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Help our Lucy stand tall - Lucy’s Scoliosis Journey

  • Clinic visit 4 completed 🙂

      14 May 2021
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    We have just completed Lucys 4th clinic visit & it has been a roller coaster of emotions & commitment. It was a very full on week.

    Lucys spine is holding but regressed slightly since our last visit. A huge push has been made to adjust the Brace & mind! You can see from the MRI images her spine on Monday morning right & middle, to the new adjustments left.

    With a lot of adjustments & incredible hard work over the next 3 months we hope to have even more correction. Its not easy, lots of sacrifice, major determination & commitment, well worth every step though. It's going to be a massive push!

    Each trip back here we meet amazing past, & new friends, some lifetime friendships are formed, it's fantastic. The Doctors have always improved things, they never stop forward thinking. It blows me away each time to see what this treatment is doing to improve so many spines & to see the quality of lives changed with many already.

    It's been really nice to be the ones showing new made friends around the local area, & to be able to give some tips & tricks to help them through their first few weeks in clinic. We are no longer the newbie's..we have come a long way since that first diagnosis.

    It's hot & sunny still..love this. Getting used to masks & hand sanitizer again..don't love this bit!

    We have just arrived back to NZ & are now in Managed Quarantine. 3 negative covid tests complete & 2 more to go. It cost $1000nzd just to have a pre entry negative test to USA & NZ..crazy cost!

    I have just set up all the equipment in our therapy/hotel room, it's a tight squeeze this time round. We went for our first get out of your room once a day 45min walk..around the car park. Hmmm! 😷 We are in Auckland this time, beside the airport.

    Love the support we get from so many of you , some of you we have never met. Thank you all. ❤ You all helped with the success of this trip. We are very grateful 🙏

    Because we have gone down this path of treatment & research..we have been able to reach out to another family in NZ with our story, who are now also doing this treatment for Scoliosis.

    More understanding & awareness of Adolescent Idiopathic Scoliosis needs to be made. There are choices that can be made & changes that need to happen in helping to recognize our children's spine health early.

    Lucys next trip to clinic will be in August with her Dad.

    Overall positive results & we are still on this amazing journey. 🦋💛

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  • Here we go again & we need a little help 🙏🦋

      22 April 2021
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    Lucy & I finally get to travel to clinic again in San Jose, USA. We leave next week & with quarantine will be away for a month.

    This will be Lucys 4th treatment visit & my 3rd with her. Unfortunately her trip back with her Dad in January was canceled last minute due to Covid & other commitments.

    Lucy has recently received xrays to see how her spine is looking. During this time she has grown fast & now reached Risser 5 which medically for Scoliosis means skeletal maturity. This means she is in adult lockdown & minimizes the window of opportunity to keep reducing her spinal curve.

    She is proving to be holding well & her curve has reduced immensely. The specialists have advised that it is imperative for her to be back in clinic & be fitted for a new brace within the next weeks. We have a short time frame to work with now.

    The specialists will give us a plan to work with to maximize her spinal curve reduction & reduce her rib hump, with the view to wean off within 12 months.

    Once we are actually back in clinic & Lucy can be looked at & given an MRI, then we will get the full picture.

    This journey so far has not been without its challenges for us all physically, mentally, emotionally, financially & with added world issues. It has however been rewarding & worth every effort to see Lucys progress, which is pretty flippen amazing so far!

    We are committed for the final push.

    For me this particular trip is being made on a wing & a prayer. 🙏

    I am at this stage still trying to gather the funds to pay for the clinic fees & the new brace which is required. These come in at a cost of $12,400 USD (approx $18,000 NZD)

    I am putting it out there reluctantly & feel very humbled to ask for help, which for those who know me well seems to be very hard for me to do.

    Can I ask if anyone is willing to help in any way by sharing our journey & or by giving in any way at all. Trust me I do not like to ask!

    I do look forward to being able to pay it forward without question in the future. 🌻

    Lucy & I are truly grateful for all the help we have received so far. It does make me quite emotional.

    I have two jobs & am very lucky that they both support me to take time off & focus on this. However there is loss of income while away.

