Our Bella Rose

Our beautiful Bella Rose, you're officially 16 today! You are one of a kind, you make us proud every day. You work hard at all you do. Your heart is so pure, kind, inclusive and fun. You're loved by everyone that gets a chance to see the real you. You are quick witted cheeky, a lover of footy (AFL and NRL thanks to grandpa and your dad). You adore little ones and they adore you right back. You're gentle, quiet but oh so determined, strong and resilient. You have achieved so much in your life so far. We are incredibly proud of you our gorgeous 16year old! We can't wait to see what you achieve in the years ahead. 💕🎉🎂🥳
Thank you all for going on the journey with us. X

This little champ earned herself a medal after her swim carnival efforts. So proud of you our Bells. Last week was spine and dental review up at QCH which went well. Not much decline with her scoliosis which is what we wanted to hear. The Ortho spine team will continue to monitor Bella closely until she stops growing... excited to find out she is still growing 😊.
Bella has settled in well to year 10 and is doing lots of great things, and always working hard.

Thank you all for the prayers, the review went much better than it started last week. We had a different delegate that listened instead of arguing today. Her assessment of Bella's needs will go to someone higher up prior to making their decision. Hoping and praying for a good outcome.

Bit slow but happy new year's to all. Bella has enjoyed her holiday break but missed the structure of school. She is looking forward to getting back into the swing of things in year 10 this year. I can't believe our Bella is going into year 10, and turning 16 in May! Time goes by way too quickly.
To all our prayer warriors, please say a prayer for us tomorrow as we head into the last part of the assessment stage for Bella's change of circumstance review. Bell has been rolled over with NDIS for 5years now, and her needs are beyond the support that's provided currently. We are hoping this next plan meets her needs better so she can continue to achieve her goals. 🙏🏽

All our praying friends, we are heading into Bella's NDIS review now to hopefully optimise her supports to reach her goals. Please pray it goes well and she gets a budget that meets her needs.

Our miracle girl is 15 today! We are so proud of you our Bella Rose💕. You are kind, you're inclusive, you are so loving, you're quick whitted, you're cheeky, you love others with your whole heart. We are so so blessed to have you as our number 1 girl. You have not had an easy life by any means but you never complain, you're always thankful and always give your all. You have taught us so much and we continue to learn from you and how you do life. Thank you for being the calm, cool collected one in our crazy family. Thank you Jesus for 15 years more than what we thought we would get with our amazing Bella. Love you always and forever 💕. Thanks for coming for the ride with us.

I cannot put into words how proud I am of Bell's today. She shone like a star on stage at her dance concert today. She was surrounded by her beautiful team, teachers and friends. TADA provides an incredible space where all kids with all abilities have the opportunity to shine. It took a lot for me not to be a blubbering mess today watching all the children shine. They all have their challenges, but they push beyond them, and make the most of this precious life we have been given. We can learn a lot from our children and the determination and strength they have. Thank you Therapy and Dance Association Inc. you are one in a million.

Sorry long time between posts...that's usually a good thing as no major changes health wise. However, thought I'd pop on to share Bella's big decision of getting baptised tomorrow. Bella has a strong Christian faith that has helped get her through all her many challenges in her life. Tomorrow she's taking the next step, and declaring her faith in Jesus in front of our church family. Bella is super excited about it, and also a bit nervous of getting dunked lol. We are so proud of her and the beautiful young lady she is growing into.
*Picture of Bell's next to her picture at QCH, still on the wall. This week we were up there for dental review which was all good, as was cardiac review the week before:)

We have had a few people ask lately, what's next for Bella? It made me stop and think, as usually we are working towards the next medical thing, or knowing something needs fixing before looking too far ahead in life. It's so exciting to think there is no set medical problems needing 'fixing'. Her heart is going great, her Gastrostomy site is healed and we have got on top of her psoriasis. Her anxiety is getting better, she's happy going off to school. Bella has plans of being a kindy helper teacher one day.
For now we work on life skills, continue to work on social skills, strength and she starts dance class today, it's one thing she's really keen to get into. We know there will be things that come her way that will need medical intervention or support for, but for now we focus on celebrating how great she is.
The most exciting part, is that since Bella was born, travelling out of the country was out of the question due to all her medical conditions still waiting to be sorted....and the thought of not having reciprocal medical was just out of the question to think about. We are working hard and saving for our first overseas trip as a family next year😃.

Bella officially turned 14 on Wednesday....after what feels like a month of celebration prior 🤣. Bella loves celebrating her birthday, anyone that knows her knows she counts down to her birthday all year round. So a month of celebration is required lol. Bella made it back to school this week after a week of rest after her op. She's doing amazing, you wouldn't know she had surgery last week. Her surgical wound is healing but she has had a flare up of psoriasis around the surgical site. So still a bit to go to get on top of her skin, but so much better than dealing with constant leaking and pain of her skin burning from stomach acid.
Bell took some slices in to school to celebrate with her class on Wednesday, then went to the hospital for post op review, then out to dinner with friends. Today another lunch out with her Newcastle grandparents and GC grandparents and family. We are now officially finished all the party celebrations after starting very early in case Bell wasn't up to partying post op:)
If anyone deserves that much celebration it's you my girl, you make us so proud, you push through every challenge with a smile and thankfulness. 💕

Bell's had a great day, she's feeling so much better now that we have stopped the antibiotics. We had to stop them early as Bella just wasn't tolerating them, her poor gut was struggling. She has been fine today, with no pain meds either. She wants to jump on the trampoline so that's saying something...but I'm making her wait until surgical review Wednesday to see how the wounds healing. So thankful for all the prayers, they were answered🙏🏽.