a tummy full of milk! . Two days later we were finally able to take him home. It was a week before my birthday and was the best present I could have wished for. It was only when home that the trauma of the past 11 days properly hit me. I realised then that Oscar's birth was only the tip of a very scary iceberg. #scoliosis #dextracardia #hemivertabrae #ecg #gestationaldiabetes #surgery #scbu #scbubaby #goinghome
Playful Baby Whoopsie 😊 Excuse the loud clanging of the dishes in the background, Bunky was trying to tell me to hurry up with breakfast. 😂 #whoopsie #catplay #cat #spinabifida #scoliosis #hemivertabrae #catsofinstagram #kitten #kittenvideo #kittensofinstagram #catmom #catlady #catparents #cattoy #specialneedscat #diaper #pampers
Baby Whoopsie has had quite the first week with us—Watching these videos you would never know though! Earlier in the week she was severely constipated and not wanting to eat. She ultimately had to receive an enema. Now she has a UTI, which is being treated. Through all that, she has been very tolerable of her diapering, her baths, and all my palpating of her abdomen to check for hard stool and expressing her bladder! She amazes me. I feel very grateful that she still loves me and shows affection even after all the ‘torture’ I put her through. She still even brings me her toy mouse. ❤️ #whoopsie #playfulkitten #kittenvideo #kittensofinstagram #kitten #spinabifida #scoliosis #hemivertabrae #specialneedscat #catmom #catdad #catparents #catlady #grateful
Matthew and I were not expecting to be adding to our family since we have such a full house, but life is full of unexpected changes. 🎀 🎀 🎀 🎀 🎀 🎀 🎀 We were given the opportunity to change this baby girl’s life. After much consideration, we decided to bring her into our family. After spending this weekend with her and caring for her, we realize just how blessed we are to care for such a sweetheart. She was scheduled to be euthanized this past Friday. Instead, that was the first day of the rest of her life. She has multiple spinal issues, including scoliosis, hemi-vertebrae, and Spina Bifida. With these issues, she does not have control of her bladder or bowel movements. Otherwise she is just like any other kitten— playful, silly, and cuddly. We don’t know how long she has left on this earth, and how exactly her condition will progress, but we’re determined to make her life the best. She is truly special—it won’t be easy, but it’ll be worth it. Welcome Home Whoopsie ❤️ #whoopsie #manx #manxcat #manxsyndrome #pampers #diaper #specialneedscat #kitten #spinabifida #scoliosis #hemivertabrae #meow #catparents #catmom #catdad #kittiesofinstagram #adoptdontshop #itsagirl #welcomehome #baby #calico #cat #kitty #purrfect #kittensofinstagram #catinadiaper
The cushioned leg loops and frame mean Peggy stands straight on her hind legs and stops her from walking on the tops of her feet rather than the pads. Something she tends to do as she has moderate weakness and isn’t always aware of her back end drooping. . . . . . #pug #pugs #fawnpug #pugsofinsta #flatnosesociety #flatnosedogsociety #qtpugs #pugsofig #pugoftheday #pugsofinstagram #pugsinwheels #pugsinwheelchairs #disableddog #disableddogsofinstagram #hemivertabrae
It's been a super long few days, we are finally home. Paige is very very sore and I'll be calling the RCH to get things moving along quicker. Her headaches are getting worse, her sleeping is erratic and her breathing is hurting. She really done amazing while we were away to Not complain and just enjoy herself. And not to add everyone slept for almost 24hrs after we got home HaHa #scoliosis #mummyblogger #hemivertabrae #love #paigesjourney #paigesjourney2018 #scoliosissurgery #sickkidsofinstagram #blogger #queensland #herewecome #homebound #bentnotbroken #spinal #spine
Day 3 and 4 So sorry I didnt do a blog yesterday, by the time we arrived home from dream world it was get inside, get changed and go again as we went out for dinner and to the movies to see TAG. Really you must go see that movie, its hysterical. So we spent the day yesterday at dream world/white water world. Was disappointed to say the least. Alot of the rides were closed down for maintenance, 2 rides broke down while we were there and the water park felt dirty. Definitely needs a revamp. Today my chronic fatigue was in full steam, I couldnt move. I slept most of the day on the couch sleeping, while makayla took the girls shopping. So not really much to report. I'm not sure if he is reading this but it's been a long time since Paiges dad and I have seen things on the same wave length, but during this