    We have been blessed with help with meeting new life long friends, accommodation, & beautiful upgrades in flights for Lucys comfort. I have amazing support with looking after Braydon my youngest. It's so hard to leave him each time. He seems ok with it this time though. 🙂

    Each trip has been so much harder & longer due to having to quarantine on return for two weeks. This is not an easy time although we are making great moments along the way.

    Thank you all so much for walking with us. Lucy really is standing taller.

    Look forward to giving updates once we are back in clinic. ❤🦋

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  • New update coming soon 🙂

      29 March 2021

    It's been a while since an update! Since our last trip plans have not quite panned out.

    We are waiting on latest xray images to look at Lucys spine and work a plan for ongoing treatment.

    I will post an update in the next week or two. Thanks for you ongoing support & encouragement ❤

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  • We will keep going...

      30 December 2020
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    Lucy heads back to the USA again this coming January 2021. It will be exactly 1 year since starting this incredible treatment to straighten her spine from Scoliosis, & straightening it is. What a year its been 2020!! This will be her 4th trip & 3rd NZ quarantine! Massive sacrifice & hard work both away & at home.

    We are not sure how long we will need to keep going with this treatment, perhaps a year or 2 yet. Let's see how the results look & how Lucys growth is looking with this clinic visit. Certainly alot taller since the start.

    Super proud of you Lucy..perseverance & pushing through even when you don't want too! Early mornings & dealing with my encouragement 😁 though you may call it something else 🤪😘

    Looking fabulous girl 🤩

    We appreciate the huge support & generosity from you all. Keep cheering us on. It helps so much.

    Massive thank you, love, hugs & smiles ❤ We will keep striving forward 2021...

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  • Another week completed 😷

      5 October 2020
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    We made it through another intensive very hot week, temp average 36-38degs. The air quality was often not great. We were grateful for the masks 😷 🔥

    The Doctors here in USA & Lucys Orthopedic Specialist in NZ have confirmed that Lucy is now well below surgical range. This is the best news. We need to keep working hard with this treatment allowing her spine to straighten, derotate, and nerves to stretch untill Lucy reaches full skeletal maturity. At least another year or two, with quarterly trips back to clinic, and treatment at home still twice daily.

    Lucys brace has been tweaked loads to adjust to her growth. Feels like a new brace to break in again.

    The equipment has changed a lot & has also been adjusted to help me too! Hopefully save my wrists.

    The spinal weights exercise & equipment is no longer required. Just the chair & nerve stretching, plus brace. Super exciting, & now our luggage is 22kgs lighter! 😁

    These doctors always inspire us. They are incredibly passionate with what they do, and way ahead of the game!. Lucys Orthopedic Specialist in NZ is fully supportive with the choice we have made. He has said there is more supporting research and evidence in the last couple of years coming through around this form of non surgical treatment.

    We are definitely on the right track.

    Relaxing now for a couple of days before a few flights home. Then the two week quarantine back in NZ.

    Lucys next trip is with her Dad in Jan 2021, then again with myself in April.

    Standing taller for sure.👍

    Thanks for you ongoing support 💛 🙂 it is really appreciated. 🦋 xox

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  • Currently back for our 3rd clinic visit 💛

      30 September 2020
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    3rd visit 2020! What a crazy time to be traveling...

    We are finally here after 4 changes to our flights. It's very hot, adjusting to wearing a mask all day & hoping there are no more local fires. 😷

    We are very lucky to be staying with wonderful friends again not so far from the clinic.

    Lucy has grown alot this year, they are currently making lots of adjustments to her brace, chair, nerve stretching & spinal weights. Its quite a job for the technicians. Then its quite a job for Lucy to use & wear in different positions.

    Her spine was out of brace for 7 hours, looked at with an MRI & shows its holding shape with a slight 2deg difference. It will be good to see how things are after this 5 day intensive work and new changes.

    An x-ray of her hand on last visit still shows quite alot of growing to do yet with the growth plates. This is good, she still has time to adjust.

    All positive, the hard work is worth it. 💛🦋

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  • Second visit..WOW!

      4 July 2020
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    Lucy has just completed her 2nd intensive treatment in clinic at Scoliosis Care Centers, San Jose, USA.

