cooper healey

    cooper healey – cooper the trooper

     

    Written by Leanne Maiden (Cooper’s Mumma)

    At 33 weeks pregnant with Cooper I realised I had not felt movement since the previous day so I went to the ante natal clinic in Joondalup for a check up. After a few hours of monitoring the sonographer advised that something was not right and that we needed to get the baby out ASAP! I was rushed down to King Edward Hospital for an emergency cesarean and that is when we discovered that our precious little angel had the umbilical cord wrapped around his neck 3 times! Cooper spent his first 5 days in the NICU (Neonatal Intesive Care Unit) hooked up to CPAP (Continues Positive Airway Pressure) whilst also receiving treatment for jaundice. Once our little fighter was breathing unaided he was transferred to the Special Care Nursery for further monitoring until he reached full term (37 weeks), was feeding independently and gaining weight. Throughout this time, which was also Jasmine’s (his older sister) first year of school, we had so much wonderful support from our dear friends and school mums dropping off meals and looking after Jasmine whilst Malcolm and I swapped shifts at hospital.

    Prior to Cooper being discharged we were given the news that just ripped our hearts out… our sweet darling was diagnosed with severe brain damage (PVL – Periventricular Leukomalakia). Obviously we had so many questions and over time we would discover the challenges that lay ahead for Coops and us along with his ever loving beautiful sister. We pulled ourselves together and realised we had to be strong and positive in order to make sure our Cooper had the best chance at a fulfilling, happy and relatively pain free life. It was also very important that we did not disrupt Jasmine’s life too much. And so our journey began… constant therapies, cocktails of meds, countless medical appointments and numerous hospital stays.

    After an extremely tough first 4 months, we then discovered Cooper was suffering from Infantile Spasms (a severe form of Epilepsy in infants). His brain was constantly firing and unable to absorb any new information. This caused so much pain and fear for him, which explained why he was always so upset. After a few weeks in hospital we managed to find some anticonvulsants which controlled his seizures, for the time being.

    We have now subsequently discoverd that Cooper has Cerebral Palsy Spastic Quadraplegia (rated level 4 out of 5 on the Gross Motor Function Classification System – GMFCS 4), Dystonia (involuntary muscle spasms) and a severe Cerebral/Cortical Visual Impairement (CVI).

    At this stage Cooper is non verbal therefore we use key word signs to communicate. He has developed his own clicking noise when asking for more food and he does an awesome lion roar!

    Coops wears splints at night on his wrists and now has his first pair of AFOs (Ankle & Foot Orthosis). Due to his visual impairment he is very sensitive to noise and requires constant comfort.

    He is on various medications to control his epilepsy, tone (muscle tightness), irritability, insomnia, reflux and constipation. He has Botox injections to relax his muscles which improves his tolerance during physio sessions and every day activities.

    Our days are now taken up with therapies and appointments so that we can give Cooper every opportunity to live life to the fullest. It is so inspiring to see how hard Cooper is working and our determined little fighter is getting stronger and stronger each day. This has all been possible because of the awesome group of therapists working with Cooper along with a fantastic support group of friends who help make our life so much easier to manage. It can be tough without family to give us a break however we find strength in each other and our beautiful children.

    There are days when my heart aches at the memories of the milestones Coopers big sister was hitting at the same age but I quickly snap out of it and remind myself of the great progress he has already made and each time Cooper learns something new it is just as important and special. He is one brave and persistent little fighter who surprises us every day.

    The love and bond Jasmine and Cooper have for each other is truly so precious. We are very proud of the caring and resilient young lady our Jasmine has become and are so grateful that Cooper will always have her to nurture and watch over him.

    Thank you for sharing this journey with us and supporting our family. We look forward to sharing all the achievements and memories that both our children will be creating in the years to come x

    Amy Litton - Speech PathologistDaisy Stirling - Physiotherapist