Back to page

Support for our boys brain injury recovery

  • Bittersweet progress

      31 October 2022
    Main image

    Recently we received some bitter sweet news in regards to Alex.

    Since we lodged a claim with ACC back in February 2022, a full investigation has taken place and we finally received the outcome lastweek.

    ACC have accepted Alex's birth brain injury claim. The 2 main grounds the claim was accepted was 1) the delay in performing an emergency c-section while Alex was Haemorrhaging in-utero, and 2) slow to get enough oxygen to him with the multiple intubation attempts over 65 minutes.

    While we are so pleased this means Alex will get better lifelong support, it also means that Alex would not have Cerebral Palsy and the difficulties he faces if it wasn't for the care he received in the days before and after his birth.

    While having ACC is a definite bonus for Alexs journey, it still won't cover any progressive treatments that are widely accepted and used overseas. We are bound by the same traditional therapies under MOH as ACC. This means we will have to continue to self fund any 'alternative' treaments, therapies, interventions etc.

    This includes the therapy intensives like the one he recently completed that saw him finally start to crawl last week!

    We would love to use this page to fund Alex's intensive therapies, with the goal of going to the NAPA centre in Australia for a couple of 3 week intensives in a year or so. This costs around 20k for one 3 week block but its supposed to be one of the best programs in the world.

    Any contribution towards this will go along way in making sure Alex can continue to have a excellent quality of life. Thank you 😍

      0 comments  |  Login to leave a comment

  • Therapy Intensive

      26 September 2022
    Main image

    I just wanted to update you all and let you know that your generous donations so far have meant Alex was able to complete his first 5 day therapy intensive recently. As a result he is now able to pull himself to sit on his knees. This is a major milestone for Alex as originally he was stuck on his stomach on the floor, unable to really interact with the environment around him. Now he can slither to where he wants to play, and prop himself on his knees to engage in a wider range of activities.

    We are so delighted with his recent progress thanks to therapy. However in order to keep the momentum going, the therapists have recommended he complete a 5 day therapy intensive program at least once every term. The intensive alone costs $750, and unfortunately there are no such services close to where we live so we are also having to travel to Hamilton and pay for fuel and accommodation etc. I have 2 other young children that need their father to be able to stay home and care for them while I take Alex to therapy. But as he has only been in his new job a short while, any leave he takes has to be unpaid. Working out the logistics of it all takes a significant toll on our family.

    Alex has also been really sick the last couple of months due to his underdeveloped lungs and immune system so its been a very tough time.

    Any support you can give us going forward will help ease this pressure and ensure we can keep Alex trucking along with his development etc.

      0 comments  |  Login to leave a comment

  • Cerebral Palsy it is...

      1 August 2022
    Main image

    Sorry it's been a while since our last update. Life has been hectic managing many medical appointments for Alex and daily life.

    I have found myself spending many hours researching, connecting with other CP mums, and advocating for Alex to make sure he has everything he needs.

    Alex was officially diagnosed with Cerebral Palsy last week and is now using DAFO's (dynamic ankle foot orthotics). This is to help lessen how much he points his toes.

    Alex is 17 months old now, 15 months corrected. And although intellectually he is making progress, his physical progress has become stagnant for now. He still only rolls one way, cant crawl properly or stand and walk like other kids his age. Alex gets very frustrated having to spend alot of time slithering around on the ground.

    It has been hard to get any support going forward, including financial support. ACC has requested an extension until the end of November 2022 to investigate our claim, and in the meantime we are still receiving no funding to support us on this journey.

    The health system is incredibly overloaded, and so we are having to source alternative therapies and supports, and self fund these ourselves.

    For example we have no funding to buy shoes that will fit Alexs new DAFO's, and to buy a pair of shoes that do is over $100.

    We are also self funding intensive therapy sessions that we have to travel to Hamilton for.

    We have heard so many good things about vibration therapy and would love to purchase a vibration plate for Alex. This will help loosen his stiff muscles making it easier for him to learn new movements.

    We would love to be able to make our new home accessible for Alex by building ramps etc.

    Since Alex has born, our family spends a lot of time isolating at home to avoid bugs as much as possible. Alex has a weakened immune system, but this is at times very isolating for us as we are normally active members in our community and used to attend the local playgroup and explore the outdoors. He has become very unwell and ended up in hospital a couple of times in his short life to date. Our new home is nice and warm, but it doesn't have a safe accessible outdoor area for Alex to explore and get the all important vitamin D. We are hoping to be able to access funding in the future to make such an area with an in-ground trampoline, a sandpit, and a swing (which he loves) where he can feel included in outdoor play with his siblings and friends.

    Alex should be ready to use a walker in the next couple of months so his physio is currently trying to apply for funding to buy one, as well as a standing frame. We are currently borrowing a standing frame which Alex loves to use to give him a different perspective other than being stuck on the floor. It also helps to strengthen his legs and encourage his feet to stay flat.

    We are truely grateful for any contributions made on this page to help us ensure Alex has everything he needs to thrive throughout this life journey he has been given.

      0 comments  |  Login to leave a comment

  • The waiting game

      28 May 2022
    Main image

    Thanks so much to everyone who has donated to Alex so far, we really appreciate it. We are still waiting to hear if Alexs ACC claim will be accepted, but in the meantime we are facing some new challenges the older he gets.

    Alex is awaiting an official diagnosis of cerebral palsy which will hopefully be confirmed at his next paediatrician appointmentat the end of June. It is apparent he has CP, but in order to give an official diagnosis they have to narrow down what level of cp he has and what type etc.

    He is 14 months old now and his mobility is still significantly affected resulting in his physio wanting us to purchase $400 compression tights for his hypertonic legs, a $1600 bath support, and start putting aside even more to buy him a walker and other equipment going forward. I am struggling to get my head around the process of applying for funding for some of these things, and none of it happens overnight...often there are long waiting times.

    Anything that has or will be donated will truely help out this little guy going forward.

    He is still his lovely happy self and we are confident he will continue to shine no matter what.

      0 comments  |  Login to leave a comment