process we have been able to be a United front for Paiges sake. Unfortunately he wasnt able to join us on this holiday due to personal reasons but he has helped me be able to give these girls an amazing time and Dave if you do see this I really want to just say thank you :) And finally Craig, you have kept the forte running at home. You were there for Brooke on her 18th while i couldnt be there. You have done work drop offs and pick ups, fed my furbabies and made sure everything is running smoothly and I am so so thankful to have you in my life ❤ #scoliosis #sickkidsofinstagram #hemivertabrae #mummyblogger #love #paigesjourney #paigesjourney2018 #love #scoliosissurgery #bentnotbroken #family #bestfriends #like4likes
Day 3 What an awesome day we had today, weather was 100% on our side and off to Movie world we went. AND MAY I ADD the scooter I hired was shared by EVERYONE haha I have photo evidence of this as well 😁😂 We arrived around 11.30 after discovering they had an after night event on tonight so didnt wanna get there to early and be buggered by the time the evenings events started. First off the ranks was Jemma and April on the Batman ride (Photos below) both seemed to enjoy that and came away giggling. Next was the DC roller coaster whhiicchhh miss jemma blacked out on 😟 But woke up still screaming and had missed half the ride haha We then followed the path around and they didn't miss a ride. All rides had a sign " If you are suffering with any back related health problems we warn you to not go on this ride". Paige enjoyed every ride there haha #rebel I wanted to wrap her in cotton wool, but the purpose of this trip is for Paige, I'm not getting in that girls way ❤ Again I need to thank Melissa Smith who made all of this possible, from high school friends to life time friends. #scoliosis #mummyblogger #scoliosissurgery #love #jamescharles #sickkidsofinstagram #scoliosiswarrior #healthy #spinal #hemivertabrae #paigesjourney2018 #movieworld #family #bestfriends #sisters
So thos happened guys!!! We are able to take that holiday for Paige before her surgery. We are all excited and cant wait to share lots of photos with you all ❤ #scoliosis #mummyblogger #hemivertabrae #love #paigesjourney #gofundme #paigesjourney2018 #scoliosissurgery #sickkidsofinstagram #blogger #queensland #herewecome
#scoliosissurgery #dream #surprise #sickkidsofinstagram #scoliosis #mummyblogger #hemivertabrae #love #gofundme ❤❤please read our story and donate to Paige's #gofundme so we can take her on an adventure of a lifetime before surgery, link in Bio ❤❤
For most patients with what we call idiopathic scoliosis, the curvature is on the right side of the thoracic spine, or the upper back,” says Cho. “If the curve is severe, you can see a rib hump.” If left untreated, severe cases of scoliosis can worsen over time, impairing heart and lung function. As you can see this is how Paige's spine is. She has regular back pain Even from coughing or sneezing it can send shooting pain down her back #scoliosis #sickkidsofinstagram #hemivertabrae #love #gofundme #paigesjourney #paigesjourney2018
Removing that bone wont be as easy as it looks. We need to shave it down and prey it doesnt effect the spinal cord any more than it has #scoliosis #mummyblogger #blogger #spinalcordinjury #teenagers #hemivertabrae
My 13yo daughter is about to undergo surgury that she has a high risk of never walking again afterwards as she has a very rare spinal condotion. Shes an avid dancer, a beautiful soul and rather than be sad and miserable she wants to go to QLD and experience the theme parks and swim with the dolphins before her operation. If you have $1 to spare please help us make this happen. Im a single mum and just cant do it on my own. Keep this post bumped ❤❤❤ Here is also a link to her page for anyone that would love to follow our journey Sorry to edit again, but please feel free to share both links The more the merrier. Xx https://www.facebook.com/Paiges-Journey-178410552980781/ https://www.gofundme.com /5hna78g #scoliosis #hemivertabrae #mummyblogger #live #love #paigesjourney
8 weeks till surgery 8 weeks of legs 8 weeks of living #wegotthis #scoliosis #hemivertabrae #mummyblogger #blogger #rch
Hmmm, why does my back always hurt? #hemivertabrae
My legs might not work on our way to the hospital ... but I can still sit like a boss 😊😎 surgery was done today and I made it and am awake 🤗 now recovery time... My parents have lots of work and time ahead of them but they do truly love me and this situation just shows how much they care 💗 I shouldn't be put to sleep because of this, no one should 🙍🏻💔✊🏽