    All I can say is WOW look at these results to-date! 🤩 The hard work, commitment & determination is showing through.

    We are definitely on the right path...long way still to go yet to keep improving & to hold the spine for a healthy future, but so worth it all.

    Lucy & her Dad will head back to NZ with all the adjusted equipment early next week. Quarantine lockdown for two weeks is required on arrival back 😷

    Lots of home therapy to continue before we head back for her 3rd visit in September.

    Again thank you all for helping make this possible. 💛🦋

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  • Still on track...

      31 May 2020
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    A wee update...Lucy was supposed to be back in clinic for one weeks treatment in Campbell, USA last week! Due to covid 19 travel restrictions this was put on hold. Travel back in now going ahead this time with her Dad for a week in July. Upon arrival back home to NZ two weeks quarantine will still be required. Then I will travel with her again for another visit in September.

    She is still on track with twice daily home intensive exercises and doing really well. Lock down made treatments easier with no time commitments or rushing around. Back to very early starts and some late nights again now though!

    Lucy is healthy and getting taller, creating some great strong Abs! 😁 Her core strength is fabulous. She manages to wear her brace for approximately 20 hours per day, 23 hours is her goal. Sleeping in it is challenging!

    Daily treatment continues, but adjustments to equipment & Brace are needed hence the need to get her back to see the doctors.

    We look forward to seeing how her spine looks very soon. 😊

    We really appreciate all of your support to date, given in so many different ways. All that is given is helping immensely to keep Lucy on this incredible path she has chosen to stand tall & stay strong.

    Thank you 💛

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  • Back home in NZ 😊

      3 March 2020
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    It's almost 2 weeks back at home. We have travelled with all the equipment! (AirNZ were great) The home garage is slowly transforming for very early am & varied pm therapy sessions daily.

    Lucy has a target to meet of wearing her brace 23hrs per day! Almost achieving 😊 not easy to sleep in though. 🙄

    Feeling challenged? Yes! Both of us in our own way on many levels. 😴

    We have a zoom video call with the specialists in USA tomorrow morning 5.30am to review.

    Lucy travels with her Dad back to clinic in May. I travel back with her again in September. All the gear travel's back & forth too!

    Thank you again we are so very greatful for your ongoing love & support in all ways. 😍

    It's been worth it all so far...long road to travel still. I will continue to keep you updated. 😘💛🦋🌻

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  • Half way through week 3!

      13 February 2020
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    Lucys spine is not just bent, but also rotated. Everything we do in clinic with the chairs, spinal weighting, brace, is designed to de-rotate the spine while straightening it. Nerve stretching is a massive part of this to also allow the spinal cord to stretch. This is not something I realized prior to coming here.

    Lucy is achieving great results 💛

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  • End of week 2 💪 you've got this Lucy 👍💛

      10 February 2020
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    It wasn’t all smiles! Thank goodness for these beautiful experienced kiwi girls support. They are 2-3 years into their program..awesome strong kids & parents 💪⭐️ Lucy was fitted for her first brace & lots of hard work, already creating brilliant results. In brace is resulting in a 40deg difference with spinal rotation. Wearing the brace and daily therapy will help shape, shift & hold. We had tears this week 😢 and also smiles 😊 feeling grateful for all your support 💛💛💛

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  • First week completed 😊

      4 February 2020
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    One huge week done. Lots of hard work & amazing progress. This is Lucys spinal correction chair being tweaked. This will come home with us for ongoing treatment twice daily.

    The doctors are explaining everything we do & hands on completely. 🙂👍

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  • Big Day!

      28 January 2020
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    First day of treatment for Lucy..starting with an MRI. Then full day of exercise & personalising spinal correction equipment. 3 weeks of hard work ahead! The future looks good for her though...💛

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  • Thank you 💛🦋🌻

      19 January 2020
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    Lucy & I want to thank you all so much for the support you are giving us is many ways. 💛🌻

    We leave NZ for the USA to start her first lot of treatment this Friday! ✈

    We could not do this journey without your help. It is really appreciated.

    We will update you as we go...💛🦋

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    • 20/01/2020 by Malcolm

      Good stuff. Go well Lucy. 😊